Journal History

Click here to go back to the main page.

Saturday, December 30, 2006 2:19 PM CST

This is going to be a quick update. It is with a heavy heart that I tell you all of my grandmother's passing yesterday morning around 10:00 am. She peacefully passed surrounded by my mother, father, Aunt Tina, and Uncle Rob. Mom said she just took one final breath and was gone. She was in no pain. Although it is difficult to let her go, she has been suffering for a long time and a part of me is happy to see her at rest. There is however that selfish side of me that wishes she could still be here with us. I am comforted by the fact that I know she had a wonderful reunion with her mother, husband, son, and of course my angel ^^Jordan^^. We will be heading to Illinois tomorrow to attend the visitation and funeral. The services are listed below. I believe any donations are going to go to St. John's Hospital Home Health services/Hospice and the Trinity Evangelical Lutheran Church in Nokomis. Thank you all for your prayers and support through this difficult time.
Love,
Carrie

Visitation:
Monday, January 1, 2007 from 6-8 PM
Dawson Funeral Home
Main Street
Nokomis, IL 62075

Funeral:
Tuesday, January 2, 2007 at 10:30 AM
Trinity Evangelical Lutheran Church
201 N. Pine Street
Nokomis, IL 62075

Wednesday, December 27, 2006 9:27 PM CST

I was supposed to head back to Raleigh this morning, but I am not leaving until tomorrow morning. Unfortunately, my grandmother has taken a turn for the worse. Her oxygen requirement has increased, and she is really uncomfortable. Mom and Grandma together made the decision to put her into hospice care. At least they will be able to make her comfortable and allow her to pass peacefully. Grandma made it very clear that she did not want to go back to the hospital. She wants to stay at Mom's house and be comfortable. This has been a very difficult decision and has been very hard on my mom. It has been difficult for me as well. My grandmother used to be so vibrant, but in the last two years, she has gone down hill. This has been nothing compared to her deteriation over the past few months. She has been in the hospital more than out in the last three months, and she is tired of fighting. I can't blame her, but it is hard to let go. My mother and I have done much crying this week. It is especially hard because this is the week of Christmas and my uncle Neal (the one who died of Hunters' syndrome) died on December 30th. I am comforted however by the fact that hospice will make her comfortable. She will soon be with her son, husband, and my sweet Jordan. I just keep praying for her comfort and healing. I realize at this point it will more-than-likely not be here on earth. I ask that you all please say an extra prayer for my grandmother's quick and painless passing. Also pray for my mother, as she is the primary caregiver at this time and is exhausted physically and emotionally. I know how she feels.

I did want to let you all know that we did have a merry Christmas. All of us (including grandma) went down to Angie and Luke's house for Christmas Eve, and we all spent a few days together. Grandma was able to see everyone and spend time with her kids, grandkids, and great-grandkids. Although she spent much time in bed, she was able to see everyone and was happy about it. I am thankful that we were all able to spend the holidays with her, since this will likely be the last one we have with her.

I did get a chance to go to Jordan's grave on Christmas day. Although it was a sad visit, I took a few pictures of how mom decorated it for Christmas. I will try to post those when I get home. Pray for safe travel as I head back to North Carolina tomorrow. Continue to pray for grandma's comfort and mom's strength.

Love,
Carrie

Sunday, December 17, 2006 10:18 AM CST

I know it has been a while since we updated, but it has been a stressful and busy month. At the end of November I drove to Illinois on an emergency trip. My sister, Angie, called me crying saying they took Grandma Glavish to the hospital by ambulance. She didn't know who anyone was, and the doctors were afraid she wouldn't make it through the night. I made my lesson plans for school, and I got in the car and drove. Luckily, my mother-in-law agreed to drive with me so I wouldn't have to be upset and by myself. Thank you Connie! Everyone should be so lucky to have a mother-in-law like you. I love you dearly. By the time I got to Illinois, Grandma was doing a little better, but she was still confused. I don't think she really knew who I was until the next day. She scared us all, including the doctors. They are amazed at the progress she has made, but they are still concerned about her lungs. She is requiring oxygen, and the micro-bacteria has destroyed even more of her lungs. She is at St. Mary's hospital in Decatur. She is staying in the extended care area. We don't know if she will be able to come home or when.

While I was in Illinois, we had an ice storm. My parents were without power for over a week, and I was unable to leave Illinois to come back to the warmth of North Carolina. When the ice melted and the roads were clear, I was happy to go back home to see Patrick.

When I got home, I had an e-mail from Dr. Kurtzberg saying she thought the appeal letter for the in-vitro got sent to the wrong address. I was heartbroken to say the least. I have been waiting for a second answer for four months only to find out that the letter was never received. After a really long cry, I sent the information to Dr. K. again and had her re-send the letter. I guess the waiting begins again. She did give us good news however. She said that all the medical bills that we have been receiving from Duke have been written off, and we will no longer be getting billed for the $168,000 that Duke says we owe them. That did make us feel a little better.

In light of all this, I finished the first semester of school this week. We had finals on Friday, and we finish with testing on Monday. My kids were ready to be done with school, especially my seniors. Although I will miss many of them, I am ready for break too!

We are both enjoying our jobs and are finally feeling as if we are recovering financially from all the events of the past four years. We are looking forward to being able to have a few dollars in a savings account. Wow, what is that?

On Thursday morning, I will be heading to Illinois to spend Christmas with my family. I will be home through the 26th and be heading home the morning of the 27th. This was a really tough decision. Patrick is unable to go with me because he only gets Monday off from work. We have not spent a Christmas apart since we met. I know that Christmas is a difficult day for both of us without Jordan, but I really feel I need to spend this holiday in Illinois with my grandmother. I don't know how many more Christmas days I will have with her. Despite my not wanting to leave Patrick, I think I need to be there. He understands and has encouraged me to go spend the holidays with my family. I am lucky to have such an understanding and compassionate husband. I love you Patrick! While I am there, I look forward to spending time with friends, family, and of course visiting Jordan for Christmas.

We are looking forward to a Merry Christmas, although it is always bittersweet, and a happy new year. We are praying that we are blessed with a healthy child in the new year. We are also hoping to buy a house and take a nice vacation together in the new year. We have many ideas and plans, but we know that we must follow whatever path God has chosen for us.

We wish everyone happy holidays. We hope everyone takes a moment to cherish time with friends, family, and especially their children. Be thankful for what you have been given. Take a minute to give to others if you can. Give your kids an extra hug and kiss.

Love,
Carrie

Wednesday, November 15, 2006 3:28 PM CST

Yesteday was my 29th birthday! My students threw me a party at school. They are the greatest kids. I have one student in particular (Rico Jones), who has touched my heart. He got all his classmates together to order pizza and get me a cake. They also brought me baloons and a card that all of them signed. It was very thoughtful and made me feel special. I had another student bring me Godiva chocolate and a pepsi. My kids know all my vices! They have truly been a blessing to me this year. I really feel like this is where I have been led. I am meant to be in this school with these children. I know I am making a difference and it feels good.

We still haven't heard anything from the insurance company. We were hoping that we would hear something early this month, but we haven't yet. I am going to try calling them soon. I can't wait for a written reply. I want to talk to someone who has medical knowledge and will listen to the appeal letter, not just throw it aside.

Since I last updated, my grandmother is doing much worse. She was in the hospital last week with pnemonia, and the micro-bacteria has invaded her lungs again. She has a destroyed vertebrae in her back, possibly from the bacteria (like Jordan), but the doctors don't really know right now. Her hemoglobin is also very low. All of these things are making her extremely weak. She was finally released on Friday, but she did not go back to her apartment. My Mom has taken leave from work to be her full-time nurse, and she has moved in with my parents. Grandma is on oxygen and has very little energy. When I talked with my Mom yesterday, I was scared. Although my Mom was trying not to sound too worried, since it was my birthday, I could hear the quiver in her voice. She is extremely concerned about my grandma's well-being. I ask that you all pray for her healing. Pray for knowledge for the doctors to be able to treat her. Pray for my mother, who I know is under terrible stress. It is hard to see the one's we love deteriorating before our eyes. I'm afraid that this is exactly what is happening to my grandmother. I spoke with her on Friday (her birthday) and again yesterday. There was a considerable difference in her voice. She was much weaker yesterday than Friday. I am worried about her. Please pray.

Love,
Carrie

Friday, October 13, 2006 8:34 PM CDT

I know all of you want to hear how my trip to Illinois went. It was wonderful. Mom and I went out and decorated Jordan's grave for Halloween. We put a mask on Elmo, and a little lantern that actually flashes. Check out the photos. Jordan really would have loved it. I saw many of my friends and even took a trip back to St. Teresa while I was home. It was nice to see everyone, and I always love getting spoiled by my Mom and Dad. I was able to spend some time with my sisters and niece and nephew too. I really enjoyed seeing all my family (that includes you Helen and Kurt). It was a nice, relaxing visit.

I have spent the rest of my break from school doing school work. I finally finished the senior graduation papers. Those were a joy! I am finishing grades and getting ready for a new quarter on Monday. Although I have had a good break, I hate to admit that I miss work. Really, I miss my students (I sure couldn't say that last year at this time). I'm glad I can this year. Things seem to be looking up for us. Patrick is not enjoying his job, but he is doing well and thinking about going back to school in January. I think if he gets a degree, he will be much happier. He just has to decide what he wants to be when he grows up.

We have also contacted the state adoption services for North Carolina, and they sent us a welcome package. We are going to become certified foster parents so that we can adopt a child through the foster care system. It may take a few years for us to get a healthy infant, but we figure we will try to keep all of our options open. We have also submitted an appeal to the insurance company to pay for the in-vitro. We should hear something within the next month about that. If we get a no this time, I will start making phone calls to the insurance company.

I will be 29 next month, and although that is not old, I am starting to feel that way. I really want to have a child or at least be pregnant before I am 30. I don't know what it is about that number. I know many women have children after 30, but for me, I just hear that clock ticking away. I am praying for good news from the insurance company, but if not, I will start thinking very seriously about the micro-sorting option in Virginia. Patrick and I have somewhat set aside that option for now because we would be limiting ourselves to only a girl, and she would have a good chance of being a carrier for Hunters. It is something we really have to think about, but it is certainly another option for a child.

We will keep you updated with any new news that we hear from the adoption agency and/or our insurance company. Don't forget (if I don't update before then) that Jordan's birthday is October 29th. It is hard to believe that he would have been 4 years old. Instead, he is celebrating his third Heavenly birthday. Please say a little prayer for us on that day and hug, kiss and love your kids extra. It will make you both happy.

Love,
Carrie

Wednesday, September 27, 2006 3:14 PM CDT

Thank you for the many messages in the guestbook. Days like yesterday are when we need to see those messages most. Thank you all for the many phone calls, e-mails, and guestbook entries. It made the day easier knowing we had so many people praying for us and thinking of Jordan.

It was a rough day. I made myself get out of bed and go to work, but I cried the entire drive. By the time I got to school I thought I had made a mistake by thinking I could go to school on the anniversary. I just kept telling myself that my students had to turn in graduation papers and needed me to be there. When I got to school, Ninon, a friend and fellow teacher, had left a rose on my desk with a very sweet card. She wanted to remind me of how strong I am and how much she was thinking of me. It really meant so much that she remembered and took the time to do something special for me. Then, my phone started ringing. Catherine, a friend and fellow teacher, called to tell me she was bringing breakfast and coffee to school, and we were meeting with Liz in her room for breakfast. They also took me to lunch, later that day. It was so nice that my friends did something special to support me yesterday. It really made yesterday more bearable. My students were all so sweet. The few that know about Jordan gave me hugs and asked how I was, and one brought me some chocolate to cheer me up. My students are just amazing! I really love teaching these kids this year. I am blessed by their personalities, humor, and kindness.

After school, Patrick and I went to our favorite spot at Duke Gardens and released a balloon for Jordan. We couldn't get and Elmo one, so it simply said, "I love you." We tried to stand in a spot that was free of trees, but it was difficult to get away from them, and of course the balloon got caught in the very top part of a tree. We just passed it off as Jordan bringing us a little humor to a sorrowful moment. We know that a wind came later and carried that balloon straight to Jordan's open arms. Either way, he knows Mommy and Daddy love and miss him.

Friday is the last day for the quarter, and I get a two week break. I am looking forward to going to visit Jordan next week when I go home to Illinois. My mom put a new Elmo doll out by Jordan's grave yesterday, so he is once again with Elmo. I don't think I told everyone that my parents finally moved to Decatur. They are really enjoying it, and I love the fact that they are close to Jordan. On a sad note, my grandmother is doing poorly again. My mother even said that she was glad I am coming home when I am. Mom says she is losing more weight (down to 92 lbs) and she doesn't have any energy or an appetite. I am really worried that she is just feeling so lousy that she is going to give up. Please pray that God give her comfort and strength so that she can fight whatever it is that is making her sick. If his plan is for her to leave earth, pray that God give her peace and comfort. I just don't want to watch her waste away and suffer. Please pray for Grandma Glavish (Jordan's "Grandma Great").

Love,
Carrie

Monday, September 11, 2006 7:14 PM CDT

It has been a busy few days. I had to take Patrick to the emergency twice last week for back pain. The doctors thought he had kidney stones, but come to find out he just severely strained some muscles in his back. They gave him some medicine, and he is feeling much better now, but I can't wait to see that bill. It is just one more thing that we don't need to deal with. We must have the worst luck. His insurance for the new job doesn't start for another 40 days. Great!

Other than that, the last several days have been really hard for me. I came to the realization a few days ago that Jordan has officially been gone longer than he was alive. That was a tough reality to accept. There are some days that I remember him so vividly. Then, other days I can hardly remember his voice; those days are the hardest. I am so afraid that as time goes on I'm going to forget little things about him. I don't want to forget a single thing. It breaks my heart. I know that all parents forget things as time goes on, and their children get older, but I have no new memories to replace the old ones. When those are gone, I have nothing left. I know I can never forget him completely, but it gets harder and harder to remember every detail vividly. Yet, there are memories of those last days of him in the hospital that I can't erase from my memory no matter how hard I try. Those are the memories that I don't want. Those are the ones that haunt me. On September 26th, it will be two years since my baby took his last breath. It's so unfair . . . I miss my baby. He was my perfect angel. I heard a song the other day that really captured how I feel some days. I thought I would put it on here.

Keep Praying for us, especially for the hard days.
Love,
Carrie

Novacaine by Green Day

Give me Novacaine
Take away the sensation
Inside my bittersweet migrain in my head
It's like a throbbing toothache of the mind,
I can't take this feeling anymore
Drain the pressure from the swelling
This sensations over whelming
Give me a long kiss goodnight
And tell me everything will be alright
Tell me that I won't feel a thing
Give me novacaine
Out of body and out of mind
Kiss the demons out of my dreams
I get the funny feeling and that's alright
Drain the pressure from the swelling
This sensation's over whelming
Give me a long kiss goodnight
And everything will be alright
Tell me Jimmy I won't feel a thing.

Monday, August 28, 2006 8:25 PM CDT

***Happy Birthday PaPa Mike!***

I haven't felt much like updating lately. I have been very busy with school, but it is more than that. I have been missing Jordan very much. My best friend, Emily, is pregnant, and a few other people I work with are pregnant too. Then a former teacher came to visit school today with her 10 month-old daughter whom she just adopted from China. Although I am happy for all of these women, I can't help but feel a pang of jealousy for them having what I want. Patrick and I have discussed our options somewhat, but we both really want to have another boy. That makes our options very limited. I guess we are going to wait to see what the insurance company says about paying for the in-vitro or at least part of it. We need lots of prayers. We know that when the time is right we will be parents again, but it is so hard to wait.

It seems I am overwhelmed with a need to be a mother lately. I use to be able to think about memories of Jordan and be happy about the time I had with him. Now I am so sad when I think about how happy he was. I think about how unfair it is that I was robbed of him. That we were both robbed. I think about what a wonderful father Patrick was to him. I remember waking up to giggling one morning at about 4:00am. Patrick had gotten up with Jordan at around 2:00am, and instead of going back to bed, they were both lying on the living room floor playing. I miss his laugh, both of their laughs. Jordan was Patrick's entire life and I lost a part of him when I lost Jordan. Don't get me wrong, Patrick is still a wonderful husband, and I love him dearly. It's just that I can see how losing Jordan has affected him too, and it breaks my heart that he is no longer whole. Jordan made us complete; now, there will always be a void and it is a cruel, cold, helpless feeling.

Despite this overwhelming feeling of loss that sweeps over us in waves on some days, we go on (even when we don't want to). Patrick is not loving his job, but he does feel important. It is a stressful job for him, but he is making it work. This is actually a great field for him because he is so good at problem solving, but he doesn't always have that confidence in himself. School is going well. I really do have some great kids this year. I had a former student stop by and see me today. He is working on his music career, and it is going well. He just got back from a concert in New Jersey, and he was on a local radio program promoting his new album. He came to tell me hello and see how I was feeling about staying at Southeast. He told me he was glad I stayed. When former students come back to visit, it really makes me feel good about what I do. It makes the hard days a little easier.

While things aren't easy, we have learned to lean on each other to carry us through. We have moved from "minute to minute" to "day to day" and looking forward to looking forward. Until then, we will continue to live, love, and pray that we are blessed with another angel that can stay with us here on earth.

Love,
Carrie

Monday, August 7, 2006 5:04 PM CDT

It is day 9 of school, and things are going well so far. I hesitate to even say that for fear of Murphy's law acting against me, but I think I just have really good kids this year. We have our open house for parents tomorrow, so it will be a long day, but it is nice to meet the parents of my students. I will teach the creative writing classes next semester which will allow me to have quite a bit more freedom in what I teach. I am looking forward to that.

Patrick is doing well in his new job. It is quite stressful because he walked into a job in which the person he is replacing did a poor job. In other words, Patrick is having to clean up a real mess that the other guy left him. Although he is somewhat stressed, he is doing well. I think once he gets these things under control, he will be fine.

I have really been missing Jordan lately. I think it is just this time of year. He got sick the evening of August 10th, got admitted to the PICU on August 11th, and he never came home again. I start to think of all the things we could have done differently and maybe we could have kept him healthy, but the truth is nothing would have changed the outcome. It may have happened in a different sequence, but I truly believe that Jordan was only meant to be on this earth for 1 year, 22 months, and 27 days. It doesn't make me any less sad that he is gone, but I know that we couldn't have done anything to prevent him from dying.

This is just a rough time of year for me and Patrick. It doesn't help that I keep seeing signs of babies everywhere. It makes me want another child so much. I keep getting samples of baby diapers and bibs and coupons in the mail. Last week I got some baby magazine and then a mailing from the new-life pregnancy center. It seems everyone I know has either recently had a baby, or is pregnant. I even have several students who are pregnant. It is just so easy for people. They take for granted that pregnancy and having a child is so precious. I want to be a mother again so badly, and I want to have a child of our own. Yet I want to have a healthy baby, and we can't do that (safely) without help. I did talk to a genetic counselor from Virginia (thanks Jennifer K.) who gave me some great information about Microsorting for female sperm. This would be the most natural option, but we could still possibly have a female child, who is a carrier and pass the disease to her children. Also, the procedure of sorting is 90ccurate, so we would still have a 10hance of having a boy and from that 50/50 on the boy being affected. This really is a 95hance for having a healthy child, but we're not sure how we feel about taking that risk. We are re-submitting a request for insurance approval for the in-vitro, so hopefully in a few months we will hear something about that. I will let you know when we decide something for sure. Right now, we are just discussing all options and trying to decide what is best for us and a new baby.

Love,
Carrie

Saturday, July 22, 2006 12:05 AM CDT

HAPPY BIRTHDAY ANGIE & PRESTON!

HAPPY BELATED BIRTHDAY TO CHERIE (July 13th)!

Well, Only 4 days until school starts, and wow! I am really busy. I think I am going to have a really good school year. I am looking forward to having my own classroom and teaching the creative writing classes.

Patrick has a new job. He is now an area manager for JaniKing, which is a janatorial franchising company. He basically inspects the work of the smaller franchises and makes sure they are doing everything correctly. It involves him driving all over the RTP area, but he is home every night, and we work similar hours. The best thing is that he has full benefits and is getting paid a decent salary with potential for commission. He has to wear a tie to work every day, so this is really helping with his self-confidence. When you look the part, you start believing it. I am so glad to finally see him feel as if he is a part of something worthwhile and important. I think he finally feels as if he has an "adult" job. He is treated with respect, and he feels good about himself. It has been a long time since I've seen him proud of what he was doing. It is a nice thing to see, and I am proud of him for it.

Other good news . . . Our friends Robert and Emily Ray are pregnant (Well, Emily is)! They have been trying for over a year to get pregnant. She was even on fertility drugs for four months. June was her last month of the fertility drugs, and she did not conceive. She decided that they were just going to wait. She started to sign up for school to go back and get her teaching licence, and found out she was pregnant on Thursday. She is only a few weeks along, but we couldn't be happier for them. CONGRATULATIONS ROBERT & EMILY!

On a less positive note . . . Khalita Jones, our friend from transplant, is not doing very well. She is seeking treatment at Duke, but the doctors are less than optimistic that this treatment is going to stop the aplastic anemia's progression. Khalita is not producing any cells in her bone marrow at this time. She is possibly facing a transplant, and Dr. K. is not sure if she can find a donor match. This is a very difficult thing to hear. Khalita is very close to my age, and is a fellow teacher. This is heart-breaking. I ask that you all say a big prayer for her that this medication will help, and she will not need to face transplant. You can go to her website and offer her words of support and encouragement. www.caringbridge.org/nc/khalita

We are still looking into options for the IVF and possibly adoption, but we haven't heard anything definite yet. Thank you to Jennifer Kershaw for the website information. I have e-mailed the doctor to see if they can give us any information or financial help with the IVF. We will let you know as soon as we hear something more.

Love,
Carrie

Monday, July 3, 2006 10:11 AM CDT

I know it has been a while since I updated, but I have been enjoying my summer break and haven't been on the computer much. I went to visit my parents in Illinois last week, and I had a great time. I was able to spend several days with my sisters, and we had a cookout with many of my friends at my Mom and Dad's house. I also got to see my god-mother and god-father and their kids, except Kelly, but I did talk to her on the phone. Karen- I really enjoyed talking to you too. I visited Grandma Glavish, and she still looks too thin. She is doing a little better, but she still has the bacteria in her lungs. She will be on the antibiotics for a while yet. I was able to stay in Illinois for 8 days this time, so I was able to spend quite a bit of time with Mom and Dad. I was sad to go back home, but I really missed Patrick.

He picked me up from the airport on Wednesday, and we went to Jordan lake to see his parents. They camped there until Friday, so we went out and had dinner and went swimming with them. It was a nice visit. They keep trying to get us to visit them at their place in South Carolina. We may do it next weekend or the one after.

I was able to change my insurance, but I was informed by my representative that they don't pay for in-vitro or any type of artificial pregnancy as he called it. Since this plan is a PPO plan, he said I did have a better chance of getting something like this approved, but it has never been done before that he knew about. Once again, someone has to be the first, why not us?

I have about three weeks of vacation left before school starts, and I am going to miss being lazy. I stay up late, get out of bed late, and get to read for fun. I don't know how I am going to get back on a normal schedule. I guess I will adjust when school starts again.

I have been helping my friend Ellen, Andrew's Mom, with her senior memoir. She wrote about Andrew's diagnosis with MPS III, and her journey through transplant. We have been working on it for about six months. She got the grade back on Saturday, and she got an "A". I am so proud of her. She really put her heart and soul into that story. Congratulations Ellen! Thank you for letting me be a part of the project.

I wanted to ask everyone to pray for our friend Kalhita Jones. She is up on 5200 and is not doing well. We met her when Jordan was going through transplant. She is my age and has aplastic anemia. She was supposed to go in last week to get a port placed, but she got too sick. Her latest bone marrow aspiration shows no cells. This is very bad news. The doctors are discussing a plan for her. She has been avoiding a transplant, but that may be her only option. Please pray that they can control her pain, make her comfortable, and get her well.

We hope everyone has a happy and safe 4th of July.
Love,
Carrie

Tuesday, June 13, 2006 10:45 AM CDT

I so wanted to come here with good news, yet once again I turn to this page in disappointment. We have heard from the insurance company . . . it was an emphatic no. We waited three months to hear that! Needless to say, I was extremely disappointed. The one thing I want in this world is to have another baby, and these people are refusing to allow that dream to happen. It is heartbreaking. I got a letter from the insurance company, and Dr. K. got one as well. Although she told us it would probably be denied the first time, she said we could appeal it. We thought . . .

Today I got an e-mail from her saying that this insurance company doesn't pay for infertility in any instance, so they will not pay for in-vitro at all -- under any circumstances. She says there is no reason to appeal it. My heart breaks once again.

All hope is not lost. We have an open enrollment period to change our insurance policy at work. One of the options pays for some treatments for infertility. If I change my policy, this might be the best way for us to get the procedure approved. Dr. K., in her motherly way, also said she was working on some other options for us. She is truly amazing. We will check into the new insurance and other options, and let you know what we find out. Please pray that all this works out and we are blessed with a beautiful, healthy baby. This is what I want more than anything, and Patrick is actually getting excited about the prospect of another child as well.

Love,
Carrie

Tuesday, May 23, 2006 10:38 AM CDT

Still no word on the in-vitro . . . HUMPH!
Patience is something I still haven't mastered. Hopefully we will hear something soon.

This year has been a difficult one for teaching, but as the year comes to a close I am feeling a sense of belonging once again. I have struggled with many of these students this year. There have been some really difficult kids to teach, but overall, it has been worth it. I guess that's what is important. At the end of the year, I can look back and know that I have accomplished something important.

Yesterday was a review day before my students take final exams tomorrow. I got a phone call from another teacher saying, "I have an emergency. I need you to come to my room now." I have a really well-behaved 1st period class, so I told them I would be right back (a big no-no), but I felt it was necessary because there was an emergency. When I got to that teacher's room, she ran out and said she would be right back. She returned about 5 minutes later and said she would tell me about the problem later. I went back downstairs, expecting my kids to be doing nothing or talking. Instead, my kids had a cake & flowers for me. It was all a scam to get me out of the room. My first period class of seniors had surprised me with a huge card, that they all signed, and the cake had a picture of me with the entire class that they had taken on Friday of last week. They also framed the picture in a nice, silver frame. I cried because I realized that I had gotten through to them. They all told me how much they enjoyed my class and were going to miss me next year. I signed their yearbooks and gave them all hugs.

That class made me realize that I do make a difference. For the first time since I lost Jordan, I feel I have a purpose -- that I am doing something worthwhile. These kids all have stories. They didn't grow up like I did, or most of my former students from St. Teresa. Most of these kids are minority, low socio-economic class, have real problems, and have parents that are at the very least uninvolved in their lives, and there is something about them that has touched my heart. I am feeling a void in my life being filled. Although I have hated parts of teaching this year, I have learned so much about myself and life in general. It is a huge compliment to me that these academic-level students took the time to plan something out to show their appreciation for my help this year. I really am going to miss this senior class, especially those kids in first period. I've nurtured them, corrected them, taught them, and learned from them. They truly are my kids, and I love them. I know Jordan had a hand in choosing those kids to be in my life, when I was really doubting my ability and the importance of teaching. I was losing hope, and they restored it. I will never forget them and will always adore them for showing me the place where I am supposed to be.

Love,
Carrie

Sunday, May 7, 2006 6:39 PM CDT

The Rainbow of Heroes walk went well. It was a very emotional day, but they had a record turn out. It was a beautiful day, and I was able to see so many familiar faces. I saw many of our transplant friends and even made some new ones. I was disappointed that Eleasha and Greg (Cody's parents) didn't make it to the walk. I did speak with Eleasha on Saturday, and she told me that she just didn't think she could handle it yet. I totally understand. The first walk without Jordan last year was very hard for me. I was able to meet up with Kahlita, Robin, and Leslie. Robin, Leslie, and I all went to lunch after the walk. It was nice catching up with them. I did see so many kids that reminded me of Jordan, and my heart just broke that those kids were going through so much.

I think back to all that we put Jordan through, the meds, the blood draws, the clinic visits, physical therapy, speech therapy, occupational therapy, the list goes on and on. I just can't believe I faced all of those things so easily. The decisions that we made on a daily basis that changed Jordan's life were made so easily. I can't believe that I was able to think so clearly and do the "right" thing - whatever that is. Through every step, I had a feeling that everything was going to be ok. I thought at the time that it meant Jordan was going to be ok, but I know different now. I know that God was telling me that we (Patrick and I) would be ok. We would survive. This is what was chosen for us, and we will learn and grow from it. Although there are still days that I ask why and am angry that I don't have Jordan to hold, I know that we are going to be ok. I have a beautiful angel watching over me. I was allowed to be his mother. What an honor. I miss my baby boy more than words can say, but I know that he is ok and no longer suffering like so many of the kids I saw this weekend.

I did talk to Dr. K. at the walk, and she still hasn't heard from the insurance company yet. When we hear something, we will let you all know. We are praying that the insurance company pays for the in-vitro. I also ask that you all say a special prayer for my friend Liz, who had an insemination procedure this week. Pray that she and her husband are blessed with a healthy child.

Love,
Carrie

Tuesday, May 2, 2006 7:09 AM CDT

We still haven't heard anything back from the insurance company yet about the in-vitro, but we are supposed to hear something this week. I am getting anxious to hear whether or not they will pay for the procedure.

The Rainbow of Heroes Walk is this weekend in Durham. I plan on attending and meeting up with many of the transplant families that we met during our journey with Jordan. It is always a very emotional day, but I am always encouraged by seeing the children that are doing so well post-transplant. This will also give me the opportunity to see many of Jordan's doctors and nurses.

School is going better now that the graduation project is over, and we only have 4 weeks until school is out. I have survived a very stressful year, but I still haven't made a decision about next year yet. I have a possible other opportunity, which would be a pay increase. But . . . I will have to wait to see where God is leading me.

Love,
Carrie

Tuesday, April 18, 2006 9:46 AM CDT

Happy Easter to everyone. Happy 5th birthday to Sheridan on Thursday!

Sorry it has taken me so long to write. I was hoping to hear something from Dr. K. about the insurance company before I updated, but we still haven't heard anything yet.

Ok, I know you all want to hear about my trip to Illinois. Other than missing my connecting flight and being stuck in the airport for 8 hours on Thursday, it was an uneventful trip. Friday morning, Mom, Angie, Cherie, Sheridan, & I went to the spa to have massages, pedicures, and cut and styles. It was wonderful. We relaxed and had a great time. Sheridan even got her toenails and fingernails painted and her hair curled, complete with sparkles. The ladies at the spa were wonderful, and Sheridan was so good. She was there all day, from 10:30 until 4:00, and she never complained about being bored. She was so good. Then we went down to Diana's in Nokomis and had dinner with Grandma Glavish. I put a new picture on the photos of all of us girls and Preston.

Saturday afternoon Mom and I met Cindy, Maggie, and Barb for lunch. It was so nice catching up with the ladies from St. T. Then Barb took us to see the new science wing at the school. It is awesome. After that, Mom and I went and decorated Jordan's grave for Easter. It amazes me that it has been 18 months since my baby became an angel. I miss him so badly. Although I wanted to stay longer, it was cold and raining, so we made the trip a short one. Check out the pictures of the Easter decorations.
We went and visited some family in Decatur and then had dinner with Todd Vohland. It was so nice seeing Todd again. We went and had drinks and met Patrick's sister, Kris, to celebrate her birthday. It was a busy day.

Sunday we went to church and then had people over to Mom's house for a little get together. We just relaxed, ate, and watched the race. It was a nice relaxing day. Monday morning I took Mom to work and visited with my friend, Amy Fandel in Springfield. I spent the morning with her and Olivia (her daughter). I enjoyed her antics so much. She talked and danced and played. It warmed my heart to see her. Mom took me to the airport Monday evening, and I needed a vacation when I got home. I was so busy the whole time I was home that I felt like I didn't really have much of a spring break.

We are anxiously waiting to hear back from our insurance company so that Patrick and I can make a decison about the in-vitro. On that note, I am going to say very little about the process. It seems that everyone wants to give me advice and tell me how the procedure will take place and what I will feel and go through. With all due respect, I don't think anyone can tell me what the procedure will entail, except my doctors. My case is very different from most in-vitro processes. Also, no one could possibly understand how it will affect me emotionally, as I don't know myself. I know I will have some guilt, but hopefully, at the end, we will have a happy, healthy baby to love and share our lives with. I can't wait to tell him, her, or both all about their big brother who will be watching over them forever. I appreciate all the support I have been given, and ask that you all continue to support us in whatever decisions we make. They are ours to be made.

Love,
Carrie

Monday, April 3, 2006 12:49 AM CDT

I ask everyone to pray for the family of Cameron Jorgenson. He passed yesterday morning in the arms of his mother and father. Please visit their page and offer words of support.
www.caringbridge.org/fl/camspage.

I had a wonderful time in Illinois, and I will update later to tell you all about it. Right now, I just can't.

Love,
Carrie

Tuesday, March 21, 2006 7:40 AM CST

The meeting with Dr. K. went very well. She explained the entire process to us and answered all our questions. She explained that the younger we are when we try the process, the better the chances are that it will be successful. It is a fairly long, envasive process. We still have quite a bit to discuss before we decide on when to start the process, but we are taking the first step. Patrick expressed his concerns about having another child to Dr. K. He is afraid of having another child, who is sick. He is also afraid that he will not be able to love another child as much as he loved Jordan. Dr. K. assured him that these fears will melt away the instant he finds out we are having a healthy child. She also emphasized the fact that we need to decide fairly soon so that the risks remain minimal. He is really starting to consider the in-vitro now. I think she did a wonderful job of calming his fears about the entire process.

Dr. K. discussed with us the insurance process. This is something we have delt with before. We had to get pre-approval for both of Jordan's transplants. The second was easy, but we went through a long process, before Jordan was born, to get approval for transplant at six weeks old. Dr. K. is going to write a letter to the insurance company explaining that this is not a fertility issue but rather a health issue for the child. Since we had so much medical expense with Jordan, she can make a pretty convincing argument for them to pay for the in-vitro process. She said that the insurance companies will usually deny it the first time, but after an appeal they will usually pay for the entire process. We hope this is true because the process costs about $20,000.00. This is not a bill that we want to think about, although it would be worth every penny. Patrick encouraged Dr. K. to go ahead and seek approval for the procedure. Dr. K. said this could take up to a few months.

Once the insurance company approves the process, we could start. Basically, I would have to be off birth control for about three months. Then I would take a month of fertility drugs. These would be oral pills or injections, depending on my response to the medication. I would have my blood drawn and hormone level monitored every day. When I ovulate, they will harvest the eggs, fertilize them with Patrick's sperm, and start me on hormones to make my body believe that I am pregnant. The cells will grow for 1-2 days until they divide into 8 cells. Once that happens, the doctors take one cell from each and overnight it to a lab in Detroit. The next day, the doctor in Detroit tests them for Hunter's syndrome and carrier status. We would find out that afternoon which embryos are affected, which are not, and which are carriers. We would then choose the ones we want to implant and freeze the rest. Dr. K. said that they will probably only implant two for me becaue there is a high risk that both embryos would survive, and we would have twins. The doctors would implant the embryos that day and continue me on the hormone therapy until my body started producing the pregnancy hormones on its own. From then on, it is a fairly normal pregnancy.

Dr. K. said that as long as I am young, the risks to me are very small and the rate of success is very high. Although she did mention that after age 34, the risk to me increases dramatically, and the effectiveness decreases greatly. Therefore, there is some sense of urgency to do the procedure sooner rather than later. The only risk to me right now is feeling like I have major PMS for the entire month while I am taking the fertility drugs. I think this is a very small price to pay.

She said that the testing is 98% accurate. They have done over 500 procedures and only 2 have been mis-diagnosed or the wrong embryo has been implanted. Neither of these cases were for an MPS disorder. She assures us that the Hunters mutation is much easier to find, and there is very little room for error. She is going to get me the exact statistics on the number of Hunters carriers have gone through this in-vitro process, and how many of those cases have been successful.

Patrick and I agree that we will get approval from the insurance company first, and then we will sit down and discuss when we want to start the entire process. I am hoping that we can start before the end of this year, but I don't want to rush Patrick into anything. More than likely, this ties me into another year at Southeast. I have already discussed this with my department chair, and I will teach different classes next year. If I don't have to deal with the senior graduation project, I would probably like it here much better. If it is for the sake of a healthy child, I can do anything for a year. I will suck it up and make the best of the experience.

Well, I am off to Illinois on Thursday, so I will write back when I return. Don't forget to keep Cameron in your prayers as he continues to decline and lose his battle against neuroblastoma. www.caringbridge.org/fl/camspage

Love,
Carrie

Monday, March 20, 2006 7:27 AM CST

A friend of mine sent this to me, and I wanted to share it with all of you. We are getting ready to go to our appointment with Dr. K. I will write tomorrow and let you all know how it goes.

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."


I miss my "brave little soul."
Love,
Carrie

Wednesday, March 15, 2006 9:42 AM CST

YEAH, only two days until spring break! I have survived the first quarter in the new school. Although I technically have two days left, they are mid-term testing days, so they don't count. I am so ready for Spring break! I am going to visit my Mom & Dad and everyone in Decatur on March 23rd. I am staying until Monday the 27th. I hope I will be able to see most of you while I am home. Happy birthday to Todd Vohland on Friday, and happy anniversary to my Mom & Dad on Saturday. Happy St. Patrick's day to everyone on Friday.

I wanted to update all of you on Cameron Jorgenson. He is not doing well at all. His parents have decided not to take any more action against Cam's cancer and are just managing his pain during his last few days here with them. He is at home and with his family, where he belongs. The doctors really don't know how much time he has left. It could be weeks; it could be days. Please pray for this family. My heart just breaks all over again with the thought of Michelle and Eric having to endure losing their son. Her journal entries are so positive and inspiring, but I know that deep down she just wants to scream at the unfairness and cruelness of it all. Please pray for the comfort of this family as they embark on the longest journey of their lives -- the journey without their son. www.caringbridge.org/fl/camspage

On a lighter note, I wanted to let you all know that I think I am going to teach next year, but I am certainly not going to do it in a Wake County Public School. I am looking into the private schools down here. St. Teresa spoiled me with small classes, a family atmosphere, structure, and support. I miss being in a "Christian" environment and having a special bond with my students. I think that is what I am missing so much here. There are a few private schools here that I know are hiring, so I will apply for those positions. I don't want to give up on something I loved so much over one bad experience. Although, I do not want to continue my experience in the public school setting. Despite everything, I have grown. I know there was a purpose for me being in this school. I know I have gotten through to a few students, but I feel so much of my energy has been expended without producing anything important. I want to inspire kids to reach their potential, not simply drag students through.

Ok, off my soap box. I will save all that for another day.
I will update after our meeting with Dr. K. on the 20th, or as soon as I get back from Illinois.

Love,
Carrie

Thursday, March 9, 2006 10:25 AM CST

****JUST A QUICK NOTE TO ASK FOR PRAYERS AND SUPPORT****
Cameron Jorgenson is doing very poorly, the MIBG treatment that he had last month is wearing off and his cancer is returning at a very rapid rate. Michelle and Erik are faced with a very difficult decision about persuing other invasive treatments or allowing nature to take its course. Please pray for this family. Pray that they can make the most difficult decisions of their lives. Pray that they have peace with whatever they decide. Please go to Cam's website and offer your words of encouragement and support.
www.caringbridge.org/fl/camspage


Entry from Monday, March 6, 2006

Patrick's birthday went very well. We had a surprise party for him at Play 2 Win. He had no idea that everyone was planning behind his back. He was really feeling down about turning 30, but we really made him feel loved. Many of his friends went in together to buy him a jump/break pool cue that he has been wanting, and I got him tickets for us to go see Jerry Seinfeld on Friday night. He is really excited about the show and had a great birthday. He had a little too much to drink and paid for it Sunday morning, but he had a good time.

School is still very stressful. I am not enjoying grading papers until ten or eleven every night. The paper load with teaching this senior graduation project is just killing all my free time, especially since I am working part time at the CPA firm again. I feel like I have no time to do anything, but the grad projects are due on March 14th, and I have all Spring Break to grade them. Although this will cut into my vacation, I am glad I will be able to take my time with grading them. I think I have decided not to teach next year. I am checking into some other options. I know I will miss interacting with the kids, but I won't miss all the rest. I just want to be able to spend time with Patrick and not think about work when I leave for the night.

I am getting excited about out meeting with Dr. K. on the 20th. She should let us know all about our options for in-vitro. I know that Patrick is not ready to start the process yet, but the fact that he is willing to go talk with Dr. K. is a good sign.

I am going to be visiting Illinois later this month too. I think I will be heading that direction around the 22nd or 23rd. I will probably stay 4-5 days, and then I will have to return and grade all those graduation papers. I hope to see many of you while I am home.

Well, I guess I better go start grading for the evening. I have procrastinated long enough. I will write you all and let you know how the Seinfeld show and meeting with Dr. K. go.

Love,
Carrie

Monday, March 6, 2006 4:33 PM CST

Patrick's birthday went very well. We had a surprise party for him at Play 2 Win. He had no idea that everyone was planning behind his back. He was really feeling down about turning 30, but we really made him feel loved. Many of his friends went in together to buy him a jump/break pool cue that he has been wanting, and I got him tickets for us to go see Jerry Seinfeld on Friday night. He is really excited about the show and had a great birthday. He had a little too much to drink and paid for it Sunday morning, but he had a good time.

School is still very stressful. I am not enjoying grading papers until ten or eleven every night. The paper load with teaching this senior graduation project is just killing all my free time, especially since I am working part time at the CPA firm again. I feel like I have no time to do anything, but the grad projects are due on March 14th, and I have all Spring Break to grade them. Although this will cut into my vacation, I am glad I will be able to take my time with grading them. I think I have decided not to teach next year. I am checking into some other options. I know I will miss interacting with the kids, but I won't miss all the rest. I just want to be able to spend time with Patrick and not think about work when I leave for the night.

I am getting excited about out meeting with Dr. K. on the 20th. She should let us know all about our options for in-vitro. I know that Patrick is not ready to start the process yet, but the fact that he is willing to go talk with Dr. K. is a good sign.

I am going to be visiting Illinois later this month too. I think I will be heading that direction around the 22nd or 23rd. I will probably stay 4-5 days, and then I will have to return and grade all those graduation papers. I hope to see many of you while I am home.

Well, I guess I better go start grading for the evening. I have procrastinated long enough. I will write you all and let you know how the Seinfeld show and meeting with Dr. K. go.

Love,
Carrie

Tuesday, February 21, 2006 11:03 AM CST

Cam is doing better. Thank you for all the prayers and well wishes for him. He is not out of the woods by any means, but he is doing better, and that is all his family can ask for.

School is not really going any better. The more time I spend there, the less time I want to be there. I am having trouble getting up and going to work every morning. It is that bad. I am just not into teaching anymore. I am not sure what I want to do next year, but I'm sure I don't want to teach at Southeast. I may teach, but it won't be here. I am saddened that I have lost the love for teaching, but I have. I always told myself that if I didn't enjoy it anymore, I wouldn't do it. I guess that is just where I am.

I have been having a hard time the last few weeks. I have been extremely emotional. I guess part of that is because I am unhappy with my job at Southeast, but I have really missed Jordan too. I have been thinking so much about having another child, but with that I feel guilty. I feel that I am trying to replace Jordan. Logically, I know I can't replace him, but I do want to replace that void that I feel in my life. I know I want to be a mother more than anything. It is difficult to wait until Patrick is ready for fatherhood again. We are going to speak with Dr. K. on March 20th about the invitro process. She has given us a little information on pre-implantation testing, and we want to know more. We need to know about the risks and possible outcome. We need to get all the information we can before we make a decision.

Before I go, I want all of you to wish Patrick a happy birthday. He will be turning 30 on Sunday, February 26th. He is feeling kind of old, so make sure you leave him a message to cheer him up.

Love,
Carrie

Tuesday, February 7, 2006 1:47 PM CST

***I forgot to include Cam's website www.caringbridge.org/fl/camspage ***

I want to ask all of you to pray for Cameron. He has neuroblastoma and has been fighting for so long. We met Michelle and Cam at Duke before Jordan had his transplant. Michelle couldn't believe that Jordan was so young and innocent and had to go through transplant. She kept saying how brave Patrick and I were to make that choice for Jordan. Now she is the one who has to be so brave for Cameron. Cameron's cancer is back again. He is undergoing a very experimental and invasive treatment right now. The doctors just discovered tumors growing into his skull, threatening to invade his brain. I know that Michelle and Erik are scared to death for their precious boy. This treatment is their last hope to save Cam's life. Please pray that this treatment works. This family needs your prayers!
Love,
Carrie

Wednesday, January 25, 2006 11:07 AM CST

I know I haven't updated in a while, but I have just been really busy with my new job at school and working for the CPA firm too. Preston is doing much better, and despite a few minor glitches with his lines, my sister is doing a great job taking care of him. I know she was really stressed at first, but she is becoming a natural. She has a set schedule for the meds, and she is becoming more comfortable with his line care. Thank you to everyone who has left messages, sent e-mails, and called to show your support. I know Preston is feeling much better and my sister and brother-in-law appreciate all the support that you have shown.

School is going well. It is quite an adjustment from the alternative school, but I guess I like it. It is really hard for me to get back to the feeling that I once had concerning teaching. I use to really like getting up and going to school because I was excited about what I was doing. I just haven't felt that since I lost Jordan. There are some times that I start to see a spark in a student, and it makes it worth-while, but all the other "crap" (for lack of a better word) that I have to deal with besides teaching, makes it much harder to be excited about my job. Maybe it is the fact that this is a big school, and I don't have that community atmosphere, but I just don't "love" it like I use to. I still like it, I just don't "love" it. I guess it is hard to explain. I sometimes wonder if I will ever "love" anything like I did before. It's just not the same without Jordan. Life changed when I saw him for the first time, and it changed again when I saw him for the last. My heart has been broken so many times that I just don't know how much I have left to give to these students. If I can't do that, why am I trying to teach them anything? I don't feel like this everyday, but the past few days I have. I guess I'm just questioning what I am meant to do. I really want to do something to help families that were in my position with Jordan. Maybe something will come along. I know that God has a plan for me, but I am so impatient waiting to know what that is. In the mean-time I will finish this school year and see what happens.

Everyone has been asking about the puppy. She is doing very well and getting much bigger. She is still not one-hundered percent house-broken, but she is doing much better. We are also getting better at recognizing when she needs to go out. Someday, when I am not so busy, I will post some pictures of her.

Carrie

Thursday, January 12, 2006 9:54 AM CST

I wanted to let you all know that Preston is home from the hospital. He is doing much better. I have copied the e-mail that my sister sent out to friends and family to update them on Preston. It is attached below. School is going well. I am a little overwhelmed, but that is a whole other story, which I don't have time to go into right now. The puppy, Piper, has already doubled her weight and size and is doing much better with housebreaking.
Love,
Carrie

This is the update from my sister Angie:
Sorry I haven't updated sooner, but it's past 11:00 on Friday night and I'm finally able to sit down at the computer for a few minutes before giving Preston his midnight med...First I want to thank everyone who has been praying for my little man, I know those prayers are working and he's on his way to feeling better...all the e-mails, cards, phone calls (sorry I haven't got to return them all), etc. have been overwelming. Thanks so much!!!

After a few days in the hospital, we were finally able to bring Preston home Thursday evening. Since the CT scan that he had showed that the infection had invaded the orbit of they eye, they had to hospitalize him on IV meds and I won't go in to all the crummy stuff that my poor little boy had to go through, but I'm sure you can all imagine how terrified he was - diaper changes are now even a chore as he tightens his butt cheeks and thinks about the thermometer (I've tried to reassure him none of that will be going on here)...the first night we were at St. John's, he pulled out his IV at 2:00 a.m. - so down the hallway he went to have it replaced and of course they blew two veins trying to get it in but finally got it. (I made Luke go this time as I was about to lose it) They still haven't received all the cultures back yet, but the most likely cause of the Orbital Celulitus (soft tissue infection of the eye orbit) was caused from a sinus infection. Because they asked me later on if he could have been scratched by a cat, (and he had) they decided to also test cultures for that bacteria as well. (I guess cat scratches and bites are the cause in a lot of cases) anyway he is responding well to the cocktail of IV meds and steriods the infectious disease doctor put him on and his eye looks pretty much back to normal on the outside. In order for him come home, we had to have a pic line placed in his chest so that we could administer at least 3 weeks of IV meds at home, luckily they only sent us home with one strong antibiotic but two very nervous parents - to all my nursing friends and family I give you credit to be able to do this, but it's just not my thing and I am freaking out with it. So far I've dropped two tubings on the floor while trying to place the cap on and of course contaminated it..So then I have to start over with new tubing. Luke is pretty good at it, and I'm slowing getting the hang of it and we have him on a schedule now to receive his doses at 6:00 a.m., noon, 6:00 p.m. and midnight. The home health nurse is awesome and being very patient with me. I wish she could be here everyday, but most likely just once or twice a week to change his dressing. This is a working mom & dads nightmare, but I'm sure we will figure it out soon. I feel like a wimp considering everything my sister went through with Jordan's lines. She spent like 18 hours a day with all of his meds....This would be a piece of cake for her! (Thanks Carrie for the pep talks, I love you)

Preston's repeat CT scan showed improvement, so I hope that with the next 3 weeks of antibiotics that it kills this stuff and we can have the pic line removed - it's not the best thing for a curious, climbing toddler. Little miss Sheridan has been great, she has really missed her brother and worried with the rest of us - I hated being away from her. On top of us being worried about Preston, Luke's mom had brought Sheridan, Luke's grandma and aunt up to see him on Wednesday and when they left the hospital they were rear ended - thank God everyone was ok - they did take Luke's aunt to Memorial for whip-lash - she's fine. But I was so worried that Sheridan was hurt and should she come to the ER to be checked out...but everyone, including her assured me not to worry that she was fine just a little scared.....Then I must have caught a bug from the hospital because I was sick all day yesterday, vomitting..yada... yada...when it rains it poors - I can only hope that 2006 will only get better from here on out right? All the stress of worrying about my kids, job, messy house, administering meds, etc. have just about taken their toll on me...I'm so lucky to have a great husband (most of the time anyway.....ha!) who is an awesome dad and helps me every step of the way.......I believe Preston is on the road to recovery and is certainly showing us that he is feeling better. If the cultures come back showing something funky and the treatment needs to be altered, I'll let you know, otherwise since I didn't get any Christmas Cards out this year I hope everyone had a great holiday and wishing you all a HEALTHY New Year! Thanks again for all your compassion and concern. It really means a lot to us.

Love, Angie, Luke, Sheridan & Preston

Thursday, January 5, 2006 11:40 AM CST

I wanted to update everyone and let them know that Preston is doing better. He is still in a step-down room at St. John's hospital is Springfield. That is where Jordan was when hospitalized in Illinois. He had a pic line placed yesterday. It is similar to the central line that Jordan had, but it is not meant for long-term use. It is more durable than an IV especially since Preston is very mobile. He already pulled out an IV, and since he will be on IV antibiotics for several more weeks, the pic line will allow him to go home. He may actually be able to go home today. My sister Angie is very nervous about learning how to administer meds to Preston and do the line care, but I have assured her that she will have no problem with this.
This has really had me stressed. When my Mom called to tell me what was wrong with Preston and Angie told me about the pic line, it just hit a little too close to home. I cried and cried for my sister having to endure just a little bit of the fear that we did with Jordan. I'm sure she thought about Jordan during this time too, and it only frightened her more. I want to thank you all for your many thoughts and prayers for Preston. Like I said, he is doing much better and may even be able to go home today. He will be on IV medications for several more weeks, but it could be much worse. The second CT scan should come back today and that will tell them if the antibiotics are working. I will update more when I have more information.

Love,
Carrie

Monday, January 2, 2006 8:34 PM CST

I know it has been a long time since I updated, but I didn't feel much like updating during the holidays. We really have had so many things happening that I just couldn't deal with it all. The biggest thing is I need you all to stop and say a prayer for my sister's son, Preston. He was taken to the emergency room last night and admitted into the hospital. He was running a 102 temp and his eye was very swollen. It kept getting worse, so Angie became very concerned and took him in. It turns out that the doctors believe he has a very serious infection. She called it pari-orbital celulitis.(pardon my spelling) The biggest concern is that they don't really know what is causing the infection and if it infects the eye muscle, it could cause damage to his vision. They have him on two very strong antibiotics (both of which Jordan was on), and they have called in the infectious disease doctors to assess his condition. I did talk to Angie this afternoon, and he seemed to be doing a little better. I ask that you all please pray that the antibiotics do the trick and Preston will be able to go home quickly. It kills me that I can't be with my sister and brother-in-law right now. I know how scared they are for Preston.

OK, now for other not-so-bad news. Patrick and I enjoyed our visit to Illinois. It was a very uneventful drive to Illinois this year, and we were thankful for it, after the snowstorm last year. We spent only a few days there, and it just wasn't enough. We went by Jordan's grave and Mom decorated it really nice for Christmas. Elmo is wearing a santa hat and he even has his own Christmas tree. It was a difficult day, but we were glad we went to see Jordan.

Since I have been bugging Patrick about wanting another baby, he got me a puppy for Christmas. I guess he figured that would keep me from harrassing him about starting the in-vitro process (it might for a little while). Her name is Piper, and she is a lab/retriver/plot hound mix. She is black with brindle paws and muzzle. She is beautiful and very playful. She chews on everything and is having trouble with the whole house-breaking thing, but I love her. She loves to snuggle right in my lap, which is fine for now because she is only 3 months old. We'll see how much I like it when she is as big as me.

I also have great news on the job front. I was offered a position at Southeast Raleigh High School and accepted it. I actually start tomorrow. I am excited about the opportunity to teach in a Wake County Public School. Southeast is a good school, and I really like the faculty and staff I have met so far. It is a really large school, so It will be an adjustment, but I am so happy to have benefits again. Richard Milburn High School was sad to see me go, but they totally understand that I have to do what is best for me and Patrick. I really hated to leave my students, but they all took it fairly well and even gave me a little going-away party. It was really sweet. There were many tears shed, but I am glad to be moving on in my career. In a few weeks, I will also be working part-time evenings for Jim Black. He is one of the partners in the CPA firm in which I worked last year. He wants me to come in and do some admin work for him 10-15 hours a week during tax season to pick up some extra spending money. I thought it would be fun, since I really miss them. I won't be answering phones or working the front desk this time, so it will be a little more challenging and maybe I won't be so bored with the work this time. He is also paying me more, so who can complain?

As you can tell from the novel I just wrote, there has been so much going on. Congratulations to Heather and Shad Mallady on their baby girl. She was born on December 30th, and she is adorable! Also, Danna and baby Makayla were able to go home for Christmas and both are doing very well. I want to thank everyone who wrote messages in the guestbook over Christmas and New Years. We appreciate the well-wishes, especially during the difficult days. Please keep my sister's son, Preston, and their family in your prayers as they continue to run tests and treat his infection.

Love,
Carrie

Tuesday, November 29, 2005 9:41 AM CST

I want to start by thanking everyone for praying for precious Makayla. She is off all breathing machines and doing well. Mom and Dad are doing better too. Thank you all for praying for this precious baby girl. I know Danna and Keith are overwhelmed, and your prayers are helping them so much!

Thanksgiving went well. Patrick and I had a change of plans. Since Makayla was in the hospital, we didn't go to the mountains for Thanksgiving. We were invited to spend Thanksgiving with Robert Ray's (Patrick's best friend) Parents and family. We had a wonderful time and we want to thank them for allowing us to share Thanksgiving with their family.

I haven't really written about anything important in a while, but that is because it has been hard to really write about my feelings. I think some days it is just easier to ignore all the pain I feel. Sometimes when I least expect it, it all comes pouring out. Lately, I have been really busy, especially trying to help Robert and Emily with their new pool hall. Since I haven't taken any time for myself, I find my tears pouring out for no reason at the oddest times. Every song I hear on the radio causes me to sob, and then I laugh at myself for crying like an idiot over a song. I know it is all part of the grieving process, but when does it end? I guess the answer is never.
I have also been having lots of dreams about children. I have dreamed about my friend Emily having a baby boy named Kyle. I have dreamed about children I know and children I've never met. I even dream about Jordan from time to time. Every time I wake from one of these dreams, I have a compulsion to have another child. There is a part of me that just aches to hold another baby in my arms. I know that part of that is my need to have Jordan once again, but I know that part of that is my need to be a mother to another child. I am envious of every pregnant woman I see. I am angry with every one that I see smoke a cigarette or say she's sick of being pregnant. I just want to shake the hell out of her and tell her to enjoy it and cherish it. I want to scream, "Put that freakin' cigarette out! You are pregnant! You are harming your child!" No one understands. No one gets it. Maybe I am over-sensitive. Well, I know I am, but why can't people see the bigger picture without having to experience the heartache that I have?

Love,
Carrie

Thursday, November 17, 2005 9:50 AM CST

****UPDATE****Friday November 18th*****
I NEED EVERYONE TO PRAY! The bridges (Mike and Connie's best friends) daughter Danna had her baby girl at about 5:30 yesterday evening (2 months early). She had to be taken by emergency c-section because of toxemia. Mom is doing fine, but 3lb 12 oz Makayla Noelle King is on an oscillator. I know how scary that is. The doctors are hopeful, but she can sure use your prayers. Also pray for Keith and Danna as they hold on to hope that their baby girl will be fine.
*********

Well, I was hoping to write and tell you all about the wonderful grand opening, but unfortunately our bad luck rubbed off on our best friends. Robert didn't get his liquor licence and with Friday being a holiday (Veteran's Day), he didn't get it until Monday of this week. He went ahead and opened on Tuesday and will have his grand opening tomorrow night instead. It is a week late, but it did give him some extra time to work out some of the bugs before the grand opening. The place looks really great and we are hoping to have a huge turnout for the opening on Friday. For those of you who didn't read the last journal, the place is now called Play 2 Win and it is at 415 Chapanoke Road in Raleigh. He is open at 1PM, so anyone who is close should come out on Friday evening. He is going to have a drawing for a pool cue and some other cool stuff too! If you get a chance, go check it out!

I had a fairly happy birthday on Monday. I of course missed Jordan very much, but I made it through the day. I did break a bracelet that my sister gave me for Christmas that had Jordan's name on it. I was so upset. I cried until Patrick found all of the beads so that I could put it back together. I don't know why I cried so much over breaking a bracelet, but I guess it just meant so much to me since it was a gift from my sister. It also had Jordan's name too, so I was really upset. The good thing is that I was able to get all the beads so that I can put it back together again. Anyway, other than that it was a good day. Thank you to Mike and Connie for the clothes, and Mom & Dad and Grandma Glavish for the cards and money! I am going to do something special for myself.

Thank you to all who have checked in and signed the guestbook. I will try to update more often and let you know what is going on.

Love,
Carrie

Wednesday, November 9, 2005 9:03 AM CST

Things have been super busy around here. Our best friends, Robert and Emily, are opening the new pool hall on Friday (11th), and we have been there every night all last weekend and this week trying to help paint and clean. I am going to work part-time as a waitress and bartender for them until they can hire enough staff. We are hoping that the grand-opening on Friday goes really well. If anyone is in the area and wants to stop by, it is at 415 Chapanoke road in Raleigh. It is in the building that used to be Katie's Cues. It is now going to be called "Play 2 Win." We are so excited for them and hope it will be a huge success.

School is going really well. I now have 14 students, and some of my classes are starting to feel as if they are real classes instead of tutoring sessions. I feel as if I am really getting through to some of these kids and am making a difference. It is so nice to feel as if I am a part of something important.

Patrick and I are going to be visiting Illinois for Christmas, but will spend Thanksgiving in the mountains again this year. When we decide when we will be home for Christmas, I will let everyone know. We are going to try to meet up with some of you. It really just depends how long we will be able to visit.

That is about all that is new around here. I will update next week and let you all know how the grand-opening goes.
Don't forget to sign the guestbook and let us know you checked in on us.
Love,
Carrie

Wednesday, October 26, 2005 6:50 AM CDT

I know it has been a while since I updated, but it's been hard to update this site lately. Thank you to everyone who tried to help me figure out the name of the song I heard on the way to the Jog for Jordan. It was the Kenny Chesney song, "Who You'd Be Today." I will post the lyrics at the end. It is amazing how these song writers can put in words exactly how I feel.

Patrick and I celebrated our 5th wedding anniversary on Friday the 21st. We went out and had a nice dinner and just spent the weekend with each other doing nothing. Sometimes that is the most fun. Patrick and I really didn't feel much like celebrating. It is so hard having our anniversary so close to Jordan's birthday. Speaking of . . . I really want to do something special for Jordan's birthday on Saturday (29th), but I haven't really figured out what to do. I know I am going to release some balloons at 3:33PM (EST) because that is when Jordan was born. If anyone wants to send a balloon to Jordan at that time, please feel free to release one in his honor. If anyone has any other suggestions on how to honor Jordan, I am open to new ideas. My creative side has been dormant lately.

Everyone has been asking how school is going, so I thought I would give you a quick update. It is going pretty well. I expelled a student on Friday (yes, my anniversary). He told me he was in a gang and I had to turn him in. I felt bad that this student didn't make it through the school year, but after I heard that this is his third time at this school and the third time he has been expelled. Other than that, I am enjoying my job. It is tons of work having four preps (one for each grade level), but I hope it will pay off and allow me to get a really good job in a Wake County public school next year.

Well, I will leave you with the Kenny Chesney song. I warn you all that it is sad.
Love,
Carrie

"Who You'd Be Today" by Kenny Chesney

Sunny days seem to hurt the most
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughin' in the rain
Still can't believe you're gone

(Chorus)

It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I been through
Just knowin' no one could take your place
Sometimes I wonder
Who you'd be today

Would you see the world, would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Somedays the sky's so blue
I feel like I can talk to you
And I know it might sound crazy

(Repeat Chorus)

Today, today, today
Today, today, today

Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know
I'll see you again some day
Someday, someday

Thursday, October 13, 2005 8:46 PM CDT

I know everyone really wants to hear how the walk went. I'm sorry I haven't updated, it's just been busy around here. The walk went better than we thought it would considering that it downpoured all day. We had more runners this year than last, but we had very few spectators. We actually raised less money because there were fewer people there. I guess the weather just put a damper on the walk (literally)! Thank you to everyone who made a donation of cash or a prize for the drawing! It was a sad day as we remembered Reese and Jordan, but we are so glad that we are doing this walk. I know that Jordan and Reese were with us on Saturday. I know Jordan was with me Friday night as we were driving to Winston-Salem. I heard a song on the radio, and I have to figure out who sings it. Anyway it was about a man who lost his son way to early. It was so sad. Mom and I were talking, and tears were filling my eyes and I just had to stop talking and listen to the song and cry. Sometimes it just hits me all at once, but I know that Jordan is happy and healthy playing in God's garden. Ok, on to the walk . . . If you were unable to go to the walk but would still like to make a donation, please send your checks payable to the National MPS Society to me at 1313 Camargo Lane, Raleigh, NC 27604!

We still had a good time, and I was so glad to finally meet Robin Tucker, Leslie Phillips, and the Bivins family. The Bivins's son Nathan was just diagnosed with Hunter's syndrome and he will be ten this week I think. Happy Birthday Nathan! We probably overwhelmed them with information about MPS and names of resources that they can use. It was great to have my Mom here for the walk, and I was so sad to see her leave on Monday. She is probably not in a hurry to get on another plane to come see me again though. Both the flight here and back to Illinois were delayed, and she spent a third of her trip in the airport. Thanks for coming Mom. It meant so much to have you here. I love you!

Well, school is going well. I like most of my students. I have one who really challenges me, but for the most part we understand each other. I just have to keep him super busy or he wants to talk instead of work. Since he is the only student in that class, he just wants to talk to me. It is hard keeping him on task, but I continue to try. The rest of my students seem to be adjusting to life in a different school, and for the most part seem to be willing to work hard to stay out of trouble. I have been warned that not all my students will be this willing, but I am enjoying the ones that want to learn while they are here.

Shawn Samuelson is coming to stay with me tomorrow. I am so glad. Because we were doing so much for the walk and she had 3 kids with her last week, we didn't have much time to just chat and hang out. She and I are going to a walk for Maddy Wigglesworth (MPS I). It is going to be in Morrisville, so it is not far from my apartment. You can visit her run website at http://home.nc.rr.com/rtpformaddy/
I hope Shawn and I can catch up on a little girl time before she moves to Germany for 2 years. That is way too long for us to be apart! Oh, she and Steve found out they are having a little girl and as far as the doctor can tell, she is completely healthy. We pray that there is no MPS and just a happy, healthy baby girl!

Well, I better go off to bed so that I can deal with all my little angels in the morning. I will try to post pictures from the walk soon. Thanks for checking in on us, and don't forget to sign the guestbook.
Love,
Carrie

Friday, September 30, 2005 1:02 PM CDT

****Added a picture of the Elmo my Mom and Dad took to Jordan on Suday****

What a week. We are trying to get everything ready for the Jog/Run next weekend, and I have gotten some great things from people. Thank you to Jill Schwab for the scarf. It is beautiful and will be a great item for the raffle. We also got a framed picture from Don and Stephanie Vaughan. Don took the picture, signed it, and had it framed to use as a prize at the Jog/Run. It is beautiful and I hope I don't "accidently" forget to bring it to the walk. Just kidding. Stephanie also made a bracelet for me and a key chain for Patrick which has Jordan's name as well as mine, Patrick's, and Jordan's birthstones. She also added some red beads for Elmo. I will wear it to the walk. Thank you both. We also received some cards this week from Cathy & Buster, Nanny Jan, Butch, and Aunt Nee Nee, Carol Burgess, Mike and Mariam Mitchem, and lots of e-mails with well wishes. Thank you all so much! You have no idea what each one has meant to me. Having the support of friends and family through the hard times is something that is priceless. I also know that some of you have sent some donations for the walk. Thank you all so much. If you still want to make a donation, you can send them to the address below. Even if we get them after the walk, we can still donate them in Jordan and Reese's honor. It's not too late!

I survived my first week of my new job, but it is going to be quite the challenge. It is always difficult starting a new job, but we have very limited resources in this school and these kids are really far behind in their work. I can only try my best to get the kids prepared for the end of year tests and to go on to the next grade level. I am also now teaching in a block schedule, so I have to adjust my teaching style a bit. It seems to be working well so far. I only have four students right now, but we are getting three more on Monday. I am told that I will steadily get more students throughout the school year. It makes record keeping a little more difficult, but I think I will manage. I am glad to have my first week of teaching under my belt and am looking forward to the weekend so that I can relax.


This week has been even more stressful than we imagined. Many things have happened this week that just added more tension to our already tightly stretched nerves. On Monday night we received a phone call from our realtor stating that we had to come up with $4,000 in order for our loan to go through. We had just had enough. We have been asked for pieces of paperwork, verification of employment, copies of rent checks, pay stubs, and bank statements. We complied with all of those requests and then we were asked for proof that we sold our house instead of filing it in our bankruptcy, so we had to get a copy of all our bankruptcy paperwork as well as the HUD statement from selling our house. After all that work and verification of information, our loan officer said that the lender would not work with someone who has had a bankruptcy and a foreclosure. I tried to explain to her that we never had a foreclosure on our house. We sold the house and therefore the debt was paid. I even sent her proof of the sale. She said that in order for us to get the loan we would have to provide proof of $4,000 in savings, and we would be getting a really high interest rate (about 2oints higher than what she originally told us). We also learned that our payments would end up being about $150.00 more a month than what she promised us when we were pre-approved. In other words, she didn't actually get us pre-approved. She promised us something that she couldn't deliver. I even wrote a letter explaining Jordan's illness and the treatment we sought for him. I explained why we filed for bankruptcy and the circumstances leading up to it. She simply couldn't do what she promised us and Patrick and I decided to walk away from the entire situation. We are sad that we are unable to have the house that we really wanted, but we feel that this was the best situation. The loan officer went so far as to suggest we do something fraudulent to get the loan approved. This is when Patrick and I just said, "all done." I know Jordan was watching over us and I have no doubts that if we would have gotten this house it would not have been the best thing for us financially. We felt that the loan officer was unprofessional and unethical, so we decided to walk away from it all. It was a tough decision, but I know it was the right one. There will be another house and a different loan officer and realtor for that matter. We can never do anything the easy way, so we will just chalk this up to experience too.

We also learned of some bad news on Wednesday. Jillian Fitzpatrick (MPS III/Sanfillipo), who was on the bone marrow unit with us when Jordan was first transplanted, was hospitalized and contracted a virus in her kidneys. Her little body just couldn't fight it off and she earned her angel wings while wrapped in her mother's arms. Please pray for Michelle (Jillian's Mom) and the rest of the family as they make arrangements and prepare to go on without their precious baby girl. If you want to stop by and leave them some words of support, you can visit their site at www.caringbridge.org/oh/jill. I know Michelle will really appreciate it.

As I said at the beginning it was a long week, and I am glad that today is when "September ends."

Love,
Carrie

Monday, September 26, 2005 9:26 AM CDT

Happy angel anniversary baby Jordan. Mommy and Daddy miss you so much. I can't wait to see your sweet angel face again and hold you so tight in my arms. I am sending you hugs and kisses today and always. I hope you like the elmo that Grandma and Grandpa Yeske took to you on Sunday. Mommy wishes she could have been there, but you know I am always with you. You are forever in my heart.
Love,
Mommy

Today is a bad day . . . a hard day . . . one I wish not to face. Unfortunately, life goes on and I must go on as well. Starting a new job today helps, but Jordan is still on my mind and heavy on my heart today. It is difficult to hold back tears as I vividly recall the final hours of Jordan's life. We held him close and told him goodbye. I told him how much we loved him and wanted him to stay, but if Jesus wanted him to go to heaven I promised I would be ok. I never knew how hard it would be to keep that promise. It is amazing how far we have traveled on this journey, yet how little ground we've covered. Some days it seems we've made tremendous progress, others (like today) make us feel as if we are starting all over once again. I saw a baby on an elevator a few days ago and couldn't help but be jealous of the daddy rocking him back and forth. Why? Why is he so much more worthy than us? Why? The answer is we don't know and never will. I could shout from the roof tops about how unfair it is and that I deserve to have a healthy child, but it won't bring Jordan back to me. That's why I am mad. That's why I am frustrated. That's why I cry. That's why I question God's plan? I know I shouldn't. Yet, I can't help but ask why and expect an answer! My heart breaks. It breaks everyday, a million times a day for what I lost, for what I can't have back. It is not fair . . . it is not alright, and it never will be. Today is a bad day. Tomorrow will be better and that's what gets me through.

Love,
Carrie

Monday, September 19, 2005 11:07 AM CDT

I hoped I would be doing this update from the comfort of our new home, but alas we have hit a snag. Our loan officer called us on Tuesday and said she was having a problem with some of the paperwork . . . yes, we were supposed to close on Friday, and yes, we were pre-approved. So what is the problem? OUR LOAN OFFICER! ok, can you tell I'm a little irritated? She didn't really process the paperwork like she should have and there was a problem with our bankruptcy paperwork. I guess she thought that she could wait until the last minute and everything would just work itself out. IT DIDN'T! It isn't a big deal, but it is going to take a few phone calls and some paperwork to straighten it out. In the mean time, our closing is on hold. If she had done her job, this problem would have been solved several weeks ago. Anyway, we are trying to get everything done in a rush so that we can still close by the end of the month. We don't want to have to pay $200 extra to stay in our apartment for an extra month. Also, the Run for Reese/Jog for Jordan is the 8th of October and we want to have everything done before then. Not to mention that I am starting my new job next Monday, and this is going to be a very difficult week with Jordan's 1 year anniversary in heaven quickly approaching. Again, I find the song "Wake Me Up When September Ends" playing in my head. It just seems as if it's always something with us. Just when things start heading in the right direction, something happens to try to knock us down again. We did recieve another letter (from the lender this time) on Friday that we are pre-approved as long as this paperwork is given to them. Now we are just waiting on the paperwork to get here and then everything should go quickly. Hopefully by the middle of next week we will be signing papers for a new house. We are certainly praying that everything works out that way.

Anyway, Please keep us in your thoughts and prayers as all of these things are upon us at once. I also ask that you keep Ellen Bowman and her family in your prayers. She lost her mother to Cancer last Saturday morning. Ellen, we love you honey!

We are still accepting donations and looking for runners for the Run for Reese/Jog for Jordan on October 8, 2005 at Tanglewood Park in Clemmons, NC. We specifically need donations of bottled water and/or fruit for the runners. We also need more prizes for our drawing. If anyone would like to make a prize or cash donation, please call me at 919-255-9018. We want this race to be successful so that we can make a donation in Jordan and Reese's honor. We need to find a cure for these horrible disorders, so that our kids can grow up healthy and strong! You can register online at www.runforreese.com.

Love,
Carrie

Friday, September 9, 2005 10:11 AM CDT

It has been a pretty busy week around here. The current owners of the house we are buying have agreed to pay to have everything fixed before we move. We are happy they agreed to fix everything. That makes moving a little less stressful. As long as everything goes as planned, we will be closing on the 16th of September. We are excited about once again owning a home.

I also got a job offer with a school in Wake County! I am so excited about the opportunity to get back into the classroom. Although I felt a little bad about leaving this new position so soon, they completely understood that I have to do what is best for me. The school is a private alternative school for kids who have been long-term suspended. This is going to be a great challenge, but I think it will be very rewarding as well. These are kids who are getting one last chance and need someone who really cares about their well-being. At first I had visions of the movie "Dangerous Minds," but this school is not like that. They do not accept gang-members, anyone who has sold drugs, or anyone who has had possession of a gun. These kids have mostly gotten suspended for being under the influence of drugs or alcohol while at school, or have gotten into a fight with another student. I don't feel as if I will be in any danger at this school. I feel like this is where I am being led at this time in my life. It will be nice to feel as if I am making a difference again. This will also help me get my foot in the door to Wake County for future teaching opportunities. The only thing about this job is that I will start on September 26th. I know that will be a difficult day for me anyway, and starting a new job on such a stressful day has me a little nervous. I know I will have my angel watching over me, but it will be difficult nonetheless.

The last few weeks have been difficult, but I know that Jordan is with me. He sent me a dream last night. I cherish these dreams so much. The only bad thing is that I hate waking up because I miss him so much. I just want to hold him in my arms once again. I know that one day I will.

We are looking forward to Mike & Connie visiting this week. They are coming to help us with the move. My Mom will be here the first week in October to help with the walk. I am happy to be surrounded by family when I need it most. I know that having Patrick's parents here will make the next few weeks a little easier too.

A friend of mine sent me something that I am going to post here. I thought that it was pretty true.

Bereaved Parents Wish List (author unknown)

1. We wish you would not be afraid to speak our child's name. He lived and was important and we need to hear his name.

2. If we cry or get emotional if we talk about my child, we wish you knew that it isn't because you have hurt us; the fact he died has caused our tears. You have allowed us to cry and we thank you. Crying and emotional outbursts are healing.

3. We wish you wouldn't let my loved one die again by removing from your home his pictures, artwork, or other remembrances.

4. We will have emotional highs and lows, ups and downs. We wish you wouldn't think that if we have a good day our grief is over, or that if we have a bad day we need psychiatric counseling.

5. We wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and we wish you wouldn't compare it to your loss of a parent, spouse, or a pet. This one is just the worst in our eyes.

6. Being a bereaved person is not contagious, so we wish you wouldn't stay away from us.

7. We wish you knew all the crazy grief reactions that we are having are in fact very normal. Depression, anger, frustration and hopelessness and the questioning of values and beliefs are to be expected following a death.

8. We wish you wouldn't expect our grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, we will never be cured or formerly bereaved but forever be recovering from our bereavement.

9. We wish you understood the physical reaction to grief. We may gain weight or lose weight, sleep all the time or not at all, develop a lot of illness and be accident prone, all of which are related to our grief.

10. Our child's birthday, the anniversary of his death, and the holidays are terrible times for us. We wish you would tell us that you are thinking about him on these days and if we get quiet and withdrawn, just know that we are thinking about him and don't try to coerce us into being cheerful.

11. We wish you wouldn't offer to take us out for a drink, or to a party; this is just a temporary crutch and the only way we can get through this grief is to experience it. We have to hurt before we can heal.

12. We wish you understood that grief changes people. We are not the same people we were before our child died and we will NEVER be those people again. If you keep waiting for us to be back to our "old self" you will stay frustrated. We are new creatures with new thoughts, dreams, aspirations, and values. Please try to get to know the new people we are; maybe you will still like us.

13. Please don't tell us he is in a better place. As his mommy and daddy, we feel there is no better place than in our arms. We know you mean well but . . .

Love,
Carrie

Thursday, September 1, 2005 10:11 AM CDT

It is with a very heavy heart that I tell you about the loss of yet another transplant child. Madison Bates (lovingly referred to as "Queen Maddy") earned her angel wings yesterday morning after a long battle. She was surrounded by her loving family as she went from her mother's arms to the arms of her heavenly father. Please stop by her website and offer her family words of comfort. (www.caringbridge.org/ca/queenmaddy)

The past few weeks have been very difficult. The loss of Cody and Maddy have only opened old wounds. As we try to move on out of the life of transplant, we are constantly surrounded by reminders of our own struggles and the continuing struggles of so many of our dearest friends. Our hearts continuously break for the loss of so many. We grieve for their loss and ours. Sometimes I wonder if we will ever be able to move forward.

Speaking of moving . . . we had our home inspection for the new house earlier this week and apparently there are a few things that need to be fixed. The siding is hardboard and has some water damage from not being properly sealed. There are a few other things as well. We are waiting for an estimate so that the owners can decide if they want to fix it or just give us the money to get it fixed. With the closing only two weeks away, I don't know how they will get these things done in time, but we will see. Why can't anything be easy for us? It is always something. Our lives are anything but boring I guess.

I am starting to rethink my decision to change jobs. Although I love the people with which I work, I am not loving the research aspect of my position. I am working on a computer all day, and I would really enjoy working with people instead. I like this better than what I was doing at the accounting firm, but I know that in my heart I want to be teaching. I want to make a difference in people's lives. I know helping them find a job is important, but I really think that I was made to be a teacher and that's what I should be doing. We will see what happens. As always, I will keep you all updated.

I want to end with a bit of good news! Toni and Andy (Angel Reese's Aunt & Uncle) just got their new baby. She was born on Friday and is adorable. I am so happy for them. They tried everything to have a child with no luck, but God has finally blessed them with a perfect baby for adoption. You can see pictures on Reese's website. (www.caringbridge.org/nc/reesecup).

Love,
Carrie

Tuesday, August 23, 2005 3:57 PM CDT

Last Thursday's news about Cody left us broken hearted and we are once again experiencing grief over another transplant angel. We will be traveling to Virginia this weekend to honor Cody at the celebration of life service.The Celebration of Life Service will be held Saturday August 27, 2005 at 1:00 p.m. at Lighthouse Worship Center 4299 George Washington Mem Hwy Hayes, VA 23072. For more information contact Lighthouse Worship Center (804) 642-2752 or log into Cody’s website at www.caringbridge.org/va/cody.

My sister, Cherie and her fiance, Ryan, came to visit us this weekend, which helped to keep our minds occupied. We spent time watching movies, playing pool and darts, and just hanging out talking. We had lots of fun and were sorry to see them leave this morning.

Patrick and I continue to dread the upcoming weeks, especially September. Although we will be moving into a new house, there are so many emotions that we experienced last year at this time that we are re-living as the one year anniversary of Jordan's death approaches. We try to stay occupied with other things, but We can't help but continuously grieve. The death of other children since then has only added to our heartache, especially the latest news of Cody and now the uncertainty about Queen Maddy. She has taken a turn for the worse and she needs many prayers. www.caringbridge.org/ca/queenmaddy

With all of this going on, I heard a new song on the radio by Green Day called "Wake Me Up When September Ends." It seems to be my theme song these days. You can read the lyrics below.

Summer has come and passed
The innocent can never last
wake me up when September ends

like my fathers come to pass
seven years has gone so fast
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

summer has come and passed
the innocent can never last
wake me up when September ends

ring out the bells again
like we did when spring began
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

Summer has come and passed
The innocent can never last
wake me up when September ends

like my fathers come to pass
seven years has gone so fast
wake me up when September ends
wake me up when September ends
wake me up when September ends

Love,
Carrie

Thursday, August 18, 2005 4:11 PM CDT

*****I updated a little too soon . . . at 4:23PM, Cody's family removed life support and he joined ^^Jordan^^ and so many other angels in heaven. Eleasha called to tell me the news and she was surprisingly calm, although I know it is because she is in shock. They are making arrangements to cremate Cody and spread his ashes on the motorcross track in St. Louis, MO. This is what Cody wanted and the family wants to honor his wishes. They will have a few celebration of life ceremonies and I will post details when I get them. Please go to Cody's website and offer words of comfort and support to the family. www.caringbridge.org/va/cody******


HAPPY 50TH BIRTHDAY MOM (Sheila)! We hope you have a great day!


We have so much going on and with it so many emotions. Cody is still hanging on, but it is clear that there will be no miracle as we had hoped. If Cody doesn't decided to go before then, his parents will make the decision to remove life support tomorrow or Saturday. I can't begin to tell you how much this hurts my heart. Please pray for this family as they endure the most severe hurt anyone can experience. Ask God to lift them up as they continue life without their precious son at their side.

Patrick and I found another house in the same neighborhood as the one before. We like this one much better than the other and everything is working out very well. We placed an offer and it was accepted. We will be closing on September 16th. This feels so much better than the other deal did. We are excited about the new house, but as I said before there are mixed emotions. We will let you know all about the process and how we are dealing with everything.

I am loving my new job. It seems that I am doing really well as a research assistant to the recruiters. I have already found several great candidates and one had an interview today which will hopefully turn into a placement. If that works out, I will get my first bonus! That is so awesome. Everyone here is a lot of fun and I am enjoying getting to know them.

We are still getting everything together for the Run for Reese/Jog for Jordan on October 8th. I sent out letters asking for sponsorship a little while ago and haven't heard anything back yet. If anyone is interested in donating services, money, or an item for the raffle or as a prize for the walk/run, please feel free to call me at home. The number is at the bottom of the page. Also, donations can be made to THE NATIONAL MPS SOCIETY with "Jog for Jordan" in the memo line. Those can be sent to me at our home address below. We really want this race to be a huge success! It will be at Tanglewood Park in Clemons, NC. If you are interested in walking/running, please let me know too!

Don't forget to keep Eleasha, Cody, & their family in your prayers. Queen Maddy is doing better, but she remains in the PICU since her liver functions and clotting factors are still very poor and she is still on a vent. Please continue to ask for healing for her and peace for Cody's family.

Love,
Carrie

Tuesday, August 16, 2005 6:33 AM CDT

Eleasha (Cody's Mom) called me yesterday to updated me on Cody. The news is not good, but as Patrick and I have discussed was expected. Cody is on the highest vent settings, his lungs are now being damaged by the machine. His kidneys are near complete failure and he is tired and weary. Eleasha & Greg have decided to allow him to get a dose or two more of an experimental medication in hopes that this will be Cody's miracle, but through their hope they are being realistic about the outcome. If these efforts fail, they will be removing Cody from life support on Friday or Saturday. I know that this is the hardest decision for a parent to make. I pray that Cody makes the decision for them. No parent should have to decide. Please continue your prayers for this family. Pray for a miracle for Cody, strength for the family, and peace for the decisions that are being made. Eleasha- Please know that we are here for you. We love you guys so much. Below I have put a song that we are dedicating to Cody.

"The Dance" by Garth Brooks

Looking back on the memory of
The dance we shared 'neath the stars alone
For a moment all the world was right
How could I have known that you'd ever say goodbye

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance

Holding you I held everything
For a moment wasn't I a king
But if I'd only known how the king would fall
Hey who's to say you know I might have chanced it all

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance

Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance

Saturday, August 13, 2005 10:52 PM CDT

I updated the second picture on the photo page with a picture of Jordan's marker. It is beautiful.

Well, the house is not going to be. The house we put an offer on had some problems. The main one was that there was a 16 foot encroachment onto the adjoining property. This means that half the back yard didn't belong to us, it actually belonged to the city and our fence & shed were on someone else's property. This could have been a problem in the future. If someone complained, we would have to correct the encroachment at our expense. Since the realtor couldn't get us a letter from the Home Owner's Association or the City stating that they were aware of the encroachment and we would not be asked to correct it, we decided that it was best not to take the property for the price that we offered. We felt it was unfair that the encroachment was not disclosed to us until after all the negotiation was over, and a huge selling point for us was the yard. We notified the realtor that we would not be signing any paper work, and she informed us that she had another couple that was interested in the property. Since that couple has since made an offer on the property, we don't feel bad about withdrawing our offer. Something just didn't feel right to us, so we decided it just wasn't the best move for right now. We will continue our search. There are a few other houses in the same neighborhood that we will be looking into within the next few days. We know we will find the perfect house when everything is right for all parties involved.

We once again ask everyone to continue their prayers for Cody Hoffman. He has not tolerated the vent weans and they have had to increase his settings once again. His chest x-ray has gotten worse and he is retaining lots of fluid (which adds to the breathing problems). We are just heartbroken over Cody. Everytime he takes a little step forward, it seems he is struck by a tidal wave and pushed 10 steps back. We empathize with Eleaha and Greg as they keep vigil and Cody's side praying for his complete recovery and trying to remain positive when they really want to scream until someone gets it and can fix everything. Eleasha is a very faithful person, but I can tell you first hand that her faith is being tested. Please pray that she continues to give the burden in her heart to God and allow herself to have peace. We love this family as if they were a part of our own. They were there for us when Jordan was so sick at this time last year, and I am so sorry that I am getting the chance to return the favor. It was only a few months ago that I went to visit Cody and he was improving. We played games and he kicked my butt playing Kings in the Corners. Please pray hard for this family. They need it. Eleasha, Greg, and Cody- We love you guys and are here if you need anything at all.

Love,
Carrie

Tuesday, August 9, 2005 4:02 PM CDT
There is so much to tell everyone. We are doing well although the next few weeks and months will be very tough. As I am sure you all know, tomorrow will be the 1 year anniversary of when Jordan entered the hospital for the last time. So many emotions come over me when I think back to the last night my baby stayed in his own bed, but I will save all that for another time. Some days it seems like Jordan just passed away, and other days it seems it was a lifetime ago since I held him in my arms for the last time. Patrick and I are trying to stay busy and we have succeeded so far. We put an offer on a house in Knightdale (right outside Raleigh) and the offer was accepted today! We are excited to be moving into a new house at the end of September. In a way we will be glad to leave the apartment, in other ways we feel we are leaving a piece of Jordan behind (despite his 10 short days in that apartment). That apartment is where we lived when our lives forever changed. It holds memories both good and bad.

ok, I have to change the subject . . . my new job is great so far. I keep getting many complements on my work and I am really enjoying the people with whom I work. Everyone is treating me like I've been here forever. I feel like a part of a team, and it is nice to be appreciated. Patrick is also trying his hand at a new career. Although he liked the airport and we loved the flight benefits, he just wasn't getting enough hours to make the drive worth it. With the price of gas increasing, it wasn't very cost effective. He is currently working construction for a friend of ours and loves it. This is probably the happiest I have seen him with a job since I have known him. He is feeling such a sense of accomplishment, and he is proud of his work. I am proud of him and glad he has finally found something that he enjoys doing.

Before I go, I want to ask a special prayer for Cody Hoffman. He is still very sick. His oxygen requirements were getting better, but now he is back up to 60xygen. I know that this family is really having a hard time, so please stop by their guestbook (www.caringbridge.org/va/cody) and leave them a message of encouragement. I know how much the messages left by all of you meant to us when Jordan was struggling in the PICU. I also want to ask a special prayer for Queen Maddy (www.caringbridge.org/ca/queenmaddy). She is still in the PICU and has been moved to the oscillator. The doctors believe she has a pulmunary hemorage. She is also having major issues with her liver and kidneys. Please pray that God lays his healing hands on these two children. As always, we pray that this healing will be on earth with us. We also pray for the strength of these families as they endure fear, uncertainty, and mental and physical exhaustion. We will update more when we know more.

Love,
Carrie

Tuesday, August 9, 2005 4:02 PM CDT

There is so much to tell everyone. We are doing well although the next few weeks and months will be very tough. As I am sure you all know, tomorrow will be the 1 year anniversary of when Jordan entered the hospital for the last time. So many emotions come over me when I think back to the last night my baby stayed in his own bed, but I will save all that for another time. Some days it seems like Jordan just passed away, and other days it seems it was a lifetime ago since I held him in my arms for the last time. Patrick and I are trying to stay busy and we have succeeded so far. We put an offer on a house in Knightdale (right outside Raleigh) and the offer was accepted today! We are excited to be moving into a new house at the end of September. In a way we will be glad to leave the apartment, in other ways we feel we are leaving a piece of Jordan behind (despite his 10 short days in that apartment). That apartment is where we lived when our lives forever changed. It holds memories both good and bad.

ok, I have to change the subject . . . my new job is great so far. I keep getting many complements on my work and I am really enjoying the people with whom I work. Everyone is treating me like I've been here forever. I feel like a part of a team, and it is nice to be appreciated. Patrick is also trying his hand at a new career. Although he liked the airport and we loved the flight benefits, he just wasn't getting enough hours to make the drive worth it. With the price of gas increasing, it wasn't very cost effective. He is currently working construction for a friend of ours and loves it. This is probably the happiest I have seen him with a job since I have known him. He is feeling such a sense of accomplishment, and he is proud of his work. I am proud of him and glad he has finally found something that he enjoys doing.

Before I go, I want to ask a special prayer for Cody Hoffman. He is still very sick. His oxygen requirements were getting better, but now he is back up to 60xygen. I know that this family is really having a hard time, so please stop by their guestbook (www.caringbridge.org/va/cody) and leave them a message of encouragement. I know how much the messages left by all of you meant to us when Jordan was struggling in the PICU. I also want to ask a special prayer for Queen Maddy (www.caringbridge.org/ca/queenmaddy). She is still in the PICU and has been moved to the oscillator. The doctors believe she has a pulmunary hemorage. She is also having major issues with her liver and kidneys. Please pray that God lays his healing hands on these two children. As always, we pray that this healing will be on earth with us. We also pray for the strength of these families as they endure fear, uncertainty, and mental and physical exhaustion. We will update more when we know more.

Love,
Carrie

Monday, August 1, 2005 12:03 AM CDT

I ask all of you to stop what you are doing and pray for Cody Hoffman. He was taken to the PICU on Saturday night. His lungs are bleeding and is on extremely high settings on the vent. Please keep Cody and his family in your thoughts and prayers. This is so much like Jordan's last few months, that it really scares me. I know what Eleasha and Greg are going through right now and believe me, they need your prayers.

Jordan's headstone was placed this weekend. We will post pictures later. I am enjoying my new job so far, although I'm ony half-way through my first day. I also wanted to congratulate Robert Ray (Patrick's best friend)for taking second in the Master's (pool) tournament this weekend. The only player that beat him was Francisco Bustamante. Those of you who know pool, know that Bustamante is #1 in the US right now. Congratulations Robert! You did awesome.

Again, please keep Cody in your prayers. I will update more when I get more information. (www.caringbridge.org/va/cody)
Love,
Carrie

Monday, July 25, 2005 7:41 AM CDT

HAPPY BELATED BIRTHDAY TO ANGIE (31) & BABY PRESTON (1) FROM FRIDAY!

It's been a pretty busy week. I am trying to finish up all my projects at work so that whoever comes in to replace me will have an easy transition. I still haven't heard about any prospects, but my last day is Thursday regardless. I am already sad about leaving this firm. One of the partners is out on Vacation this week and left me a really nice card and message wishing me luck in my new position. No matter how much I have disliked the work I am doing here, I really will miss the wonderful, caring people that I work with. Ok, I will quit talking about that or the tears will start flowing. It's just been an emotional few days.

I flew to Illinois on Saturday morning (just for the day), to celebrate Preston's first birthday and my sister, Angie's 31st. We had a great time despite the sweltering heat, but when Preston was smashing his first cake and opening his presents, I couldn't help the tears from falling. I just kept picturing Jordan sitting in his high chair on his first birthday smashing the cake and laughing, just like Preston. It was a very bittersweet day, but I pulled myself together and had a good time despite the deep pangs in my heart. I just loved on Preston to soothe that heartache. I can't believe how much he is growing. He is so big and so smart. I know that Angie is so proud of him. She and Luke have two beautiful children and I know that they are thankful for being so blessed.

Patrick and I are beginning the search for a house in the Knightdale/Wendell area. We are in Raleigh right now, but we would like to move just outside of town where we might be able to get a little more land. We were supposed to go look at a few houses yesterday when I returned from my Illinois trip, but I was unable to get on the first plane and my trip was rerouted to Newark and then to Raleigh. It made for a long day, but I did get to fly by the Statue of Liberty, so that was pretty cool! Needless to say, I got home too late to go look at houses. I guess we are going to go this weekend. We already have a few houses in mind and know that we are approved for a decent price range. We figure it's better to put the money into an investment rather than throw the money away on rent.

I also want to ask everyone to continue to pray for Cody Hoffman. He is still having a really rough time. The doctors did an echocardiogram the other day and found that Cody has fluid around his heart. He also is having some labored breathing while sleeping. Although the doctors believe this is probably from the massive amounts of steroids, it is really scary. Please keep this family in your prayers. Pray for Cody's complete healing here on earth and for Eleasha & Greg's peace of mind with the decisions they are making for Cody's medical care. I know that they are dog tired and ready for Cody to be up running around again. I know how Eleasha's heart breaks while watching her son lie in a hospital bed, while she remains helpless to do anything to make him better. I know that she would take his place in a second if it meant that Cody could have a happy, healthy life. Eleasha, we are here for you if you need anything at all. We are couting the days until you are at Duke and we can offer more comfort with our open arms. We love you guys.

Love,
Carrie

Friday, July 15, 2005 2:28 PM CDT

HAPPY BELATED BIRTHDAY TO CHERIE ON THE 13th!

Thank you for all the prayers for Cody and Madison. I know that Cody (last I heard) was about the same. They are making arrangements to come back to Duke. Maddy is improving everyday and they are talking about extubating her from the vent. today. Please pray that this goes smoothly as it is a big step in Maddy's recovery.

I want to thank all of you who have been praying for me to find the right job! PRAYER WORKS! I will be starting a new job on August 1st. It isn't a teaching job. Unfortunately, there just aren't many of those around here. I actually got hired by a very large recruiting firm here in Raleigh called Management Recruiters International. I will be a research assistant for now while I train to be a jr. recruiter and eventually move up. This job will give me a significant raise, benefits, lots of room for advancement, and bonuses. I am so excited about working for this company. Everyone there is really great (so far).

Also, Patrick is home! He couldn't stand being away from me. Although that is true, they had not reimbursed him for any expenses yet, and he just couldn't afford to stay there and continue paying for all his expenses (including a rental car) when we were trying to pay expenses here. The woman who hired him couldn't tell him when he would be reimbursed, so he told her that he would just have to come home. I am so glad he is home. I really missed him and I just couldn't stand him being so far away. This time it was much harder for us to be apart. We have decided that we aren't going to do that ever again. From now on, we are only going to be away from each other for a few days at a time. We just need to be with each other too much.

We are still working hard on the Run for Reese/Jog for Jordan. It will be at Tanglewood Park in Clemmons, NC on October 8th. If anyone would like to make a donation in Jordan's honor or to donate an item for our raffle or as a prize for our runners, please contact me at home 919 255-9018 or send checks payable to the National MPS Society, with Jog for Jordan in the memo line to Carrie Horton, 1313 Camargo Lane, Raleigh, NC 27604. All donations are tax deductible and will help aide research for these horrible diseases. We really want to raise tons of money in ^^Jordan^^ and ^^Reese's^^ honor this year! Thank you in advance for all your support!

Love,
Carrie

Friday, July 8, 2005 3:44 PM CDT

******URGENT PRAYER REQUEST*******
Queen Maddy (another fellow transplant buddy) is in for her second transplant and was taken to PICU last night and put on a ventilator. The doctors believe her lungs are bleeding from the chemo. Please keep this family in your prayers as they have fought so hard to save Maddy. Please visit their site and offer your support www.caringbridge.org/ca/queenmaddy


Tuesday, July 5, 2005 9:15 AM CDT

Good morning friends-

Thank you to Alicia Bennet for giving me the Elmo background. Jordan just loved Elmo, so I thought it was appropriate.

It was a long weekend with Patrick being gone, but I spent the time with friends. I know Patrick doesn't like being away from home and I miss him, but we both know it was a great offer and dificult to pass up. My sister and her fiance are coming to visit this weekend, so we are going to go to the beach on Saturday. It should be a good time and will help pass the time while Patrick is away.

I am still searching for a teaching position for next school year, but it is a slow process. I know something will open up soon, but everyone who knows me also knows that I don't like to wait when I have made a decision about something. I know I want to go back to teaching and it is frustrating to have to wait on a job opportunity. Anyway, as always I will let you know when I know something.

I got an e-mail today from a family who has a 17 month old son who was just diagnosed with Hunters. My heart just breaks for these people. I remember the day we heard the news about Jordan and how my life just fell apart. All our hopes and dreams for a happy, healthy child were stolen from us in seconds. It is an absolutely devestating feeling and I pray for these people. They are trying to decide if a Cord Blood Transplant is the best option for their son and they wanted my advice. There are so many things that I wanted to say to the woman, but I ultimately told her that she and her husband have to make that decision on their own. No one can make the decision for them because they are the ones that have to live with the outcome, no matter what it is. Part of my wanted to say do what you can to save your son, the other part of me wanted to say "take him home and love him." I know I was completely angry when I heard these words for the first time, but now they don't seem so harsh. Not that they wouldn't love him anyway, but the point is cherish the time that you have with your child. I'm certainly not the right person to ask about which decision they should make. The only thing I can do it tell her about the decision we made and why, and let them draw their own conclusions. I pray that God guides them to the correct decision as I know we were guided.

Please continue to keep Cody in your prayers. He was diagnosed with Paraflu. This virus has taken the lives of at least two of our fellow transplant buddies. We pray that Cody is able to regain his strength and recover fully. Eleasha posted last week that they are testing Cody for Legionaires disease. If you will recall, they tested Jordan for Legionaires right before he was admitted to the PICU for the last time. You guys, I am really scared for this family. Cody's story is sounding all too familiar to Jordans. Please send extra prayers for Cody's quick recovery. Stop by their guestbook and let them know that you are thinking of and praying for them. www.caringbridge.org/va/cody Also, he loves to get mail, so write him a letter or send him a card to cheer him up.

I also ask you to continue to pray for Cam who has just relapsed with Nueroblastoma. His parents are faced with some tough decisions about the next course of treatment. www.caringbridge.org/fl/camspage.

A friend of mine e-mailed this to me and I thought I would share it with all of you.

Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have given
throughout the pages of time. She says it doesn't matter whether it's a boy
or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin. Every mother wants a baby so gorgeous that
people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on page 57,
column two). Every mother wants a baby that can see, hear, run, jump and
fire neurons by the billions. She wants a kid that can smack the ball out of
the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that
didn't fuse, a missing chromosome or a palette that didn't close. Most of
those mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the
fourth grade when you didn't see the kick ball coming and it knocked the
wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even
years later, take him in for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as they bear the brunt of
devastating news. It can't be possible! That doesn't run in our family. Can
this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles with nary an ounce of
flab or fat, virtual powerhouses of strength with lungs and limbs working in
perfect harmony. Then the athlete walks over to a tote bag, rustles through
the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third
knee surgery, or on a trip home from an echo cardiogram, there's no such
thing as a perfect body. Every body will bear something at some time or
another. Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen, quietly treated with trips to the doctor, medication or
surgery. The health problems our children have experienced have been minimal
and manageable, so I watch with keen interest and great admiration the
mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out
of a wheelchair 20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred specialists yammering
in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned
souls explaining how God is at work when you've occasionally questioned if
God is on strike. I even wonder how you endure schmaltzy pieces like this
one -- saluting you, painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer for this, you
didn't jump up and down in the motherhood line yelling, "Choose me, God.
Choose me! I've got what it takes." You're a woman who doesn't have time to
step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the
strength of a draft horse while holding onto the delicacy of a daffodil. You
have a heart that melts like chocolate in a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can be warm
and tender one minute, and when circumstances require, intense and
aggressive the next. You are the mother, advocate and protector of a child
with a disability. You're a neighbor, a friend, a stranger I pass at the
mall. You're the woman I sit next to at church, my cousin and my
sister-in-law. You're a woman who wanted ten fingers and ten toes, and got
something more. You're a wonder.

Love,
Carrie

Tuesday, July 5, 2005 9:15 AM CDT

Good morning friends-

Thank you to Alicia Bennet for giving me the Elmo background. Jordan just loved Elmo, so I thought it was appropriate.

It was a long weekend with Patrick being gone, but I spent the time with friends. I know Patrick doesn't like being away from home and I miss him, but we both know it was a great offer and dificult to pass up. My sister and her fiance are coming to visit this weekend, so we are going to go to the beach on Saturday. It should be a good time and will help pass the time while Patrick is away.

I am still searching for a teaching position for next school year, but it is a slow process. I know something will open up soon, but everyone who knows me also knows that I don't like to wait when I have made a decision about something. I know I want to go back to teaching and it is frustrating to have to wait on a job opportunity. Anyway, as always I will let you know when I know something.

I got an e-mail today from a family who has a 17 month old son who was just diagnosed with Hunters. My heart just breaks for these people. I remember the day we heard the news about Jordan and how my life just fell apart. All our hopes and dreams for a happy, healthy child were stolen from us in seconds. It is an absolutely devestating feeling and I pray for these people. They are trying to decide if a Cord Blood Transplant is the best option for their son and they wanted my advice. There are so many things that I wanted to say to the woman, but I ultimately told her that she and her husband have to make that decision on their own. No one can make the decision for them because they are the ones that have to live with the outcome, no matter what it is. Part of my wanted to say do what you can to save your son, the other part of me wanted to say "take him home and love him." I know I was completely angry when I heard these words for the first time, but now they don't seem so harsh. Not that they wouldn't love him anyway, but the point is cherish the time that you have with your child. I'm certainly not the right person to ask about which decision they should make. The only thing I can do it tell her about the decision we made and why, and let them draw their own conclusions. I pray that God guides them to the correct decision as I know we were guided.

Please continue to keep Cody in your prayers. He was diagnosed with Paraflu. This virus has taken the lives of at least two of our fellow transplant buddies. We pray that Cody is able to regain his strength and recover fully. Eleasha posted last week that they are testing Cody for Legionaires disease. If you will recall, they tested Jordan for Legionaires right before he was admitted to the PICU for the last time. You guys, I am really scared for this family. Cody's story is sounding all too familiar to Jordans. Please send extra prayers for Cody's quick recovery. Stop by their guestbook and let them know that you are thinking of and praying for them. www.caringbridge.org/va/cody Also, he loves to get mail, so write him a letter or send him a card to cheer him up.

I also ask you to continue to pray for Cam who has just relapsed with Nueroblastoma. His parents are faced with some tough decisions about the next course of treatment. www.caringbridge.org/fl/camspage.

A friend of mine e-mailed this to me and I thought I would share it with all of you.

Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have given
throughout the pages of time. She says it doesn't matter whether it's a boy
or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin. Every mother wants a baby so gorgeous that
people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on page 57,
column two). Every mother wants a baby that can see, hear, run, jump and
fire neurons by the billions. She wants a kid that can smack the ball out of
the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that
didn't fuse, a missing chromosome or a palette that didn't close. Most of
those mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the
fourth grade when you didn't see the kick ball coming and it knocked the
wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even
years later, take him in for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as they bear the brunt of
devastating news. It can't be possible! That doesn't run in our family. Can
this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles with nary an ounce of
flab or fat, virtual powerhouses of strength with lungs and limbs working in
perfect harmony. Then the athlete walks over to a tote bag, rustles through
the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third
knee surgery, or on a trip home from an echo cardiogram, there's no such
thing as a perfect body. Every body will bear something at some time or
another. Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen, quietly treated with trips to the doctor, medication or
surgery. The health problems our children have experienced have been minimal
and manageable, so I watch with keen interest and great admiration the
mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out
of a wheelchair 20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred specialists yammering
in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned
souls explaining how God is at work when you've occasionally questioned if
God is on strike. I even wonder how you endure schmaltzy pieces like this
one -- saluting you, painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer for this, you
didn't jump up and down in the motherhood line yelling, "Choose me, God.
Choose me! I've got what it takes." You're a woman who doesn't have time to
step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the
strength of a draft horse while holding onto the delicacy of a daffodil. You
have a heart that melts like chocolate in a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can be warm
and tender one minute, and when circumstances require, intense and
aggressive the next. You are the mother, advocate and protector of a child
with a disability. You're a neighbor, a friend, a stranger I pass at the
mall. You're the woman I sit next to at church, my cousin and my
sister-in-law. You're a woman who wanted ten fingers and ten toes, and got
something more. You're a wonder.

Love,
Carrie

Wednesday, June 29, 2005 7:53 AM CDT

Well, Patrick left for Portland, Oregon yesterday morning, and I miss him already. He was able to work it out with the airline, and he gets to keep his job and his flight benefits while he takes the time to work this contract Railroad job in Portland. I have to admit that I am happy about the amount of money Patrick will earn while he is gone, but Portland is a long way from Raleigh. If Patrick's trip is any indication of how difficult it is to travel across country on the standby list, we will not be visiting each other while he is gone. I guess we will just have to see what flights look like in the next few weeks.

I did hear back from Apex High School. Unfortunately, I didn't get the position. They hired someone with a Master's degree. It is so difficult to find a teaching position here without an advanced degree. I know that the right position is out there for me, but I am just getting really frustrated, especially since I don't like what I am doing at the CPA firm. I wish I could take these same people and have them run a business that I liked so I could continue working with them and enjoy it. I am going to continue my search, but there just aren't many English positions out there right now. I am hopeful that more positions will open near the end of the month.

I spoke with Eleasha (Cody's Mom) and she is making arrangements with Dr. K. to bring Cody back to Duke. She is just not comfortable with doctors who barely know Cody or his history making all these huge decisions. I know how she feels and also will feel better when Cody returns to Duke.

Another one of our transplant buddies is having some problems. Cam (www.caringbridge.org/fl/camspage)was transplanted for neuroblastoma right before Jordan, and we met Cam & his mommy, Michelle in clinic when Jordan was only days old. Michelle was the first friend we met at Duke, and I will never forget Cam's smile as he continuously made Michelle make more playdough shapes. He has just had some bad test results that show his cancer is returning. We ask that you keep their family in your thoughts and prayers as they make more decisions about the best treatment for Cam.

It seems that so many of the children that were transplanted with Jordan have had major problems or become angels. It is really quite depressing. I miss Jordan so much, and I will never get over losing him. It is a pain so deep that words will never be able to describe the emptiness and hurt that I feel. I hate it that so many other friends that we have met along our journey share that pain about their children and my son. You truly get so close to these families that it feels as if you are losing a family member when one of these kids passes. When one of these children is in the hospital, it is fear that I feel. Fear for the fate of the child and fear for the heartache of the parents. I wake up every morning with these children and mine weighing heavy on my heart and mind and go to bed every night praying that my angel and the others will watch over the children that are still fighting. Transplant never really ends. You make bonds and friendships that will never ever break. I am thankful for every relationship, but I curse what brought us all together.

Love,
Carrie

Thursday, June 23, 2005 7:49 AM CDT

I had a great time back home visiting my parents. We even went to their place in the Ozarks and did a little fishing. I caught one fish, but that was the extent of our catch. The fish just weren't biting. Anyway, it was nice to spend some much needed time at home with family. Mom and I went out to the cemetary to take flowers to Jordan and Mom and I ordered Jordan's headstone. It is not the one that we ultimately want to put out, but we couldn't stand his grave being so bare. Mom and I just cried and cried over the grave being unmarked. I think the woman felt a little compassion for us because she gave us a discounted price on the marker. It is a bear swinging on a swing and it says "Playing in God's Garden" on it. The marker should be ready in about 6 weeks, so I will fly home then to see it and will post pictures.

I still haven't heard anything about the teaching position yet. I should hear something by the end of the week (isn't that tomorrow?) Keep those fingers crossed. I really want this position. Patrick got an offer for a contract job with a railroad in Portland, Oregon. It would be a temporary job, but it would be really good money. He is seeing what he can do about working with the airline (since he is only a part-time employee). He thinks he will be able to work something out so that he can take a short leave and keep his flight benefits while doing this contract job. That would mean that I can visit him and he can visit me on the weekends while he is away. We will see what happens. The money is so good, that he doesn't think he can pass up the opportunity. This will allow us to save a little money.

I hate to end on a negative note, but I want you all to pray for Cody Hoffman. He is having a really rough time right now. He has developed Hemolitic Anemia. This is what sent Jordan to the PICU the first time. Hemolitic Anemia is when your body attacks it's own red blood cells and breaks them down. It can cause major breathing problems. It is extremely serious! Cody is also still battling some serious Graff Vs. Host disease and is just not moving in the right direction. After talking with Eleasha on the phone, their story is sounding eerily similar to what we were hearing about Jordan. Cody is having trouble with his blood clotting, and he is also requiring more insulin than normal. These are all so scary!Please keep Cody and his family in your prayers. Pray for Cody's complete healing and for Eleasha and Greg's peace of mind. (Eleasha & Greg - we love you guys. Hang in there and call if you need anything!) Please visit their website and offer them your support www.caringbridge.org/va/cody

Love,
Carrie

Thursday, June 16, 2005 1:01 PM CDT

This has been one of those weeks . . . It all started with a water leak from our air conditioner last weekend. Apparently some part was disconnected and the water leaked into our living room and behind our couch. We of course didn't realize it until our carpet was saturated. Patrick sat down on the floor in front of the couch and yelled that his pants were wet. We got to checking and had to call maintenance. When we moved the couch, my heart sank. I saw some story board from a benefit that we had last year at this time. I remember Patrick's parents bringing it to us several months ago and we placed it behind the couch (we have very little storage in our apartment) so that nothing would happen to it. The story board had several pictures and newspaper articles about Jordan. Needless to say, several of the pictures were ruined and it broke my heart. I know that my Mom & Connie have doubles of most of the pictures, but I just couldn't bear the thought that the one thing I have left was ruined. Seeing these ruined pictures has upset me to the point that I can't seem to feel better. It seems like all the progress i've made in the last several months came to a scretching halt and I am back at the beginning of the greiving process all over again. Over the past several days, I have felt as though I just lost Jordan all over again. I know pictures shouldn't mean that much to me, but they do. Anytime I miss my angel, I can look at those pictures and see him happy. Lately, all I can think about is how miserable he was the last few months. On top of that, Cody Hoffman (www.caringbridge.org/va/cody) was readmitted to the hospital with Pnemonia. If you'll remember, that's what originally caused Jordan's last admission to the hospital. It's just been a rough few days.

Needless to say, I need something to lift my spirits. I am going to fly home tomorrow morning to spend the weekend with Mom & Dad for father's day. I am going to visit Jordan tomorrow morning. Since I am only going to be home for two days, I am not going to have time to visit with everyone, so I appologize in advance. I wouldn't be very good company anyway. I just need some family time right now. I wish Patrick didn't have to work and could go with me, but unfortunately he has to stay here.

I also found out yesterday that I did not get the job I interviewed for last week. I think I would have been much more upset about it if I hadn't gotten a call right before that asking me to interview with Apex High School today. At 7:30 this morning I interviewed for a High School English position teaching Sophomore and Junior level classes. I really hope that I get this position. It is in a really good school and in a great location (close to the airport). If I get the position, Patrick and I will likely move to the Apex area. I will let you all know something as soon as we hear something. Apex is supposed to make a decision by the end of next week, so wish me good luck!

Please go hug your kids and tell them how much you love them.

Love,
Carrie

Thursday, June 9, 2005 3:53 PM CDT

****MORE GOOD NEWS!*****
My younger sister Cherie got engaged this weekend to Ryan Bruce. I am so happy for her. CONGRATULATIONS CHERIE & RYAN!

Finally, I have good news. Cody Hoffman was able to go home from the hospital last night. The doctors felt that everything they are doing in the hospital can be done at home. Of course Cody will have frequent clinic visits once again, but I know they are happy to be home at last. All he needed was a visit from me to whip him into shape! :)

I had a job interview this afternoon, and it went well. Unfortunately, it is not for a teaching position. I have resorted to looking for something else. I really am not enjoying my job here at the CPA firm and am looking for something more challenging. Since the amount of high school English teaching positions is zero right now, I am going to try a different field. I don't want to say too much right now for fear of jinxing my chances to get the new position, but it would be a much better opportunity than what my current position offers. I should hear something at the beginning of next week, and as always I will pass the information on to you.

I want to tell you all that we have set an official date for the JOG FOR JORDAN/RUN FOR REESE. It will be on October 8th, 2005 at Tanglewood Park in Clemmons, NC. I will be sending out letters and posting information on how you can help us with this fundraiser for the National MPS Society. I really want this race to be a success so that it can rightfully honor Jordan's memory and help other children like him. We are looking for sponsors, so please let me know if you are interested or know someone who would be willing to sponsor or help sponsor the event. We are making the race official this year by having the local track club host it. This will ensure that all the times for the race will be official! We hope this attracts some serious runners. I will be meeting with Shawn (Coble) Samuelson (Angel Reese's Mommy), and Robin Boger on Sunday to do some planning and of course to have some girlfriend time. I will update with more details as we get everything planned. Until then, go hug your kids.

Love,
Carrie

Jordan- Mommy & Daddy miss you so very much. We love you sweet angel!

Friday, June 3, 2005 12:46 AM CDT

There is still no word on the job front. I am getting really frustrated with the search. There are very few High School English positions open right now, and if you don't know someone, it is difficult to even get an interview. I have been told that it will get much easier to find a job in July and August because schools know exactly who they need and need to fill the positions quickly before the start of the next school year. I guess I am stuck with this job until then. I know I shouldn't complain. I am lucky to have a decent paying job, but I just do not like what I am doing here. If I were the least bit interested in accounting, I might like this job so much better, but i'm not. I know the right opportunity is out there, I am just waiting for it to fall into my lap. My grandmother continues to gain strength and appetite. It is so nice to hear good news from home. Although with the good, there is always bad . . .

I went to visit Cody Hoffman last weekend in Virginia. We played cards and Life (the simpson's version) He was in pretty good spirits, but he looks very pale and thin. It broke my heart to see him look so sick after he had been doing so well. It was an all too familiar feeling. It is amazing to me how quickly these kids go from healthy to extremely ill. I found out this morning that Cody had to have emergency surgery this morning to replace his central line. Apparently the temporary one burst. I'm not sure of the details, but I'm sure Eleasha will update when she gets a chance. I ask that you all please keep Cody and his family in your prayers. www.caringbridge.org/va/cody

I also found out some disheartening news about a friend from Illinois. Mindy Pearse was diagnosed with an extremely aggressive form of Breast Cancer. She has already seeked some treatments and they are not working as well as we all hoped. Please keep Mindy, Steve, and their two children in your thoughts and prayers as they embark on a very tough journey. Mindy, your strength and positive attitude amaze me and I pray that your determination helps you beat this horrible disease. You are in my thoughts and prayers!

Again, keep Ellen Bowman in your prayers. Her mother was told that her cancer is back and in her lymph nodes. They have given her a few months to live. This news came days after word that Andrew's MPSIII is progressing despite treatment. I love you Ellen. Stay strong! www.caringbridge.org/page/andrewshope

I wanted to end on a more positive note so I want to let you all know that we are planning the 1st annual JOG FOR JORDAN! We are combining our MPS walk with Shawn Coble's RUN FOR REESE. We are going to hold the walk at Tanglewood park on October 8th (if everything goes as planned). I will update with more details as they are available. Please let me know if you have any contacts who would be interested in being a corporate sponsor for the race. We want to make the race "official" so that we can get runners from all over the state to participate. The race helps to raise awareness of these horrible MPS disorders and to raise money to help fund research for treatment and a cure!

Thank you for all the guestbook entries. Although I don't update everyday, I do read the guestbook. Go give your kids a big hug and kiss!

Love,
Carrie

Friday, June 3, 2005 12:46 AM CDT

There is still no word on the job front. I am getting really frustrated with the search. There are very few High School English positions open right now, and if you don't know someone, it is difficult to even get an interview. I have been told that it will get much easier to find a job in July and August because schools know exactly who they need and need to fill the positions quickly before the start of the next school year. I guess I am stuck with this job until then. I know I shouldn't complain. I am lucky to have a decent paying job, but I just do not like what I am doing here. If I were the least bit interested in accounting, I might like this job so much better, but i'm not. I know the right opportunity is out there, I am just waiting for it to fall into my lap. My grandmother continues to gain strength and appetite. It is so nice to hear good news from home. Although with the good, there is always bad . . .

I went to visit Cody Hoffman last weekend in Virginia. We played cards and Life (the simpson's version) He was in pretty good spirits, but he looks very pale and thin. It broke my heart to see him look so sick after he had been doing so well. It was an all too familiar feeling. It is amazing to me how quickly these kids go from healthy to extremely ill. I found out this morning that Cody had to have emergency surgery this morning to replace his central line. Apparently the temporary one burst. I'm not sure of the details, but I'm sure Eleasha will update when she gets a chance. I ask that you all please keep Cody and his family in your prayers. www.caringbridge.org/va/cody

I also found out some disheartening news about a friend from Illinois. Mindy Pearse was diagnosed with an extremely aggressive form of Breast Cancer. She has already seeked some treatments and they are not working as well as we all hoped. Please keep Mindy, Steve, and their two children in your thoughts and prayers as they embark on a very tough journey. Mindy, your strength and positive attitude amaze me and I pray that your determination helps you beat this horrible disease. You are in my thoughts and prayers!

Again, keep Ellen Bowman in your prayers. Her mother was told that her cancer is back and in her lymph nodes. They have given her a few months to live. This news came days after word that Andrew's MPSIII is progressing despite treatment. I love you Ellen. Stay strong! www.caringbridge.org/page/andrewshope

I wanted to end on a more positive note so I want to let you all know that we are planning the 1st annual JOG FOR JORDAN! We are combining our MPS walk with Shawn Coble's RUN FOR REESE. We are going to hold the walk at Tanglewood park on October 8th (if everything goes as planned). I will update with more details as they are available. Please let me know if you have any contacts who would be interested in being a corporate sponsor for the race. We want to make the race "official" so that we can get runners from all over the state to participate. The race helps to raise awareness of these horrible MPS disorders and to raise money to help fund research for treatment and a cure!

Thank you for all the guestbook entries. Although I don't update everyday, I do read the guestbook. Go give your kids a big hug and kiss!

Love,
Carrie

Wednesday, May 25, 2005 9:39 AM CDT

******URGENT PRAYER REQUESTS!******
I just read Cody Hoffman's website and it seems that Cody has taken a turn for the worse by spiking a fever and losing even more weight. I ask that everyone keep this family in your prayers. You can visit their webpage and offer your support at www.caringbridge.org/va/cody. Also, I received an e-mail from Ellen Bowman yesterday and she has gotten some bad news about Andrew and some even worse news about her mother. Please keep her and her family in your thoughts and prayers as they struggle with some very difficult decisions and some unwanted answers to big questions. Visit their website at www.caringbridge.org/page/andrewshope. These guys need those down on your knees prayers! Ellen & Eleasha- we are just a phone call away. Don't hesitate to call if you need anything!
Love,
Carrie

Monday, May 23, 2005 8:18 AM CDT

This is going to be short because there isn't a lot to update you on. I am continuing the job hunt for a teaching position for next year. I have several prospects but nothing for sure. I will let you know if I hear something more definite. My grandmother is doing much better and is gaining strength, energy, & finally a few pounds! Thank God for this blessing. Cody Hoffman continues to struggle a bit, but there is talk of him being released from the hospital today or early this week. We hope Cody is able to go back to the comforts of home after a long stay in the hospital. I got a bit of bad news the other day after visiting my OBGYN. She said that she believes I have Stage I or II Endometriosis. Although Endometriosis is not life threatening, it can be very painful and can cause sterility. The news didn't shock me since almost every woman in my family has developed Endometriosis around my age, but it still wasn't what I wanted to hear. If the current therapy that she put me on doesn't help with the symptoms, it will force us to make some decisions about having other children sooner than we were anticipating. Right now we will just have to wait a few months and see how things go. As always, when we know something we will pass that information on to you.

Go hug your kids!
Love,
Carrie

Monday, May 23, 2005 8:18 AM CDT

This is going to be short because there isn't a lot to update you on. I am continuing the job hunt for a teaching position for next year. I have several prospects but nothing for sure. I will let you know if I hear something more definite. My grandmother is doing much better and is gaining strength, energy, & finally a few pounds! Thank God for this blessing. Cody Hoffman continues to struggle a bit, but there is talk of him being released from the hospital today or early this week. We hope Cody is able to go back to the comforts of home after a long stay in the hospital. I got a bit of bad news the other day after visiting my OBGYN. She said that she believes I have Stage I or II Endometriosis. Although Endometriosis is not life threatening, it can be very painful and can cause sterility. The news didn't shock me since almost every woman in my family has developed Endometriosis around my age, but it still wasn't what I wanted to hear. If the current therapy that she put me on doesn't help with the symptoms, it will force us to make some decisions about having other children sooner than we were anticipating. Right now we will just have to wait a few months and see how things go. As always, when we know something we will pass that information on to you.

Go hug your kids!
Love,
Carrie

Thursday, May 12, 2005 7:59 AM CDT

This has been a very busy week. My mother-in-law and I were heading to the Rainbow walk on Saturday and my mother called to tell me that my grandmother was back in the hospital because she was having chest pain on top of all her other problems. I was ready to just drive straight to the airport to go see her in the hospital but my mother talked me into going to the walk promising that she would call me as soon as she got any news about my grandmother. I am so glad that I went. The walk was a very difficult event to attend, but I received so much support from other Moms, the doctors and nurses that treated Jordan, and some caring bridge friends that I had never met. (Joni, thanks for introducing yourself to me. It is so nice to put a face with a name.) I was also able to meet up with some of our transplant friends. Pat & Isaiah were there, and Isaiah looks great! I'm so glad I was able to see them. We also saw Angel Madison Mitchem's parents, Rachel, Joe, Ethan, and Madison Bates (Congratulations to Ethan on the sibling award!), Dan, Sue, & Tucker Hall (Tucker is looking so grown up!) & Jyrve & Karen Sears (they were on extreme makeover home edition). We were able to meet up and go out to lunch with Shawn & Steve Samuelson, Taylor (Angel Reese's mommy) and Kahlita Jones. It was a very sad day and I missed Jordan so much. Many tears were shed, but we also had many laughs remembering all the things everyone loved and misses about Jordan. So many of the nurses said such wonderful things about Jordan and about how they miss him too. It made me so proud to be his mommy. The day wouldn't have been complete without a talk with Dr. K. She was so nice and actually gave me some great information about how Patrick and I can have healthy children together. It is something that we may look into in the future, but it is really nice to know that we have options. We released balloons in honor of all our angels and Shawn and I just cried & cried over our babies. (Tracie N. we sure missed you on Saturday and we thought about you so much!). By the end of the day, I was quite sunburned and emotionally drained, but it was a good day.

On my way home, my mom called to say that my grandmother was doing quite a bit better and that the doctors were going to run a few more tests. On Sunday Mom called to tell me that the doctors had taken grandma off all of her antibiotics while she was in the hospital and she was feeling much better and actually had an appetite. They released her from the hospital and she is still feeling much better. I guess the antibiotics were making her so sick that she couldn't eat, so she is doing better without them. The doctors are going to keep her off of them for the time being and just see how she does without them. Mom said she has more energy now than she has had in months and she even sounds healthier. I thought this was a wonderful mother's day present!

We didn't do a whole lot for Mother's day because I didn't want to do anything. We did go out to dinner with Patrick's parents, brother, neice, aunt, uncle, cousin, and his cousin's girlfriend and daughter. It was nice, but I would rather have stayed at home. It was just hard to see all these Moms and their children. It really hurt that they all got to have their children with them on mother's day and I didn't and never will. It was just a little too much reality for one day. Like I said, it was just a very emotional weekend.

On to a happier note. I had an interview and sample teaching at a private high school in Durham this week and it went great. The principal complimented me on my interaction with the students. She was very pleased with the job that I had done and is very interested in hiring me. Of course, there are some budgeting issues that they are trying to work out and won't know what they can offer me for a few more weeks. They have a Spanish teacher going on maternity leave at the beginning of next year and have to pay her salary and a salary to whoever replaces her, so they don't know how much money they can offer to me. I also have a job fair on the 21st, which should give me some prospects.

Well, I think that is about all with the news from this side of the continent. We miss and love you all. Go hug your kids.

Love,
Carrie

Wednesday, May 4, 2005 8:30 AM CDT

****PRAYER REQUEST****

Cody Hoffman is still very sick and is now doing quite a bit worse. He has not been released from the hospital and it looks like his stay is going to be quite extended once again. Please keep Cody and his family in your thoughts and prayers and they try to find out how to make Cody healthy again.

I also ask that you continue to keep my Grandmother in your thoughts and prayers. The tests from last Wednesday failed to shed any light on her condition. The doctors seem to believe that her medications are making her feel so sick to her stomach and are preventing her from having an appetite. Since she still has the bad bacterial infection, they can not remove or change these medications. It seems that there isn't a whole lot that the doctors can do to make her feel better. It is just going to take time for her to regain her strength, but I'm not sure how that is going to happen if she can't eat enough to keep her healthy and strong. It seems she is in a downward spiral, and I am very worried about her.

I was able to visit with Laney Biggs and her mother and grandmother on Monday night. We went out to eat and Laney kept taking her shoes off and saying, "look at my piggies!" I was laughing so hard, but trying not to. She is a ball of fire. Even though Mom & Grandma kept appologizing for her behavior, I was eating up every minute of it. I loved every minute of her antics. She was just being a typical three year old, and it was wonderful to see!

We are also going to visit with several other transplant families this week and at the walk on Saturday. I know this weekend will be a very difficult one for me. It is my first Mother's day without my baby, and I am dreading it. The first year of firsts . . . it is torture. I'm hoping that by seeing other children who have survived transplant and are doing well, I will be comforted.

I almost forgot that when I was at the airport the weekend before last, I saw a woman going to RDU and I think her son had Hunter's Syndrome. She was rushing to board the plane, so I didn't have a chance to ask her, but I know that the child had an MPS disorder. Because of his age, body structure, facial features, and the way he walked, I'm pretty sure he had Hunters. It made me realize how horrible the disease is. The boy was probably about 6 years old. It broke my heart, but it made me thankful for the choices we made for Jordan. All these people in the airport were staring at this boy wondering what was wrong with him (i've seen the look, trust me that's what they were thinking). I was looking at him and the tears just started flowing. I don't know exactly where I am going with this story, but it just surprised me to see this child in the airport.

Ok, to end on a good note. My MK business is going pretty well. My director has challenged me to meet some new goals before we go to Seminar in July. One of the challenges is to introduce sharp women to the Mary Kay Opportunity. I have spoken to a few women, and I actually have a potential new team member. If I were on the ball, I would have two right now. I met a woman in the airport who was interested in joining and I didn't have any contracts with me. I gave her my business card, and I haven't heard anything from her. I am kicking myself in the butt for not having everything with me and not getting her phone number, but hopefully I will hear something from her. The other girl that is interested is going to sign her contract on the 15th! I am so excited. This is a great company and I love seeing the look of excitement on someone's face when they realize that they can make money by playing with make-up and being silly with a group of women. It's awesome that I get paid to do that. I will keep you updated on what happens. Don't forget (for you procrastinators) that Mother's day is SUNDAY! I have some great gift ideas if you haven't gotten a gift yet. My Mom & Connie already know that they are getting some MK for Mother's day. Just go to my link at the bottom of the page. For all the Mom's out there. Have a very happy Mother's day. I hope it is spent with your kids. Give them an extra hug and kiss!
Love,
Carrie

Tuesday, April 26, 2005 4:17 PM CDT

My trip to Illinois went very well. I really had a great time. I was so happy to be able to spend some much needed time with my family. I was able to spend Friday night and most of the day on Sunday with my Grandmother. She really looks bad. She weighs about 107 lbs. and gets very weak very easily. She goes in for more testing on Wednesday. The doctor now believes that it may be her gall bladder that is causing her all these problems. I pray that this is the cause and it can be treated quickly and easily. I have never seen her look so weak and pale.

I also enjoyed seeing many of my good friends while in town and celebrated the baptism of my nephew and birthday of my neice. We had a really good time on Sunday. My flights went well except for the puddle jumper from St. Louis to Springfield on Friday. It was a rough ride, and I was thankful to land safely.

I took a trip out to Jordan's grave site and was so upset that I could only stay for a few minutes. It is so upsetting to see nothing marking his grave. It motivated me to save some money and to check in to other places to do Jordan's headstone. The one we really want has been priced at nearly $3,000.00 because it has to be done in bronze. It is a rule at the cemetary where Jordan is buried. They only allow bronze grave markers. I called Pana Monuments today and they are going to see what they can do to get it done cheaper than that. The gentleman I spoke with thought that sounded pretty high, so he is going to see what he can do for me. We were also told that Elmo can't be put on his grave marker because it is a trademark. The gentleman said that if we have a picture of Jordan with Elmo, they can use that. I will have to do some looking. I know that things will work out and we will get a marker that will honor Jordan, but I just want it right now. I did ask (again) that they put out a temporary marker until we make a final decision on Jordan's memorial marker. Hopefully that will be placed soon.

I thought I would end on a happy note and let everyone know that Angel ^^Reese's^^ Aunt Toni & Uncle Andy are adopting a baby and will probably be able to take it home in August or September. They have been trying to have a baby for many years, and had two failed invetro treatments. I am so happy that they are finally going to get the baby that they so richly deserve! Congratulations Toni & Andy!

Love,
Carrie

Friday, April 15, 2005 3:27 PM CDT

Thank God it's Friday! After several 12 hour and yesterday's 16 hour days, tax season is over for me. I still have to stick around for a little while to do some last minute stuff, but for the most part we are done with taxes. Surprisingly, today has been a good day. Patrick sent me flowers to work this morning (beautiful tulips). He wanted to make sure that I had a good day. It worked, they put me in a good mood. He is too good to be true sometimes. Thank you Patrick. I love you with all my heart. God couldn't have sent me a better man with which to walk through life.

Then, two of my co-workers sent me some more flowers to thank me for being so helpful to them during this tax season (and for not killing anyone or threatening to). I thought that was very sweet. Even though I don't like what I am doing. I really like the people I am working with. Although I can't wait to go back to teaching, it is going to be hard to leave the wonderful people that I work with and for here.

I am going to Durham tomorrow to visit Laney Biggs and her Mom, Beth Ann while they are here for Laney's trigger-finger surgery. I am looking forward to seeing them. Other than that I am going to relax this weekend and plan my trip to Illinois for next weekend. I am so excited to see everyone. I want to wish a HAPPY BIRTHDAY to Sheridan on the 20th. I will be there for your party next Sunday! I also wanted to wish Cody Hoffman a HAPPY BIRTHDAY! He turned nine yesterday and was stuck in the hospital. He is having some more medical issues that are unfortunately keeping him in the hospital for a while. We pray that Cody recovers quickly and that this issue can be resolved without surgery! We also want to pray for Greg and Debbie Pritchard. Last I heard, Debbie was re-admitted to the hospital on Wednesday after they got home from Taiwan. I pray that she recovers quickly as well.

Well, if I don't write before, I will write when I return from my trip to Illinois. Everyone take care and give your children an extra hug and kiss.
Love,
Carrie

Wednesday, April 6, 2005 12:38 AM CDT

****I wanted to update and say Congratulations to Jan, Jacomine, & Harmen Prakken on the arrival of their new daughter. She is MPS free! We have known about the pregnancy for quite a while, but didn't want to share the news without their permission. We are so happy for them. Hanna is beautiful! ****


Well, things are going ok around here. My grandmother continues to struggle with her illness. She is doing ok, but she is not getting a whole lot better. The doctors have switched around some of her medications and this seems to have helped her stomache a little.

Debbie & Greg Prichard made it home safely with Kyan and Debbie is recovering from her emergency surgery. I can't imagine having emergency surgery in another country, but we are so glad that Debbie is doing well. I am so happy that their family is together and back in the U.S.

As for me and Patrick, we are hanging in there. We still have bad days, but for the most part we try to focus on one another and help each other through those hard times. Patrick is really enjoying his job and I am liking mine less and less. It is just so busy around our office and I am working tons of overtime. The pay checks are nice, but I can't wait to go back to teaching. I want to do something that makes me feel like I am making a difference and helping someone. I just don't get that feeling by being an administrative assistant. I still really like everyone I work with, I just don't like what I am doing. That makes a huge difference. Once April 15th has passed, I will probably like my job more, but until then I am about to pull my hair out.

Everyone pray for Katie LaMantia as she runs (walks) in a half-marathon in Jordan's honor on Sunday, April 10th. We sent her a T-shirt with Jordan's picture on it to wear during the race. We are so proud of her and honored that she would choose to run for Jordan. All proceeds from the race are going to benefit the "Pennies For Nicoll Foundation." It was started by Tracie & Doug Nicoll, Angel ^Douglas's^^ parents. It is to help families who have children with MPS and are going through transplant. They helped us with some of our expenses while Jordan was in the PICU and after his death. They are amazing people and I know that Katie is happy to make this donation in Jordan's name. We think she is great for doing it!

Well for all of you in the Decatur area, I am coming home to visit the weekend of the 22-24th. I will probably be staing in Taylorville with my parents, but I may spend a night in Decatur with Patrick's parents too. I will try to get in touch with some of you before I come home so that we can get together while I am visiting. I can't wait to see everyone, especially my family! I miss and love you all!

Love,
Carrie

P.S. Spring has sprung and it is so beautiful here!

Monday, March 28, 2005 10:19 AM CST

****Please Pray for Debbie & Greg Prichard (Angel ^^Noah's^^ parents). They went to Taiwan to pick up their new son Kyan, and Debbie is in the hospital and very sick. Please visit their website and offer them love, support, and encouragement. They have been through so much and my heart breaks that they are once again experiencing "setbacks." You can visit their website at www.caringbridge.org/hi/kyan
Thanks,
Carrie

We hope everyone had a happy Easter. Patrick and I both had to work, so we didn't really do anything special. That's ok, it's just not the same without our families being close anyway. I can't wait until April 15th has passed. I will finally be able to make a much needed trip to Illinois to see my friends and family.

Patrick and I have been really discussing moving to Illinois, but we have decided to stay where we are for now. We decided that we would see what the Railroad offered him if he were to go back. The offer was less than desirable, so we have decided to just stay here. I am looking in to some possible teaching positions close to where we live, and he really enjoys his job at the airport. He thought about transfering to Bloomington, but he is not eligible for 6 months. Things just don't seem right for us to make the move right now. Although I would love to be closer to my family, we feel that staying in North Carolina is going to be less stressful than trying to move back to Illinois. We are finally getting back on our feet and saving money for Jordan's grave marker, and if we move we will be struggling again. We are trying to do things that cause as little stress as possible these days. I know that both of our parents were disappointed, but we have to do what is best for us as a couple. Also, with Patrick working for the airline we will be able to visit as much as we want (after April 15th).

It is so hard to believe that it has been six months since our angel earned his wings. It seems like only yesterday I was pushing him in his swing and he was holding his hands up to enjoy the ride. I remember him grabbing his blocks and rolling over to hit Patrick in the head with them and laughing because Patrick would say, "Hey, that hurt!" Jordan thought hitting Daddy was so funny! I miss his smile and his little giggle. I miss the way he would almost fall asleep in my arms and then reach up to touch my face to try to keep himself awake. This weekend was very difficult for me. There was something about hitting that six months mark that just hit me hard. It helped that I had to work so much this weekend, but I found myself crying at every song I heard on the radio, or every memory I had of Jordan. Sometimes I just feel so cheated. Every child I see reminds me of Jordan. I find myself wanting to buy a toy or outfit for Jordan even though I know he can't use it anymore. I just want to do something that makes me feel better, but nothing does. I just cry because I know that I will never have another Jordan. It breaks my heart that I can't have Jordan back. We were great parents . . . why? I know we aren't supposed to know why. I know that Jordan had a greater purpose that I am not meant to understand, but that comforts me very little. I am selfish! I wanted to keep him. My mind tells me that there is no point in feeling these things because I can't change it, but some days my heart chooses not to accept that. Some days it does, but today it chooses to ache.

-Carrie

Friday, March 18, 2005 9:50 AM CST

Happy Anniversary Mom & Dad (Dale & Sheila)! Your love and respect for one another after all these years has set a wonderful example for me and Patrick. We love you both. Have fun on your trip!

Happy Birthday yesterday to Todd Vohland! When we come home, we will celebrate with you.

This is going to be a quick update because I am soooo busy. I have been working lots of overtime, and haven't had much time for fun, but the paychecks are worth it.

I wanted to quickly update everyone on Cody. He is doing better, has gained back a few pounds, and there is talk of him being released from the hospital this weekend. YEAH Cody! Keep getting better buddy!

My grandmother is still feeling very ill. Her pnemonia has cleared, but she is still very sick. She is losing weight and having trouble eating. I am very concerned for her. My mother is also concerned and is going to take her to another doctor on Monday. Hopefully this will give us some answers. Please continue to keep the prayers up for Cody and my grandmother.

A bit of good news for those in Illinois . . . Patrick and I are discussing moving back to Decatur. It is not definite yet, but it is a serious consideration. We both dislike being this far away for Jordan and our families, especially with my grandmother being so sick. We also miss all of our friends there, not that we won't miss many great people here too, but we have to do what's best for us. I am so homesick that I can't hardly stand it. I know so much of that is because I miss Jordan, but I need to be closer to my family. I miss my Mom & Dad, my sisters, my neice and nephew, and my grandma, among many others. We will let you all know something when we have a more definite idea of what we are going to do.

I've also decided that I want to go back to teaching. At first I didn't want to go back. I had no desire to do anything, but now I feel a strong need to do something that is important. I know how great I felt about myself when I was teaching and I really miss it. I miss the students. Anyway, I think it is time to go back to what I loved.

OK, so it wasn't a quick update, but at least I finally updated.

Love,
Carrie

Wednesday, March 9, 2005 4:17 PM CST

The Mary Kay facials on the bone marrow unit went well once I got to the unit. I had a hard time going back to the hospital. I broke down in the car and had to call my Mom for support. She reminded me of all the things that everyone did for us while we were taking care of Jordan. I took a deep breath and prayed for strength. The anticipation of going back to the unit was worse than being there. Although a few tears were shed, the mothers really enjoyed being pampered, and it made me feel good to be able to give something back.

Patrick and I are doing well. We are staying busy with work, but we are looking forward to a break soon so that we can go visit Decatur. Of course it will have to be after April 15th, but I think we will be heading that direction soon. I can't speak for Patrick, but I am homesick.

I want to ask all of you to keep my grandmother in your prayers. She is still not recovering as well as we would like. The doctors still haven't pinpointed exactly what is causing the shortness of breath and exhaustion. We hope that she will have some answers soon. I also want everyone to keep Cody Hoffman in your prayers. He was admitted to the hospital yesterday for loss of weight and is having problems eating. He has lost 9 lbs., and for those of you who know Cody, you know that he can't afford to lose the weight! They placed a central line today and ran many tests so that the doctors will hopefully know something soon. You can visit their website at www.caringbridge.org/va/cody. They love to get messages, so let them know that you are checking on them.

Love,
Carrie

Thursday, March 3, 2005 3:03 PM CST

Well, things are still very hectic around here. What was I thinking working in a CPA firm during tax season? That's ok the overtime is worth it (most days). Patrick is really enjoying working at the airport. He really enjoys working with the passengers. I'm so happy he is doing something that he enjoys doing.

The Mary Kay business is going well. I am actually doing something really neat this weekend. I am going up to the bone marrow unit to do facials for all the Moms up there. I'll even do ones for the Dads if they want. It will be difficult to walk through those doors again, but I really want to do something to help other people. Why not help people who are going through something that I can completely understand? Although I am nervous about how I will react to being back on the unit, I am excited about going and doing something nice for all those women Who spend all their time taking care of their sick children.

I am still working on my book. I don't do it very often, but every once in a while I really feel compelled to write about Jordan and our experiences. It is a great outlet for me to express the ups and downs of transplant and the grief process. It will take a long time to write because I can't devote much time to doing it. I like the way I am writing better anyway because I write when I feel compelled to write about a certain piece of the entire journey. Someday I will put all the pieces together and have an entire book. Until then, it is a great way for me to let out all my different emotions.

My grandmother is doing better, but she is still not improving as quickly as we would like to see her improve. She is now at her own house, but I don't know how comfortable I am with her being by herself. There are many people close by, but I know I would feel better if someone were with her. My Mom feels the same way, but Grandma is stubborn and wants to be on her own. You can't tell my Grandmother what to do. I am so much like her.

Patrick had a good birthday (except for wrecking the car). Yes, he got in an accident on Saturday on his way home from work. A girl slammed on her brakes and Patrick couldn't stop in time. He hit her. The good news is that no one was hurt, but the bad news is that we will be using some of our tax return to pay the $500 deductible to have the car fixed.

We had planned on using most of the return for Jordan's grave marker. I found out today that the one I really want for him is about twice as much as we thought it would cost. We may have to rethink our options and choose something different. The memorial park is supposed to be sending me some more information with prices, so we can decide exactly what we want and can afford. We'll let you know what we decide.

Oh, I almost forgot to mention Katie. Katie LaMantia is running in a half-marathon in St. Louis on April 10th. She is running in Jordan's honor and all the money she raises is going to the Pennies for Nicoll Foundation. They helped us with some of Jordan's funeral expenses. The foundation raises money to help families of children with MPS disorders who are going through transplant. I will post more information about the race when it gets closer. I am going to see what I can do about coming home for the race. I may not be able to since it is the weekend before taxes are due, but I will see what I can do.

Well, I've rambled long enough. Thanks for continuing to check on us. We love and miss you all.
Love,
Carrie

Saturday, February 26, 2005 11:01 AM CST

HAPPY 29th BIRTHDAY PATRICK! I LOVE YOU!

Update from Wednesday Feb.23rd-

I know I haven't updated in a while, but I have been so busy. I have been enjoying time with my husband. I really missed him. He did well in his classes and so far really likes his job. He gets to work directly with the passengers at the airport and even has to make announcements over the intercom. Those of you who know Patrick well know what a huge deal that is for him. He wasn't thrilled about that part of the job, but he is even enjoying that now. I think being around all those people all day is really helping him get back to the real world. He is finally accepting the fact that life does go on and although he was unwilling, he is going to be a part of it.

We celebrated Valentine's day on Friday night. It was very nice. We didn't do anything fancy, we just spent time together. Saturday night I went out with the girls for a bachelorette party for my friend Emily. Patrick went to the Batchelor party with her fiance Robert. It was a really fun night, but way too late!

I am working a several hours of overtime each week because we are most certainly into tax season. I don't mind though because I like the paychecks. Patrick and I did our taxes and found out we will get a return that will be large enough to pay for Jordan's headstone. We are so happy that we will be able to get exactly what we want to honor his memory. We will post pictures once we get everything done and get it placed. This may take a few months to do, but at least we will have exactly what we wanted for our precious angel.

My Mary Kay business is going well so far. I am going to the conference with several consultants from my area in March, and I am really excited. We tried out the new Microdermabrasion last night and it is awesome. I can't wait to get my set.

We want to thank everyone who continues to come to the website to check on us and see how we are doing. The messages help to remind us how much we are loved, especially on those not so good days. I also wanted to thank everyone for the many prayers for my grandmother. She is now at home with my Mom and Dad. She is not well enough to go home by herself yet, but she is slowly recovering. The doctors still are unsure about the nodules in her lungs, but like I said before they are going to keep a close watch on them to make sure they are not changing. For now, she is doing well and we pray that she continues to heal.

Love,
Carrie

Wednesday, February 23, 2005 10:40 AM CST

I know I haven't updated in a while, but I have been so busy. I have been enjoying time with my husband. I really missed him. He did well in his classes and so far really likes his job. He gets to work directly with the passengers at the airport and even has to make announcements over the intercom. Those of you who know Patrick well know what a huge deal that is for him. He wasn't thrilled about that part of the job, but he is even enjoying that now. I think being around all those people all day is really helping him get back to the real world. He is finally accepting the fact that life does go on and although he was unwilling, he is going to be a part of it.

We celebrated Valentine's day on Friday night. It was very nice. We didn't do anything fancy, we just spent time together. Saturday night I went out with the girls for a bachelorette party for my friend Emily. Patrick went to the Batchelor party with her fiance Robert. It was a really fun night, but way too late!

I am working a several hours of overtime each week because we are most certainly into tax season. I don't mind though because I like the paychecks. Patrick and I did our taxes and found out we will get a return that will be large enough to pay for Jordan's headstone. We are so happy that we will be able to get exactly what we want to honor his memory. We will post pictures once we get everything done and get it placed. This may take a few months to do, but at least we will have exactly what we wanted for our precious angel.

My Mary Kay business is going well so far. I am going to the conference with several consultants from my area in March, and I am really excited. We tried out the new Microdermabrasion last night and it is awesome. I can't wait to get my set.

We want to thank everyone who continues to come to the website to check on us and see how we are doing. The messages help to remind us how much we are loved, especially on those not so good days. I also wanted to thank everyone for the many prayers for my grandmother. She is now at home with my Mom and Dad. She is not well enough to go home by herself yet, but she is slowly recovering. The doctors still are unsure about the nodules in her lungs, but like I said before they are going to keep a close watch on them to make sure they are not changing. For now, she is doing well and we pray that she continues to heal.

Love,
Carrie

Sunday, February 13, 2005 12:00 AM CST

Happy Valentine's Day tomorrow!
This week was much better than last. It is amazing how God sends you people when you need them. I went to an ash wednesday service with a friend from work and then went to the service at Clyde's Chapel Baptist church today. The people there are so sweet. They did so much for our family while Jordan was sick and I enjoy going to see all of them. Patrick has passed all of his tests for his training, and will be coming home on Friday. I can't wait to see him. I have missed him so much.

I am still very concerned about my grandmother. She is still in the hospital and has not improved much. Her pnemonia is improving, but the infection is still very bad and the doctors have not yet figured out exactly what is causing her so many problems. We have heard this before. Please keep her in your thoughts and prayers. I don't have a good feeling about what the doctors are telling her. The pulmanologist (lung doctor) told my mom this week that my grandmother has sever rhemetoid nodules in her lungs. With my grandmother's history of breast cancer, any of these nodules could contain cancer cells. The doctors really don't know and my grandmother is too weak to do a biopsy. Even if it is cancer, there is nothing they can do about it at this time. She is too weak to go through chemo. or to have them removed. The doctors have decided to let her rest for a while and just keep an eye on the nodules. She will have another CT scan of her chest in 3 months to determine if the nodules have changed. I pray that these are only there from her arthritis and have not become cancerous. Again, please keep her in your thoughts and prayers.

Eleasha, Cody, Greg, & Riley are coming for a visit today and we can't wait to see them. They are visiting Duke for their two year post transplant studies. You all have a safe trip, and we'll see you soon.

Jordan-Thanks for sending mommy a dream about you last night. I loved being able to hold you in my arms again. I love and miss you.

Give your kids an extra hug and kiss today.
Love,
Carrie

Sunday, February 6, 2005 10:09 PM CST

What a week . . . I've been doing pretty well, but this week has just been too much and I had a major meltdown. I think going to Cassie's memorial service on Sunday just put me in the wrong frame of mind for the rest of the week. Monday night I missed Jordan so badly and of course I miss Patrick too. I cried myself to sleep and felt no better when I woke up Tuesday morning.

I dragged myself out of bed and went to work. My day just went from bad to worse. We had a big project at work that had to be done and no matter what we did, we just could not get it right. After three attempts (which took all day), my boss came up to my desk and told me that he had made a mistake and the whole audit report needed to be redone before sending it to the client. I was so frustrated that the tears started flowing. He told me it wasn't my fault, but that didn't change the fact that I had to redo the work that I had spent all day fixing (only to find out I had fixed it the wrong way.) It was an oversight on his part, but I felt responsible for not catching the mistake earlier. I told my boss that I was having a bad day and he said, well sometimes you just have to put things aside and move on. I looked at him with tears in my eyes and said, "that's easy for you to say; you have three healthy children." He felt terrible. He appologized for being so uncaring. His comment wasn't meant to be taken the way I took it, but I was just in a sad mood, and I took what he said the wrong way. He thought I was upset at doing the work over and over again, and I was talking about Jordan. We were on a completely different page. After that, my day was just down the tubes. It just seems when I am having a bad day emotionally, that nothing else goes right either. The day didn't end much better when I went to a memorial service for the wife of a man I work with. Bob Cody is the guy who hired me. His wife just died of Ovarian Cancer. She had been battling it for a few years, and he and I have had a few heart to hearts about watching a loved one fade away without being able to do a thing. I felt like I really needed to go, but it too brought back all the memories from Jordan's service and I just couldn't stop myself from crying. I went home and cried myself to sleep again.

Wednesday was a little better at work, but I was still a little upset. When I got home from work, my Mom called to tell me that my Grandma (Annie) was in the hospital. They had to take her by ambulance because she was so weak that she could hardly get out of bed. They admitted her with Pnemonia and an extremely bad infection in her lungs on top of that. She was also severely dehydrated. I spoke with her on Thursday and she was doing a little better, but she has a long way to go. Mom said that she was doing a little better this weekend.

By Friday, I was ready to have a little rest and relaxation. Mike and Connie took me to the mountains to see their best friends, Kathy and Buster Bridges. They cheered me up. We had a good time visiting and walking in the trails in the mountains. It was a good de-stresser. Some days are just really hard and without Patrick here to get me through them, I feel lost sometimes. I will be so glad when he is back home.

I did get some good news from Patrick though. He got another 100 on his 2nd test. He now has the highest average in his class. I am so proud of him. He has been working really hard and trying to do well. He has another test on Tuesday, and he swears that this one is going to be really hard. I teased him and said, "yeah, you'll probably only get a 99 on this one." I know he will do fine, but he always worries about things like this. He can't study enough. Every time I talk to him, he is on the computer or in his room studying. He did take a break tonight to watch the superbowl. Congratulations to all the Patriots fans! Cherie, I know you are crying in your beer right now. I still love you even though you are an Eagles fan. Someday I will convert you to a Packer fan!

Please say an extra prayer for Grandma Glavish. She is pretty sick and is feeling depressed. She has been feeling lousy for a long time and is sick of being sick. Here's to hoping this week is better than last!
Love,
Carrie

Monday, January 31, 2005 5:24 PM CST

Happy Birthday Connie (Patrick's Mom)! I hope you have a wonderful day!

Patrick finished his first week of training and had his first test. He has been telling me all week about how he was worried he wasn't going to pass this test, but today he calls me to tell me that he got a 100n it. Yeah, he should have been really worried! (Yes, you detect a hint of sarcasm in that statement.) I am very proud of him. I knew he would have no problems, but he sometimes doesn't believe in himself as much as I believe in him. Anyway, one down and three more to go. He will be home in 18 days, and I can't wait.

I am keeping pretty busy while he is gone. A few friends have had Mary Kay parties and the on-line E parties, and they have kept me busy. I have also been getting really busy at work with tax season upon us. I didn't know what I was getting into working in a CPA firm during tax season. It is crazy around there. That's ok though because I really like the people I work with and that makes all the difference. Patrick's parents have been keeping me busy during my free time. We talk and watch movies, and laugh and cry. I am so happy they are here to keep me company while Patrick is gone.

Patrick's great-aunt Cassie passed away this week. She was 100 years old, so it wasn't a really sad funeral. Patrick's parents and I went to the memorial service to celebrate a good, long-life lived. That is how it should be - Live 100 years and accomplish much. Of course being at the service brought back thoughts of Jordan's service, and I couldn't hold back the tears. Most people were crying tears of joy at the funeral because Cassie was where she should be, but I couldn't help but wonder why Jordan didn't get the same opportunity. I just couldn't stop crying. Then a lady asked Connie how Jordan was doing and Connie had to tell her that he passed away in September. She looked at me and I just looked away and lost it. I felt so bad for her because I know I made her feel like crap, but I just couldn't help it. I miss him so much. Some days it is as painful as the day he died. I try so hard to move forward, and I think I am doing well, and then something like that makes me feel like I'm starting all over again. I know it will get more tolerable, but it's just so hard.

I did want to end with some really good news. My Godmother's daughter Kelly and her husband had their baby today! Kelly and Zach Green had a 10lb boy this afternoon and named him Liem Gharett! Congratulations Zach & Kelly. I am so happy for you both!

Love,
Carrie

Monday, January 24, 2005 9:51 PM CST

Well Patrick left for Dallas, TX today for his training for American Eagle Airlines. He will be gone until Feb. 18th, and I miss him already. Patrick's parents are coming to visit to keep me company. Hopefully I can keep myself busy between work, visitors, and Mary Kay. For those of you who ordered from me, the order got delayed because of our terrible weather last week, but it finally got here tonight, and I will be shipping it out this week. I have to go through all the boxes and make sure I have everything.

Speaking of the weather, remember our Christmas travels to Illinois . . . I had a flash back last Tuesday. We got two inches of Ice here and it took me six and a half hours to get home from work. I left work at 5:30PM and didn't get home until after midnight. It usually only takes me 20-25 minutes to get home from work in rush-hour traffic. I was exhausted to say the least, and it wasn't nearly as fun being stuck in a traffic Jam without Patrick. He did call me on my cell phone to check on me several times though.

For those of you who watched Extreme Makeover Home Edition on Sunday night, our friend Jhyrve Sears (www.caringbridge.org/ca/Jhyrve) was featured. She was transplanted for Krabbe disease in March of 2004. We met her and her mother when Jordan was life-flighted to Duke for his back-bone infection last year. They are such a sweet, loving family, and I was glad to see them get the help that I know they needed. Dr. K. was even on the beginning of the episode. It is so heartwarming to see a family, who truly needs it, get the help they deserve. I was in tears through the entire show. They showed the hospital and clinic, and it brought back so many memories. That is just one of the many things that brings our heartache to the suface every day. We miss him dearly and love him even more.

Love,
Carrie
Jordan -- watch over Daddy while he is gone and keep him strong and safe. He is very sad and needs some extra guidance from a very special angel over the next few weeks. Mommy and Daddy love and miss you more than words can ever say. Please send me angel kisses in my dreams.

Monday, January 17, 2005 4:06 PM CST

Thank you to everyone who placed an online order with me for Mary Kay. I had a great debut and am looking forward to delivering my first order next week. I am keeping busy and meeting some fantastic women. I really like it so far. I also have some great news about Patrick. He got a job with American Eagle Airlines as a Customer Service Agent. He will be boarding passengers and handling customer service. I am really excited for him to start a new job. He is happy but nervous. He has to go to training in Dallas, TX for 4 weeks starting Next Tuesday, but it will be worth it for free plane tickets. I told him that I am going to be visiting Illinios a lot more now that I can fly for free. I don't think we can actually fly for free until he completes his training, but he will be done on February 18th. I will miss him, but I think this is a great opportunity for him to get out and around other people. It seems that we will finally be able to get back on our feet financially. As far as emotionally, we have a long way to go. Although it is getting less painful to look at pictures and remember Jordan being happy, it still breaks my heart when I think of all the pain he endured in his short life. There will always be little reminders of how hard his struggles were. I will always ache when I see a father walking with his son, holding his hand or playing. I will always be heartbroken that Patrick never had that opportunity with Jordan. I will always feel anger when I see a mother or father yell at a child at the supermarket for simply being a child. I will always want to run to protect that child from any ounce of pain. I know these are my burdens. God has given them to me, and I will carry them with me forever, but I will never forget what an impact Jordan had on me and many others. He will never be forgotten. The lessons he taught me are a gift that I will treasure forever.
Love,
Carrie

Monday, January 10, 2005 7:47 PM CST

A million times a day I see something that reminds me of Jordan. I wonder if I will ever see the face of another child or hear a baby cry and not cry too. I was watching Troy the other night and a baby cried in the movie, and I just lost it. I heard Jordan crying and my heart broke. I never know when these episodes will come, and there is nothing I can do to stop or control them. It happens in the shower, while I'm lying in bed at night, in the grocery store check-out, in the file room at work, or while watching a movie. God just allows a little to come out at a time. I cry, wipe away the tears, take a deep breath, and then go on. I guess that's all I can do is go on. Hopefully the new year will bring with it healing and some joy. Patrick and I agree, this year can't be worse than last year. Things can only get better from here.

We spent new years with our friends Robert and Emily. We decided to go to a pool room here in Raleigh. I entered a break contest and won a $50.00 gift certificate, so I paid our tab. It was nice for four people to go out on new years and only spend $6.00. Don't be too impressed with me winning the break contest (I only hit in one ball). I guess everyone else was just that bad.

This year is bringing some new opportunity for us. I have moved from temporary to permanent at my job for the CPA firm. This came with a raise, paid holidays, vacation, and insurance that kicks in next month. Since we are approaching tax season, I will also be getting some overtime. Patrick and I were both happy for the much needed boost to our income. Patrick also had a job interview earlier this week and should be hearing something in the next week or two. He doesn't want me to say any more than that for fear of jinxing his chances. I will let you all know when we know more. I am also becoming an independent beauty consultant for Mary Kay cosmetics. My debut party is on Friday the 14th. If anyone wants to place an order, you can visit my website at www.marykay.com/CAHORTON or click on the link at the bottom of this page. If you place an order on or before the 14th, you will recieve 10 percent off for helping me place my first order as a consultant. You can pay with a credit or debit card (secured through propay). My new philosophy is keep myself busy! The busier I stay, the less time I have to sulk and feel sorry for myself.

We are enjoying a visit from Patrick's parents this week. They came back to North Carolina to move some more of their stuff back to Illinois and decided to visit for a few days. We are happy to be able to spend some time with them.

We received our brick in the mail the other day. Yes, it was a brick. Patrick's parents and sister bought a brick at Lambeau field (Green Bay Packer's) for Jordan's birthday. They had it engraved with his name, birth day, and death day. Of course we cried like babies when we opened it. It is beautiful, and we are honored to have a replica to display in our home, even if the Packer's are out of the playoffs. Yeah, they had a very poor showing on Sunday -- not the finest game ever played. I guess there is always next year. We also got all the information on Jordan's star. It is in the constellation Hercules "the Hero" for our hero. It couldn't be more fitting. When I figure out how, I will post a way for you guys to see where it is on a star map. I also need to thank April Kostenski for the candle for Jordan at the hospital over Christmas. Thank you so much April, what a thoughtful way to honor Jordan. Thank you to Beth Anne, John, and Laney Biggs for the ornament. If there is anyone I am forgetting, please forgive me. All of my days run together and I can't remember who I've thanked. Please know that we appreciate all gestures great or small, all the cards, phone calls, e-mails, and guestbook entries. Knowing that so many people care and still check up on us, helps cheer us up on those not so good days.
Thank you all and God bless. Don't forget to give your kids an extra hug and kiss tonight!
Love,
Carrie

Wednesday, December 29, 2004 10:19 AM CST

Well, we survived our first Christmas without Jordan. Being close to friends and family made the holiday a little easier, but there was a definite emptyness felt during our holiday get togethers. We made the best of the holiday trip to Illinois, even though the trip almost didn't happen. I got off work last Wednesday and Patrick told me that Indiana and Ohio (two states we must travel through during our trip) are supposed to be getting lots of snow. Patrick said, "I don't think we should try it." The thought of spending Christmas without Jordan and without my family just overwhelmed me, and I began to cry. I just couldn't bear the thought of staying in North Carolina for the Holidays. It would be different if Patrick's parents were still here, but everyone is back in Illinois. I was determined that I was going to Illinois for Christmas.

Patrick knows me well enough to know that I was going to pout about it forever, so he said, "we'll try it, but if we get stuck I will remind you of this conversation." Don't think for a second he didn't remind me of that fact several hundred times during our snow and ice filled journey. Everything started out fine. We decided to avoid Cincinnati, Ohio because that's where the "worst" was supposed to be. Yeah, Right! We decided to go through Louisville, Kentucky and up Highway 65 to Indianapolis. Right outside Louisville it started to sleet; it took us 3 hours to go about 50 miles, and Patrick was thinking about turning around and going home. Of course I was disappointed. We were so close.

At about 2:00 in the morning, we decided that we would stop, get something to eat, and get a hotel outside Louisville and maybe try again in the morning. We ate and got back on the highway to look for a hotel. About the time we got into Indiana, all traffic came to a complete stop. Highway 65 North was blocked by a semi, which had jack knifed across the entire highway. Patrick and I were thankful that we had just filled the car with gas and had eaten. We called the highway patrol, and they politely informed us that we may be there a while because most of their wreckers were also stuck. GREAT! We had our pillows and blanket, and decided to take a nap. Apparently all the other drivers were feeling the same way because there were very few awake drivers and the DJs were calling it the Highway 65 hotel. Finally about 10:30 in the morning, enough people with 4-wheel drive came through and made a path that we were able to turn around. It was a good thing too because my bladder was about to burst. We made it to a gas station and filled up the car. Admitting defeat, we were planning on going back to North Carolina. While waiting in line at the gas station, a guy informed us that Hwy 31 was pretty clear and that we could get back to 65 North were the Hwy was open using that route. I got a gleam in my eye and Patrick knew there would be no talking me out of it. I wasn't going to sit for 7 1/2 hours in snow just to turn around and go home. Patrick decided we would try it, but reminded me again that we had gotten stuck because I wanted to try it before.

The rest of the trip was fairly uneventful except for a semi just about running us into a snow bank. If it weren't for Patrick's "Days of Thunder" driving moves, we would have had an even longer story to tell. Needless to say, we made it to Illinois safely after a 21 1/2 hour drive. I must say that the 12 1/2 hour drive home was much more pleasant. Although it was a long trip, Patrick and I can laugh about the experience. I guess Jordan wanted to send us a little humor for Christmas. You would think that being stuck in a small car for that long together would have ruined our trip, but it really wasn't that bad. We slept, talked, and watched other drivers get stuck in the snow and laughed at their stupidity and ours for traveling when we shouldn't have. As always, Patrick and I made the best of the situation and decided that we would always have a good story to tell.

The end of our trip did end with some bad news. Reggie White, a former Packer and one of Patrick's heroes, died suddenly on Sunday morning. He will be fondly remembered and greatly missed. Shortly after we heard this news, a friend of Patrick's from home called to tell us that Rick Krekle had been killed in a car accident. We met Rick through our neighbors in Decatur, Carol & Les Ekiss. Les and Rick were best friends and invited us to go out with them a few times. We will miss Rick. We pray for his family in their time of loss, especially his two high school-age children.

We pray that everyone has a safe and happy new year. We will be spending ours with our friends, Robert and Emily. Please be safe and give your kids an extra hug and kiss.
Love,
Carrie

Monday, December 20, 2004 9:50 PM CST

*Pictures of Jordan's 1st Christmas*

Sometimes a song can make a good day a bad one. Patrick said he had a rough day today. It must be in the air. We both heard songs on the radio today that made us really miss Jordan. I don't know what song Patrick heard, but I heard "The Dance" by Garth Brooks. We played that song at Jordan's funeral. I know that song so well that after the first two notes the tears started flowing. Although it made me sad, I couldn't change the station. I guess sometimes you just have to let the tears flow. I was ok once I got to work and started keeping myself busy, but later on in the day . . . I was in the file room and started crying for no reason. I sat there quietly and wiped away my tears and whispered I love you to Jordan. Sometimes it seems like it's been so long since he's been gone because the days go on forever, but then sometimes the pain feels like the first day. I don't know how to explain it, but it seems to come in waves. Sometimes I can think of happy memories and I cry a tear of joy for all his smiles. Other times I think of him being sick and cry tears for all his pain. Sometimes I cry because I feel cheated. Sometimes I cry because I feel blessed to have had him at all. I feel anger, pain, sadness, longing, and heartache, but longing is by far the worst.
Missing him is the hardest emotion to deal with.

One of the hardest things about losing Jordan is to watch all the other people who loved him suffer too. I watch Patrick, knowing he is feeling the heartache and longing that I feel, and I am helpless. I know there is nothing I can do to take away his pain. I watch our parents and siblings cry over my child, and I can't ease their pain. I read guestbook entries about all the lives he touched, and I wonder why he couldn't have lived longer to touch more lives.

I don't want to celbrate Christmas this year. I want to stay in bed and sleep until it's all over, but I won't. Patrick and I are going to drive to Illinois to spend time with our family. That is what we need. We will laugh and cry, and we will make it through our first Christmas without Jordan. I'll try to remember how happy he was last year. He wasn't sick or in the hospital. He was at home with Mommy and Daddy. We had a tree and presents and we thanked God that he was well enough to celebrate with our family. He ripped up the paper and was so excited, not about the presents but about ripping the paper.

I probably won't update again until after Christmas. We are leaving Wednesday, when I get off work. We should be in Decatur sometime early Thursday. We will be heading back to North Carolina on Sunday. We pray that everyone has a very safe, healthy, and happy holiday. Take time to hug everyone extra tight and kiss your kids one extra time.

I want to thank Beth Anne Biggs for the Christmas ornament. It is beautiful. I also wanted to thank Cathy and Buster Bridges for the card and money. Cathy, the card was perfect. You always know exactly what to say. I will have a "memory" Christmas.

Merry Christmas!
Love,
Carrie

^^Jordan^^, I know you are spending Christmas with Jesus and all the angels, and I know you are having lots of fun. Please watch over Mommy & Daddy and send us Christmas kisses. Christmas won't be the same without you. You were my angel on earth and now you are a perfect angel in heaven. How many people can say they held an angel? I love you and miss you with all my heart!

Monday, December 13, 2004 7:45 PM CST

Two years ago today was the day of Jordan's first transplant. I look back on those first few weeks in the hospital, and we were so innocent. Although we knew that the treatment was dangerous, we had no idea of where that journey would take us. We struggle with whether or not we made the right decisions with Jordan, but it's easy to question yourself when you know the outcome. If we would not have done the transplant, we would have lost Jordan to a horrible disease. We would have stood by helpless as our perfect little boy deteriorated in front of our very eyes. It is ironic that we had the same outcome by trying to give him a chance at a healthy life. The difference is that Jordan only suffered a few short weeks as opposed to several long years without transplant. I can't speak for Patrick because I know he doesn't share my opinion, (he is much harder on himself than I am) but I know that we made the best decisions with the information that we had at the time. I have to remind myself of the fact that God led us down the path that he chose for us before Jordan was a thought in our minds. I have to remind myself that we did everything we could because it is easy to forget that and beat ourselves up over "what ifs." I know that because of transplant, Patrick and I were able to spend more time with Jordan. If Jordan had been healthy, we both would have had full time jobs and not been at home with him everyday. Because we didn't know how much time we had with Jordan, we made the best of every moment. I cherished every smile, every laugh, and every touch. I miss my baby more than I could ever state in words, but I am thankful for every moment that I had with him.

I want to thank Gary, Donna, Kassie, Kendra, and Kelly Yeske for the beautiful Christmas ornament and I wanted to share with everyone the poem it had with it. I've put it on the webpage below Jordan's picture.

I also want to thank some wonderful friends who named a star in Jordan's honor in the constellation Hercules "the hero." We are honored to have a star for our hero! Jordan, Mommy and Daddy love you and we miss you so much. Please send Mommy another dream. I loved the first one.
Love,
Carrie

Friday, December 3, 2004 8:50 PM CST

I have a picture of Jordan on my computer. Sometimes I look at it and smile, other times I look at it and cry. I never know how I am going to react to the exact same thing. It is the same picture that has been on my computer for months, yet I react differently to seeing it. I guess I will always feel this way. Today, everything makes me cry. I miss Jordan with a heartache that is indescribable. I am haunted by the memory of closing the door to the PICU room knowing I would never see my son again, never again hold him in my arms, never again kiss his sweet face, and never again hear his voice, his laugh or his cry. I made the mistake of watching the home video of his first bath the other night. I just missed him so badly. I wanted to see his beautiful face, hear him laugh. I had forgotten that when we gave him his first bubble bath he cried. It was only for a few seconds when I first put him in the water. Then Patrick got in the tub with him and Jordan laughed so much. But, when I turned on the video to see my laughing, smiling baby, I heard an unhappy, scared cry. I had forgotten! Oh my God, how could I have forgotten the sound of his voice? Then I heard him laugh and saw him smile and I cried about that. My biggest fear is that I will forget something about Jordan. I don't want to forget anything, except the time that he was in pain. I am so thankful that we have the home videos of his first bubble bath, first birthday, and even a few videos of other speacial times and video of nothing special. All those videos are like treasure to me. If something happend to those videos or my pictures, I would be crushed. They are my insurance that I won't forget my precious angel. I spoke with my Dad this evening, and he convinced me that I need to write a book. A few other people have told me that I need to tell the story of Jordan's life. It could be good therapy, so I think I will try it. I am going to use several of the journal entries that I have posted on this page. I think they will help me to remember exactly how I felt at different times throughout the ups and downs of Jordan's journey. I'll let you all know how it goes. I want to thank you all again for all the encouragement and support that you continue to give to us. As i've said before it means so much, but it especially helps on days like today. Yesterday was not so bad, but today is not so good. I just ask God to continue to guide me and Patrick and give us strength.
Love,
Carrie

Monday, November 29, 2004 4:22 PM CST

Patrick and I enjoyed our Thanksgiving in the mountains of North Carolina. We spent the holiday with Cathy & Buster Bridges (Patrick's parents best friends). We consider them family and were happy that they asked us to be a part of their family get together. We were unable to go to Illinios for Thanksgiving, but plan to go there for Christmas. Thanksgiving was very hard for us. It was hard to think of all the things we are thankful for when we have lost so much. Despite my hard feelings, I was able to come up with some things that I am thankful for. I am thankful that Jordan is in heaven and not suffering. I am thankful for a wonderful husband that I couldn't survive this heartache without. I am thankful for a loving and supportive family who has been there everytime we've fallen. I am thankful for good friends who listen to my story and cry every time I tell it (even though they've heard it a thousand times). I am thankful for the time that I had with my beautiful son, although it was too short. I am thankful for every family who's life Jordan touched in his short life. I am thankful for all the friends and people I have met through this experience. I am thankful that God is by my side every day willing me out of bed and urging me to face another day. I am thankful for every person who continues to check this website and leave words of encouragement and support and for everyone who offers a silent prayer because he/she has no idea what to say to us. We love you all and are thankful that you are a part of our lives.

Love,
Carrie

Friday, November 19, 2004 3:50 PM CST

Well, another week has passed and we still wonder if things get easier. Some days we are ok others are not so good. From what I have heard from other parents who have experienced the loss of a child, it stays like this for some time. I look forward to the day when I can think of Jordan and remember mostly happy memories instead of those last several weeks in the PICU. I'm afraid that those memories will always haunt us.

It is amazing how God works though. The other day I was feeling extremely sad and I was missing Jordan badly. It took the perspective of a child to comfort me. My sister's daughter Sheridan told her mommy, "Jordan likes it in heaven." My sister, Angie, asked her what she meant. She said,"Baby Jordan likes heaven; he plays with the balloons we sent him." My sister asked her if she had a dream about Jordan. Sheridan said, "No Mommy (in typical three year old fashion), Jordan told me. I saw him." My sister told me this story and it just touched my heart so much. I thanked her for telling me as I wiped the tears from my face. It amazes me that God sent me this message through my three year old neice.

I have had a few job interviews this week so I hope to hear something soon about a more permanent job. Right now I am doing temp work through Executive Staffing in Raleigh. Thank you to everyone who continues to check up on us even though we don't update as often anymore. It really means so much to us that we are still getting support from all of you. Thank you again.
Love,
Carrie

Wednesday, November 10, 2004 12:32 AM CST

Happy Birthday Grandma Glavish!

This week has been tough for me and Patrick. We have had so many mixed emotions. With the holidays quickly approaching we don't even feel like making plans to celebrate them. It just isn't the same without Jordan. We are probably going to stay in North Carolina for Thanksgiving and head to Illinois for Christmas. We don't know how long we will be home. It all depends on what work looks like. I am working through a staffing agency in Raleigh. Last week I helped them out in their office and I really enjoyed it. It's hard to go to work, but I know that it is the best thing for me to do right now. If I don't have a job, it is hard to have the motivation to get out of bed in the morning.

Patrick and I also took Sunday to clean out Jordan's room and pack away his crib and toys. Nothing had been touched since Jordan went into the hospital on August 12th. Although many tears were shed and it was a difficult thing to do, we knew it was time. We could no longer stare at an empty crib and many toys that were never and will never be played with. Every smell, sound, and item in that room was a constant reminder of how much we miss our son. It is easier to walk in this room now. Don't get me wrong, we don't want to forget Jordan, we couldn't if we tried. We just feel as if we were ready to quit drowning ourselves in our misery. Neither of us could walk in his room before without becoming hysterical. Now we cry occasionally while sitting in this room (which is now our office), but we are slowly getting better. Maybe this is the first step in our healing. Every parent that I have spoken to has told me the same thing. "The pain doesn't go away, it just gets easier to manage over time." I guess we are trying to begin that management. Although I still don't know if I will ever be able to reflect about the last two years without feeling pangs of guilt and regret, not about the choices we made for Jordan's care, but about things I wish I knew. I have regrets for all the things that Jordan was never able to experience. I am comforted by the one thing that I know Jordan did not lack and that was love. He was loved dearly by his parents, family, friends, and even strangers, and he knew it. I know he touched so many lives and helped further research for these horrible diseases. I am so proud of my son! I am proud of his attitude, determination, the person he was, and would have been. And I miss him with a heartache that is immeasurable and unspeakable.

Love,
Carrie

Wednesday, November 3, 2004 8:26 AM CST

Hello to all-
Hopefully in the next few days we will have a president. I wish I could say I was surprised that we don't have a definitive answer yet, but I'm not. I guess Ohio is the new Florida.

We went to the Run for Reese on Saturday and it went well. It was a difficult day, but we made it through. Shawn and I discussed plans to combine our efforts next year to do a Run for Reese/Jog for Jordan. Hopefully we can raise awareness about MPS disorders while raising money to help fund research to treat and cure these horrible disorders. At the same time we are able to honor our beautiful sons.

I visited with Ellen, Brian, Simon, and Andrew Bowman Monday night. They are at Duke for Andrew's post transplant studies. It was great seeing them. I wish we lived closer together. Andrew had his brain MRI yesterday and had trouble coming off the ventilator. The Bowman's are concerned because this has never been a problem with Andrew in the past. Andrew is scheduled to have surgery this morning and I haven't heard from Ellen yet on how it went. I ask that everyone keep Andrew and his family in your prayers as he goes through surgery and recovery. You can visit their website at www.caringbridge.org/page/andrewshope.

I still have thank yous to send out, so if you haven't gotten yours yet, it will be on the way soon.
Love,
Carrie

Friday, October 29, 2004 2:37 PM CDT

Two years ago today I held the most precious baby in my arms for the first time. He stole my heart from the first look into his beautiful blue eyes. I remember feeling so happy because I had an awesome gift from God. I also felt angry because he had a horrible disease that would destroy his beautiful body and mind. He looked so perfect; it was so hard to believe that anything was wrong. One month and three days ago I held the most precious baby in my arms for the last time while he became an angel. I remember feeling so proud that he was my son; he fought so hard. I remember feeling so angry and heartbroken that I couldn't keep him. I still feel happy and proud to be the Mommy of a precious angel that God allowed us to have but only for a short time, and I'm angry that ^^Jordan^^ is not here with us to celebrate his second birthday.

Today we will try to remember last year's birthday bash and how happy we all were. It was a great day -- One of many wonderful memories that ^^Jordan^^ left us. Those memories also come with their share of pain. There have been many tears shed today, some of joy but mostly of sorrow. We have good days and bad days. We will get through, but today is not a good day for us. Our only joy today is knowing that ^^Jordan^^ is safe and comfortable in Heaven. We love and miss you baby boy. We hope you are having one heck of a heavenly birthday bash! Happy 2nd Birthday ^^Jordan^^. Mommy and Daddy miss and love you so much.

Love,
Carrie

Monday, October 25, 2004 11:17 AM CDT

It has been four weeks since our baby earned his angel wings and I think the pain gets worse everyday. Everything around us reminds us of how much we miss our sweet precious ^^Jordan^^. Patrick and I celebrated our four year wedding anniversary on the 21st, but it was bittersweet. I remember last year's celebration. Patrick, Jordan and I sat around our kitchen table and had a candlelight dinner. I remember Patrick looking at me and Jordan and saying, "It doesn't get any better than this." We had it all. Now we are starting over. It is so hard to believe that only a few months ago we had a happy, beautiful baby boy and now he is gone. We miss him so much -- more and more everyday.

We were further saddened yesterday of news about a Hendrick Motor Sports plane crash. We don't know many details, but we do know that 4 family members of Rick Hendrick were killed in the crash including his son and brother. As most of you know Hendrick Motor Sports' Pit Crew for Kids does many things to help the bone marrow unit. Many of the pit crew members visited Jordan while he was in the hospital including his last stay in the PICU. Our hearts go out to Rick Hendrick and the staff at Hendrick Motor Sports. Our thoughts and prayers are with you all.

On Saturday,October 30th, we will be participating in the MPS 5K walk/Run for Reese. In honor of Reese Coble. His mother Shawn is also dedicating the walk to ^^Jordan^^ and has dubbed it the "Jog for Jordan." If you would like to make a donation to the MPS society to help with research to cure these horrible diseases, here's your chance to help. If you would like to make a donation in Jordan's name. Please make payment to The National MPS Society and send it to: Run For Reese, 4840 Seminole Court, Winston-Salem, NC 27127

Love,
Carrie

Tuesday, October 19, 2004 9:51 AM CDT

I've thought about updating several times, but I don't know what to say. I don't even know how to begin to tell you all how we are doing. The truth is, we don't even know how we are functioning. Patrick and I took a few days and just drove. We didn't set an exact destination, we just got in the car and started to drive. We shut off our cell phones or left them in the car when we got out places. It was nice just to get away from everything. Patrick and I focused on each other. We laughed a lot and we cried even more. The trip was bittersweet. We needed the break from reality, but we couldn't escape our feelings of loss and heartache. These were intensified when we found out that on Sunday, October 10th, Shelby Green also lost her battle(two weeks after ^^Jordan^^). I never met ^^Shelby^^, I only met her family in the Pediatric Intensive Care Unit(PICU). ^^Shelby^^ had been in the PICU for her entire life (nearly five months). We got very close to her mommy and daddy (Sheri & Jeff). They are such great people and our hearts break for them with the loss of their precious baby. Their website is www.caringbridge.org/nc/shelbyelizabeth
Please offer them words of love and support.

This weekend I came to visit my parents and we went to the Lake of the Ozarks. My parents have a place there and we went fishing all weekend. It was fun, but I wished ^^Jordan^^ could have been there with us. He did send us some big fish on Sunday, so I guess he was there. I will go home tomorrow and I must admit that I am ready. I love my family, but I am really homesick to see Patrick.

We are both getting everything in order to try to go back to work soon. It is really hard to think about having to take on any type of responsibility again, but I think we need something to keep us going. I need something to make me get out of bed in the morning, or I will stay there all day and never do anything. We thank all of you for continuing to look in on us and continue to give us your support. This has been a long journey and the hardest part of our journey is just beginning. Please keep us in your prayers. We need strength to face the days ahead. Thank you and God Bless! Give your kids an extra hug and kiss today!
Love,
Carrie

^^Jordan^^ -- Mommy and Daddy miss you so much. We long to see you again and hold you in our arms. We are so sad without you here. Please give us a sign that you are ok. We love you angel!

Thursday, October 7th, 11:42 am CT

Last Thursday, Jordan was wrapped in a seasame street blanket that belonged to a long time family friend when he was a baby. Many of us left something with him to remind him of how much he was loved by us all. Elmo and Peter rabbit rested on either side of him. He had Daddy's and Papa Mike's pocketwatches that would have been given to him as an adult. He also had a picture of Mommy & Daddy, a painted picture from cousin Sheridan, a guardian angel from cousin Beth, a golden Eagle coin from PawPaw Dale, a picture of Jesus from cousin Beth's boyfriend, and many hugs and kisses from us all. Jordan was wrapped in our memories and love. His service was beautiful. Jordan sent us a warm, still, sunny day. When we released the baloons at the graveside, a gentle breeze came up to grab the balloons quickly. Jordan was eager to catch them. We released green and gold for the Packers, and the family released Elmo balloons. Although all the family was spread out, all the Elmo balloons came together in one bunch as they drifted higher in the sky.

It was a beautiful day and one of the worst of our lives. No one should have to bury his/her child. We are comforted by many happy memories of Jordan, but haunted by pictures of his suffering. We want him back so much, but we know that he is now healed. We are so grateful and feel so blessed to have had him for 1 year, 10 months, 25 days, 4 hours, and 55 minutes, but we feel cheated for not having him longer. We are angry, heartbroken, and beside oursleves. We have so much support of family and friends for which we are so grateful, but nothing changes the sense of longing to hold Jordan in our arms again. We sleep with his Packers blanket every night. We can still smell him. We can't wash it for fear it will wash away his sweet scent. Patrick and I are trying to be strong for each other, but we both just want to lock the doors, shut off the phones, and never come out of our room. I sleep all the time, and Patrick can't sleep at all, so between us we have a "normal" sleep schedule.

People keep asking us where we are going to go and what we are going to do. The truth is, we don't know. We are not capable of making any decisions anymore. We went from having so much resposibility to having none in seconds. We are lost without Jordan. We are not going to make any major decisions for a little while. We need time. We are going to take a few days to go somewhere -- just the two of us. We haven't decided where we are going yet, but we just need to get away from everyone and everything. We wanted to get through all the funeral and memorial services and we did. Now we have to focus on each other. We thank everyone for the wonderful, heartfelt guestbook entries, cards, phone calls, meals, flowers, and donations to help with funeral expenses. Your kindness and generosity have always touched our hearts and still does. We have met so many amazing people through Jordan's journey and we are so grateful for you all. We will update the website to let you all know how we are doing, but for a while we may not be doing it on a regular basis. We are going to let our hearts and our guardian angel ^^Jordan^^ be our guides.

Love to you all,
Carrie & Patrick

Thursday, October 7, 2004 11:33 AM CDT

Last Thursday, Jordan was wrapped in a seasame street blanket that belonged to a long time family friend when he was a baby. Many of us left something with him to remind him of how much he was loved by us all. Elmo and Peter rabbit rested on either side of him. He had Daddy's and Papa Mike's pocketwatches that would have been given to him as an adult. He also had a picture of Mommy & Daddy, a painted picture from cousin Sheridan, a guardian angel from cousin Beth, a golden Eagle coin from PawPaw Dale, a picture of Jesus from cousin Beth's boyfriend, and many hugs and kisses from us all. Jordan was wrapped in our memories and love. His service was beautiful. Jordan sent us a warm, still, sunny day. When we released the baloons at the graveside, a gentle breeze came up to grab the balloons quickly. Jordan was eager to catch them. We released green and gold for the Packers, and the family released Elmo balloons. Although all the family was spread out, all the Elmo balloons came together in one bunch as they drifted higher in the sky.

It was a beautiful day and one of the worst of our lives. No one should have to bury his/her child. We are comforted by many happy memories of Jordan, but haunted by pictures of his suffering. We want him back so much, but we know that he is now healed. We are so grateful and feel so blessed to have had him for 1 year, 10 months, 25 days, 4 hours, and 55 minutes, but we feel cheated for not having him longer. We are angry, heartbroken, and beside oursleves. We have so much support of family and friends for which we are so grateful, but nothing changes the sense of longing to hold Jordan in our arms again. We sleep with his Packers blanket every night. We can still smell him. We can't wash it for fear it will wash away his sweet scent. Patrick and I are trying to be strong for each other, but we both just want to lock the doors, shut off the phones, and never come out of our room. I sleep all the time, and Patrick can't sleep at all, so between us we have a "normal" sleep schedule.

People keep asking us where we are going to go and what we are going to do. The truth is, we don't know. We are not capable of making any decisions anymore. We went from having so much resposibility to having none in seconds. We are lost without Jordan. We are not going to make any major decisions for a little while. We need time. We are going to take a few days to go somewhere -- just the two of us. We haven't decided where we are going yet, but we just need to get away from everyone and everything. We wanted to get through all the funeral and memorial services and we did. Now we have to focus on each other. We thank everyone for the wonderful, heartfelt guestbook entries, cards, phone calls, meals, flowers, and donations to help with funeral expenses. Your kindness and generosity have always touched our hearts and still does. We have met so many amazing people through Jordan's journey and we are so grateful for you all. We will update the website to let you all know how we are doing, but for a while we may not be doing it on a regular basis. We are going to let our hearts and our guardian angel ^^Jordan^^ be our guides.

Love to you all,
Carrie & Patrick

Sunday, September 26, 2004 7:56 PM CDT

We stayed constantly vigil at Jordan's bedside through last night and into the early morning. We finally sent the grandparents back to the hotel at 1:30 am. Patrick and I stayed at Jordan's side as his blood pressure continued to fall and his heartrate slowed. Jordan's hands and feet began to chill, his heart slowed more and we knew the end was near. We wrapped him in blankets, held his hands and feet,whispered to him how much we loved him and waited for Jordan to let us know. At 4:54 I felt something ache in my heart. I looked at Jordan's monitor and his heart raced. I called out Patrick's name and at 4:55 Jordan's heart stopped. We cried out "NO." As the alarms echoed our cries, "Angel" by Sara McLachlan played softly in the background. The nurses and doctors rushed in, but Jordan was already gone. No suffering, no struggling, no gasping, only peace -- a peace that cannot be put into words. Patrick and I were the only ones in the room with him. Jordan knew we were there and he decided, "all done." The doctors disconected all the monitors, tubes, IVs, and vent. We held Jordan in our arms and rocked him while we cried. We bathed him, and then we had to take the hardest steps of our lives -- walking out of his room and leaving him behind.

Today we are broken and will never be repaired. Jordan was our entire life and to go on without him seems unbearable. I never knew that a heart could hurt so much. Part of us died in that room with Jordan today. We will never be complete again, and we are beside ourselves with grief. We know that Jordan is now in no pain, has no bruises, no cuts, no scars. He only has beauty and health. We have decided not to do an autopsy. Jordan has been through enough. We know what happened, his body couldn't keep up with his spirit. We didn't test him for donor cells from the second transplant. We don't need to know. It matters not, now he is healed. No infection, no MPS, no transplant. Though we are tired, we fear sleep. I took a short nap this afternoon and when I woke up, I thought Jordan was still here. In one second the truth crushed my heart with the force of a thousand tons as the thoughts of this morning flooded my mind. Where do we go from here? How do we get out of bed tomorrow? How do we go to sleep tonight? We are taking one minute at a time, putting one foot in front of the other and reminding ourselves to breath, even though we would rather not.

We are taking Jordan back to Illinois for burial. We want family and friends that have never met him to be able to say goodbye. We are making arrangements and will be flying to decatur tomorrow morning. Jordan's visitation will be Wednesday evening (his 23 month b-day) and the funeral Thursday morning. We will post exact times after we make final arrangements Tuesday morning. Anyone who wants to come say goodbye is welcome. He will be shown at Brittlinger and Earl Funeral home, 2827 North Oakland · Decatur, Illinois 62526 · 217-875-1283. I know many people are asking what they can do to help us. We are going to give Jordan a beautiful burial to celebrate his life. Anyone wanting to contribute can contact the funeral home at the address and phone number above or mail to our address below.

^^Jordan^^ you are among so many wonderful angels. I know there was a huge gathering at the gates for you today. Please watch over Mommy and Daddy. Give us strength as we endure life without you. We can't wait to see you again.
I didn't tell Eleasha that this song was playing when ^^Jordan^^ earned his angel wings, but I know that is not coincidence that she decided to use this as a tribute to Jordan. I chose to keep it here because Jordan is truly in the arms of many ^^Angels^^!
Love,
Carrie

Angel by Sarah McLachlan

Spend all your time waiting
for that second chance,
for a break that would make it okay.

There's always some reason
to feel not good enough,
and it's hard, at the end of the day.

I need some distraction,
Oh, beautiful release.
Memories seep from my veins.

Let me be empty,
Oh, and weightless,
And maybe I'll find some peace tonight.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You are pulled from the wreckage,
Of your silent reverie.
You're in the arms of the angel,
may you find some comfort here.

So tired of the straight line,
and everywhere you turn,
there's vultures and thieves at your back.

The storm keeps on twisting.
Keep on building the lies
that you make up for all that you lack.

Don't make no difference,
escape one last time.
It's easier to believe in this sweet madness,
Oh, this glorious sadness,
that brings me to my knees.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You're in the arms of the angel,
may you find some comfort here

^^JORDAN^^-
FLY FREE BABY BOY, YOU ARE HEALED! "ALL DONE"

Sunday, September 26, 2004 7:56 PM CDT

We stayed constantly vigil at Jordan's bedside through last night and into the early morning. We finally sent the grandparents back to the hotel at 1:30 am. Patrick and I stayed at Jordan's side as his blood pressure continued to fall and his heartrate slowed. Jordan's hands and feet began to chill, his heart slowed more and we knew the end was near. We wrapped him in blankets, held his hands and feet,whispered to him how much we loved him and waited for Jordan to let us know. At 4:54 I felt something ache in my heart. I looked at Jordan's monitor and his heart raced. I called out Patrick's name and at 4:55 Jordan's heart stopped. We cried out "NO." As the alarms echoed our cries, "Angel" by Sara McLachlan played softly in the background. The nurses and doctors rushed in, but Jordan was already gone. No suffering, no struggling, no gasping, only peace -- a peace that cannot be put into words. Patrick and I were the only ones in the room with him. Jordan knew we were there and he decided, "all done." The doctors disconected all the monitors, tubes, IVs, and vent. We held Jordan in our arms and rocked him while we cried. We bathed him, and then we had to take the hardest steps of our lives -- walking out of his room and leaving him behind.

Today we are broken and will never be repaired. Jordan was our entire life and to go on without him seems unbearable. I never knew that a heart could hurt so much. Part of us died in that room with Jordan today. We will never be complete again, and we are beside ourselves with grief. We know that Jordan is now in no pain, has no bruises, no cuts, no scars. He only has beauty and health. We have decided not to do an autopsy. Jordan has been through enough. We know what happened, his body couldn't keep up with his spirit. We didn't test him for donor cells from the second transplant. We don't need to know. It matters not, now he is healed. No infection, no MPS, no transplant. Though we are tired, we fear sleep. I took a short nap this afternoon and when I woke up, I thought Jordan was still here. In one second the truth crushed my heart with the force of a thousand tons as the thoughts of this morning flooded my mind. Where do we go from here? How do we get out of bed tomorrow? How do we go to sleep tonight? We are taking one minute at a time, putting one foot in front of the other and reminding ourselves to breath, even though we would rather not.

We are taking Jordan back to Illinois for burial. We want family and friends that have never met him to be able to say goodbye. We are making arrangements and will be flying to decatur tomorrow morning. Jordan's visitation will be Wednesday evening (his 23 month b-day) and the funeral Thursday morning. We will post exact times after we make final arrangements Tuesday morning. Anyone who wants to come say goodbye is welcome. He will be shown at Brittlinger and Earl Funeral home, 2827 North Oakland · Decatur, Illinois 62526 · 217-875-1283. I know many people are asking what they can do to help us. We are going to give Jordan a beautiful burial to celebrate his life. Anyone wanting to contribute can contact the funeral home at the address and phone number above or mail to our address below.

^^Jordan^^ you are among so many wonderful angels. I know there was a huge gathering at the gates for you today. Please watch over Mommy and Daddy. Give us strength as we endure life without you. We can't wait to see you again.
I didn't tell Eleasha that this song was playing when ^^Jordan^^ earned his angel wings, but I know that is not coincidence that she decided to use this as a tribute to Jordan. I chose to keep it here because Jordan is truly in the arms of many ^^Angels^^!
Love,
Carrie

Angel by Sarah McLachlan

Spend all your time waiting
for that second chance,
for a break that would make it okay.

There's always some reason
to feel not good enough,
and it's hard, at the end of the day.

I need some distraction,
Oh, beautiful release.
Memories seep from my veins.

Let me be empty,
Oh, and weightless,
And maybe I'll find some peace tonight.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You are pulled from the wreckage,
Of your silent reverie.
You're in the arms of the angel,
may you find some comfort here.

So tired of the straight line,
and everywhere you turn,
there's vultures and thieves at your back.

The storm keeps on twisting.
Keep on building the lies
that you make up for all that you lack.

Don't make no difference,
escape one last time.
It's easier to believe in this sweet madness,
Oh, this glorious sadness,
that brings me to my knees.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You're in the arms of the angel,
may you find some comfort here

^^JORDAN^^-
FLY FREE BABY BOY, YOU ARE HEALED! "ALL DONE"

Sunday, September 26, 2004 9:25 AM CDT

It has been a long journey...Jordan has fought the good fight.

At 4:55 a.m. surrounded by his loving mother and father...Jordan's little heart stopped working...he took his last breath and went home to heaven.

He will be desperately missed as he has always been so loved by so many...

With freverent prayers we have so desired that his healing be here on earth...but alas underneath the great spirit that was Jordan, his body has given out...

I pray that now more than ever you will pray for Carrie and Patrick as they begin making prepartions for Jordan's services. They have decided to take him back to Illinois.

As soon as they can they will update.

I am leaving you with my dedication to Jordan at the bottom...

In Love & Prayer...
Eleasha (Cody's Mom)

Angel by Sarah McLachlan

Spend all your time waiting
for that second chance,
for a break that would make it okay.

There's always some reason
to feel not good enough,
and it's hard, at the end of the day.

I need some distraction,
Oh, beautiful release.
Memories seep from my veins.

Let me be empty,
Oh, and weightless,
And maybe I'll find some peace tonight.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You are pulled from the wreckage,
Of your silent reverie.
You're in the arms of the angel,
may you find some comfort here.

So tired of the straight line,
and everywhere you turn,
there's vultures and thieves at your back.

The storm keeps on twisting.
Keep on building the lies
that you make up for all that you lack.

Don't make no difference,
escape one last time.
It's easier to believe in this sweet madness,
Oh, this glorious sadness,
that brings me to my knees.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You're in the arms of the angel,
may you find some comfort here.

Sunday, September 26, 2004 9:25 AM CDT

It has been a long journey...Jordan has fought the good fight.

At 4:55 a.m. surrounded by his loving mother and father...Jordan's little heart stopped working...he took his last breath and went home to heaven.

He will be desperately missed as he has always been so loved by so many...

Withe freverent prayers we have so desired that his healing be here on earth...but alas underneatht he great spirit that was Jordan, his body has given out...

I pray that now more than ever you will pray for Carrie and Patrick as they begin making prepartions for Jordan's services. They have decided to take him back to Illinois.

As soon as they can they will update.

I am leaving you with my dedication to Jordan at the bottom...

In Love & Prayer...
Eleasha (Cody's Mom)

Angel by Sarah McLachlan

Spend all your time waiting
for that second chance,
for a break that would make it okay.

There's always some reason
to feel not good enough,
and it's hard, at the end of the day.

I need some distraction,
Oh, beautiful release.
Memories seep from my veins.

Let me be empty,
Oh, and weightless,
And maybe I'll find some peace tonight.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You are pulled from the wreckage,
Of your silent reverie.
You're in the arms of the angel,
may you find some comfort here.

So tired of the straight line,
and everywhere you turn,
there's vultures and thieves at your back.

The storm keeps on twisting.
Keep on building the lies
that you make up for all that you lack.

Don't make no difference,
escape one last time.
It's easier to believe in this sweet madness,
Oh, this glorious sadness,
that brings me to my knees.

In the arms of the angel,
fly away from here,
from this dark, cold hotel room,
and the endlessness that you feel.

You're in the arms of the angel,
may you find some comfort here.

Saturday, September 25, 2004 11:02 PM CDT

The last several hours have been touch and go for Jordan. His kidneys have shut down and the rest of his body is showing the effects of a long battle. We are keeping constant vigil at his bedside as he continues to fight, but with much less energy. The path has been chosen and as much as we want Jordan to remain here with us, our hearts break with the reality that he is not to be healed with us here on earth. His blood pressure has been very low all day despite every effort of the wonderful doctors and nurses taking care of Jordan. We were blessed to hold Jordan in our arms this evening. Patrick and I took turns holding Jordan until our arms were as heavy as our hearts. He is hanging on, but the doctors say it will more than likely be hours as opposed to days. We still hope and pray for a miracle for Jordan, but we also face reality with bitterness. Thank you all so much for the many phone calls, visits, and prayers for our precious angel.
Love,
Carrie

Friday, September 24, 2004 7:57 PM CDT

Well Jordan's kidneys have failed. He is not peeing. This happened pretty suddenly very early this morning. This is almost certainly a sign that his poor little body is giving out. Pastor Ann visited us today from Boston she was the person who baptised Jordan When he was a few days old. She is a dear friend. We all gathered in Jordan's room for prayer. Let me make it very clear that we are not giving up. It is however looking very blique.I am beside myself with fear. My heart breaks for him. Jordan and his Mom and Dad are very tired. None of us can take much more of this. Please say a prayer for Jordan. Jordan you are Daddys best friend and I love you as much anyone has ever loved anyone. I can't bear the thought of going on without you please get better.

Thursday, September 23, 2004 2:15 PM CDT

Jordan is not doing as well as we had hoped. His bilirubin continues to climb (36) and his liver is not working the way it needs to. Jordan is requiring insulin and clotting factors that his liver should produce but isn't. Jordan has also stopped tolerating his feeds. His stomache and digestive system are not passing the feeds. After 11 hours of feeds, Jordan was vomiting and the nurse pumped 80 ccs of undigested food out of his belly. These are all indications that Jordan is heading in the wrong direction. Dr. Driscoll came in to Jordan's room today and told us that there is really nothing else that they can do except support Jordan (as they are). He thinks that we should not try to perform any heroic measures to save Jordan. We are not ready to give up. He told us that Jordan is extrememly critical and that his situation could worsen very rapidly. We are going to meet with Dr. Kurtzberg at 5:00 this evening and hopefully she will be able to give us a better insight as to what we can do for Jordan. Our main concern is helping Jordan be comfortable. We don't want him to be in any pain. Jordan's kidney functions actually improved a little from last night, but his liver issues are so large at this point, that we are concerned that Jordan can't overcome them. We know that if any child can recover from all these problems, Jordan can. We also know that his body is not as strong as his spirit and that we may have to make some very difficult decisions within the next few days. Dr. Driscoll told us we wouldn't have weeks to make these decisions, but I want to know what Dr. K. thinks. Please continue to keep Jordan in your prayers. I will let everyone know what Dr. K. says to us.
Love,
Carrie

Tuesday, September 21, 2004 10:56 AM CDT

Jordan is still hanging in there as are the rest of us. His bilirubin went up to 32 yesterday, but is back down to 30 today. We are hoping this is the start of some small improvement, but as those in the transplant world know there are no real answers. Jordan remains on low vent settings and his lungs remain fairly clear. The doctors are not concerned about his breathing. They are more concerned about his liver and kidney functions. He continues to pee, but the diuretics are at the maximum dose and his blood pressure is starting to drift down. If it gets too low, we have to cut back on the diuretics. If his kidney functions get too high (which is bad) we have to cut back on the diuretics. Jordan has been negative for fluid for the past few days, and we want him to stay that way. Decreasing the diuretics may cause him to retain the fluid again. It is a very delicate balance. We have to get rid of about 1100 more ccs of fluid before Jordan is even for his stay in PICU. When he gets that low, we should start seeing some real improvements in his kidneys, lungs, and hopefully liver too. His heartrate is lower than it has been lately, which tells us he is more comfortable. We pray that the doctors are able to keep him comfortable without giving him even more narcotics. Please continue to keep Jordan in your thoughts and prayers. He is a fighter, but it doesn't hurt to constantly storm heaven with our pleas to keep him on earth with us.

Thank you to Courtney and the Hendricks Pit Crew for Kids program for the bobble-head doll, the Jimmy Johnson bear, the Jeff Gordan car, the Jeff Gordan poster, and the Elmo book. It was awesome to see you guys and as always you are so generous. Mom says thanks for her bobble-head too! I also want to thank Holley Sharp for the card and money. I pray that things improve on the medical front for your family as well. We love you all. Thank you all so much for your kindness and generosity.
Love,
Carrie

Sunday, September 19, 2004 3:32 PM CDT

Hello Everyone!

This is Eleasha, Cody's mom...

Carrie asked me to take a few minutes to let everyone know how Jordan is doing...

The past few days have been basically the same...Jordan continues to do well with the diuretics...and his vent settings remain on low, acceptable levels...

His billirubin is still climbing (27 today) so the kidneys and the liver are still having trouble functioning correctly and remain the main source of concern...PLEASE FOCUS YOUR PRAYERS ON THOSE TWO ORGANS!!!!!!

Jordan lost his arterial line last night...they were worried that he may have had a clot or something else going on...the on-duty nurse neglected to call Carrie...so she was a "little" unhappy this morning...Now Jordan is requiring regular blood pressures instead of via the line via a cuff and this is very uncomfortable for him...

He is still on the Dilaudid and is on his maximum dose...while he seems to be fairly comfortable...he is starting to wake up more and more often...soon they will either have to switch the drug or raise the dosage to continue to give him comfort...

Please continue to focus all of your prayers and support for Jordan...

Thanks for checking in...

In Love & Prayer...
Eleasha

Thursday, September 16, 2004 3:32 PM CDT

I know we should be updating more but it is so hard to find time. The word fo the day is same. There has really been no change for worse or better. Carrie and I are still living out of the university Inn and waiting to see what happens. Jordan is peeing a little better, so hopefully that is a sign of good things to come. The Doc's are going to try a couple of new meds to try to get some of the fluid off of Jordan. We will update as soon as we know more. Thank you to everyone for their prayers and suport.

Patrick

Monday, September 13, 2004 11:57 AM CDT

Jordan is still hanging on. His bilirubin continues to climb and his kidneys are still very stressed, but he is still fighting. He is down to 30 percent oxygen (room air is 21 percent) on the ventilator and has managed to avoid the oscillator. His urine and stool output are better today, but he has a long way to go. Jordan's pain continues to be under control and his heartrate and bloodpressure are finally normal again. He is resting now. This was our main goal for Jordan (to be pain-free and resting). Dr. Martin again told us today that Jordan is about the same as he was a few days ago, but he did add that Jordan is probably the sickest child in the hospital right now. We have some difficult decisions ahead of us in the next few days. The doctors are starting to ask us questions about how much support and heroic measures we want to take with Jordan if something changes for the worse. These are decisions that no parent should have to make and ones that we aren't ready to make. I know that Jordan will let us know what the best thing for him is. Until then, we pray for Jordan's complete healing and ask that his healing be here with us. Thank you all for your continued prayers and support. It means so much.
Love,
Carrie

Sunday, September 12, 2004 6:46 PM CDT

I know I said in my last entry that we would know which road Jordan was going to take in the next 24-48 hours, but once again, Jordan is on his own time! He is pretty much unchanged for the last 48 hours. He is not better, but he is not really worse either. We will take this for now. Jordan's pain is finally under control, and he can rest and hopefully heal.

I taught in a private Catholic high school before I had Jordan. This school has a retreat each year called "Kairos." I've had the honor of experiencing this retreat twice. I learned there that things happen in "God's time." That is the meaning of the word "Kairos." Although I don't understand why Jordan is fighting, he is. It is not for me to know. It is completely out of my hands and I have to trust that God has a plan for my precious son. I pray that the plan includes complete healing here with us, but I know that my wish may not be granted. So . . . we wait and keep vigil at Jordan's bedside. We have placed pictures and medals and my cross at Jordan's side. We have wrapped him in his favorite Packer's blanket and we are trying to give him every comfort that he would enjoy in his own bed at home. We pray that God continues to comfort him and allow him to be healed completely. His oxygen requirement is slightly less than it was yesterday, and he is having some stools. Now we just got to get his kidneys and liver working better. One thing at a time. I know that Jordan will be healed "in God's time." To all of those Kairos members out there, I am constantly saying to Jordan, AIAOYIFTRMALY! I know that he understands.

I want to thank everyone who has called, visited, signed the guestbook, and offered comfort and prayers. This is the most difficult thing I have every experienced and your love and support means so much to me and the rest of the family. I want to leave you with the poem that we have placed in Jordan's room to inspire him to keep fighting.

Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me--
Anything can happen, child,
ANYTHING can be.

--Shel Silverstein
Where the Sidewalk Ends

Love,
Carrie

Friday, September 10, 2004 4:44 PM CDT

Overnight Jordan has gone from bad to worse. His bilirubin continues to climb with no reason. The ultrasound gave us no answers. Jordan's kidney function is almost nothing. He is requiring higher settings on the vent and the doctors are talking about switching him back to the oscilator. His body is just giving up. He has worked so hard for so long. The doctors are running out of options. My biggest issue right now is that Jordan is in pain and the doctors are having trouble managing it. They keep giving him meds., but are unable to keep him comfortable. I just talked with Dr. Scabolcs and he is going to see to it that Jordan is comfortable. I told him that Jordan deserves that much. He agreed that there was no reason for him not to be comfortable.

The doctors went through with the transplant today, and Jordan did fine, but we are afraid that these donor cells are coming a little too late. We will remain prayerful and ask God to heal our precious baby and allow those new cells to take over his body, but we are still being realistic. We know too well that the doctors can't fix everything. We know that God has a plan for Jordan and no matter what type of medical care he gets, it is no match to God's plan. I am just not ready to give up yet. Jordan is my baby and I know that he has amazed these doctors time after time. I pray that he again amazes them and just starts healing. Jordan is at a crossroad. The two paths are very different. One is complete healing here on earth, the other our worst fear. The next 24-48 hours are going to be critical for Jordan. The doctors said that within that time we will know which road Jordan has taken. We watch at his bedside and pray that he takes the road we would chose for him if we were able. We ask all of you to remain constant with your prayers for Jordan. We will update when we know more.
Love,
Carrie

Thursday, September 9, 2004 8:47 PM CDT

Please do not let up on the prayers. Jordan is not doing well today. Last night the doctors were thinking about attempting to take Jordan off the vent. this morning. Jordan had other plans. His requirements have gone up over night and throughout the day. He is still not on extremely high settings, but his Oxygen is at 50 percent. The doctors said that his chest x-ray looks worse. He has more fluid on his lungs and in his body again today. We are so confused. One day he is negative 200 ccs and the next day he is positive and the doctors don't know why. Everytime we think we are close to turning Jordan around, something else goes wrong. His Kidney's are functioning at 15-20 percent of normal. His billirubin is at about 18. The doctors just don't know what is causing him to go up and down like this. We thought and were so hoping that it was the infection (which they also found in his lungs), but he is on the Septra and that should be helping. The doctors did another ultrasound of his liver today to see if anything is happening that they are missing, but we won't see those results until tomorrow. Dr. Martin says that there isn't a whole lot that we could possibly find that we are not already treating him for. Right now we just don't know what is making Jordan sick and how to make it better. It is in God's hands and for those of you who know me, you know that I am not happy with that scenario. I have always been extremely independent and goal oriented. I am a control freak! When I can't do anything to help Jordan and I know he is hurting. I feel helpless and extremely frustrated. I hate it when someone tells me "I don't know." I want to be told, "oh, it's such and such and this is how we treat it." So, of course I made the nurse give me a list of all Jordan's meds. I am bound and determined to find a drug that he is allergic to or something because I can't stand to sit by and watch him suffer. I can't accept, "we don't know." I ask that you all please pray for Jordan. Pray that he will reveal something to these doctors who are so puzzled as to what is wrong with him. Pray for my patience and understanding. Please God, heal Jordan on earth with us.
Love,
Carrie

Wednesday, September 8, 2004 11:17 AM CDT

Jordan continues to hold his own. He is still on the vent., but the doctors are hoping to wean him to the bi-pap tomorrow. He still has so much fluid on him, but he is trying to get some of it off. He is still tolerating the Campath. Jordan hates being awake though. Everytime he wakes up he is ticked off about being on the vent and having all these lines and tubes. As soon as he wakes up, he breathes against the vent., pulls at all his lines, and even pulled off one of his leads and handed it to the nurse yesterday. It is good to see that he still has a sense of humor. The nurse just looked at him and said, "what are you doing?" I know that if Jordan felt better he would have given her one of his innocent little smiles that doesn't even come close to hiding the mischeif beneath. So, we are praying that the Campath works its magic, and the new donor cells take on Friday. We are also praying for Jordan to get rid of all this extra fluid and also start stooling. It is so funny that our biggest question for the nurse each day is, "Has Jordan been peeing? Has he pooped?" I know, not glamorous, but that's our life.

Thank you to Tom and Rena Hickey for coming to visit and sharing all your precious children with us the other night. The pictures and windchime are hanging in Jordan's room. It was wonderful to finally meet you in person. Thank you to Aunt Shawn and Steve for visiting with us too. Shawn, I love you so much and thank you for coming to see us when I know that the PICU was an extremely difficult place for you to be. Thank you to Courtney Hurd and Beth Jones for the money for the hotel room. It means so much for you to help us out and allow us to stay close to Jordan when he is so critical. Thank you to all the nurses and staff in the PICU. You all are taking awesome care of Jordan and you are so compassionate! It makes things easier when the nursing staff is so tolerant of difficult parents!

Keep Praying for Jordan's complete recovery and strength. Pray that Patrick and I are able to stay strong for Jordan.
Love,
Carrie

Monday, September 6, 2004 1:45 PM CDT

Well, for now Jordan is holding his own. He has not had a reaction to the Septra! He is doing great with the Campath, and he is finally starting to pee and get rid of some of his fluid. The doctors are hoping to wean his vent settings today and tomorrow and extubate tomorrow or Wednesday. We are praising God at Jordan's progress. We know that anything can happen, and that Jordan is still in a very serious condition, but we are hopeful that things are on the right track. He will get three more days of Campath and have his second transplant on Friday. I ask all of you to pray for Jordan's continued healing and that these donor cells invade his body and take over! We want really strong healthy donor cells. I have already told Dr. Martin that he should not touch the donor cell bag. He is the one who gave Jordan the first transplant. Of course I was only "half-joking." We don't want to take any chances. Although I am not superstitious, we asked to do the transplant on any day other than Friday the 13th. Dr. K. agreed. She also said that she would pick out a very good donor this time (as if she didn't last time). I know that it is no fault of hers or the donor that he didn't engraft the first time. We know that Jordan was just too strong and stubborn. We are hoping that since he has been so "beat-up" over the last twenty-two months, he will accept the new cells without any chronic GvH. Thank you all for the continued love and support. It really means more than you will ever know. The journal entries help to lift our spirits. It is so comforting to know that so many people are praying for our sweet baby.
Love,
Carrie

Friday, September 3, 2004 10:27 PM CDT

FINALLY SOME ANSWERS!

We had our big meeting with Dr. K. and Dr. Szabolcs yesterday. They informed us that they did find an infection. I know it sounds funny for me to say this, but THANK GOD! The infection is one that (of course) is rare, usually found in hospitals, and is not covered by the many antibiotics that Jordan is already taking. The only catch is that Septra is the drug of choice to treat the infection. What is the problem? The doctors believe Jordan is allergic to Septra based on the whole rash issue that we had several weeks ago. Well, the doctors have decided to chance it. A rash is a small price to pay to heal a life threatning infection. This bacteria grew from his old port site, but not in his blood. This doesn't mean it's not in his blood stream, but the test just can't confirm it. If it is in his blood stream, we would have a total explaination for the fluid in Jordan's body. This particular bacteria releases an enzyme which causes the veins to be "leaky." We are hoping to see improvement over the next several days. We have already seen slight improvement in Jordan's fluid retention today. His eyes are not nearly as swollen as they were. He is off the oscillator and on a regular vent. Small steps!

So the big question is what do we do to prevent Jordan from having all of these massive infections. Dr. K. believes that Jordan's engraftment didn't stabalize itself correctly and that his donor immune system is fighting against his original immune system, and neither of them are able to recover. His body is experiencing major Graff Vs. Host. The best way to treat this is another transplant. Patrick and I were totally against this idea at first, but since Jordan has no immune system right now, the risk for another transplant is very small. The plan is to NOT GIVE CHEMO! That is where most of the risk with transplant is. We (as long as Jordan behaves) will start an immune suppression drug called Campath on Sunday. He will get this for 4-5 days, and we will infuse new donor cells (from a completely new donor) on Thursday or Friday! We are going to keep Jordan on the vent. while he gets the Campath because some kids have a reaction to it. If Jordan were to have a reaction to it (and he was only on Bi-Pap) they may not be able to get him help quickly enough. If we keep him intubated, he has less risk of having a reaction that they can't manage. We told Dr. K. to pick out a really good donor this time. She agreed that she would do just that. So far the Septra is not causing a reaction and we pray it fights the infection. We also pray that the campath does its job and the new transplant engrafts 100 percent! This is Jordan's only hope. If we don't do this, we will lose Jordan. He has already shown us that he is not ready to give up, and neither are we! Pray that these new cells can heal his body, and he can be on the road to complete healing!
Love,
Carrie

Thursday, September 2, 2004 1:13 PM CDT

Jordan is still on the oscillator. He is supposed to get moved to a regular vent. at some point today, but the repritory therapists are really busy today. The big issues for Jordan right now is his billirubin and major fluid. His billirubin continues to climb and is now at 17. The doctors, once again, don't know why. Jordan was 900 ccs positive for fluid last nigh alone. That makes him about 2000 ccs positive overall. This is way too much for someone his size. Jordan's eyes are so swollen that they look as if they will burst at any time. He is puffy everywhere. We are jokingly calling him the "Michelin Man" from the tire commercials. We have to laugh about something or we will just sit and cry. Jordan is very hard to look at because he doesn't look like himself. He is miserable. His blood pressure continues to go up and he is now on a Nicardipine drip to help with this. Yesterday Jordan's heartrate was much lower and he seemed to be resting, but today his heartrate is back up to the 140s and he is uncomfortable. My heart just breaks for him and the doctors still don't know what is happening. I just want to scream at them. Why? "You guys are the most intelligent doctors in the world and you can't figure this out!" It is so frustrating. Please God give the doctors some help with this. They are not getting your clues! Help them! Please give us strength to endure and please heal Jordan on earth with us.
Love,
Carrie

Wednesday, September 1, 2004 4:19 AM CDT

Oh how I wish I could give all of you some good news. Jordan is doing much worse right now. At around midnight, Jordan's lungs collapsed and he is just tuckering out. The doctors have put him on an oscillating ventilator. This is the most help Jordan can receive by mechanical device. We are down on our knees and asking the lord to hear our prayers for our precious son. PLEASE LORD HEAL HIM HERE WITH US! Jordan's fluids seem to be hanging around and there isn't a whole lot the doctors can do to get it off him. The doctors don't believe that the fluid is in Jordan's lungs causing him the problems righ now. They believe it is a possible infection or just an effort problem right now. How much more does this child have to give? He has no energy left. He has been working so hard to overcome whatever this is that he is just exhausted. His little body just can't handle all of this. Still, the doctors know nothing. Jordan has responded to the Oscillator, but without knowing the cause of the problem, Jordan is in grave danger of even more severe problems. We are beside ourselves with fear, anger, frustration, and sadness. Jordan is lying in a bed with a tube in his throat vibrating his body so that his lungs can stay open and allow him to breath. I know God challenges us. But he is not supposed to give us more than we can handle, and he is seriously overestimating my ability to cope. I ask that you all stop right now and get on your knees and pray for Jordan. Pray for the doctors. Pray for our strength and patience.

Love,
Carrie

Jordan- You have always been such a fighter and you amaze everyone. Please fight and show these doctors what you are made of. Help us know what is wrong so we can help heal you. Stay stong baby! Mommy and Daddy are right here with you. We love you so much. Please stay here with us!

Monday, August 30, 2004 9:24 PM CDT

I don't even know what to say anymore . . . Jordan is holding his own. He was able to avoid the ventilator and dialysis today. He has begun to get rid of a small amount of fluid, but he is still over 800 CCs positive (lots!). He is on much higher settings on the Bi-Pap than last time, but his oxygen is only at 50 percent. This is good but still quite a bit of a strain on his body. His heart rate is so high. He is staying around 170. Even when he is sleeping his heart rate is in the 150s. This is about 50-70 higher than it should be. We are so worried. The doctors keep telling us that they don't know what's causing it and that is just so frustrating and unfair. Jordan is just crying out from discomfort and it is heartbreaking. I just sit at his bedside and cry with him. He did have a few moments of comfort today and even played with his toys a little, but overall he is just miserable. The doctors are running tests. He had a doppler ultrasound of his abdoment, a head CT, an echocardiogram, massive amounts of steroids (44 MG a day!), insulin (his glucose level was at diabetic levels), and still no great relief. Please pray that the doctors are able to find out what is causing Jordan's pain and swelling. The doctors have found a small blood clot that has been there for a while, but has increased in size and could possibly be causing some problems. Dr. K. is not convinced that this is the real problem. I think they are really leaning towards graff vs. host. They believe his tissues engrafted but his blood did not and his body is just fighting itself. Honestly, I think the doctors are baffled and grasping at straws. Please pray for the doctors knowledge and ability to look beyond the tests and find what is causing the problems. Thank you all for the many guestbook entries and phone calls. Although I may not be calling you back, I honestly appreciate every single gesture.
Love,
Carrie

Monday, August 30, 2004 7:33 AM CDT

Jordan is getting worse. His fluids are still not leaving his little body. He is probably headed for the vent and they are talking about dialysis. PLEASE PLEASE PRAY!!!!!
Jordan is a fighter but how much more can he take. Dear God please give us the strengh to deal with this. I am leaving for N.C. on a flight at 12:30 to day. I just couldn't drive that distance again so soon. Thank you JoAnn for offering to go with me. We love you guys so much.
Please keep praying that Jordan can amaze the doctors again. Pray for the doctors knowlege to help him. Thank you for all your jounal entries and prayers they help us cope.

Love and Prayers,

Grandma Sheila

Sunday, August 29, 2004 7:30 PM CDT

This is not the news everyone wants to hear. Jordan is not doing well. His ph and co2 levels are out of balance and he is latargic. He is on the Bi-Pap and as of a half hour ago back in PICU. His doctors are trying to find out what is causing the fluids in his tissues. PLEASE PRAY!!!
Jordan is on our prayer line at my church. Please get him on your prayer line at your church. Please pray for the doctors knowlege to heal Jordan. Pray for his mom and dad to have strengh. Carrie and Patrick will update as soon as we have any news.

Love
Grandma Sheila

Sunday, August 29, 2004 6:47 AM CDT

the last few days have been a little rough. Jordan is retaining fluid in his tissue. Nobody is really sure why, and when fluid is in your tissues diuretics don't really do a lot of good. He is back on the bi-pap to because his oxygen requirements are way up. Hopefully the next few days will show some improvement. His situation isn't serious but if the fluid leaks into his lungs it could be. Dr. K visited us for quite a while yesterday. She is working on a game plan to fix his engraftment problem. Of course we have to get him out of the woods first. I'm sure Carrie will let everyone know when things are a little more clear. I wanted to share a guestbook entry from Jordan's Aunt Shawn I will slip it in behind my update. Shawn I hope you don't mind because that really meant a lot to us and you took the words right out of my mouth.
Patrick



To all of Jordan's fans: I hope that everyone that reads this journal and signs the guestbook, also reads the guestbook.. WHY? Because I want to thank all of you for your undying love and support for Patrick and Carrie as they fight the battle to keep Jordan alive and to remain sane throughout this ordeal (well, I guess the jury is still out on that one!!LOL). But really, when I log onto Jordan's site on a daily basis and notice the number of hits to the site or read guestbook entries, I just feel good inside. I know Carrie and Patrick personally and I know they appreciate everything.. from a kind "I'm thinking of you" to a dinner or a pack of diapers.. and especially the prayers. Just a couple weeks ago they were told their son probably wouldn't make it... How many of us read those words with tears rolling down our faces? How many of us got on our knees and prayed for Jordan to gain his strength to make it over this hurdle? I for one could tell you that prayers don't get answered the way we want them to be, but I do it anyway. God does answer our prayers and I truly believe that Jordan is living proof of that. Yes, he still has many hurdles ahead of him but he always comes up victorious in one way or another. I thank you all for lifting this family up in prayer and your unconditional support of these wonderful people we've all grown to love.

Carrie and Patrick - I love you guys and miss you like crazy. I'm coming soon to see you guys and give my baby Jordan a big ol' fat aunty kiss. I pray God continues His healing in Jordan. I believe you have a very special child on your hands.. and I'm blessed to know him!! LOVE YOU LOTS and MISS YOU LIKE CRAZY....
"Aunt" Shawn, Taylor, & ^^REESE^^ Coble
Winston Salem, NC - Friday, August 27, 2004 11:32 AM CDT

Wednesday, August 25, 2004 7:40 AM CDT

Jordan is continuing to hold his own. His billirubin and liver enzymes are coinuing to go down, but his alkaline phosphorus is still high. I'm not really sure what is causing this increase. We are so proud of how strong Jordan is despite everything. He is refusing to wear the Bi-Pap mask, so he is now on nasal canula and sometimes supplemental blow-by. The doctors are going to do a swallow study this morning to see if he is aspirating fluid when taking his bottles. I guess this is what they are concluding about the pnemonia in his lungs. They have done almost every other test imaginable to determine if it is an infection, and everything is coming back negative. We pray that today will provide many answers for the doctors and us.

We still haven't seen Dr. K. yet, but she has been overloaded since she was gone for two weeks. I know that as soon as she gets a few minutes free time, she will come to see Jordan. Until we find out about Jordan's possible aspiration, we are only feeding him solids. This was interesting at first because Jordan would not eat off a spoon. How quickly things change when you are being starved! He began eating baby food bananas yesterday right off the spoon, and he couldn't get enough. I think he is starting to make the connection. Thank God for small steps in the right direction. We are planning to continue the spoon feeds when we come home. We had tried everything but starvation to get the child to eat off a spoon. Since he was still getting TPN (cheeseburger in a bag) the doctors were not concerned if he didn't eat. He is eating off the spoon as if it's the only way he's ever eaten.

My Mom left yesterday afternoon to go back to my father and her job. The people at her work have been so awesome in allowing her to be here with us while Jordan is so sick. I thank them so much. I was sorry to see my mother go, but I know that she needed to get back home. Mom, I will miss you so much but see you in October! Thank you for being here for me! I love you.

Thank you to Carol Burgess for the balloons and Elmo doll for Jordan. It was a nice surprise and Elmo is sleeping in the "big-boy bed" too! Thank you to Omicron Delta for the donation for Jordan. We appreciate your kindness and generosity.

I will update again when we have more information about Jordan's swallow study.

Love,
Carrie

Many people keep calling and asking what they can do to help, so we are humbly accepting the help that you all are offering. Here is a list of Needs for Jordan.
*Prayers for healing and engraftment of donor cells
*Diapers size 4
*Baby wipes
*Liquid laundry detergent and/or dreft stain remover
*Pediasure (vanilla w/or without fiber)
*Gift cards for wal-mart, Kroger, food lion, etc.
*Monetary donations can still be made to the Jordan's benefit fund at Hickory Point Bank or sent to us at the address below.
*Jordan loves books, anything that makes noise, and anything to do with Elmo.
We thank you all in advance for your kindness and generosity. You have all been a tremedous blessing and we are forever grateful for your love, prayers, and support.
Love,
Carrie, Patrick, & Jordan

Monday, August 23, 2004 11:06 AM CDT

Just a quick update while I am home getting more clothes.

Jordan was moved back to a step down room Saturday Night. His Carbon Dioxide level was high and it had the doctors a little worried, but also he needs a nurse who doesn't have five other patients. His Carbon Dioxide level is better and he seems to be feeling a little better. The poor kid has been itching himself crazy. We think it may be due to the cetaphil soap we were using on him. I know cetaphil is supposed to be good for sensitive skin, but when has Jordan followed any rules? We switched to some kindest care stuff from the hospital and he seems to be more comfortable today. His rash is even looking better. Dr. K. is going to be back today and hopefully she will be in to talk with us. Dr. Szabolcs was in to see us today and he said that Jordan's chest x-ray looks the same, but yesterday it showed a new spot of pnemonia in his upper right lung. They believe this might be due to aspiration. They are going to schedule a swallow study for later this week. His bilirubin continues to go down which is good and his platelets are finally coming back up after an extra dose of IVIG. Jordan is less puffy since we have been giving him the lasix and seems to be happier today than he was on Saturday. The doctors were thinking he was going to wind up back in PICU, but he once again proved them wrong. Overall, he is stabalizing again, but the doctors are keeping him in the step down room for now. Please continue to pray for Jordan's full recovery.
Thank you to Elizabeth Ruben for the yummy chicken and diapers and wipes. It was so nice to see you yesterday.
Love,
Carrie

Many people keep calling and asking what they can do to help, so we are humbly accepting the help that you all are offering. Here is a list of Needs for Jordan.
*Prayers for healing and engraftment of donor cells
*Diapers size 4
*Baby wipes
*Liquid laundry detergent and/or dreft stain remover
*Pediasure (vanilla w/or without fiber)
*Gift cards for wal-mart, Kroger, food lion, etc.
*Monetary donations can still be made to the Jordan's benefit fund at Hickory Point Bank or sent to us at the address below.
*Jordan loves books, anything that makes noise, and anything to do with Elmo.
We thank you all in advance for your kindness and generosity. You have all been a tremedous blessing and we are forever grateful for your love, prayers, and support.
Love,
Carrie, Patrick, & Jordan

Saturday, August 21, 2004 10:13 AM CDT

Jordan continues to be stable, but we are still having some issues. Now that we have Jordan's billirubin at an acceptable (not great) level, he has decided to lose platelets. The doctors are not sure why he is all of a sudden losing them, but are thinking that he could possibly be attacking his platelets much like he did his red blood cells before. The doctors are going to give him IVIG and try a new immune suppression drug. Dr. K. and Dr. Szabolcs are trying to decide which one as we speak. Hopefully the new drug will allow us to cut back on the steroids again. Jordan was put on a pretty hefty amount when he was having so many problems last week. This is hopefully very temporary as the doctors are in agreement about how horrible they are for Jordan. He has swelled up so much over the last several days. His cheeks, hands, and belly are once again giant sized. It breaks my heart because his face is so puffy that his eyes are swollen. He was finally starting to look like a little boy and then he gets bombarded with steroid weight again. It is once again difficult for him to move and be comfortable. Hopefully the doctors can lower the steroids quickly and make him more comfortable. Jordan is still on the Bi-Pap but is getting to take large breaks during the day. When he goes on it at night, he fights against it so much that they have to give him ativan to calm him enough to sleep. He just doesn't want to wear that mask. The doctors have cut back on his TPN and are going to allow him to eat on his own. This makes Jordan much happier. He just loves his bottle. When I show it to him, he reaches for it and shoves it in his mouth. He then lays a death grip on it for fear that someone will take it from him. It is so sad. The poor kid has been food deprived. When the bottle is empty he throws it to the side and signs "more." Jordan has started signing a few things like "eat" and "more" independently to tell us what he wants. I think he is sick of us getting his signals wrong. He will also sign "yes," but he rarely means it. I think he just likes to do the sign. We have increased Jordan's albuterol treatments because he continues to sound wheezy, but the doctors attribute this to the extra fluid. We are going to give him lasix and try to aleviate some of that extra fluid in his body. Despite everything, Jordan is in a pretty decent mood. He has discovered the book Where the Wild Things Are. He wants me to read it over and over again so that he can turn the pages. I think he really likes the pictures. If I take it away, he cries and signs "more." The child is too smart for his own good. The doctors think he will be in the hospital for a little while longer. We haven't really been told a release date, but I am in no hurry. I want to make sure that Jordan is healthy and ready to go home. Dr. K. will be back on Monday and many decisions will be made then. We will let you know when we find out anything new. Thank you to everyone for checking in on us and continuing to pray. Thank you to Ellen for updating people when I am unable to make it to the computer.
Love,
Carrie

Many people keep calling and asking what they can do to help, so we are humbly accepting the help that you all are offering. Here is a list of Needs for Jordan.
*Prayers for healing and engraftment of donor cells
*Diapers size 4
*Baby wipes
*Liquid laundry detergent and/or dreft stain remover
*Pediasure (vanilla w/or without fiber)
*Gift cards for wal-mart, Kroger, food lion, etc.
*Monetary donations can still be made to the Jordan's benefit fund at Hickory Point Bank or sent to us at the address below.
*Jordan loves books, anything that makes noise, and anything to do with Elmo.
We thank you all in advance for your kindness and generosity. You have all been a tremedous blessing and we are forever grateful for your love, prayers, and support.
Love,
Carrie, Patrick, & Jordan

Wednesday, August 18, 2004 10:25 AM CDT

VERY BRIEF UPDATE ON JORDAN

I spoke to Carrie today. They have moved Jordan from step down to a room on 5300 yesterday evening. Jordan is feeling MUCH better. I heard him laugh while talking to Carrie. Papa was making him laugh and giggle. Carrie said that she hasn't heard Jordan laugh in such a long time, it was a wonderful moment and music to my ears! Carrie said that Jordan was tearing up paper while being held by Patrick and laughing about it. (Jordan, You giggle all you want!) Jordan is still on the Bi-Pap. They are giving him brakes from the Bi-Pap for about an hour or two. During those breaks he is on 1 liter of O2 and stating well. While he's off the Bi-Pap he's able to drink a few ounces of Pedialite. His billirubin dropped from 14.2 two days ago to 10.7! (GO JORDAN!) Carrie said that his chest x-ray showed improvement. The collapsed areas of his lungs are now opening up.

Please keep up the prayers and support for Jordan, Carrie and Patrick.

Keep Praying,
Ellen, Andrew’s Mom

“”He has showed you, O man, what is good. And what does the Lord require of you? to act justly and to love mercy and to walk humbly with your God.” Micah 6:8

Monday, August 16, 2004 11:04 AM CDT

WE ARE OUT OF PICU! PRAISE GOD!
***PICTURES OF JORDAN ON BI-PAP***They might be a little scary.

Jordan had his surgery Saturday morning and was successfully extubated Saturday night. He was resting comfortably on the Bi-Pap so the doctors decided to move him to a step down room on 5300. The nurses there have fewer patients and are cross-trained with the PICU staff. He is doing well in his new room, but we are still having some issues. Jordan is by no means out of harms way, but he is heading in the right direction. We are still concerned about his billirubin. It went down yesterday, but today it jumped up to 14.2. This is really high! The doctors are still unsure why it is going up while his liver functions continue to go down. His alkaline phosphorus is high, which can mean something is wrong with his gall bladder. Your gall bladder can also affect your billirubin, so we are hoping the doctors can sort it out quickly. A high billirubin can be very dangerous. There has been no more real discussion of the stem cell boost, but we imagine the boost will be done when Jordan is a little more stable, but before he leaves the hospital. We will let you know when we know more.

Thank you to all for the continued support and prayers. Stephanie & Don, we got your message and we love you too. I will try calling soon. Shawn, it was so nice talking to you today, and I hope you will be able to relax a little more now. Tom & Rena, thank you for calling to check on our baby. I can't wait for he and Sam to meet. Thank you for all the cards, letters, and guestbook entries. All of this support is what keeps us going. We love you all and will update when we have more information.
Love,
Carrie

Saturday, August 14, 2004 6:26 PM CDT

VERY BRIEF UPDATE ON JORDAN

I received a phone call from Carrie about 5:30 p.m. cst. Jordan's surgery went well. They removed his infusa port and placed a double lumen hickman (one line with a Y giving him two lines). They did some deep suctioning to his lungs and will send off samples to a special lab. He arrived to the PICU on the ventilator. Shortly after he arrived to the PICU they were able to turn the vent down to the lowest setting. Even at the lowest setting Jordan was breathing against the vent! (YEAH JORDAN!!!) They were successful in switching him to the BI-PAP. Carrie said that Jordan was fighting them! (GO JORDAN!!!) He is sedated with pain medications right now. Carrie said that Jordan's billirubin is still up, 12.9 (yesterday it was 12.8) however, his liver enzymes are lower.

On the behalf of Carrie and Patrick, I ask you to please continue your prayers and support. Jordan is still very critical. There are so many unknowns. This is a God size problem. Please place Jordan, Carrie and Patrick in your prayers.

Keep Praying,
Ellen, Andrew's Mom
www.caringbridge.org/page/andrewshope

"May the LORD answer you in the day of trouble! May the name of the God of Jacob set you securely on high! May He send you help from the sanctuary, and support you from Zion!... May He grant you your heart's desire..." Psalm 20:1-2, 4a

Father, I thank you for you Love and Mercy. I thank you for your son, Jesus Christ. I thank you for Jordan, Carrie and Patrick. What dear friends they are. Right now, Father, I ask that you place your healing hands all over Baby Jordan. Show us your mighty power of healing. You are the God who hung the stars in the sky. You make the waves in the ocean. You created Baby Jordan, Lord. I ask you to continue the work that you started in Jordan. Allow this mom and dad to see your mighty work once again. Give Carrie and Patrick daily strength. See them through this trial. Give them strength while they wait on hope. Provide for their ever need. You know each need they have. Show them just how real you are. Most importantly, please Lord, allow Jordan to grow up and profess your name! In you son's name, AMEN!

Friday, August 13, 2004 8:42 PM CDT

I know you are all wanting an update and I wish I could give you a great report, but things are still serious. Jordan scared us today. He was on the C-PAPP and his oxygen saturations were very low. The nurse and respiratory therapist suctioned him and had no luck raising his SATs. We were close to intubation but decided to try the Bi-PAPP as a last resort before intubation and ventelator. Thank God, the Bi-PAPP is helping. We were able to lower his oxygen needs and make Jordan comfortable. He even played for a little while today.

It always seems that we are taking one step forward and two steps back. Jordan's port completely quit working last night and we were unable to restore it to working condition despite many attempts (needle sticks). The nurses were unable to place a temporary PIC line because Jordan's veins are just so weak from the steroids. Our only option now is surgery. We were trying to avoid putting Jordan through surgery, but in order for him to get medication and fluids, he has to have a line to access. We have only been successful with one periferal IV line and it will not last very much longer. A PIV can not handle many meds that Jordan needs to improve his situation , therefore we are left with no choice but to go to the Operating room. There is a huge risk with going. They have to intubate Jordan and place him on a ventelator while they perform the central line placement. The doctors give him a 50/50 chance of being able to come off the vent within a short time after surgery. The doctors are hopeful that they will be able to extubate (take him off the vent) within 3 days or a week, but that all depends on Jordan. We have been informed that extubation may not be possible. This is our greatest fear, and we have asked family to be as close as possible. My mother and father, Patrick's mother, father, sister, brother, and neice are all here to support us. I know my sisters would be here if they were able. Jordan is very sick and we need prayers. The doctors have given him a very large dose of IV steroids in the hopes that the inflamation in his lungs will decrease and allow him to breathe better. We have also started him on an anti-graft Vs. Host medication. The doctors are almost certain that this is what is invading Jordan's organs (both lungs and liver). They will be more sure in a few days, but there are just no other reasons for his condition. Hopefully the drugs will work and he can recover, but it is a waiting game.

We also have one other issue. Jordan is losing his engraftment. He is at 6% donor cells and the doctors are certain that he is losing them. Although we are upset, we are much more concerned about his present issues. Once Jordan is over these hurdles (and they are monsterous), we will try a stem cell boost. The doctors are doubtful that this will really change his donor cell status, but since it is fairly non-invasive, everyone agrees it is worth a chance.

The surgery will be at some point tomorrow. We thought it would be first thing in the morning, but haven't heard for sure yet. We ask that you all say a special prayer for Jordan's strength and the doctors skill and wisdom. We pray that all the angels watch over Jordan and the operating team during his surgery and bring him back from the OR safely and off the vent.

We will update tomorrow when Jordan is back from surgery and we have more information. Thank you all for your continued support and prayers. Thank you to Courtney Hurd and THE CREW! You guys are so wonderful and we appreciate your generosity.

Jordan, mommy and daddy love you so much. Keep fighting and come back to us safely after surgery. We want you to fight, fight, fight and prove all the doctors wrong. Breathe on your own. Tell them you don't want a dang tube in your throat. No matter what, we are there with you always. We love you baby boy; be strong.
Love,
Carrie

Thursday, August 12, 2004 2:34 PM CDT

We still have many unanswered questions! His condition changes hourly, but for the most part he is holding his own. He is still on the C-PAPP, and although he is requiring more oxygen at different times during the day we are trying to do everything to keep him off the ventelator. We still don't know exactly what is causing all of Jordan's problems. The doctors are leaning toward a viral infection or GvH, but it is really a guess at this point. None of the tests we are doing is showing anything. Jordan's liver enzymes have come down slightly, but his bilirubin is at 11, which is quite high. The doctors are hoping this is due to a vitamin K deficiancy (caused by the anibiotics). We have stopped all his oral antibiotics and placed him on IV antibiotics that cover a wide spectrum of illnesses. We have done numberous chest x-rays and they seem to get better and then worse. The latest is that his lungs are more wet than yesterday, and he is not moving air as well. We are also checking in to a possible leaky valve in his heart causing the fluid in his lungs. The doctors are just checking in to every possibility right now. The bottom line is that Jordan is very, very sick. The doctors told us that if Jordan has a bacterial infection we should know something in the next few days and be able to treat it. If it is viral, there is not much we can do. We have to wait and pray and ask God to heal Jordan here on earth with us. This is a very difficult time for us. Jordan seemed so healthy just a few days ago. To see him this sick now is devestating. Although we are now in Raleigh, we are staying in a hotel accross the street from the hospital so that we can take shifts staying with Jordan. The doctors don't want us far 45 minutes away because he is still too critical. It is just so hard because we don't know what we are dealing with or how to treat it. He has not had a fever which leads the doctors to believe it's not an infection, but it is just so hard to say anything for sure. Because of all the blood we are drawing Jordan is going to get a blood transfusion today, but we don't anticipate him needing another one (hopefully)! We are running more tests and praying so hard. We ask that you all do the same. Pray for the knowledge of the doctors treating Jordan and for Jordan to keep on fighting. OH and is he! The nurse tried to put a tube in his nose today and he let out a scream and pulled it out. KEEP FIGHTING JORDAN! Mommy and Daddy love you so much. Thank you all so much for the encouraging guestbook entries, phone calls, and well-wishes. Jan & Jacomin: We got your message and will try to return the call at a decent hour. Thank you to all the families from the MPS Forum. You are all so awesome and we are so touched by the outpouring of love and support for our precious baby. I know this is long, so I am going to go now and check on Jordan. I will update again when we have more answers.
Love,
Carrie

Wednesday, August 11, 2004 7:31 PM CDT

Well I'm sure everyone is on pins and needles waiting for this. I would love to go through everything thats gone on in the last 2 days but I don't have the time or energy. Jordan is having some lung problems. They have him on a C-PAP machine which forces air through his nose. He is having troubles with his liver. There is a lot of speculation why but we don't know for sure. He did not have to have surgery because they got his port working well enough. We have gone through a lot of ups and downs today. We have been told that Jordan probably won't make it. But the latest news is that if that they can get his liver to work a little better, and find out what is causing his pneumonia there ia a good chance he will pull through. There is a good possibility that Jordan will end up on a ventilator. There is a lot of concern about being able to get him off of it. We are staying very hopeful and so thankful for all the support. This may very well being a long journey. I want to thank those of you who have offered to help, and everyone who is thinking and praying for us. I have to go back up to Duke, but I am sure Carrie or I will update asap.

P.S. please keep praying.

Patrick

Tuesday, August 10, 2004 8:46 PM CDT

This update is being done to let everyone know that Jordan is very ill. He is in picu at Duke with an infection that they don't know if it is virl or bacterial. WE NEED PRAYERS LIKE YOU HAVE NEVER PRAYED BEFORE!!! They are going to do surgery in the morning to place lines to be able to draw blood. In order to do this they have to intabate. They don't know if Jordan will survive. PLEASE PLEASE PRAY!!!

I'm on my way to N.C. Patrick and Carrie will update when they can.

Love Sheila

Saturday, August 7, 2004 10:22 AM CDT

I want to thank Carol Burgess for the books and gift certificate for Jordan. That was so thoughtful, and Jordan loves the books!

The last few days have been spent in worry. We have worried about all of Jordan's test results and about his future. Some of the results are in and although it is not all bad news, there is not much good either.

Here goes . . . Jordan does have pnemonia in both upper lobes. He is requiring much more oxygen at night, but during the day he is doing pretty well. We are going to try yet another antibiotic (that makes three) Augmentin. Jordan will be on this for 14 days to try to clear the pnemonia. We are concerned about this, but the doctors are hopeful that the antibiotic will do the trick. I am very concerned because Jordan developed this while he was already on two very strong antibiotics. Now we wait and pray that his lungs clear.

The CT scan of Jordan's abdomen showed his liver is enlarged. The doctors believe it is from the antibiotics, but his liver is pushing on his gall bladder and stomach. This makes wearing his back brace very uncomfortable. Jordan's heart looked normal and the liver was ok too except for being enlarged. His gall bladder was also normal. The doctors were unable to get a good look at his back, so in a few weeks we will do another MRI scan to see how his back is healing. Jordan's C-Diff and thrush cultures came back negative.

The biopsy of his rash is negative so far. It can't be a true negative until a week has passed. This is both good and bad news. It is good news that it is not a virus and was most likely a reaction to the Septra. We have stopped the Septra and are going back to IV Pentamadine once a month. Jordan's rash is really improving and he seems to be less itchy. The bad news is that it is probably not Graff Vs. Host either. We were hoping that it would be GvH so that we would have some proof that Jordan's graft is stable. At this point, we really are unsure. We did another donor cell test on Thursday and we should get the results next week. We are praying so hard for good news. We don't even want to think about alternatives if Jordan loses his graft.

Jordan's liver enzymes went down slightly on Thursday, but not enough to make a difference especially since his billirubin went up slightly. The doctors will check these again on Tuesday, but not through Jordan's port. That is the latest bump in the road. We have had nothing but trouble with Jordan's port since it was placed in February at St. John's in Springfield, IL. It is tilted and infiltrates very easily. Every time that happens, there is an increased risk for infection. Well, the last two times Jordan has had anything done to his port, we have had trouble getting it to stop bleeding. We had a huge problem with that Thursday. We went to clinic in the morning and had labs drawn and the port was working fine. Nurse Jan put a dressing over it, and we went down for CT. When the radiology nurse got ready to push the contrast for the CT, we noticed blood underneath the dressing. This has never happened before. She said that sometimes ports leak around the needle sight, and as long as we could get a blood return it would be fine. When she went to push the contrast, Jordan started screaming. Obviously something was wrong and I asked the nurse to stop. She said that she was having trouble pushing the dye (although she didn't quit trying). To make a long story short, the needle wasn't all the way in the port and she pushed some of the dye into his skin surrounding the port. When we took the needle out after the scan, it would not stop bleeding. It didn't stop bleeding for two hours, despite pressure bandages. Yesterday and today Jordan's whole right side of his chest is bruised all the way from his shoulder to under his arm. It looks like someone beat the crap out of him. I am so angry! If the port were placed correctly in the first place, none of this would have happened. UGH! Needless to say, no one else is going to stick a needle in that port ever again. We will draw labs by an IV stick on Tuesday and talk about port replacement surgery. Our only concern is that we don't want Jordan being intubated for surgery until the pnemonia is completely gone. We just don't need any more risk factors in the equation.

Now we wait and pray for the pnemonia to clear, the liver enzymes to come down, and Jordan's graft to stabalize. These are our prayers. Lord hear us! Please heal our precious baby!

Love,
Carrie

Wednesday, August 4, 2004 9:05 AM CDT

I'm sorry it has been so long since we updated, but we have been going crazy with unpacking and getting settled. The trip to North Carolina went fine. It was pretty uneventful, but Jordan developed a cough a few days before we left which had us concerned, so the trip was a little more stressful.

We went to visit Dr. Kurtzberg yesterday and I wish I could say it was a good meeting. We left Duke with many unanswered questions and many more days of waiting. First of all, Jordan's rash has gotten much worse and is now starting to itch him so badly that he is not sleeping at night. When we got to clinic Nurse Sue was concerned about it. She had Dr. K. come in and look at Jordan right away. Dr. K. said that she wanted a dermatologist to look at it because it looked different than the GvH rash that he had before. We also explained Jordan's new cough and increase in Oxygen requirements. She sent us down for a Chest X-ray while waiting for the dermatologist. Then we had more lab work drawn and met with the dermatologist. They did a biopsy of the rash, which was painful for Jordan. We should know those results in a day or two, but the doctors believe it is some sort of Virus. Normally this kind of rash is caused by Hepatitis A, B, or Mono. GREAT! Take your pick right! Dr. K. also said that it could be an allergic reaction to one of his newer medications. We should know something more in the next day or two. Then she said that the chest x-ray showed slight pnemonia . . . WONDERFUL! She wants to do a CT scan today or tomorrow to be sure. Nurse Sue will call us today with our appointment time. As if that wasn't enough bad news, Dr. K. also wants to get a CT of his heart because there was a shadow around it in the chest x-ray. This could indicate fluid around his heart, or it could just be a bad x-ray. What Else? Oh . . . there's more. We were concerned about Jordan's donor cell test and him possibly losing his engraftment since the last test came back at 13onor cells. Well, Dr. K. has changed her mind. Since the rash is not GvH, his graft is not necessarily stable any more. What does this mean? We really don't know, but it could mean that Jordan is slowly losing his engraftment. If so, I don't even want to go into the details about what ifs. I can't even deal with those thoughts right now. All I know is that I am terrified for Jordan. He has been pretty uncomfortable the last several days and we really don't know how to help him. His liver enzymes and billirubin were both elevated yesterday, which means we will draw labs again tomorrow to see if we need to adjust his meds. The problem is that the Biaxin (treating his back infection) is what is most likely causing the elevated levels and there is not much else that can treat his micro-bacterial infection. We also sent a swab of Jordan's mouth to see if he has thrush. Um . . . oh yeah, and the x-ray showed increased air in his bowels, which may mean he has c-diff again. We will test for that later this week too. I am sorry if I am sounding like a smart a**, but I am too upset to sound positive right now. I couldn't even update the website last night because I just didn't want to deal with any of this. Hopefully after we get the CT scan and biopsy results we will have a better idea of what we are dealing with and how to treat it. We will repeat his donor cell test in a few days so that we see where he stands. We did get back his enzyme test results and it showed that Jordan is producing the enzyme, but a very small amount. Dr. K. didn't really know what that meant. She said the way that they reported the results was a little odd. All I know is the first test they did (pre-transplant) showed zero. This one showed 250. I know that's an improvement, but I don't know how much is needed to help him. I just ask everyone to pray for Jordan's healing. Pray that he is not losing his engraftment and pray for mine and Patrick's strength. Patrick is starting his new job this week and God knows he was already stressed. This is just icing on the cake. I will update later this week as soon as we get more test results.
Love,
Carrie
PS Our new address and phone number are at the bottom of the page!

Saturday, July 24, 2004 6:09 PM CDT

NEW PICTURES OF PRESTON!

I have been able to spend most of the day with my family. Jordan and I traveled down to my sister Angie's house to see her and the new baby. My Mom & Dad and Grandmother were all there too. It was a great day and we had a nice time together. We even got Jordan to eat some of my Mom's spaghetti. He even signed "more" so that he could eat more of it. I was so happy to see him interested in food.

Patrick and I were able to say goodbye to most of my St. Teresa co-workers (friends) yesterday. Lori Danner, Todd Vohland, and Susie Murray organized a party in our honor last night. It meant so much to me to see everyone before we move. Thank you guys so much. I will miss you all more than you know.

We had our last doctor's visit with Dr. Brandt yesterday. We are going to miss them as well, but we are happy to be going to Duke. All of his labs looked really good, even his liver enzymes had improved. We were slightly concerned about his Alkaline Phosphorus being really high, but Dr. K. said that it is more than likely due to him growing. She also said that it could be high if his gall bladder is acting up. We are going to watch him and if he gets sick, quits eating, or becomes really fussy, we are going to take him in to get an ultra sound of his gall bladder. So far, he is not acting as if he is in pain. We hope it stays that way.

I may not update again until we get to North Carolina, but we will update as soon as we get all settled in. We are moving on Tuesday. Wish us luck with the move.
Love,
Carrie

Thursday, July 22, 2004 9:29 PM CDT

Thank you Karen for letting everyone know the good news! Preston Lucas Lyerlas was born at 7:09 this morning. I have a wonderful new nephew. At 8lbs. 6 ounces, and 21 inches long, he is quite a big boy. What a woman my sister is! Angie called me at 12:30 this morning and said that her water broke and she was on her way to the hospital. Since Mom and Dad were in the ozarks for vacation, she asked if I would come to the hospital. I was honored to be there for everything. I video taped the delivery and then took tons of pictures right after he was born. Since I have been awake (except for a one hour nap) since 8:00 yesterday morning, I am about to drop, so I will post pictures tomorrow. I just wanted to let everyone know that I was able to be there for everything. I think little Preston knew that I had to see him before the move. I also think he wanted to give his mommy a wonderful birthday present. That's right, today is Angie's 30th birthday. Happy birthday Angie. Enjoy the best birthday present ever. I love you, Luke, Sheridan, and baby Preston.
Love,
Carrie

Friday, July 16, 2004 3:49 PM CDT

Happy belated 25th birthday to Auntie Cherie on the 13th!

Wow, I didn't realize it had been so long since I last updated. Things have been so crazy here. We are trying to sell the house (which isn't going well). We are unhappy with our realtor at the moment. Hopefully we will get some nibbles after our open house on Sunday. Last Sunday I had to take Patrick to the emergency room because he was having severe pain by his tailbone. It turned out to be an abcess that had to be drained. He was in pretty bad shape, but is doing better now with antibiotics. He should be back to his old self again in time to move all the heavy stuff (Sorry babe, you can't get out of it!).
We had our bi-weekly visit to clinic on Tuesday and Jordan's labs looked very good except for his liver functions, which are on the rise again. I think it has something to do with the pharmacy changing the dosage on Jordan's antibiotic. I will be glad to be a Duke in two weeks to get it all straightened out. We are also a little concerned that Jordan's oxygen requirement is increasing as well. We hope that it is due to a stuffy nose while cutting many teeth. The poor boy is getting a mouth full all at once. Jordan's weight is up again. He is now at 19lbs. 6 ounces. We are so happy to see him continue to gain real weight while he is getting rid of the steroid weight. He is now combat crawling when on his belly and he can get any where he wants to get. Nothing is safe in our house, and I love it. I can't wait until he can crawl and walk and make even bigger messes. I will thank God that he is able to do it. We lowered Jordan's steroids this week to 1mg in the morning and 1/2mg at night. He seems to be tolerating it well, and we haven't seen any new rash. In a few weeks we will lower his morning dose and then shortly after that we will get rid of the evening dose. By the end of the summer, Jordan should be completely done taking nasty steroids. We can't wait for that day.
We are trying to pack everything up and get ready for the move, but we feel as if we are getting no where. Who would have thought that we would have aquired so much junk in the 3 years living in the house. Anyway we are leaving on July 27th. Patrick's friend Robert is going to fly down from Raleigh next week to help with the move. He is such a sweetie! Thank you Robert!
I am putting our new address at the bottom of the page. We haven't gotten our new phone number yet, but if anyone wants it, they can e-mail us and we will send it to you when we get it.
Keep my sister Angie and her family in your prayers. Baby Preston is due at the end of the month, but I don't think he is going to wait that long. She has been having contractions for a week now. If She doesn't have him this week (by the 23rd), I think they are going to induce her on the following monday (the day before we leave)! I sure hope she has him this week! Angie, Jordan said to tell you, "I love you aunt gi, gi!" Take care and keep walking around so you can have that baby!
Love,
Carrie

Friday, July 2, 2004 9:47 PM CDT

***Pictures from the benefit***
I know it has been a week and I am getting in trouble for not updating. I appologize. It has been hectic trying to get everything ready for the move. We are trying to keep our house clean and picked up so that people can look at it, but we are also trying to sort through junk to see what's getting moved and what's going to charity or the junkyard. Can I just say that moving is a pain in the rear!

On the medical front, Jordan is doing pretty well. His labs looked great this week although his liver functions are still elevated. We know this is from the antibiotics, but we have to keep an eye on them. Jordan cut four new teeth over the past few weeks, and he is now cutting his molars. He hasn't been sleeping very well, but hopefully he will cut these teeth and have some relief soon. His rash is still hanging on, but it is very faint. Jordan doesn't act like it bothers him at all. We got Jordan's new back brace today and it fits him so much better than the other one ever did. We didn't realize how much Jordan has grown since March until we compared the size of the old brace to the size of the new one. He has gained almost three pounds since April. He is now at 19 pounds and as long as he keeps eating, he will keep gaining and growing. He continues to take small bites off a spoon, but he doesn't eat more than a 1/4 of a jar at each sitting. I think he just fills up faster on the baby food. The occupational therapist and I discussed the fact that it is a different kind of full than the bottle. He may feel fuller much faster with the baby food.

I want to appologize to all the transplant families out there. Since I have been home, I have not been checking up on you guys like I need to. Please don't think I have forgotten about any of you. We love and miss you all.

Thank you to Carol Burgess for the lovely card. It was so nice of you to think of me and send your support. I would like to ask a special prayer for our Aunt Saundra's daughter, Laura and he new born baby. Laura's baby was born fine and then sent to the PICU with some respiratory problems. Please keep them in your prayers. We hope everyone has a happy and safe 4th of July!

Love,
Carrie

Tuesday, June 22, 2004 10:17 AM CDT

First of all I have to thank some people that I left out of the thank you above. Angie Lyerla- You are my sister, and I sometimes overlook all the wonderful things you do for me. I appologize. Thank you for all the hard work you did to make the benefit successful. I love you always. I also want to thank my parents, Libby Brown, and Janet Johnson for all their hard work and help with the benefit, food, and clean up! You are so awesome and We are lucky to call you family (you too Nanny Jan)!

Jordan is doing well with being at home and on a lower steroid dose. The only issue we are really having right now is sleep! Jordan has decided that he doesn't want to go to sleep at night. He falls asleep in my arms, but as soon as I lay him down in his crib he wakes up and starts screaming. We have started to let him cry it out, but he is so stubborn. I hate to hear him cry. I can only stand to hear him for about five or ten minutes and then I go get him again (what a sucker!) Eventually, he wears himself (and me) out and he goes to sleep, but he is becoming a real night owl. I guess he is going to have to take fewer naps during the day. Hopefully I will be able to stand up to him and let him cry himself to sleep, but it's so hard.

Well, we have gotten official word that Patrick is able to transfer to Raleigh, NC. It was a tough decision, but we will be moving at the end of July. Patrick will start his new job the first part of August. We struggled with leaving our friends and family, but we just think it is the best thing for Jordan. So many things have happened in the last 19 months. We believe that God is trying to tell us we need to be in North Carolina. We need to be close to Duke. I am still concerned that Jordan is losing his engraftment. When he only has 13 percent donor cells, I am terrified. I just feel so much better when we are close to the doctors at Duke. If Jordan is acting funny, we just take him in and they ease our concerns. I know that people don't want us to leave, and we are struggling with leaving, but we know in our hearts that it is the best thing for Jordan and ultimately for us. We just can't afford going back and forth anymore. We sat down and realized that it is ridiculous to be paying to live in two seperate states, when we were mostly in North Carolina anyway. Patrick's parents have decided to move close to us as well. We are fortunate that they are able and willing to move to help us. I know that my parents are so sad to see us go, but they know it's for the best. We will miss having them close to us, but we will be together for holidays. I will miss my sisters and especially my neice Sheridan and baby Preston (on the way). We don't know if this will be a permanant move, but it is going to be for at least a year or two while Jordan is still recovering. We have put our house on the market, so if anyone knows someone who is interested in moving to Decatur, IL. We have a beautiful house we can sell them.
Well, Jordan is starting to get fussy, so I have to go but as soon as my Mom or anyone sends me pictures from the benefit, I will post them.
Love,
Carrie

Thursday, June 17, 2004 12:22 AM CDT

I know everyone wants to know how the benefit went. It was great! We were able to take Jordan at the beginning before too many people showed up, and I think he liked being out. I know everyone was so happy to see him there. He wasn't able to stay long because several people started showing up, and he still can't be around crowds. We had a great time dancing and talking to everyone at the benefit. I think everyone had a great time bidding on items during the silent auction, but the highlight of the night was the live auction. Jack Tossetti did a great job getting people to outbid each other. The Green Bay Packers donated a signed football and Patrick really wanted it, but we knew that it was for the auction. My mother couldn't stand the thought of Jordan and Patrick not having the football, so she outbid everyone and then turned and gave the football to Patrick. I don't think there was a dry eye in the place. It meant so much to Patrick. The football is now proudly displayed in Jordan's Packer bedroom. The benefit was a huge success, and we are truly grateful to all who participated!

As for medical news, Jordan is doing great. We restarted all of his therapies here at home, and he is enjoying them. He is outgrowing his back brace, so we are getting him fitted for a new one in two weeks. We had our visit with Dr. Brandt, and it went ok. I don't think I will ever trust him again. I am always worried he is forgetting to check something or do something. That's why I am in close contact with Dr. K. We did get Jordan's fish test results back and we were disappointed. Jordan's female (donor) cells have gone down to 13 percent. Although he has always been between 20-30 percent, Dr. K. says he is not losing his engraftment. I can't help but worry that he is, but Dr. K. assures me that he will fluctuate over the next couple years and not to worry. I guess I have to put my faith in her and let God sort it out. It is just scary to think we put him through all of this just to be unsuccessful in the end. I do not deal well with failure. I never have. I know I can't control what happens, and that is hard for me to take. I am a tiny bit of a "control freak." I know that anyone who knows me won't believe it (ha, ha), but I am.

Anyway, we are getting everything ready to have a yard sale this weekend. We have accumulated so much stuff since we have lived in our house and it's time to make a "clean sweep." We hope it goes well and we get rid of all the junk.

Well, when I get anymore test results, I will post them. I will also post pictures from the benefit soon. I forgot to take my camera (duh!), so I have to wait for everyone else to e-mail them to me.
Love,
Carrie

Saturday, June 12, 2004 10:20 AM CDT

Sorry it's been a while, things have been very busy around here. We are trying to get re-settled into the house, get all of Jordan's therapies restarted, and just relax from the trip. Medically, things seem to be going well. We lowered Jordan's steroids on Tuesday to 1mg twice a day and he is tolerating the wean -- no new rash! We are excited that he will soon be off the dang steroids and his immune system will have a chance to return. We are hoping that by the end of the summer he will be off the steroids and his immune system will be back to normal by the cold and flu season. Jordan seems to be feeling better everyday. He is laughing and playing so much and his appetite has really increased. He is eating around 30 ounces of pediasure a day. He is also eating small amounts of baby food bananas and yogurt off a spoon. He had mashed potatoes and carrots at grandma Connie's house yesterday. He is starting to slim down but is putting on real weight. This is a good thing. He is also finally starting to grow in length. We are noticing that his clothing is getting tighter. It is partially due to his ever-expanding belly. His belly-button is again an outty. We laugh over how it goes from inny to outty at any given moment depending on how much he eats. His "turtle shell/ back brace" is barely fitting him anymore and we are happy about it. This means that he is finally getting bigger.

We are looking forward to seeing many of you at the benefit in Witt tonight. The doors open at 7:00PM, the silent auction goes until 10:00PM. The live auction begins at 10:00PM and the DJ plays until 1am. We are looking forward to having a good time and seeing everyone. Grandma Connie and Papa Mike have volunteered to keep Jordan over night. This is a huge step for Me and Patrick. The only time we have let someone else keep him over night was when he was in PICU and we had no choice. Connie and Mike know Jordan's routine and meds. as well as I do, so I feel comfortable with him staying with them, but it is still hard to let someone else take all the responsibility for an entire evening. Mom may have a hard time with that tonight, but I know it is good to have a break every once in a while.

DIRECTIONS TO BENEFIT FROM DECATUR:

Take 48 to Taylorville and turn left onto the Nokomis blacktop (second intersection on 48 in T-ville). Take the blacktop into Nokomis and stay on that street through town. Go over the railroad tracks and at the first stop sign take a right (State st.). Follow this out of town about five miles to Witt. When you get to Witt, take the first right in town (Mystique Antiques is on the corner). I believe this is Main st. Go over the railroad tracks and take the first left (Broadway st.). Follow Broadway parallel with the tracks to the corner (there's a pub on the corner) and make a slight right (staying on Broadway). Follow Broadway through town. When the road dead ends, the Lion's Club building is on your left!
We hope to see many of you there!
Love,
Carrie

Friday, June 4, 2004 11:45 AM CDT

WE ARE HOME!

We got home at noon yesterday, but after two days on the road, we just didn't have the energy to update everyone. The trip was very uneventful, just the way we like it. Jordan did great during the trip. He kept granny Connie busy by pulling off his oxygen canula several times during the trip and then laughing at her trying to lean over the seat to fix it.
Our Tuesday visit with Dr. K. went well and she decided to keep Jordan's steroids where they are until next week because his rash looks so much better. I guess she didn't want to rock the boat. We will go ahead and lower Jordan's dose on this Tuesday. We can't wait until he can be off the steroids for good. We are seeing more and more from Jordan each time we lower them. He has started clapping his hands and jiggling his elmo all over when I tell him to dance. His progress is remarkable. I can't wait for all of his therapists here to see the improvements. We will meet with all of his therapists on Monday for evaluations and then set up his therapy from there. We are excited to get everything going again so that he doesn't lose any ground.

We also discussed clinic visits with Dr. K. We are going to see Dr. Brandt in Springfield every two weeks for weight check and labs, and once a month we are going to have a home health nurse come in and do Jordan's infusions. Limiting our time in a hospital is beneficial to Jordan. This will also prevent us being in a car two hours to and from St. Louis every couple of weeks. We will not make any medication changes without talking to Dr. K. directly. This way we know that Dr. K. is "in the loop" so to speak. We want to avoid something going unchecked like last time. We are doing this on a trial basis. If Dr. K. or we feel uncomfortable at any time, we are heading back to North Carolina for good. We still may go anyway. There is word that Patrick may be getting a transfer to the Raleigh/Durham area. We will let you all know when we know more.

We want to thank many of the Nokomis area businesses and schools for doing dress down days for Jordan. Tysha Burge and Brandy Neisler did a great job of organizing the event and it was a great help to our family. We truly appreciate your hard work! Thank you Tysha, Brandy, and all who participated in the event! It means so much!

Don't forget the Benefit dance next weekend, June 12th!!! The benefit will be held at the Witt Lions Club from 8PM-??? The doors open at 7:00PM, with the DJ starting at 8:00PM. There is a $15.00/person charge which includes food and drinks! Come help us raise money and have a great time dancing the night away! We hope to see you all there!
Love,
Carrie

Saturday, May 29, 2004 2:35 PM CDT

Jordan is 19 months old today.!
Wow the news keeps getting better and better. Jordan's MRI studies showed that he has no symptoms of Hunter's syndrome! It also showed that his back is slowly healing. We couldn't be happier! His EEG was negative for seizure activity. His eye exam showed improved pressures (probably due to lowered steroids). All of these things are great! We are just amazed at his progress. He continues to do new things everyday. He is making tons of new sounds, shrugging his shoulders, eating better off a spoon, cutting four teeth (not 2), improving his fine motor skills, and he even clapped his hands for the first time. He looked at his occupational therapist and said "n" this morning. I think he was trying to tell her "no." Now we just have to get him making the "m" sound so I can hear "mama." Dr. Escolar says that as he eats more off the spoon, his speech will develop more quickly. Eating strengthens oral motor skills. I guess that explains why I talk so much. I love to eat! Jordan's rash is improving with the hydrocortizone cream and oral med. As long as it stays under control, we will lower his steroids to 1mg twice a day on Tuesday. In one month we will lower him to 1/2mg twice a day. The end of July we will lower him to 1/2mg once a day, then every other day, and by the end of August, we should be off the steroids. With any luck, by Jordan's second birthday his immune system will be close to 100 percent! I can't wait to take him out in public and show him off.

We will give Jordan his IVIG and Pentamadine on Tuesday, and then we won't need anything for a month. We changed his IVIG to monthly instead of bi-monthly. Dr. K. said she feels two hours to St. Louis is a long way to drive, so we are going to do the IVIG and Pentamadine through home health once a month. We will also see Dr. Brandt (in Springfield) for any problems, but we will be staying in close contact with Dr. K. No changes to medications or anything will be done without us speaking with her directly! I'm not sure how comfortable I am with this because I know they missed his back infection before, but I know that we will be in constant contact with Dr. K. At least I don't have to explain Jordan's complete medical history to a brand new set of doctors and nurses. Like I said before. This is a trial run. If we are unhappy or not comfortable with how things are going at home, we will be moving closer to Duke. As long as things go well on Tuesday, we will be heading back to Illinois early Wednesday morning. We are going to drive and take two days. We were going to fly through angel flights or lifeline pilots, but we have two cars here (ours and Patrick's parents). If Jordan and I would fly, Patrick would have to take time off work to fly down here and drive our car back to Illinois. This would just be an added expense that is not a necessity. We will try to drive. Hopefully Jordan will tolerate the drive and we can make it in two days. I am sure we will have to make many stops during our (normally) 14hour drive. I am sure it will take us much longer. Well, that is about it. I will try to update again on Tuesday after our visit with Dr. K., but we may have to give back our computer before then. If I don't update on Tuesday, I will update on Thursday night or Friday when we return home. Please pray that we have a safe and uneventful trip home. Thank you for all your love and support!
Love,
Carrie

This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove, cetaphil, or netrogena bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at home.
Patrick, Carrie, & Jordan Horton
1766 Hinsdale Ave.
Decatur, IL 62526

Thank you again for all the donations, and support! We couldn't do this without all the support of all of you!
Love,
Patrick, Carrie, and Jordan

Tuesday, May 25, 2004 8:27 PM CDT

This is going to be long, but there is lots of good news to share!

To answer "Dave's" question, my sister is thankfully not a carrier of Hunter's syndrome, so her children will not be affected with this horrible disease. Not to be rude, but any other personal questions about my sister should be directed to her. Thanks.

On to medical news! Jordan is doing his 18 month studies this week and so far things have gone pretty well. Jordan's echocardiogram was yesterday and it showed improvement in the hypertrophy (enlarged heart muscle),and the PFO (hole in his heart) that he has had since birth is gone! Yeah Jordan! They do see "trivial-mild mitral regurgitation" which basically means he has a heart murmur that is virtually non-existant and could be caused by the hypertrophy. Dr. K. is not at all concerned about it and thinks it is something that he may outgrow. If not, it is not dangerous. His blood counts look great and the liver functions are holding steady at a lower level than two weeks ago. We are thankful for all of this good news. Jordan did poorly on his Pulmanary function test (tests lung capacity). He is only breathing at about 70ung capacity, but they believe the test was worse because he was wearing his back brace. When he wears the brace he is unable to take deep breaths. Dr. K. again is not terribly concerned about this.
We saw Dr. Escolar today at UNC. She and her team of therapists perform developmental testing on Jordan. The neurological exam was normal. Jordan also improved on his fine motor skills and physical abilities since December, but what impressed the doctors the most is that he has gained 10 MONTHS IN VERBAL SKILLS SINCE DECEMBER!!! That is awesome! We are so happy to hear that. His hearing test showed that he has a little fluid behind both eardrums, but the inner ear is working fine. We will keep an eye on the fluid and as long as it doesn't become a chronic problem we will do nothing. Many kids Jordan's age get fluid behind their ears. As long as their is not an infection, we aren't too worried about it, but we don't want the fluid to remain on his ears for an extended period because it could affect his speech. Obviously with 10 months improvement in speech during the last 5 months, he isn't having a problem hearing! WAY TO GO JORDAN! YOU IMPRESSED EVERYONE TODAY! WE ARE SO PROUD!
Jordan's rash got a little worse this week when we lowered the steroids, so we are going to try a few different things. Dr. K. is adding oral hydrocortizone to Jordan's list of meds. She said this may help with the rash without further suppressing his immune system. Also this will keep us from upping his steroids again. The hydrocortizone doesn't have all the negative side effects that the prednisolone does, but it may not work. We will see. Also, we are going to try a different hydrocortizone cream to see if that will help with the itchy rash. Because of the GvH flare up, Dr. K. wants us to stay until next Tuesday (June 1st). She is still going to let us go home, but she wants a week to get the rash under control before we make a trip home. Also we will get Jordan's IVIG and Pentamadine in clinic and we will not have to make a trip to St. Louis until two weeks after we get home.

We are doing a trial run with the Doctors in St. Louis. With all of Jordan's problems, Patrick and I are very leery of being at least two hours from the nearest doctor. We don't know what we will do if Jordan spikes a fever. Do we drive to Springfield (where they screwed up before with his infections)? or go all the way to St. Louis for potentially nothing. It is scary and we will see what happens over the next few months. If things don't work out, we are considering moving to the Raleigh-Durham area at least until Jordan is well out of harm's way. It is a difficult decision and one we are not going to make yet, but we have been discussing this for some time. When we went home in October of last year, Patrick and I decided that if Jordan had any more complications that we would move to NC to be close to Duke. We just feel that maybe the events of the last 18 months are signs that we need to be closer to Duke.
We just can't afford to try to live in both places, even for a few months at a time. It is just too draining physically, emotionally, and financially. Like I said, we haven't carved anything in stone yet, but it's an idea we are taking into consideration. We will see how things go when we get back to Decatur and get settled in with our new doctors. We will keep everyone posted.

We want to send a huge thank you to the Litchfield family dentistry office for choosing Jordan as their charity for their annual fundraiser. They will be collecting donations in Jordan's name from June 15th - September 1st to help with Jordan's medical needs. We couldn't be more grateful to this wonderful group of people for being so generous to our family. Thank you tons in advance! Thank you to Holley and Matt Sharp for the card and money. Holley, I hope things get less hectic and more healthy over your way! We love you guys and thank you so much. Pat,Sal, Isaiah, and Mishael: Thank you so much for the awesome pictures. They are too cute. We will be home at the end of next week, so hopefully we will be able to see you during your trip. If not, maybe you could stop by and see Patrick. He is lonely by himself in Decatur.
Patrick, Jordan said he misses his daddy and he loves you.

I almost forgot to tell you all that Jordan panted like a dog today. It was too cute. He was immitating a toy that he has. He also cut two more teeth on the top and is trying to cut two more on the bottom. LEAPS AND BOUNDS!
Love,
Carrie

This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove, cetaphil, or netrogena bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at home.
Patrick, Carrie, & Jordan Horton
1766 Hinsdale Ave.
Decatur, IL 62526

Thank you again for all the donations, and support! We couldn't do this without all the support of all of you!
Love,
Patrick, Carrie, and Jordan

Tuesday, May 18, 2004 6:08 PM CDT

New pictures too!
************************************
QUICK UPDATE ON BENEFIT DANCE!
Doors will open at 7p.m, DJ starts at 8p.m., live auction at 10p.m., silent auction will open at 7pm and close at 10pm, cost is $15/person includes unlimited food and beer, raffle tickets are $1/ticket or 6 for 5$. It is at the Witt Lions Club building. If you need directions, feel free to e-mail me at the address below or Jennifer at jkershaw@frontiernet.net
***********************************
HAPPY 51st BIRTHDAY PAPA DALE! WE LOVE AND MISS YOU! We also want to wish a happy 30th birthday to Uncle Robert Ray!

Just when the clinic visits are starting to go quickly, we spend 8 hours in clinic again. The visit was good though. We were able to visit with Marcella and Sean. Sean was in the room next to Jordan during transplant, and we really got close to his family. Marcella, you and Sean look great and we look forward to making a trip to see you in the near future. You all can check up on Sean's progress at www.caringbridge.org/europe/sean

Dr. K. is really happy with how great Jordan is doing. He is pointing to his head, belly, and tounge on comand. He is also laughing non-stop. She is really glad that he has made so much progress since we have been here. We lowered Jordan's steroids again to 1.5mg twice a day. The lower we get, the slower we wean, but we are happy that we are able to wean them. We can't wait for him to be off the steroids for good. They are really helping him, but they are hurting him too. Yesterday we found out that he has yet another fracture in his right foot. It is just above his big toe. It is very slight and doesn't seem to bother him unless I try to put on his shoes. The doctors are not concerened and say that it should heal quickly because of where it is and how slight the fracture is. We will not be able to put him in the stander until he is comfortable in shoes again, but at least it isn't a major break. It isn't stopping him from rolling over or even grabbing at his broken toe.

As far as other medical news, the rash is still here but is not getting any worse despite the lower steroids. We are going to try another cream on his hands and feet to clear it up. Jordan's liver functions are improving, but we are going to keep an eye on them. Dr. K. is looking forward to seeing all of his test results next week. We have his eye appointment tomorrow, and then the rest of his 18 month studies will be the 24th-27th. We will check his immune functions as well as his enzyme level and his fish (donor cells). Dr. K. said that we will do another MRI of his brain and back at that time and as long as it still looks good we can go home the week after his studies. Unless something happens, that is the plan. We are so happy that we should be home for the benefit dance on June 12th! We will be going to visit a doctor in St. Louis every week or two when we go home this time. Dr. K. just doesn't feel comfortable with the doctors in Springfield and truthfully, neither do we. We will work out all the details in the next few weeks before we come home. We are looking forward to going home so that Patrick can work full-time without worrying about us being 900 miles away. We are so thankful that Jordan is doing well and we pray that he continues on this path to full recovery. We will keep everyone updated on tests and results as we get them.

Thank you to Carolyn Fodel for the beanies and lunch money for Mom! Jordan loves his Zebra and Parrot. We also want to thank Melody Riggs for the donation to Jordan's benefit fund. Thank you to Heidi Matthews and the "Fresh Visions" church group for the Wal-mart gift certificate. As always, the donations we get are greatly appreciated. Every gift great or small helps us out so much. We are sincerely grateful for the love and support we get from all of you. Thank you again!
Love,
Carrie


This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at our apartment.
Patrick, Carrie, & Jordan Horton
1902 White Pine Drive
Durham, NC 27705

Thank you again for all the donations, and support! We couldn't do this without all the support of all of you!
Love,
Patrick, Carrie, and Jordan

Wednesday, May 12, 2004 9:01 AM CDT

I hope everyone had a very happy Mother's day! I got a wonderful surprise for mine. Patrick showed up in Durham without even telling me he was coming. With all the bad news we got last week I was upset and worried about Jordan. He came to make everything all better, and he did. This Mother's day was much better than last years, which was spent in the hospital with Jordan's hemolitic anemia. We are so thankful that his body has ridded itself of the antibodies and he has recovered from that illness.

Our weekly clinic visit went pretty well yesterday. We got better news than we had gotten at the end of last week. Dr. K. doesn't believe Jordan has any GvH in the lungs. She also doesn't see any damage to Jordan's lungs on the CT scan. The doctor who told us about the damage only looked at the scan himself and hadn't waited for the radiologist to read it and write the report. Dr. K. showed us the report, which said that Jordan has atalectasis (small places where the lungs are collapsed). This is the same thing we have been told for a year. The CT showed that even where the lungs are partially collapsed, the lung tissue is healthy. Dr. K. believes that this is completely a strength issue, and he is fully capable of complete recovery. The steroids have deteriorated his muscles to the point that he is unable to take deep breaths. We are going to increase the albuterol treatments to 3 times a day in hopes of opening up his lungs and getting them pushing more oxygen into his blood. It may take several weeks before we see any real improvement, but Dr. K. seems to think that this along with Jordan moving more should be enough to get him off the oxygen. We pray this is the case. We are so thankful that there is no damage to his lungs. Dr. K. described his lungs as those of a premiee. They are underdeveloped and need to be strengthened.

We also switched Jordan's antibiotics around one more time. When we changed his medications last Thursday, Jordan had a reaction to one of the meds. and had runny diapers every hour for 2 days. I wish I were exaggerating, but I'm not. None of us got to sleep for two days. I called Sue (our nurse practitioner) on Saturday and said, "we have to do something different." We again switched around his meds. and the runny diapers slowed down. Not surprisingly Jordan's weight was down again on Tuesday after all these problems, so we have to take him in again on Friday for a weight check. Pray that Jordan eats lots of Pediasure and puts on some weight before then.

Because of all the antibiotics, Jordan's liver functions are still on the rise. We are concerned about this, but Dr. K. said they are not yet at a dangerous level. We are trying to do some different things to lower these levels, but so far we are not having much luck. Please pray that these liver enzymes go back to a normal range. We can't take Jordan off the Biaxin at this time or his infection in his vertebrae will return causing further damage to his back. We are going to take an ultrasound of Jordan's liver later this week just to make sure that there is nothing else going on there. Dr. K. doesn't expect it to show anything, but she just wants to cover all her bases (what a difference from the doctors at home). I guess we are just used to Dr. K.'s thoroughness. Although we are still having some minor issues, we are so thankful that they are not more serious, or even as serious as we thought last week. It is amazing how, in the transplant world, things change so quickly.

We have also had the chance to visit with some friends this week. Ellen, Brian, Simon, and Andrew Bowman came to visit for a few hours on Monday night. We really enjoyed seeing them again and Ellen and I enjoyed one of our usual "hen chats" as Patrick calls it. You can check up on Andrew at www.carinbridge.org/page/andrewshope. We were also able to visit with Tracie, Doug, and Cameron Nicoll in clinic yesterday. They are here for Cameron's one year studies. He is looking great and I enjoyed seeing them in clinic. Tracie, I hope we can get together again before you head back to Colorado. Cam's page is www.caringbridge.org/co/nicollbrothers.

Jennifer Kershaw is still working hard to make the benefit dance on June 12th a success. We hear that she has a DJ that is going to play from 8PM until ??? WOW! It is going to be some party. People back home sure know how to have fun. We thank Jennifer, Amy, the Lion's club, and everyone else working hard to help our family. You guys are the best! If you want to help Jennifer, please e-mail me at iteach2u@hotmail.com or her at jkershaw@frontiernet.net. When I know all the details about time, etc. I will post it.

We also want to thank Lola Spears and the Nokomis Garden Shop for donating $5.00 from every hanging basket they sold during the Mother's day holiday. We also thank her many customers who donated extra money even when they didn't get a hanging basket. It means so much to us!
Thank you to Elizabeth Ruben for the Nutren Jr. and the information on ordering more. It was so nice meeting you and we appreciate your kindness.

Love,
Carrie


This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at our apartment.
Patrick, Carrie, & Jordan Horton
1902 White Pine Drive
Durham, NC 27705

Thank you again for all the donations, and support! We couldn't do this without all the support of all of you!
Love,
Patrick, Carrie, and Jordan

Friday, May 7, 2004 5:06 PM CDT

Sorry I didn't update yesterday. It ended up being a very long day. Of course when we got to clinic Jordan's fever was gone. He has done this disapearing fever act to us before. Since his fever was never high enough to indicate an infection, the doctors weren't too concerned. Just in case, we had some labs drawn and blood cultures as well. The blood cultures are negative so far. I told the Doctor my concern over Jordan's runny/stuffy nose lately. The doctors decided to run a nasal viral battery to check for viral infections such as para-flu, but we haven't gotten any results yet. Since the fever was gone and he looked good, we decided just to add a sinus CT to his chest CT for today and go back to the apartment. We thought the day was over . . . boy were we wrong.

We got home and Jordan took a bottle and a nap. When I hooked up his pulse ox machine (measures the level of oxygen in his blood). His oxygen saturations were only 85% (he is usually at 95 or above). No matter what I did to adjust his canula or the pulse ox sensor, he wouldn't go up. I also noticed that he was having a harder time breating, so I turned his oxygen up to 3/4 of a liter (usually he is on 1/2) and I still couldn't get him above 88-89%. I turned him up to 1 liter and he was only sating at 92-93%. I called the doctor and they said to bring him in for a chest x-ray. The chest x-ray showed nothing, but the doctor said he heard some wheezing in his lungs. We did two albuterol treatments and his oxygen saturations went up. He is now back down to his normal oxygen level, but we are now doing nebulizer (albuteral) treatments twice a day. The doctors believe this is due to allergies or possibly asthma. Since I had asthma as a child, it is likely that he could have some of the same problems. Since his rash was looking better, the doctors went ahead and lowered his steroids to 2MG twice a day. Hopefully his rash will not get worse with the wean. We finally came home at 8:00 last night, and we did meds and went to sleep.

This morning we had a Chest and Sinus CT scan at 9:30am. The Sinus CT showed a sinus infection and the Chest CT showed damage to Jordan's lungs. We are upset to hear this news. We have always been told that he just had small places in his lungs that were collapsed, but no real damage. The CT gave the doctors a much better look at his lungs and showed the damage. The damage is not severe, but the doctors believe it could be a few different things. One senario is that he has scaring from old infections. Since Jordan has never had an infection in his lungs (that we know of), it is very unlikely. It could also be Graff Vs. Host disease. If this is true, he will require a small amount of immune suppression for a long time. Much like asthma patients require. The third scenario is that the chemo-therapy that we gave Jordan before transplant has damaged his lungs. If that is the case, there is nothing we can do to help it. It is upsetting that we may have caused this damage to him. I struggle with knowing that we caused him all of these problems by putting him through transplant, and we don't have any guarantee that it will help him. It's a hard thing to swallow. The doctor did however tell us that the damage is not severe enough for them to do anything different than what we are doing right now. He also said that it is likely that as Jordan gets older and stronger he can be oxygen free despite the damage. He told us that many people have damaged lungs but don't require oxygen. Since Jordan is too young to do breathing exercises to strengthen his lungs or purposely breath deeper, it is also an effort issue. He is not trying to breath better. As Jordan gets older, stronger, and more mobile, he should be able to overcome this issue. Until then, it is a waiting game. This is something that will have to be closely monitored to make sure it is not getting worse, but the doctors are not concerned about it. I wish I could say that I wasn't.

The other issue that we have now is Jordan's liver. His liver enzymes have been trending upward over the last 3 weeks. The doctors believe this is due to his antibiotics. We switched his Avelox (moxyfloxicin) back to Amikacin (which has to be given IV). Now his port has to stay accessed for an extended period of time, which increases the chance of another infection. We stopped his diflucan (which can be hard on the liver). This is where it gets tricky. The Biaxin, which is treating his vertebrae infection, usually causes the most damage to the liver. We can not stop this med at this point. If we do, Jordan's infection will return, and can be worse. At this point we have added another antibiotic for his sinus infection, and we are going to leave the biaxin as it is. If his liver enzymes don't start going back down, we will have to come up with a way to give him the medicine he needs without damaging his liver. I'm not sure this can be done. Please pray that his liver enzymes start going back to normal so that Jordan can continue the medication that he needs. We will check his counts on Sunday to see if the med changes have helped our situation.
I feel so bad for Jordan. He has been through so much and every time it feels like he is doing better, something else happens. We keep taking away meds only to add others for another infection. We need to keep him on the steroids because of GvH, but the steroids keep his immune system suppressed. As long as he has a suppressed immune system, he is more suceptable to infection. It is a catch-22. I look forward to the day that Jordan can be a "normal" child with "normal" childhood illnesses that are not life-threatning. Please pray that these issues can be resolved and Jordan can have complete healing.
Love,
Carrie

Tuesday, May 4, 2004 10:09 PM CDT

******THURSDAY MORNING UPDATE*******
Jordan got finished with his therapy this morning and felt warm. We took his temperature and of course he is running a low grade fever. So . . . off to clinic we go. I'm sure the doctors will want to draw blood cultures and do a few other tests. He is supposed to have his CT scan of his chest tomorrow, but it may be put off until we find out what is causing the fever. Pray it is nothing serious. I will update when we know more.

Tuesday's update:
Today's clinic visit went well. It was a long day, but the visit went well. Jordan's immune functions (that were drawn in March) showed a slight improvement over the ones in December. We are now able to go to small shops that don't have recirculated air (no Wal-mart or grocery stores yet). We can go on weekdays at non-busy hours, but Jordan must wear his mask. Although this doesn't sound like much, it is huge to us. Jordan has been unable to go anywhere (other than the hospital) that wasn't outside since he was 3 weeks old. We are really excited about being able to go a few places with Jordan now.

Jordan's weight was up another ounce today and his labs looked great. Dr. K. is very pleased with his eating. He is eating 20-24 ounces a day now (compared to barely 13 when we got here). Ultimately Dr. K. would like to see him eating 28-30 ounces a day, but we are taking small steps toward that goal. We would rather see him reach it slowly and stay there. "Slow and steady wins the race!" We are trying the Elidel and Lydex again for his skin because this dang rash is so persistent. We don't want to up his steroids, so we will try this and see what happens. Hopefully they will work and we can start the steroid wean again.

Jordan's 18 month post-transplant studies are scheduled for the end of this month. I asked Dr. K. if Jordan would be able to go home when they were completed, if he is still improving. Dr. K. said (in typical Dr. K. fashion), "I don't want to promise anything yet, but I will be better able to tell you in two weeks." We got the famous "two weeks" speech. Although she did say, if things are still going this well it is likely we will be able to go home at the end of the month. I guess we just have to wait a few weeks and see. I'll keep you all posted.

We have had an eventful few days visiting with old friends that were here for the walk. It has been nice to see Pat, Sal, Isaiah, Mishael, Jill, Steve, Alex, Emily, Mike, & Marian, Eleasha, Greg, Cody, & Riley. We have missed you all so much, and we are so glad we were able to spend some time with you. Pat, Sal, Isaiah, & Mishael, came to visit us for a while yesterday and we really enjoyed spending time with them. We missed our neighbors! Thank you!

I have a few thank yous to send out too. We want to thank the unknown person who sent us a target giftcard from New Jersey. We don't know who you are, but we appreciate your kindness! Thank you to Connie and Henry Engelhart for the donation. It is greatly appreciated. Thank you to Jill and Pat for all the coupons! I will surely use them! Thank you to Jill for the adorable baseball outfit for Jordan. Alex, thanks for the awesome blockbuster giftcard! You rock! Thank you to Marian Ketelkamp and Clara Engelman for the donations. You ladies are too sweet!

I want to take time to send a special thank you to Jennifer Kershaw and Amy Wilson. They are taking a lot of time out of there busy schedules to put together a benefit dance for us on June 12th. They have worked hard and gotten some cool things to be auctioned and/or raffled off. They sent out many e-mails, and have made phone calls asking people to help our family. You have no idea how much what you're doing means to us, and we sincerely thank you for everything. You are amazing examples of how God works through people. Anyone who wants to help them can reach Jennifer by e-mail at jkershaw@frontiernet.net
Thank you all again!
Go hug your kids!
Love,
Carrie
PS: Patrick, Jordan and I miss you like crazy. Jordan asks for his "Dada" every minute. We love you. See you soon.

Saturday, May 1, 2004 4:20 PM CDT

What an emotional day. Today was the Rainbow of Heroes walk for the Bone Marrow Unit. Duke does a walk each year to raise money for the family support program for the bone marrow unit. They raised over $64,000 this year. This will help the kids on the unit be able to have nice things and do some fun activities while they are in-patient. We went today and Jordan did great. He was happy the entire time, despite having to wear his back brace and mask (while we were inside during the rain). We enjoyed seeing many of our transplant friends and the parents of many sweet angels who were watching over us today. We released balloons in honor of all the heroes fighting illness and those that have lost their fights. We saw children that were completely healed and healthy post transplant, kids just starting the process, and parents of those who have earned their angel wings. We laughed and smiled with the healthy kids and their parents, and cried for the heroes no longer with us. Like I said, it was an emotional day. We were also able to see many of the doctors and nurses that help treat these kids everyday. These people are truly special and we love all of them. They make all of the children feel as if they are special. The transplant world would be so much harder if we didn't have such truly caring and compassionate doctors, nurses, and staff. Thank you all for everything you do! I got some good pictures today, make sure you check out the photo page.
I also wanted to update and let everyone know that Jordan is eating a little better and is completely off the TPN. His weight was up on Friday, and the doctors were very pleased. He still has this GvH rash and we are trying to get rid of it, but we aren't having much success. Hopefully we can try a combination of some creams to get rid of it completely. Once the rash is at bay, we can lower the steroids again. GO AWAY RASH! Well, I better go entertain the baby. He is yelling DA DA DA DA. I think that means I am supposed to pay attention to him. Until next time, go hug and love on your kids!
Love,
Carrie

Tuesday, April 27, 2004 3:13 PM CDT

I just love getting good news! Jordan's MRI showed improvement in his brain and the infection is improving as well. The antibiotics are working and he is healing! Thank you for all the many prayers. They are working. Jordan is doing something different everyday. Last night Connie was snapping her fingers and singing to Jordan and he reached his hand up and put his fingers together to try to snap too. We were shocked! He is so smart!

Clinic went well today. It was long, but good news is worth the wait. Dr. K. was very happy with Jordan's progress. His labs looked great, and we even stopped his TPN (cheeseburger in a bag). We are going to see how he does with eating the rest of this week and will check his weight on Friday. If he maintains his weight or gains then we will just keep doing what we are doing. If not, we will try to be more creative with meals or something to get him to eat more. We were also able to stop some of his medications today, which is wonderful. He is now on only two antibiotics (instead of 4). We hope that his eating will improve with the medications cut back a little. Once we get Jordan eating well and gaining weight, we can discuss going back home. Jordan and I are getting homesick because Patrick went back home to work this week. We miss him so much. Patrick, Jordan said to give you big hugs and kisses. It's hard being apart, but we don't have a choice right now. Patrick had to go back to work so that we can keep our insurance and our house. It's hard, but we have to do what we have to do. I love you Patrick and miss you more than you know!

****We would like to thank Jennifer Kershaw and Amy Wilson for putting together a benefit dance at the Witt Lions Club for June 12th! Jennifer is asking for help and donations, which will be much appreciated. If you would like more information, have items to donate, or want to help, contact Jennifer by e-mail at jkershaw@frontiernet.net or e-mail me and I can get her the message. Thank you Jennifer and Amy in advance for so generously giving of yourselves to help our family. ****

We would also like to thank Heather and Shad Mallady for the gift certificate and such cute outfits for Jordan. We loved them as usual. We would also like to thank John and Julia Duplessis (our lifeline pilot and his wife) for the Wal-mart gift certificate. It will greatly help with items for Jordan. We appreciate your kindness and generosity. We also want to thank Carla VonderHarr and Montgomery Nursing and Rehabilitation for the Dress Down Days for Jordan. What an awesome thing to do for our family. Thank you tons!

Love,
Carrie

Tuesday, April 20, 2004 1:09 PM CDT

***NEW PICTURES 4/24/04***
The MRI went well, but we don't have the results yet. We will update as soon as we hear something. ****HAPPY 50th ANNIVERSARY TO ORLAN & DONNA JANSEN ON SUNDAY! CONGRATULATIONS!****

HAPPY 3rd BIRTHDAY SHERIDAN! We are sorry we missed your party this weekend, but we love you! Jordan sends big hugs and kisses!

Wow, it is 2:00 our time and we are already out of clinic. We were shocked. Jordan is doing well, but his GvH rash is still flaring up a little. Dr. K. decided to raise his steroids (only for three days) to try to get this rash under control. We hope this will help with his itchy dry skin. He is starting to look like a lizard (peeling all over). Dr. K. stopped one of his antibiotics and switched the other IV one to oral. He is now on three oral antibiotics and no IV. We also put him back on the nasty flagyl because he is having nasty diapers again(that may or may not be c-diff). Jordan is starting to eat a little off a spoon and enjoying it. We hope we can get him to eat some other foods so that we can stop the TPN. Jordan will have an MRI on Thursday to determine if the antibiotics are doing the job. Let's hope they are. We want Jordan to be out of this back brace as soon as possible. We were able to go to the brace shop today and get the "turtle shell" (as we lovingly call it) cut down. Jordan seems much more comfortable in it now. Jordan is making some real progress with physical therapy. He has grown enough that we were able to finally put him in a stander. A stander will allow him to get some weight bearing on his legs. This will make his muscles and bones much stronger, and he will get accustomed to what standing feels like. This should help him to crawl and walk more quickly. Right now, this osteo-mylitis (infection in his vertebra) is our biggest hurdle. Once we are able to get those bones stronger again we should see major progress.

Thank you to Laura Ladd for the card and donation. We pray everything is going well with your boyfriend. Thank you to Jennifer Ardner for having an awesome fundraiser and helping us out. Thanks for the gift certificate too. Thank you to Holley & Matt again for the hilarious card and donation. Thank you to Carla and the staff at Montgomery county nursing for the dollar days fundraiser for Jordan. We got the article and money this week. You are all so sweet. Thank you to everyone for all you do. As always, the donations and support are much appreciated!
Love,
Carrie

This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at our apartment.
Patrick, Carrie, & Jordan Horton
1902 White Pine Drive
Durham, NC 27705

Thank you again for all the donations, and support!
Love,
Patrick, Carrie, and Jordan

Saturday, April 17, 2004 3:30 PM CDT

This is just going to be a quick note to let you all know that Jordan is doing well. He is adjusting to his back brace, but it is slow going. I think I am having a harder time with it than he is. I am reluctant to put it on him because he can't roll over or do anything with it on. We are going to try to get it adjusted soon so that it is more comfortable for him. We had our clinic visit on Tuesday and everything went well, but we did not lower the steroids. Jordan's GvH rash is still coming and going, so we will probably wait a little while longer. We are still having trouble with his port. Sometimes it works just fine and then all of a sudden it just quits working. We had to take him in to clinic today to have it flushed with TPA (clot buster). It seemed to work really well, and we hope that this solves the problem. Jordan has an MRI of his head and back on Thursday to see what the infection looks like. Dr. K. doesn't expect to see a big difference, but she wants to make sure the infection is not getting worse. We will let you know the results when we get them. Since Jordan will have to be sedated for the MRI, Dr. K. thought we would go ahead and do a brain MRI at the same time. This will prevent us from having to sedate him again in a few weeks for a brain MRI for his 18 month studies.

Thank you to Laura, Ken, Nathan & ^Jillian^ for the money and card. Thank you to Mom and Dad Yeske for Jordan's Easter basket, he loved it. Thank you to Robin Boger for bringing us a wonderful Easter dinner and Surprise last Saturday. Robin brought us Shawn Coble! Robin and Shawn, it was great to see you both. Thank you to all the workers at the Macon County Court House and probation dept. for the donations and cards. Thank you to everyone for the many, many guestbook entries, thoughts, and prayers. They mean so much to us.
Love,
Carrie

This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at our apartment.
Patrick, Carrie, & Jordan Horton
1902 White Pine Drive
Durham, NC 27705

Thank you again for all the donations, and support!
Love,
Patrick, Carrie, and Jordan

Saturday, April 10, 2004 10:58 AM CDT

HAPPY EASTER!
Hello to all! Sorry we haven't updated sooner, but we have limited access to a computer. Jordan is feeling so much better. He is rolling over and jabbering all day long. Obviously the antibiotics are working. Jordan is also gaining strength now that he is on the TPN. We hope that as we start weaning the steroids again that he will start growing. Dr. K. wanted to wait another week before we lower his steroid dose because his hemoglobin was a little low on Tuesday. On Friday his hemoglobin started going up again, and we were happy to see the improvement. On Tuesday Dr. K. will probably lower him down to 1mg twice a day. Jordan is beginning to gain some weight, and we are happy to see his appetite slowly increasing.

We want to thank several people for gifts we have received in the past few days. Thank you to Hendricks Marrow Program for the three huge boxes of diapers, wipes, laundry detergent, phone cards, and many other wonderful gifts. We also want to thank Alicia Bennett for the gift card. We will get Jordan some summer outfits with the card. Thank you again to Matt & Holley Sharp. Your support never ceases to amaze us! Thank you to Robin Boger and the Christ Moravian Church Disciples class for Easter Dinner! Thank you to Don and Deb Dimmit for the money and blessings. Thank you to our wonderful sister/sister-in-law Kris and the Macon County probation department for the donations and well wishes for Jordan's recovery. Thank you to Brent and Tanya Engelman for the gift card and letter. Thank you to everyone who sends us a card or e-mail and to everyone who signs the guestbook. It means a great deal to us to get so much support from everyone. The cards, e-mails, letters, and entries help to really lift our spirits, and we can't thank you all enough for your kindness and generosity. Thank you all again.
Love,
Carrie

This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at our apartment.
Patrick, Carrie, & Jordan Horton
1902 White Pine Drive
Durham, NC 27705

Thank you again for all the donations, and support!
Love,
Patrick, Carrie, and Jordan

Sunday, April 4, 2004 12:18 AM CDT

We are back at the apartment and are happy about it. Jordan is enjoying having more than four walls to look at. He is still trying to adjust his sleeping patterns, but he is doing ok. He would be doing better if our neighbors upstairs weren't so loud or up at all hours of the night. I swear these people never sleep, or they only sleep during the day. Anyway, our first day at home was quite eventful. I did fine with the TPN and other meds, but Saturday morning I woke up to Jordan with a swollen chest. The needle had worked its way out of his port and his chest was filled with TPN (cheeseburger in a bag). He was crying and I felt terrible. We had to call in to the clinic and make an unscheduled visit. We were worried that we would be unable to reaccess his port because of all the fluid in his chest. JulieAnn and Kim were great. They expressed as much fluid as they could and then JulieAnn reaccessed him on the first try. Jordan did surprisingly well despite us not using anything to numb him. We were just thankful that his port had not clotted off. After that we all went home and took a long nap. We are still trying to get adjusted to being in a new place. We are getting some help with feeling at home though. Robin Boger and the Moravian Church Disciple class sent us tons of gifts including diapers, wipes, towels, clorox wipes, and many other items. Thank you guys so much. We were pleasantly surprised by your generous donations! Robin, thank you for bringing us all those wonderful gifts and thank you for the outfits and money. I look forward to seeing you again when we don't have to run to clinic. Aunt Shawn, she did give baby Jordan a big kiss for you. Thank you to Holley and Matt Sharp for the generous donation. Holley, I will be calling to chat soon! I also want to send a huge thank you to Kahlita and HeCares ministries! She is trying to do a big fundraiser for our family, and she is setting up an account so that people may make tax deductible donations on or off-line. I will post all the details very soon.
Thank you to all!
Love,
Carrie

This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Hand sanitizer
*Paper towels
*Dove bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at our apartment.
Patrick, Carrie, & Jordan Horton
1902 White Pine Drive
Durham, NC 27705

Thank you again for all the donations, and support!
Love,
Patrick, Carrie, and Jordan

Thursday, April 1, 2004 8:55 AM CST

I PASSED THE EVALUATION AND WE ARE OUTTA 5200 TOMORROW AFTERNOON! I'LL UPDATE MORE LATER!

***NEW PICTURES***
Jordan is doing well and the doctors are discussing discharging him tomorrow or Monday. We are just trying to workout all the details. Since i've never done TPN at home. The discharge nurse feels I need to have a nurse come in our home and show me how to do it. They don't have any nurses available on Friday. I get so frustrated. I want to say, "look honey, I've been doing this for 16 months. I think I can handle one more med at home." She said we will see how the "teaching session" goes this afternoon, and then she will make a decision. I guess if I pass her test, we go home tomorrow. If she "doesn't feel comfortable," then we will go home on Monday. We'll see. I don't want to rush Jordan out of the hospital, but we are all getting restless in here. Jordan is feeling better and tolerating these four walls less and less. This is making me tolerate everything less and less. None of us are getting much sleep, and it is starting to catch up to us. I find myself frustrated with everyone and everything. Every little thing is irritating the crap out of me. I think things will be better once we get back to the apartment, but it is just a pain until then. Sorry . . . I just had to vent.

Other than a lack of sleep, things are going pretty well. We do have some concerns though. Jordan is still not eating. He is refusing to take his oral meds. This is a problem because we are forcing them down him and half the time they end up back on us. We are going to discuss with the doctors what we can do about this issue. We are also concerned with a cough that Jordan has developed since he was intubated. He sounds junky in his throat, but his lungs are clear. The doctors think it is residule mucos from being intubated twice in three days. The tube in his throat causes irritation. Hopefully in a few more days this will get better. We are keeping a close eye on it though.

My Mom is leaving tomorrow afternoon to go back to Illinois. I am so glad she was able to come and stay with us for a while, and I am sad to see her go. I know that she needs to get back to her job and to my father. I want to congratulate my younger sister on her job promotion and move to St. Louis. This is a huge opportunity for Cherie and I am so proud of her! Congratulations "little sister!" Congratulations to Angie and Luke on the news that they are going to have a little Boy! YEAH, Sheridan is getting a little brother. Congratulations, I love you all!

I want to ask a special prayer for baby Jason Forslind. He is in the PICU on a C-Pap with Paraflu in the lungs. This is very serious, but his mother says he is coughing and fighting the doctors (which is always a good sign). We met the Forslinds when Jordan was here for transplant in Dec. of 2002. The Forslinds were here with their two boys Kyle and ^Mitch^ who were being transplanted for Krabbes. ^Mitch^ lost his battle shortly after we came to Duke for transplant, but Kyle is doing well. The Forslinds had Jason four months ago and unfortunately he also has Krabbes and was transplanted on March 15th. ^Mitch^ also had paraflu, and we have lost many other transplant angels to this nasty bug. We ask that everyone say a special prayer for baby Jason's recovery and strength for his parents. I love you Fran!
Love,
Carrie

This trip has left us in Dire Straits financially! If anyone can do a fundraiser to help us (big or small) we would greatly appreciate it! If you can help, here is a list of our Needs:

***Prayers***
*Fundraisers (car wash, yard sale, bake sale, raffle, etc.)
*Pediasure (vanilla)
*Diapers size 3 (19 lbs)
*Dreft stain remover
*Dreft or Baby All, or other liquid laundry detergent (powders irritate Jordan's skin)
*Dove bath wash and shampoo (Jordan can't use Johnson & Johnson baby products -- they are too drying)
*Oust air sanitizer
*Wet one's antibacterial wipes
*Diaper wipes
*Lysol or Clorox wipes
*Onesies or summer clothes (18 months)
*Gift certificates (Krogers, Wal-mart, Target, blockbuster, or any food certificates)
*Monetary donations can be made to the benefit fund at the address above, or sent to us at our apartment.
Patrick, Carrie, & Jordan Horton
1902 White Pine Drive
Durham, NC 27705

Thank you again for all the donations, and support!
Love,
Patrick, Carrie, and Jordan

Sunday, March 28, 2004 4:07 PM CST

Sorry I haven't updated. Things have been hectic, and we don't have a computer at the apartment. Jordan seems to be doing better. His back brace has been made, and he doesn't complain too much about wearing it. We looks like a turtle when wearing it (his arms, legs, and head stick out). He can't roll over or move as well with it on, but it makes us feel more comfortable when moving him around. He is going to start his therapies (speech, Occupational, and physical) again while inpatient so that we can continue them when we bust out of 5200. Jordan will probably be here for another week, and then we will take him back to the apartment at the Forest. Dr. K. told us it is going to be a minimum of 2-3 months staying here. We got his preliminary biopsy results. We should get the final results by the end of the week, but so far the doctors believe that he has a very rare micro-bacteria. This bacteria is so rare that there have only been two other documented cases in children his age. Most of the time this bacteria is seen in AIDS patients, but since when does Jordan follow the norm. If it is rare that something will happen, we can count on Jordan to test that theory. The good news is that the bacteria is very treatable. It is a very slow growing bacteria, so it takes longer to kill it (why? I don't know). Anyway, instead of 6-8 weeks of antibiotics, Jordan has to be on antibiotics for 6-8 months. We are not thrilled about this, but it could be much worse. They have switched Jordan's oral and IV antibiotics around a few times over the last few days and now his rash is getting worse. The doctors believe that one of the antibiotics is causing the itchy rash. We are giving him benadryl to help with the itch. One of the meds was making Jordan sick to his stomach, but we think we have that regulated now too. He seems to be tolerating everything a little better. Despite everything, he is still laughing, blowing kisses, and waving to everyone who enters or leaves his room. He has even started putting his hand in his mouth to show us his tongue and meow like a cat when asked. Socially, he is making huge steps everyday. The nurses and doctors here have been giving him tons of attention, and he willingly entertains them with all of his new tricks. Although it is difficult to be here in the hospital, we are happy with the treatment Jordan is getting. We are confident with the medical knowledge of the staff here and are sure Jordan is getting the best care possible. We thank everyone for the many, many guestbook entries and cards. The support has been fantastic!
We send a special thank you to Cathy & Buster Bridges for the card and money. Thank you to Curt, Helen, Zach, & Samantha for the letter and money. Thank you to Holley and Matt Sharp and Aunt Kelly & Uncle Luke for the money. You guys have no idea how much these gifts help us.
We still encourage anyone who can to do a fundraiser to help us out. Once Jordan is out of the hospital, Patrick is going to work out something with work and go back and forth, but until then we have no income and have lots of bills. This trip was unplanned and costly but necessary. If anyone can work on a fundraiser (big or small), we would greatly appreciate it.
Thank you so much. I will try to update later with more details on Jordan and with some pictures of Jordan in his back brace (or bullet-proof vest as Patrick calls it).
Love,
Carrie
I don't have the exact address for the apartment yet, but until then you can send mail to:
Carrie, Patrick, & Jordan Horton
c/o Michael Horton
1416 Old Lystra Rd. Apt. 2
Chapel Hill, NC 27517-7769

Wednesday, March 24, 2004 1:49 PM CST

We haven't heard the official report from the biopsy that was done yesterday, but we haven't spoken to the doctors yet today. Jordan did great with the CT guided biopsy yesterday. It was a little scary because he was intubated and sent to the PACU recovery (Kind of like a step down room) and he was still intubated when they wheeled him down the hall. Patrick, and I had flashbacks of last May when they moved Jordan to the PICU. It was a little unnerving, but as soon as he was in the PACU room, the doctors removed the tube and put him back on the nasal canula. We were able to go see him shortly after and he was very happy to see us. He doesn't act as if he is in pain, so we are thankful that the procedure was fairly simple (as if anything with Jordan is simple). The doctors are hopeful that the antibiotics will heal the infection, but it is a waiting game. We will have to wait six to eight weeks before we know anything definite. Jordan will probably be in-patient on 5200 for another week and then will be seen daily in the BMT Clinic for the remaining 6-8 weeks. At that time the doctors will make a determination about the best place for Jordan and further treatment for his damaged vertebrae. The orthopedist (bone doctor) gave us good news yesterday. He said that we were allowed to hold and snuggle Jordan, but we have to be very careful about the way we handle him. To help with this situation, he was fitted for a back brace today. It will be finished tonight or tomorrow morning. This will help us to breath a little easier when moving him around.
We did find a furnished apartment to stay in while we are here, but it costs a a small fortune. The social worker was able to get us a discount, but it still costs $60.00/night plus tax. This includes all rent, all the furniture, towels, cable, water, telephone, etc. We also have our own washer and dryer, which we have to have with all of Jordan's things. It is cheaper than staying in a hotel, but we couldn't believe how expensive it was to stay here. There were no rooms available at the Ronald Mcdonald house, so we will have to suck it up financially. Please pray for all of Jordan's medical needs and the knowledge of the doctors. We also ask that everyone say a prayer for our financial needs as well. We are still very concerned about Jordan's condition, but we have avoided the worst case scenario (major surgery) so far. Hopefully the antibiotics will do the job. and he will be recovering soon. He remains happy and is eating a little better. We are going to cut his TPN (cheeseburger in a bag) in half tonight and as he eats better, we will reduce it. Thank you to everyone for the many, many guestbook entries. They mean so much. It really lifts our spirits to see how much you all are thinking about and loving us. We love and miss you all. Take Care!
Love,
Carrie
I don't have the exact address for the apartment yet, but until then you can send mail to:
Carrie, Patrick, & Jordan Horton
c/o Michael Horton
1416 Old Lystra Rd. Apt. 2
Chapel Hill, NC 27517-7769

Monday, March 22, 2004 9:29 AM CST

*****Update 9:09PM Monday******
We have some better news after many tests today. The infection in Jordan's vertebrae is not an abcess, which is a good sign. The tissue around the vertebrae is infected and the doctors originally wanted to biopsy that area. After a complete bone scan this afternoon, we found another place of infection on Jordan's hip. Although this sounds worse, it is actually a good thing. The biopsy and cultures can be drawn from his hip area instead of from around his spine. This makes the procedure much safer. The extensive surgery may not have to be performed. The doctors here believe that they will be able to culture the area, find out what antibiotic will work best, and treat it with long term IV antibiotics. Jordan's situation is still very serious and we will still need to be here for a lengthy visit, but at least the worst case scenario is not true. I am a firm believer in the power of prayer, and your (and our) prayers have been answered. Praise God. Please continue to pray for Jordan's complete healing. We are still unable to pick him up or move him, but hopefully a back brace will be made in the next few days so that we can once again snuggle our precious one. Thank you so much!
Love,
Carrie



I know everyone is anxiously waiting an update and unfortunately I have to update with some bad news. Our fears that Jordan's spinal injury was a serious infection have been all but confirmed at Duke. The doctors here have repeated all the tests done at St. John's hospital and the conclusion is that Jordan has a serious infection in the bone and/or tissue surrounding his spinal cord. The infection is in his 9th,10th,& 11th thoracic vertebrae. This is an extremely serious infection that is going to require major surgery and a long recovery at Duke. Although it's hard for the doctors to determine exactlly when the infection occured, they do know that it has been brewing for some time. Currently we are unable to pick up Jordan to offer him comfort or recieve the same. He is required to lie flat on his back for fear that movement will cause major nerve and spinal cord damage or permanent paralysis. We are scared to death. Our baby is hurting and we are unable to hold him. This infection was found by mistake at St. John's and that is unacceptable for us. Jordan went in for a CT scan of his chest to see how serious his central line site infection was and the CT scan showed a serious problem in his back. We decided it was time to call Dr. Kurtzberg. Dr. K. was unaware that Jordan had even been inpatient in the last two weeks and this was also unacceptable. Dr. K. spoke with Dr. Brandt and made arrangements for Jordan to be on an emergency Life Flight from St. John's to Duke. The doctors here are running extensive tests to check for infection anywhere else in his body. If there are no other infections (other than the chest and vertebrae), they are going to meet with the team of eight specialists that have seen Jordan here in the last 24 hours and decide the best way to treat him. The team of doctors include the Bone Marrow Doctors, a few neurologists, orthopedists, nutritionalists (Jordan is malnurished from not eating), infectious disease control, and others that I can't even remember. The last few days have been a complete blur and Patrick and I are emotionally and physically exhausted. Jordan was put on the bone marrow unit and is getting three IV antibiotics, TPN (cheeseburger in a bag), Lipids (to fatten him up), and many other IV meds. Despite everything, Jordan is not even acting as if he is sick. He is smiling and doing his new "fake laugh." He is flirting and entertaining all of the nurses here. He is home. Duke feels right to us. I never thought I would be happy to be back here, but I am so thankful to be here right now. Since we have been here we have gotten so many answers. Please don't get me wrong. We can't blame the doctors in Springfield. We would like to blame someone, but they were just not equipped to handle Jordan's care and we overestimated their ability to care for him. I know I am rambling, but I haven't had much sleep. Sorry. Jordans team of doctors are meeting today to schedule a surgery for later this week. This surgery is going to be major. They have a bed in the PICU reserved for Jordan because they are anticipating a long recover including mechanical ventalation. This surgery will probably require deflating a lung and with Jordan's existing breathing problems, the surgery is more risky. Although this all seems overwhelming, we are confident that the doctors here will be able to give Jordan everything he needs to recover. But, this is going to be a long stay at Duke. We are in desperate need of financial help. This trip is going to be lengthy and our insurance is not helping with any travel or lodging expenses. Whatever fundraisers anyone can do would be greatly appreciated. Patrick and I want so badly to be able to provide financial support for Jordan, but with his serious condition, neither of us are able to work right now. Please, Please keep our precious baby in your thoughts and prayers as well as our financial and emotional needs. We want to thank everyone who has signed the guestbook to show us your support. Those words help lift us up when it all seems too overwhelming. As soon as we know more about Jordan's condition and surgery, we will update you all. We are currently searching for a place to stay, but donations or letters can be sent to us in care of Patrick's brother. The address is below. Thank you again and God bless.
Love,
Carrie

Carrie, Patrick, & Jordan Horton
c/o Michael Horton
1416 Old Lystra Rd. Apt. 2
Chapel Hill, NC 27517-7769

Saturday, March 20, 2004 2:16 PM CST

IMPORTANT UPDATE!!!!!!!!

This is Ellen, a friend of Carrie and Patrick Horton. I spoke with Carrie today as she was driving from the hospital in Springfield, IL where Jordan is inpatient. Jordan is having MAJOR COMPLAINTIONS with a vertebra (s). The doctors are unsure if Jordan has an infection or compression fracture in his spine. They are LIFE FLIGHTING him to DUKE MEDICAL CENTER TODAY. If his condition worsens there is a possibility that Jordan will undergo emergency surgery. Their greatest fear is that this is an infection that is destroying Jordan’s vertebras. If this is so, it could cause some serious and life threatening issues. At this present time they are looking at several weeks to months of recovery in Durham, NC. PLEASE know that The Horton’s NEEDS your PRAYERS and Financial Support . Please know this that Jordan’s condition is extremely serious. Due to the lack of computer assess, updates maybe delayed. Therefore, I encourage you to continue your prayers of healing for Jordan and strength for his parents.

God Bless,
Ellen (Andrew’s Mom)
(We love you guys! Our prayers are with you.)


PRAYERS NEEDED:
Direction for Doctors
Financial Support for The Horton’s
Housing
Healing for Baby Jordan
Fundraisers for Baby Jordan

Monday, March 15, 2004 11:34 AM CST

Happy St. Patrick's Day! Happy Birthday to Todd Vohland on the 17th & Happy Anniversary to Mom & Dad Yeske and Stephanie and Don Vaughan on the 18th!

We are home again. This week has been a long one, but Jordan was released from the hospital yesterday. When Jordan had another fever on Friday, he was readmitted to St. John's in Springfield. More blood cultures were drawn and a nasal viral battery test was done to check for RSV and paraflu. Everything came back negative and after a few more doses of IV antibiotics the fever was gone again. Dr. Brandt thought that we didn't give him enough of the strong IV antibiotics, so we continued those through Sunday, and switched back to the oral antibiotics last night. So far, Jordan is fever free. We hope he stays that way. I can't handle any more nights in the hospital for a while. Friday night Jordan and I got about 3 hours of sleep total. We were both miserable and wanted to go home Saturday. I was sick of people coming in and out of the hospital room every hour to do vitals or ask me questions that I had answered ten times before. I know that St. John's is a teaching hospital, but Saturday morining Jordan became a non-teaching case. I refused to let anyone else see him. Not only were we not getting any rest, but Jordan was being exposed to way too many people. I finally had enough and Dr. Brandt agreed that we didn't need the added stress of dealing with student doctors. Jordan and I were sleep deprived and not in the mood to be inturrupted. Normally I don't mind answering questions for the student doctors because Jordan's case is rare, and they can learn so much from him, but I had had enough. Finally we were left alone and were able to sleep for a while and I was in a much better mood.
My spirits were greatly lifted when Stephanie and Don Vaughan (Jordan's Godparents) came to the hospital to visit us. They spent the whole day pampering us. They brought tons of gifts from all the people they work with and from Don's mother. Thank you all so much for the many packages of diapers, wipes, laundry detergent, and air sanitizer. You all have no idea how much those gifts helped us out. We are extremely grateful. Thank you to Stephanie and Don for making the trip and bringing us the gifts and a wonderful dinner. You guys are so wonderful, and I can't wait to see you again soon! This time you have to visit when Jordan is home.
Thank you to all who have signed the guestbook and checked in on us. It is amazing to see so much support and it means so much to know that you all care.
Love,
Carrie

We are still humbly asking for help. If you are able to give, here is a list of our needs.
NEEDS:
* Pediasure (vanilla)
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All, Dreft, or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Oust air sanitizer
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Friday, March 12, 2004 6:31 PM CST

I got home from work this morning.Carrie and Jordan were laying in our bed playing. I laid down to play with them and fell asleep. I worked from 11pm to 7am. My normal shift. I fell asleep and woke up an hour and a half later to use the bathroom and Carrie was just getting Jordan up from his nap because his occupational therapist was here. Carrie thought Jordan felt warm so She took his temp. 102.2 So we called Dr. Brandt and readmitted him. It is a little too early to tell what the problem is but I will let everyone know as soon as I do. I just got home to get a nap before work. Carrie's mom and dad and my mom and dad are out of town so I really shouldn't go in but we are getting so far behind financially I just can't afford not to. Anyway Jordan is feeling better. On the bright side my sister got her and I free tickets to Sean Hannity's book signing in the morning. We are going to go straight from work and then I'll drive straight to the hospital. I am really excited. For those who don't know he has a show on fox news and a syndicated radio program. I am a huge fan and I can't wait to go even though I kind of feel guilty about taking the time to do it. Anyway as soon as I have more to tell I will.

Patrick


We are still humbly asking for help. If you are able to give, here is a list of our needs.
NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Oust air sanitizer
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Friday, March 12, 2004 6:31 PM CST

I got home from work this morning.Carrie and Jordan were laying in our bed playing. I laid down to play with them and fell asleep. I worked from 11pm to 7am. My normal shift. I fell asleep and woke up an hour and a half later to use the bathroom and Carrie was just getting Jordan up from his nap because his occupational therapist was here. Carrie thought Jordan felt warm so She took his temp. 102.2 So we called Dr. Brandt and readmitted him. It is a little too early to tell what the problem is but I will let everyone know as soon as I do. I just got home to get a nap before work. Carrie's mom and dad and my mom and dad are out of town so I really shouldn't go in but we are getting so far behind financially I just can't afford not to. Anyway Jordan is feeling better. On the bright side my sister got her and I free tickets to Sean Hannity's book signing in the morning. We are going to go straight from work and then I'll drive straight to the hospital. I am really excited. For those who don't know he has a show on fox news and a syndicated radio program. I am a huge fan and I can't wait to go even though I kind of feel guilty about taking the time to do it. Anyway as soon as I have more to tell I will.

Patrick

Thursday, March 11, 2004 4:00 PM CST

Jordan is home and doing well. He is very happy to see his own house again. We were able to switch his antibiotics to oral so that we don't have to access his port at home. This makes things much easier. We are lucky that the infection stayed in his skin and did not travel to his blood. This kept Jordan from becoming septic and he can recover more quickly. We will go see Dr. Brandt on Tuesday to make sure everything still looks good. I will update after that visit. Thank you to everyone who said an extra prayer for Jordan this week. Those prayers obviously help.
Thank you to Ron and Suzanne Little for the gift certificates. Pizza and movies at home are two of our favorite things. We will be using those to relax after this hectic week. Thank you!
Thank you to Heather and Shad Mallady for the Wal-mart gift card. It is just what we needed. I just wish you all were closer.
Thank you to Jennifer and Jamie Hines for the care package. It was at home when we got out of the hospital today. It was a great welcome home gift.
I ask all of you to say a prayer for Matt & Holley Sharp's sister, Betsy. She is battling pnemonia and is having a rough time. Matt & Holley- You are in our thoughts and prayers.
Keep our parents (Jordan's grandparents) in your prayers this week. Both are going out of town. We pray that they travel well. Since they are gone, we have no back up. We don't realize how spoiled we are by them until they are gone. They are a huge help and their helping hands will be missed this week, but we will be having some company this weekend. Stephanie & Don Vaughan (Jordan's Godparents) are coming to visit Saturday and staying all night. I am so excited to see them. They have never met Jordan in person, and we are thrilled that they finally get to see him.

Love,
Carrie

We are still humbly asking for help. If you are able to give, here is a list of our needs.
NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Oust air sanitizer
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Wednesday, March 10, 2004 4:42 PM CST

Before I start with all the details, I want to let everyone know that Jordan is doing well. He is in the hospital at St. John's right now being treated for a skin infection. On Sunday we noticed that the site where Jordan's central line was removed looked slightly red and swollen. We decided to watch it and see how he was doing Monday morning. On Monday it was worse and he was running a very low grade fever. We called Dr. Brandt and decided to make our bi-weekly clinic visit a day early. Dr. Brandt checked out the area and drained lots of nasty stuff from the site and cultured it. He put him on IV antibiotics and we decided to give him his IVIG so we wouldn't have to go back to Springfield on Tuesday. While we were waiting for Jordan's medicine to come from the pharmacy, he spiked a fever and we were admitted to the hospital. The site grew a staph bacteria, but his blood cultures have remained negative. Dr. Brandt said that, so far, the infection has stayed localized to the site. We switched him to vancomycin and restarted his nasty flagyl too. After some IV fluids, Jordan seems to be feeling much better and the site is looking better to. Dr. Brandt said that the infection isn't traveling to his blood so far and that is a good sign that Jordan is starting to regain his immune system. His counts still look great and he should be able to come home tomorrow or Friday. We will keep you updated on his condition. Sorry this is kind of short, but I need to get back up to the hospital. We will let you all know more when we know it. Thanks for checking up on us.
Love,
Carrie

We are still humbly asking for help. If you are able to give, here is a list of our needs.
NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Oust air sanitizer
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Wednesday, March 3, 2004 9:41 PM CST

So far so good . . . Jordan seems to be tolerating the steroid wean, and his rash is not getting any worse. In fact, his skin condition is improving. The downfall to lowering Jordan's steroids is that his appetite has also decreased. We are going to wait a few more days to see how he does, and then we may give him an appetite stimulant. Jordan is trying to eat a little off our plates when we eat, but not a significant amount. We are just happy that he smacks his lips and opens his mouth when we are eating. He acts as if he wants whatever we are eating and will let us put some mashed up food in his mouth. This is a start.
Jordan and I have been avoiding Patrick since Saturday when he started feeling crappy. He went to the doctor yesterday, and I think he has a sinus infection. We pray that Patrick is the only one affected by the illness. Clorox wipes and Oust air sanitizer are becoming very familiar in our home (even more than usual). Every time Patrick sneezes he is washing his hands and sanitizing what he touches. We can't be too careful.
My sign language class is going well. I had my third session today, and I am doing well. It is difficult to remember everything, but my teachers make it so much fun. They are really laid back and are willing to answer many questions. So far I have gotten 100n both of my tests. I am pretty proud of myself. It is easier for me to learn when I have Jordan as a means of motivation.
I wanted to end by saying a big thank you to Holley and Matt Sharp once again for the money and card. You guys have overwhelmed us. We continue to pray for your sister/sister-in-law.
I also want to thank Robin Boger for the gift card and calling card. We will use the calling card during our trip to Duke in May. Thank you so much!


Thank you to everyone for checking in with us and please sign the guestbook to let us know you came by.
Love,
Carrie

We are still humbly asking for help. If you are able to give, here is a list of our needs.
NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Oust air sanitizer
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Thursday, February 26, 2004 5:41 PM CST

DA DA-
HAPPY BIRTHDAY! You are my best friend and you make me laugh so much. I love you bunches!
Love,
Jordan

HAPPY BIRTHDAY PATRICK! You are the best husband and father in the world and I hope you enjoy your day.

Jordan's clinic visit went well on Tuesday. Neither Jordan nor I cried when I accessed the port. I was relieved that it was easier than I had anticipated. The GvH rash is creeping up again, but we still decided to lower his steroids to 2mg. We increased his creams and are going to try to keep the rash under control with the Elidel and lydex. We hope that this does the trick, and we can keep weining the steroids. Jordan's labs looked great. His hemoglobin was 14.1 (wow!) and his platelets were 369K. Everything else looked great, but his liver functions are up a little more than they have been. Dr. Brandt didn't act as if he was concerned, and we get to go another two weeks without labs or a clinic visit! We stopped Jordan's flagyl, which is a very yucky med. It makes everything taste funny, and we hope that Jordan will start eating better and trying new things by getting rid of the med. We already found out that he likes Ice Cream and pancakes. He is his mother's boy! Well, I better go so that we can celebrate Patrick's birthday. Thank you all again for all the well wishes and encouraging words. We love you all.
Love,
Carrie

On a more personal note:
For those of you who have been following our story for quite some time and even for the newcomers, you know that it has been a difficult journey. This journey has been long: much longer than we ever imagined it would be, and it's not over. It has drained us emotionally and financially. Since we were both off work for an entire year, we are struggling to make ends meet. We have had some extremely generous people (including our families) supporting us (financially) throughout this journey. We are so thankful for everything that everyone has done for us. We feel blessed to have had great support. But . . . we once again have to swallow our pride and ask for help. This is something I have been putting off since we came home. We thought that once Patrick got back to work our finances would work themselves out. Sadly, that has not been the case. We are struggling to pay our bills and have enough money to put gas in our cars for work and doctors visits and still have enough to buy groceries. I didn't think we would miss my income so much, but we really do. Since we have been unable to get SSI benefits for Jordan, we have only one income for three people. We still have tons of doctors bills and everyday expenses that everyone has, but we also have to think about our return trip to Duke in a few months. We did not want to have to ask anyone for anything, and I feel terrible even asking, but if anyone can do a fundraiser to help us out, we would greatly appreciate it. We still have the account for Jordan at Hickory Point Bank & Trust here in Decatur. The address is above. We have also posted a list here of items that we can use for Jordan. We thank everyone so much for their support and humbly ask for prayers for our financial needs. Please know that we would not ask for a dime if we didn't need it.

NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Monday, February 23, 2004 10:50 AM CST

Hello to all-

I just had to share some good news with all of you. Jordan is not only rolling over often, he is rolling all over our floor now! He has rolled over several times in the last several months, but not like he is now. He is rolling to his tummy and pushing up with his arms and then flipping on to his back again. He is actually enjoying it. We haven't seen him act like this since before he went into the PICU back in May. We are overjoyed. He is also really improving his fine motor skills. He has started releasing objects into a bucket. This doesn't sound like a big deal, but before he had no control over where he dropped items. He can actually pick up toys and put them where he wants them to go. This is such a huge step in his motor skills development. His occupational therapist said that he has met all the goals that she set for him back in October, and now she has to write a new plan with new goals. We are so excited. Don't get me wrong, Jordan still has a long way to go to catch up to his peer group, but just seeing such progress in the last week has made us so proud (as if you couldn't tell)!

We have our bi-monthly clinic visit tomorrow. The nurse is going to have me access Jordan's port, so wish me luck. I am a little nervous because it's only the second time he will be accessed, and he is still a little bruised. I'm sure all will go well. Before I go, I want to send a big thank you to Matt and Holley Sharp for the beautiful card and the check. You guys are too sweet to us, and we continue to pray for Matt's sister. I ask everyone for a special prayer for this family. Matt's sister needs prayers for recovery from a bad car accident. Please keep their family in your prayers. I will update tomorrow or Wednesday with news from our clinic visit. I will also be posting information about the Rainbow of Heros walk for the PBMTU soon. Take care and go hug your kids.
Love,
Carrie

On a more personal note:
For those of you who have been following our story for quite some time and even for the newcomers, you know that it has been a difficult journey. This journey has been long: much longer than we ever imagined it would be, and it's not over. It has drained us emotionally and financially. Since we were both off work for an entire year, we are struggling to make ends meet. We have had some extremely generous people (including our families) supporting us (financially) throughout this journey. We are so thankful for everything that everyone has done for us. We feel blessed to have had great support. But . . . we once again have to swallow our pride and ask for help. This is something I have been putting off since we came home. We thought that once Patrick got back to work our finances would work themselves out. Sadly, that has not been the case. We are struggling to pay our bills and have enough money to put gas in our cars for work and doctors visits and still have enough to buy groceries. I didn't think we would miss my income so much, but we really do. Since we have been unable to get SSI benefits for Jordan, we have only one income for three people. We still have tons of doctors bills and everyday expenses that everyone has, but we also have to think about our return trip to Duke in a few months. We did not want to have to ask anyone for anything, and I feel terrible even asking, but if anyone can do a fundraiser to help us out, we would greatly appreciate it. We still have the account for Jordan at Hickory Point Bank & Trust here in Decatur. The address is above. We have also posted a list here of items that we can use for Jordan. We thank everyone so much for their support and humbly ask for prayers for our financial needs. Please know that we would not ask for a dime if we didn't need it.

NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Thursday, February 19, 2004 10:21 AM CST

Hello to all-
The weather is starting to warm up a bit here, so we have been taking Jordan on a few short walks in the neighborhood. I think he likes getting out and about. We also enjoyed having the week off from a doctor's visit. Dr. Brandt felt comfortable not seeing Jordan this week, so we just lowered his steroids and will go see him next week. We are still trying to get him off these nasty medications. We hope that in another month or two he will be off the steroids completely. Right now we are concerned that Jordan is not growing. The steroids can prevent him from growing, so he needs to get off them so he can catch up. Our other concern is that he is not eating enough. We talked to our speech therapist and she has suggested that we consult with a pediatric diatician/nutritionalist. We hope she is able to give us some ideas on feedings with Jordan. Other than that, he is coming right along with his therapies. He has been uncooperative with his physical therapist this week. He has wanted Mommy instead of Lindy. He cries when she tries to come near him. I guess he knows she is going to put him to work. Hopefully next week he will do better. As for me, I am taking a sign language class at SAIL (Soyland Access to Independent Living) the class is free except for the book, but the book is used for the intermediate and advanced courses as well (which are also free). The class meets every Wednesday night for one hour for nine weeks. I have already learned the alphabet, how to count from 0-10, and about 20 one-word signs such as happy, sad, sleepy, angry, interesting, beautiful, etc. I am really excited about learning how to sign. Not only will it help me communicate with Jordan, but I want to (eventually) get my Master's Degree is Special Education. The class is going to be difficult because there is tons to learn in a short time, but I think I am up to the challenge. Well, I guess I should go, but I wanted to thank Julia and Wilbur Hill (Angel ^Reese's^ Nanna & Pawpaw) for the gift card. They sent us a gift card in honor of ^Reese's^ Birthday. We also want to thank Alison Stinson for the letter and money. Thank you for thinking of our family. Thank you to everyone who still comes by to check up on Jordan and sign the guestbook. Your support means so much to us! Patrick's Birthday is next Thursday (26th), so make sure you stop by and wish him a happy 28th!

Love,
Carrie

On a more personal note:
For those of you who have been following our story for quite some time and even for the newcomers, you know that it has been a difficult journey. This journey has been long: much longer than we ever imagined it would be, and it's not over. It has drained us emotionally and financially. Since we were both off work for an entire year, we are struggling to make ends meet. We have had some extremely generous people (including our families) supporting us (financially) throughout this journey. We are so thankful for everything that everyone has done for us. We feel blessed to have had great support. But . . . we once again have to swallow our pride and ask for help. This is something I have been putting off since we came home. We thought that once Patrick got back to work our finances would work themselves out. Sadly, that has not been the case. We are struggling to pay our bills and have enough money to put gas in our cars for work and doctors visits and still have enough to buy groceries. I didn't think we would miss my income so much, but we really do. Since we have been unable to get SSI benefits for Jordan, we have only one income for three people. We still have tons of doctors bills and everyday expenses that everyone has, but we also have to think about our return trip to Duke in a few months. We did not want to have to ask anyone for anything, and I feel terrible even asking, but if anyone can do a fundraiser to help us out, we would greatly appreciate it. We still have the account for Jordan at Hickory Point Bank & Trust here in Decatur. The address is above. We have also posted a list here of items that we can use for Jordan. We thank everyone so much for their support and humbly ask for prayers for our financial needs. Please know that we would not ask for a dime if we didn't need it.

NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Wednesday, February 11, 2004 8:08 PM CST

I added more pictures from the bath!

Sorry I didn't update after the clinic visit yesterday. Things have been a little hectic around here. I have been doing a little subbing at St. Teresa, and I love being back there. The kids and teachers have made me feel so welcome, and I realize how much I miss teaching.

On to medical news. Jordan did well when they accessed his port for the first time yesterday. I did ok too. It wasn't as bad as I thought it would be. His nurse, Melanie showed me how to do it so that I can access him at home if I have to. Hopefully I'll never have need to. Jordan's counts have fully recovered from the infection. His hemoglobin is back up to 12 and his platelets are over 300K. Things are certainly looking up. We pray that they continue going in the right direction. The port placement was a huge step toward getting off medications and making a full recovery. Dr. Brandt also lowered Jordan's steroids to 4MG twice a day and we will lower them to 3 MG twice a day next Tuesday as long as Jordan doesn't act funny or break out in another rash. We pray that we can continue weaning the steroids so that we can get him off some of these other medications too. Jordan is doing so well that Dr. Brandt doesn't even want to see him next week. We are so excited. This will be the first time since before transplant that Jordan has gone two weeks without seeing a doctor at all. I will be a little nervous, but this is such a huge step. I can't help but be happy with his progress.

Thank you to April and Dave Kostenski for the letter and money. We truly appreciate you guys thinking of us. We also want to thank Diana Dial for the note and money. Diana, you have been such a huge support for me throughout this entire journey. I thank you so much for your friendship. It means more than you know. Thank you to everyone who is e-mailing and signing the guestbook. Your support helps us get through each day.
Love,
Carrie

On a more personal note:
For those of you who have been following our story for quite some time and even for the newcomers, you know that it has been a difficult journey. This journey has been long: much longer than we ever imagined it would be, and it's not over. It has drained us emotionally and financially. Since we were both off work for an entire year, we are struggling to make ends meet. We have had some extremely generous people (including our families) supporting us (financially) throughout this journey. We are so thankful for everything that everyone has done for us. We feel blessed to have had great support. But . . . we once again have to swallow our pride and ask for help. This is something I have been putting off since we came home. We thought that once Patrick got back to work our finances would work themselves out. Sadly, that has not been the case. We are struggling to pay our bills and have enough money to put gas in our cars for work and doctors visits and still have enough to buy groceries. I didn't think we would miss my income so much, but we really do. Since we have been unable to get SSI benefits for Jordan, we have only one income for three people. We still have tons of doctors bills and everyday expenses that everyone has, but we also have to think about our return trip to Duke in a few months. We did not want to have to ask anyone for anything, and I feel terrible even asking, but if anyone can do a fundraiser to help us out, we would greatly appreciate it. We still have the account for Jordan at Hickory Point Bank & Trust here in Decatur. The address is above. We have also posted a list here of items that we can use for Jordan. We thank everyone so much for their support and humbly ask for prayers for our financial needs. Please know that we would not ask for a dime if we didn't need it.

NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Sunday, February 8, 2004 8:44 PM CST

I know that you have all been waiting for the bubble bath pictures. IT WAS GREAT! We have so many great pictures, that it was really hard for me to decide which ones to post. I will try to make a collage so that you can see them all, but until then I wanted you to see some of our favorites. Jordan was having so much fun in the bubbles, that Patrick had to join him, with all of his clothes on. It was so funny. I hope you enjoy the pictures as much as we enjoyed taking them. Splashing and laughing filled our bathroom this afternoon and fun was had by all.

Thank you Aunt Shawn Coble for the card and gift. We really appreciate your generosity so much. We love and miss you. Also, thank you to Holley Sharp for the letter and gift. Your letter touched my heart and I thank you for it. Holley, don't ever be afraid to say the wrong thing. Knowing that you are thinking of us says more than you know.

Love,
Carrie, Patrick, & Jordan

Wednesday, February 4, 2004 4:33 PM CST

Surgery went well and Jordan is home and doing great. His central line came out with no problems, and the port was placed under the skin. They had some difficulties placing the port, but were able to use a needle under the collarbone technique successfully. Because of the difficulties they kept him in the hospital until yesterday evening. By the time we came home Jordan seemed pretty uncomfortable, but tylenol really helped and he slept well last night. He is going to be sore for a few days, but then he should be back to his normal routine. He is able to take a bubble bath on Sunday, so we will be updating with new pictures then. Thank you all for your continued support and the many prayers. I know many of you were organizing prayer chains for Jordan and we appreciate all of the well wishes.
Love,
Carrie

On a more personal note:
For those of you who have been following our story for quite some time and even for the newcomers, you know that it has been a difficult journey. This journey has been long: much longer than we ever imagined it would be, and it's not over. It has drained us emotionally and financially. Since we were both off work for an entire year, we are struggling to make ends meet. We have had some extremely generous people (including our families) supporting us (financially) throughout this journey. We are so thankful for everything that everyone has done for us. We feel blessed to have had great support. But . . . we once again have to swallow our pride and ask for help. This is something I have been putting off since we came home. We thought that once Patrick got back to work our finances would work themselves out. Sadly, that has not been the case. We are struggling to pay our bills and have enough money to put gas in our cars for work and doctors visits and still have enough to buy groceries. I didn't think we would miss my income so much, but we really do. Since we have been unable to get SSI benefits for Jordan, we have only one income for three people. We still have tons of doctors bills and everyday expenses that everyone has, but we also have to think about our return trip to Duke in a few months. We did not want to have to ask anyone for anything, and I feel terrible even asking, but if anyone can do a fundraiser to help us out, we would greatly appreciate it. We still have the account for Jordan at Hickory Point Bank & Trust here in Decatur. The address is above. We have also posted a list here of items that we can use for Jordan. We thank everyone so much for their support and humbly ask for prayers for our financial needs. Please know that we would not ask for a dime if we didn't need it.

NEEDS:
*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Friday, January 30, 2004 5:33 PM CST

****QUICK UPDATE Monday, Feb. 2nd****
Jordan's surgery will be tomorrow morning at 10:00am. Hopefully he will be home tomorrow afternoon. The surgery should only take about an hour. Pray that everything goes well. I also want to thank Suzanne & ron Little for the gift certificate to Bennigans. We will certainly enjoy a night out together. Thank you to John Duplessis Jr. (one of our angel flight pilots) for the nice letter and donation. We appreciate it so much. We hope to fly with you again!
Love,
Carrie


Jordan is acting as if he is feeling better, but his schudule is off right now. Since he was in patient, he is not taking naps during the day, which makes for an unpleasant evening. From about 4:30pm-8:30 or 9:00, my sweet boy turns into a crab. He still gives smiles, but his attention span is very short and so is his temper. It is interesting trying to keep him happy enough not to wake daddy, who is working midnights and sleeping most of the day. Hopefully when he gets his lines removed and the steroids are lowered again, this will improve. At least he is sleeping well at night. That makes his bad moods much more tolerable. He is also eating a little better. I think maybe the steroids are kicking in.

Jordan's counts looked great today, so we are set to remove his lines and place his port Tuesday morning. His hemoglobin is still creeping up (9.9) and his platelets are holding at over 250K. It seems it was the infection causing the problems. Please keep Jordan in your thoughts and prayers Tuesday. We are a little nervous about him being put to sleep.

On a more personal note:
For those of you who have been following our story for quite some time and even for the newcomers, you know that it has been a difficult journey. This journey has been long: much longer than we ever imagined it would be, and it's not over. It has drained us emotionally and financially. Since we were both off work for an entire year, we are struggling to make ends meet. We have had some extremely generous people (including our families) supporting us (financially) throughout this journey. We are so thankful for everything that everyone has done for us. We feel blessed to have had great support. But . . . we once again have to swallow our pride and ask for help. This is something I have been putting off since we came home. We thought that once Patrick got back to work our finances would work themselves out. Sadly, that has not been the case. We are struggling to pay our bills and have enough money to put gas in our cars for work and doctors visits and still have enough to buy groceries. I didn't think we would miss my income so much, but we really do. Since we have been unable to get SSI benefits for Jordan, we have only one income for three people. We still have tons of doctors bills and everyday expenses that everyone has, but we also have to think about our return trip to Duke in a few months. We did not want to have to ask anyone for anything, and I feel terrible even asking, but if anyone can do a fundraiser to help us out, we would greatly appreciate it. We still have the account for Jordan at Hickory Point Bank & Trust here in Decatur. The address is above. We have also posted a list here of items that we can use for Jordan. We thank everyone so much for their support and humbly ask for prayers for our financial needs. Please know that we would not ask for a dime if we didn't need it.
Love,
Carrie

NEEDS:

*Size 3 diapers (Jordan is 19 pounds)
*Baby Wipes
*Dreft stain remover
*All or other liquid laundry detergent (the powder irritates Jordan's skin)
*Gift cards (Kroger's, Wal-mart, or Restaurants)
*Clorox or lysol disenfecting wipes
*Wet one's wipes
*Monetary donations can be made to Jordan's benefit fund (Address above) or sent to us at the address below.
***PRAYERS

Thank you again!
Love,
Carrie, Patrick, & Jordan

Thursday, January 29, 2004 3:56 PM CST

We will finally be getting rid of Jordan's lines on Tuesday. He will have his lines removed and his port placed at the same time. We are going to finish his antibiotics on Friday night and then we will run a few doses of antibiotics through the new port on Tuesday. Jordan will not have to be in the hospital over night unless there are any complications. We are praying that he will be home safe and sound Tuesday night. We are a little nervous that Jordan will be put to sleep and intubated for the surgery. As MPS parents know it is a little stressful any time our children get put to sleep. Children with MPS can have odd reactions to the medications. Also, Jordan has not been intubated since his trip to the PICU and we are just a little nervous with the whole process. Please keep Jordan in your thoughts and prayers as he undergoes this surgery on Tuesday. We will let you know how it went when we get home Tuesday evening. Hopefully we will be posting pictures of a big bubble bath later next week.
Love,
Carrie

Monday, January 26, 2004 6:07 PM CST

YEAH! We are home. We brought Jordan home yesterday afternoon. His hemoglobin is up a little and Dr. Brandt felt comfortable waiting until tomorrow to draw labs again. Since we can do everything at home that they were doing in the hospital he let us go home. I have to say that we all slept so much better last night, and Jordan and Mom took a two hour nap today. I guess we needed it after so many interruptions in the hospital. Jordan has the same infection that he was hospitalized for in November. Since Jordan's counts are going back up since he has been on the antibiotics, we think that his low counts were due to stress from the infection. We will check his counts again tomorrow at Dr. Brandt's office. If they look good (hemoglobin 8.0 or above) we will schedule an appointment to get those darned lines removed. Since Jordan has been on the antibiotics for a week, he will probably have his lines removed and his port placed all in the same surgery. Thank you to everyone who has left encouraging guest book entries. This past week has been a stressful one and the entries and phone calls really help. Thank you all so much. We love you all.
Love,
Carrie

Thursday, January 22, 2004 5:00 PM CST

Jordan is still in the hospital, but feeling better. His cultures came back positive for the same infection that he had in November, but this time his hemoglobin is really dropping. Hopefully this is due to the infection and not hemolytic anemia as we thought earlier this week. Right now he is on a higher dose of steroids and his hemoglobin is stable, but low. He is at 6.4 right now. We are giving him IV antibiotics and praying that his hemoglobin comes up on its own. Because it will be so hard to find blood for him here, we are going to wait on transfusing him. Jordan will stay in the hospital until his hemoglobin goes above 8.0. We are also going to pull out his central lines when his hemoglobin goes back up. Once his lines are removed and the infection is clear, we will schedule an appointment for an infusaport to be placed underneath his skin. We are happy that his lines are coming out no matter what. He has had these lines since he was four weeks old and there is a bigger risk of infection with the lines than with the port. Also, Jordan will finally be able to have that bubble bath we have been talking about. His fever and vomitting are gone and his heart rate is back down to an acceptable rate. Hopefully the steroids and antibiotics will kick in and his hemoglobin will start going back up quickly. Jordan will probably be in the hospital until next week, but we will let you know more information when we know more. Please keep him in your thoughts and prayers.
Love,
Carrie

Tuesday, January 20, 2004 4:21 PM CST

**********Update**********
12:30 am 01/22/04
Jordan started throwing up and running a fever last night as soon as Carrie got done updating. We took him straight to a room to be admitted at St. Johns hospital He was dehydrated and his heart rate was up to 200 . They drew labs again and his hemoglobin was down to 6.9. He got some fluids and antibiotics and his hemoglobin is still holding at 7. He is feeling better but his blood cultures are still negative for infection. We still are not sure exactly what is wrong with him. We are still hoping for a central line infection. I will let everyone know when we know more. Oh and by the way if it isn't enough already A very good friend and co-worker of mine passed away unexpectedly last night. Bill Alder was a great guy who always had a funny story and was one of those people that when he asked you how you were he really wanted to hear. Bill you will be sorely missed and the world will be a little cloudier without you.
Patrick



What a day . . .

Jordan has not been eating very well and has been fussy the last few days. We found out why today. His hemoglobin is down to 9.3. His retic count is very high at 15.79 and his bilirubin and liver functions are also elevated. Long story short: He is hemolyzing his red blood cells again. I've cried so much today that I can't cry anymore. This is the exact thing that sent Jordan to the PICU almost 8 months ago. So, what are we going to do about it? PRAY and up his steroids. The same steroids that are causing him to gain too much weight in the chest and face, yet stunt his growth. The steroids that have caused two broken bones, hydrocephalis, muscle atrophy, and an enlarged heart muscle. The Steroids that have caused my baby to be on oxygen for the past 8 months and prevented him from walking or even crawling. The steroids that I hate! They are causing so much damage, yet I have to be grateful for them because they are the only thing that works for Jordan's form of Anemia. Hopefully with the increased steroid dose Jordan's appetite will improve. I guess that's one good thing about the increased dosage.

Ok, the insurance company is apparently working everything out and is going to pay the $200,000 instead of making us pay it. But I had another problem today. I had to call Alliance One (a collection agency) because they had gotten a claim on us because of this whole misunderstanding with the insurance company. I called to talk to a customer service rep to explain the situation and get some information so that I could get the claim paid by our insurance. The woman at Alliance One told me, "Quit being a loser and pay the bill." I said, "that's what I'm trying to do if you would just do your job and give me the information I'm requesting." She replied, "this is a collection agency, and that's not my job. Your bill is $761.54. Pay your bill Carrie!" and hung up the phone. I was blown away by her lack of professionalism and poor attitude. I have a few choice words that I called her when I hung up the phone, but I won't put them here. So, I called back and spoke to another rep. who was extremely nice and helpful. She gave me the information I needed and then offered to transfer me to her supervisor so that I could file a report on AMY (AKA evil customer service rep.) Somehow we got cut off and when I called again, guess who I got again? AMY . . . talk about a bad luck day. I asked to speak to a supervisor, but didn't tell her who I was. She said, "All the supervisors are out of the building until Friday." I said, "is this AMY?" She said, "Yes Carrie, Pay your bill" and hung up again. By this time I was fuming. I called again and spoke with a different rep. who was happy to transfer me to a supervisor and the supervisor informed me that it is Amy's job to give me that information and that they do not normally treat people this way. She filed a report for me and noted my account. I doubt anything will come of it, but dang it I was mad. Anyway, Duke is supposed to resubmit the claims to the insurance company (the correct way this time), and they should be approved and this will all be a mute point. Now I know why people don't call collection agency's when they are turned over. They just ignore them and refuse to pay the bill. I guess I learned my lesson. So much for trying to work with someone to get them their money huh! I guess I should just claim that in the bankrupcy that we are inevitably going to have to file. I'm sorry this update wasn't any more uplifting than the last one, but I'm not in the mood to sugar coat anything.
Love,
Carrie

Thursday, January 15, 2004 12:23 AM CST

I am getting so bad at updating. I appologize, but we are so busy with all of Jordan's therapies and everything else that the only time I can update is if he is sleeping. Even then, I usually find something else to do with a few minutes to myself. Please forgive me for not updating more, but please know that no news is always good news.

Jordan's rash is really clearing up, but the creams are really drying out his skin. He is starting to look like a lizard with all of his skin pealing. I guess it's a small price to pay to get rid of the yucky rash. Hopefully it will be gone by next week and we can start lowering the steroids again. We will probably lower them more slowly now, but at least we will be able to lower them again. Jordan is doing well except for eating. We are concerned that he has not grown or gained much weight since August. Dr. Brandt agreed that Jordan is failing to thrive. Although this is due to transplant, it is still a concern. We have decided to put him on Pediasure instead of the formula. Pediasure has more calories and is made for a child over 1 year old. We hope this helps him gain weight and strength, but so far he is still not eating very much.

Things around here are stressfull. We thought that things would get so much easier after we got home, but the real world is finally catching up to us. Weekly clinic visits, endless meetings for services for Jordan, therapy sessions, and now insurance -- it just gets so overwhelming. Our insurance company screwed up and is trying to make us pay back everything that they covered for Jordan from August until October of last year. We are talking over $200,000 worth of medications, hospital visits, and home services. Somehow they have a report saying that Patrick went back to the railroad in May and then took personal leave again in August. That's impossible since we weren't even in the state at that time. We are currently trying to work everything out, but it is so frustrating. They also raised our premium by $30 a month. I know that doesn't sound like much, but when you are on a tight budget it is. We are struggling to make ends meet financially. Since I haven't been able to return to work, it's put a strain on us. I won't be able to return to my job until next school year. I have told the school I am willing to do some subbing, but so far haven't been called for anything. I am also helping out Antonia Dintrono at Felice's, but that's only when they need extra help. We are stressed, and being broke sucks. We don't go many places or do many things. Our Friday and Saturday nights consist of renting a movie at blockbuster and going to bed early. Please don't misunderstand me, I wouldn't trade any of this for Jordan. He is our whole world and as long as he is healthy, we will be fine. It just sucks when Patrick is working his but off, and we can barely buy groceries. OK, sorry enough venting. I'm just sick of being poor and not being able to do anything about it.

We have to look on the bright side of things. We have a child that is doing extremely well. He is so happy. He smiles and laughs all the time. Although we are a little worried about his eating, he is pretty healthy. Hopefully he will come around and start eating like his Daddy. Thank you all for being so supportive and caring. On days like today, when everything seems overwhelming, it helps to know there are people who will listen to my ranting and not judge me for it. Tomorrow will be better and hopefully the next update won't be so depressing.
Love,
Carrie

Wednesday, January 7, 2004 11:37 AM CST

****I just wanted to add this information for any of the parents that read this site that have children with Hunters. A friend e-mailed this to me today.

"In the next 30 days Transkaryotic Therapies (TKT) will be closing
recruitment of the clinical trial of enzyme replacement therapy for MPS II, Hunter syndrome. This will be the last opportunity in the foreseeable future for individuals with MPS II
to participate in a clinical trial of enzyme replacement therapy. There
are several sites in the US where an individual may be evaluated for enrollment. The sites include UNC, Oakland Children's, Houston and an infusion site in St. Louis. Beyond the 12 months of the trial there is a commitment to continue to provide enzyme to individuals in an extension trial. We have been asked by TKT to share this information with you and hope you will share it with other families. If you are interested in participating in the clinical trial, please contact Leanne Torrie at ltorrie@tktx.com or call her at 617 613 4499 for specific information. information about the clinical trial can be found at www.clinicaltrials.gov under MPSII. I am also available to
answer questions by phone or e-mail, 207-947-1445, edmps@adelphia.net

Barbara Wedehase
Executive Director"

I hope this can help some other families out there!



Day 391

I first want to congratulate my friend Amy Fandel and her husband Joe on their good news. Amy just found out she is pregnant! I am so happy for you guys!

On to Jordan. He is doing so awesome. We took him to clinic yesterday. We have yet to make it an entire two weeks without going in on our week off. It's always something, but at least it hasn't been anything major. Jordan still had a pretty bad rash after two weeks of using creams, and we ruled out a virus. Dr. Brandt and Dr. Kurtzberg are in agreement that this is probably Graff Vs. Host disease of the skin. We are trying two different creams, and they seem to be doing the trick. After using them yesterday evening and this morning, we are already seeing improvements in the rash. Thank you God. We did not want to raise his steroids again! We are hoping that the new creams will be enough, and in a few weeks we will be able to wean his steroids again. Once this rash clears up we will set a date to remove his central lines. We just can't wait until he can take a real bath.

Despite this rash, Jordan is feeling really good. He is happy, and his labs are looking wonderful. His hemoglobin is holding right at 12.9 and his platelets at 319K. His retic count is also a little lower than it has been, which means he isn't breaking down his red blood cells as much. I guess those antibodies are no longer a problem for him, or he is getting rid of them. Either way, we are happy with the result.

Jordan is trying to talk more and more everyday. He is now saying "DADA", "Buh" everything, "Zee Ba," and will try to repeat anything we say, but we can't always make out the words. Sometimes he amazes us with a clear repetition of what we say, and he laughs at our astonishment. He is waving bye bye and hello but uses a closed fist (for those of you who know sign language, he does the sign for yes). He is also rolling from front to back and back to front all over the place. We normally put him on a blanket to play, but now he is all over my floor. I guess I have to vaccumn a little bit more often now. I am most excited about him bearing small amounts of weight in his legs. If I stand him in my lap, he will push against me with his feet and legs. This is something he has not been able to do since last March. We are so happy with his progress. It seems like he has done so much in just the last week. We can't wait to see what he does as they continue to lower his steroids. We are hoping that by becoming more mobile, he will strengthen his lungs and get off this darned oxygen. He is doing better with it. When he pulls off his canula, he can go for several minutes without huge changes in his oxygenation. He is also staying around 85-86 without the oxygen. This tells us that his lungs are in fact getting stronger. Before, he would immediately drop to the low 80s and then into the 70s, which is not good! I can't begin to explain how excited we are with all of this good news.
We are crossing our fingers that this is only the begining of great things to come. My mother and I have a running joke about things that happen to us. Everytime one of us says, "you know, such and such has never happened," it happens! Two days before Jordan had his central line infection, I sat with my Mom discussing how we needed to remove Jordan's central lines soon because he has "never had an infection, and I don't want him to get one." Of course, two days later he woke up with a 103 degree temperature. So . . . now with this new rash my Mother and I are saying, "you know, Jordan has never been 100onor cells" It is a posibility that Jordan is growing more donor cells because Dr. K. did say he may eventually become 100but we'll see what happens. We will not hold our breath. We are happy with what he has, but if it is God's will to make him 100who am I to argue?
Love,
Carrie

Sunday, January 4, 2004 10:15 AM CST

Day + 388
Happy New Year to all!

I hope everyone had happy and safe holidays. Patrick and I enjoyed spending time with our families at home with Jordan. My Mom & Dad came to stay on New Year's Eve and Patrick and I were able to go celebrate the New Year with great friends! Spence, Todd, Larry, Susie, Scott, & Lori, thank you so much for a great evening!

Jordan is continuing to do well. He is starting to babble all the time. He is trying to repeat everything we say. Even if his version is not exactly the same as ours, we get so excited with his endless efforts. He picked up his toy Zebra the other day and just kept repeating "Zeee Ba." We are so impressed that this is his first real word. He is now immitating the Brett Favre Bobble Head doll by shaking his head all over when he sees it or if we say "bobble head." He is giving tons of smiles and lots of kisses on demand, especially when he does something he's not supposed to do. His favorite thing is to pull off his oxygen canula and wave it around while shaking his head no. Then when we tell him no and try to put it back on him, he gives kisses or shakes his head no again and laughs. I can tell we are going to have a real problem with discipline later, since he already ignores us when we tell him "no."

As far as medical issues, Jordan is doing well. He still has a little bit of a rash, which we are now thinking is Graff Vs. Host disease. Dr. Brandt believes it is only GvH of the skin, which is more annoying than dangerous. We still need to keep it under control so that it doesn't develop into something dangerous. We stopped the creams on New Year's day, but had to restart them (just on his arms) yesterday. His arms are really the only place that is staying rashy. Hopefully this will clear up soon and he will be back to his pale self, much like his mother. He is starting to push against me with his legs in an effort to bear weight, so we are really excited about that. Hopefully this means that the vitamins are working and his bone fractures are healing. He acts as if his legs were never broken. He moves them all over. We are so happy to see him pain free. He is even enjoying his physical and occupational therapies. We are having a meeting on Friday with a developmental therapist to evaluate Jordan for services. Our thoughts are if the state wants to provide services for our son, why not let them. The therapies can only help him get stronger faster.

Thank you to everyone for the many christmas cards and letters. We enjoyed seeing pictures and hearing from so many of you. Thank you to Robin Boger for the book, phone card, and gift certificate. Thank you to Jennifer Ardner for the clothing and picture. Thank you to Mr. Hylbert & his wife for the card & for adding us to the prayer list at church. Thank you to all for the many, many extra blessings and well wishes. It means so much to see so much support from so many wonderful people. Don't forget to sign the guestbook and let us know that you checked up on us. We love reading the entries.
Love,
Carrie

Wednesday, December 24, 2003 8:19 AM CST

***EXTRA UPDATE ON CHRISTMAS DAY!!***
My sister Angie & her husband Luke are expecting a baby August 1st! CONGRATULATIONS! What a wonderful Christmas present!


Day 377

Merry Christmas to all!

We are enjoying having Jordan home for Christmas this year. We were afraid he was going to spend it at the doctor's office again, but thankfully Jordan decided to be a good boy. He woke up last Wednesday with a small rash under his chin, which we thought was a heat rash. On Friday it had gotten a little worse and we tried using different powder and cream. On Saturday the rash had worsened and spread all over his body. We were afraid that he had developed Graff vs. Host of the skin so we called Dr. Brandt to see how he wanted to treat it. Dr. Brandt hated to have Jordan come in to the hospital if the trip was not needed, so we decided to try to treat it at home. We tried protopic cream on Saturday, and Sunday the rash had not changed. I called Dr. Brandt again and he decided to try triamcinilone (a strong hydrocortisone cream). It seems to have helped. Instead of skipping our Tuesday visit this week, we went ahead and visited Dr. Brandt yesterday. He believes that Jordan's rash is not GvH of the skin. He believes that it looks more like a rash one gets from a virus. Since Jordan does not have a fever or any other symptoms, we are just going to treat it as a rash and nothing more. We are thankful that it was not something more serious. Jordan's labs looked great yesterday and we are down to drawing labs once a week. This is a huge feat for Jordan. We haven't been able to do that since March!
We hope everyone is enjoying happy holidays with friends and family. We are spending this evening at my mom & Dad's for the famous Christmas Eve prime rib dinner and gift exchange. Then we will open our gifts at home tomorrow morning with Jordan. Tomorrow early afternoon we will go see Patrick's family to open gifts and eat a big Christmas dinner. We are so thankful to be able to see many of our friends and family this Christmas season, especially because we were unable to see many of them last year. Unfortunately Jordan will still not be able to join in some of the festivities. With the flu season being so bad, we are not going to risk exposing him to so many different people. He is too young to know he is missing anything and it will be that much greater for him next year when he spends his first real Christmas with everyone.
I am going to leave you all with well wishes for the holidays and new year. Please be safe and enjoy your loved ones.
Love,
Carrie, Patrick, & Jordan

Wednesday, December 17, 2003 10:27 AM CST

Day 370 NEW CHRISTMAS PICTURES!

We had a long, but good clinic day yesterday. Dr. Brandt was happy to hear all the good test results that we got from Duke. Dr. Brandt is planning on removing Jordan's lines and placing a port after the first of the year. With the holiday's coming, it would be difficult to schedule a surgery, and with the flu season being so bad this year, he wants Jordan to stay away from the hospital if possible. We even have a pass for next week. We don't have to go in to see Dr. Brandt at all (unless something happens). We will go ahead and draw labs on Friday and Tuesday, but as long as they look good, we won't go in on Tuesday and we will start drawing labs once a week. Dr. Brandt and Dr. K. are really impressed with Jordan's progress. As long as we can keep him healthy and infection free we are going to wean those steroids and get him back to where a normal 13 month old child should be. We are going to keep his steroid dose at 2mg twice a day for three weeks, and then wean him to 1 mg twice a day. Then we will switch him to orapred (oral steroids) and remove his central lines. Then . . . Bubble bath here we come. I can't wait to put Jordan in a real bath! He has never had a real bath. He has only had sponge baths. Before transplant he still had his cord so we couldn't give him a real bath, and at 4 weeks old he had his lines placed so he hasn't yet experienced the joys of splashing and playing in the bathtub. I can't wait! I think I will be more excited than him.

Jordan's left leg seems to be doing better. He is moving it around like it has never been broken (despite two fractures in the last 3 months). Hopefully the vitamins will help to heal the bones and get them stronger. He has the bones of an elderly person with osteoperosis (sp?) We are trying to get them strong again. We are also stopping the vioxx. Since he acts as if he has no pain and the vioxx is upseting his stomach, we decided to stop it unless he acts as though he is hurting. The swelling in his leg has gone down considerably, which is probably helping the pain subside.

His counts are holding steady with his hemoglobin at 11.9 and platelets at 227K. We are happy with his progress and hope that he continues on the right path. Thank you for all your prayers and well wishes. They are working!

Some of you have called, e-mailed, or written asking what we want or need for Christmas. We really appreciate you all being so generous and caring. If You want to get something for Jordan, he is wearing 12-18 month clothing. He loves animals, anything that makes noise, and pop-up books. Patrick and I don't need anything, but we are asking that if you want to get us a gift please send gift cards for wal-mart, Krogers, etc. We can use those to help buy groceries, diapers, formula, and whatever Jordan needs. We already got our Christmas wish: Jordan is with us and relatively healthy. We are thankful for the gift we have in him and need nothing more (except maybe winning the lottery). Again, thank you for all your love and support we truly appreciate and love all of you! Merry Christmas!

Love,
Carrie

Saturday, December 13, 2003 10:44 AM CST

ONE YEAR POST TRANSPLANT! Happy Re-birthday Jordan.

One year ago today (on Friday the 13th) Jordan was given a chance at a normal, healthy life. Although the day was filled with Friday the 13th "glitches" and the cord blood took a while to get flowing, we made it through the day with a new chance at life. A year later we are still having a few "glitches," but they are getting better. This year has been long and hard but every time we get test results, we see how much it is worth it. I know you all want to hear about the test results and our trip to Durham. I will get to that in just a minute I have a few thank yous to add first.

Thank you to our life line pilots! Without the support of this wonderful organization we would not have been able to travel to Durham for Jordan's medical needs. Thank you to Bob Zook who (after a 2 1/2 hour fog delay) was able to fly us from Decatur, IL to Elizabethtown, KY. In KY another pilot, John Duplessis, flew us to Greensboro, NC. We picked up our rental car from there and drove to Durham. It was about a 45 minute drive, but it was better than driving from KY. That's a whole different story that maybe I will tell later. Anyway, thank you to our wonderful pilots! We also want to thank Angel flights East for our return flights home! Because of a terrible head wind the flights took twice as long as we anticipated, but our pilots made the flights as comfortable as possible. We appreciate the volunteers so much! Bill Dobson flew us from Durham, NC to Bristol, TN. It is such a small world. Mr. Dobson is a professor at Apalachian state, where my brother in law (Michael Horton) attended. Mike, he knew who you were. I don't know if that counted against us or not, ha, ha! He gave Jordan a great little teddy bear and Jordan played with it the entire flight (well, until he fell asleep that is). We also want to thank Dave Hilbert and co-pilot, Donald Laferty for our second flight from Bristol, TN to Elizabethtown, KY. These two men were so happy to fly us and Donald even called yesterday to make sure we made it home ok. What sweet people! Our last (but certainly not least) thanks goes out to Mr. Ron Brewer from Decatur! He flew us from KY to Decatur. We even got to ride to the hanger where he keeps his plane. It was a neat experience and we thank all of our wonderful pilots!

I need to thank the Hendrick Marrow Program's "Pit Crew for Kids" especially Beth Jones & Emily Brown for the wonderful care package that was waiting for us here when we returned from Duke. You guys are so sweet and you do so much for the Bone marrow kids! Thank you again for your kindness and generosity!

OK . . . now the news you have all been waiting for!
We arrived in Durham Sunday night and were able to visit with Shawn Coble (Angel Reese's mommy) for a few hours. Shawn, it was so great to see you and I am glad that Jordan finally let you hold and love on him again! Monday morning we woke up and started all of the long hours of testing. His blood work was drawn and then we were off for an EEG. Then we went to have a crying vital capacity test to measure Jordan's lung capacity. He is only at 83but the doctors believe this will improve as Jordan becomes more mobile. We also had a vision and hearing screening. The hearing test was perfect! Yeah Jordan! The vision screening showed that Jordan has a strong astigmatism, which is not surprising given his mother's poor vision! The important thing is that his corneas and optic nerves are clear and normal. He will probably need glasses in a few years, but until then it is not necessary. We went down for a chest x-ray, and then finally returned to the hotel and relaxed for a few hours before going to bed. Jordan didn't really sleep very well the entire time we were there, so I caught up on my sleep yesterday and today, thus the late update!
Anyway, Tuesday was TERRIBLE! We had an 8:00 appointment at Chapel Hill for developmental testing. Jordan did great. He has shown vast improvements especially in speech. He is now saying "Zebra" or at least his version of Zebra and "Hi." He babbles Da, Da and ba, ba sometimes, but his official first word is Zebra. During our exam at Chapel Hill, the therapist grabbed Jordan by the left leg to check for range of motion. When she pulled his leg upward he let out the loudest scream and tears streamed down his face. We were sure she had re-injured his femur fracture. We went back to Duke and had x-rays of his hip and femur again and they were negative after a few more tests we headed back to the hotel. Jordan would cry any time we moved his left leg. We were so upset. The doctors thought that he was just sore and upset from the testing, so we gave him some tylenol and motrin, and decided to see how he was the next morning. Mike (Patrick's brother) and his Daughter Beth came over and brought us a wonderful seafood dinner. Thanks guys. We really needed that great meal after a long day. We were also able to see our good friends Cody & Eleasha in clinic as well as Jan, Jacamin, & Harmen! We missed all of you so much and were sorry we didn't get to visit more with you. We love you all.

Wednesday Jordan woke up in pain. Any time we touched his left leg he would wail in pain. Mom and I felt so bad. He had to have an MRI of te head and a chest CT that morning, so we asked to repeat x-rays of his left lower leg. The MRI & CT went fine, but the x-rays were bad. They showed that Jordan has extremely poor bone density. This means that his bones are very, very weak. It also showed that he has a small buckle fracture right above his left heal. My poor baby. The therapist fractured his tibia when she grabbed his leg to stretch him. I know she didn't do it on purpose, but my God. It is her job to handle him gently! We put Jordan on a high dose of Calcium and vitamin D to help strengthen his bones and Vioxx to help with pain and inflamation from the fracture. We can't cast it or anything. We just have to let it heal. He is feeling better and starting to move that leg again, but he can't do any physical therapy with his legs for two months. So much for walking or crawling by this summer. He can however bear weight on his leg if he does it himself. So, we need to put him in his walker often so that he will use those legs on his own. Hopefully with the Vioxx and vitamins his bones can gain strength and heal quickly. Wednesday night my friend Emily came to visit and I realized how much I missed being in North Carolina. She has been so supportive of us this entire year! Emily, thank you for everything. We love and miss you and Robert. Barbara, Jordan's physical therapist from Durham was also able to drop by for a few minutes to check up on Jordan. She was happy with his improvements, although he was really too tired to show off much.

Thursday morning we had our meeting with Dr. Kurtzberg. She is so impressed with Jordan's improvements over 3 months ago. His MRI of his brain still shows no signs of Hunters! YEAH JORDAN! The MRI has actually improved from 3 months ago. The chest CT still showed scattered atelectasis (collapses in the lungs). This is probably due to the steroid weight on top of a non mobile child. Dr. K. believes that when Jordan gets the steroid weight off and moves around more, the lungs will get stronger, heal themselves, and we can get him off the oxygen. Other than that, there is no disease or infection in his lungs. His echocardiogram (heart) still showed slight hypertrophy of his heart muscle (it's too big). Again, this is from the steroids and should heal itself as we wean him. It has improved slightly, but it will take time and no steroids to completely heal. His donor cells are still stable at around 30 We are hoping that eventually this will get higher, but Dr. K. feels this is more than enough to help Jordan. We don't have the results from his enzme and immune function tests and probably won't have them until the end of January or mid February. Until then we have become accustomed to waiting. Overall, Dr. K. was very pleased with Jordan's progress. He has made leaps and bounds since his last visit, and she hopes he will make many more between now and our next visit in 6 months. Because of all the complications Jordan has had in the past year, she wants to repeat many of these tests in six months instead of waiting a year. We are comfortable with that, so at the end of May or beginning of June we will make another trip to NC.

Now, our plan of action is lowering the steroids. He is on 2mg twice a day right now. In three weeks we will lower him to 1mg twice a day. Three weeks after that we will lower him to 1mg once a day. Three weeks after that we will take him off completely. Then we will have to check cortisol levels to see if he needs a maintenance dose until he starts producing cortisol on his own. If Jordan's counts look good on Tuesday, we will talk to Dr. Brandt about removing Jordan's central lines and placing a port. We will then only draw blood once a week. Four to six weeks after the port is placed, we can take Jordan off the Flagyl. Hopefully his appetite will get better since the Flagyl makes everything taste terrible. Other than that, we will just keep doing what we are doing and avoid public places until his immune system comes back.
We are limiting our visitors right now because of the cold and flu season, so please call us before coming by. We love to see people, but this time of year is just really bad for illness and Jordan is still extremely immune suppressed. If he caught this flu that is going around it would be "life threatning" in Dr. K's words. Hopefully after January or Feb. We will be able to accept more visitors. We will also have his immune function tests back by then and maybe some of his restrictions will be lifted. We will let you all know. Well, Jordan is waking from his nap, so I will talk to you all soon.
Love,
Carrie

Friday, December 5, 2003 4:50 PM CST

Saturday Update**** We are leaving Decatur at 8:00am tomorrow morning and will get into Durham around 2:00PM North Carolina time. Shawn- We will see you then. Jan, Jacamine, & Harmen-We will probably see you on Wednesday. Eleasha & Cody- I'm calling you when we get settled in. I will update when we return Thursday. We are not sure what time we will get home yet, but we will update either Thursday or Friday.
Thanks!

Day 357

It is hard to believe that a year ago today Jordan was having his lines placed and going into the hospital to begin 10 days of intense chemo. therapy for transplant. Little did we know of the journey that was ahead of us. I remember how scared yet full of hope we were. We were fearful because our son was a pioneer, the first to undergo an unrelated umbilical cord blood transplant for Hunter's syndrome. At only 6 weeks old he was experiencing so much. He was so tiny and innocent: we were afraid for his life. Yet, we were so hopeful for a treatment for this terrible disorder. A year later, we are in a much different situation, but our feelings are the same. We are scared about what the future holds for our son, but we are hopeful that this treatment will help him have a much better quality of life. We have learned so much over the past year. One of the most important lessons has been true love. Patrick and I have grown closer together and have a relationship that unfortunately many couples don't have. We cherish our families for all the support we have been given, and we adore our son. We appreciate every moment that we have with him (good or bad). We have also learned much patience, a lesson that Patrick learned much easier than I. Patience has never been my strong suit, but in the last year I have learned to put many things in God's hands and let them happen in his time. Although sometimes it's still a struggle to keep that attitude, we have learned to be thankful for the gift we have in Jordan and to cherish every moment that we have with him whether it be 2 years or 50.

We did get a flight through life line piolots, but we don't know all the details yet. I will pass them along when we get them. We are leaving on Sunday (sometime). Shawn, as soon as I know what time I will e-mail or call so that we can set up a time to get together. Eleasha & Cody, let us know when you want to meet. I will call when we know when we are going to get there.

Keep all the transplant kids and angels in your thoughts and prayers. Go hug and kiss your kids.
Love,
Carrie

Wednesday, December 3, 2003 1:50 PM CST

I know we have slacked off this week, but there isn't much to tell. Jordan has been doing great. He finished his antibiotics yesterday. He had a long clinic visit but his labs looked great and they lowered his steroids. Now we are just waiting to see if his infection will come back. Carrie and her Mom are making plans for their trip to Duke on Dec. 7th. I will be staying here to slave away at the railroad. Carrie's Grandmother is out of the hospital and doing well. Jordan is all giggles and smiles. That is really all I can think of. For future reference no news is always good news.
Patrick

Wednesday, December 3, 2003 1:50 PM CST

I know we have slacked off this week, but there isn't much to tell. Jordan has been doing great. He finished his antibiotics yesterday. He had a long clinic visit but his labs looked great and they lowered his steroids. Now we are just waiting to see if his infection will come back. Carrie and her Mom are making plans for their trip to Duke on Dec. 7th. I will be staying here to slave away at the railroad. Carrie's Grandmother is out of the hospital and doing well. Jordan is all giggles and smiles. That is really all I can think of. For future reference no news is always good news.
Patrick

Wednesday, November 26, 2003 11:18 AM CST

Day +348

I want my "True Friend" to know that if she/he is my true friend then he/she needs to take the time to call me or write me a letter and show me support instead of working so hard to leave nasty messages only to upset me, oh, and for your information "friend" Jordan's infection was not caused by exposure to anyone or anything. Bacteria normally found on everything can attack his body at any time, but thank you for being soooo concerned!

**********************************************************
I appologize to all my real friends for that, but I am so sick of this person judging every thing I do.
We heard back from the insurance company and they did get us a blood pressure machine, but it was for and adult's wrist and would not read correctly on Jordan, so they are getting us a new one today. Actually I have to go buy one from Walgreens and the infusion company is going to bring me a pediatric cuff that will work with that machine. it would have been so much easier had we known this 3 days ago. Anyway, at least we will now be able to monitor Jordan's Blood pressure and if Patrick and I have to deal with much more insurance crap, we can monitor ours as well. :)
I wanted to share an e-mail that Robin Tucker sent to me today. I was so touched by it's sweet message and I wanted all the wonderful Moms I know to be able to read it, especially those who have transplant children and angels.

A Baby asks GOD

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of you."
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."
Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach you how to pray."
"Who will protect me?"
God said, "Your angel will defend you even if it means risking it's life."
"But I will always be sad because I will not see you anymore."
God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."
"You will simply call her, "Mom."

Thanks again Robin!
Love,
Carrie

Tuesday, November 25, 2003 10:28 AM CST

Day 347

With a heavy heart we are mourning the loss of yet another transplant child. Tommy Bennett earned his angel wings at 3:10 this morning after a long battle through three transplants. He was a very strong and happy little boy and he is sadly missed.

BRRRRR . . . we miss warm North Carolina weather!
Jordan had his Dr. visit yesterday instead of today. Dr. Brandt didn't want Jordan to go too long without having his counts checked. His counts looked great since the increased dosage of steroids. His hemoglobin was back up to 11.2 and his platelets were at 122K. The only thing that Dr. Brandt was concerned with was his retic. count. It was up to 7.2, which means Jordan is producing lots of red blood cells. This means that his body is more than likely breaking them down quickly again. There is good news though. Last time Jordan was hemolizing his RBCs, his counts never increased with steroids. His counts would just decrease at a slower rate with increased steroids. This is good news for us because we have a better chance of Jordan's body being able to keep up with the antibodies. We hope that his counts just went down because his body got kicked in the but by the line infection.

Speaking of the infection . . . we are going to keep Jordan on the antibiotics until next Tuesday and then we will do blood cultures and pray that the line infection clears for good. Dr. Brandt said there is about a 50/50 chance that the infection will return. Well, we are all about 50/50 odds. Jordan had a 50/50 chance of having hunters. Maybe we should start playing the lotto. Anyway, we are going to keep his steroids up at 5mg twice a day until next week and then we will start the slow wean again. He will go to 4mg, then 3, etc. At least we are not starting back at 11mg like last time.

We are currently having a battle with the insurance company over a blood pressure machine. Since Jordan is off all his BP meds, but on an increased dose of steroids, we need to check his BP twice a day. The doctor thought it would be cheaper and easier to get us a machine at home which costs a little under $200.00. The insurance company doesn't know if that would be "cost effective." Ok, DUH! I suck at math and even I can tell you that it is cheaper to buy a $200.00 than pay $132.00 per visit (2 times a day) for a nurse to come out and check it. There is no question here. We will see what happens.

Love,
Carrie

Saturday, November 22, 2003 7:50 PM CST

Day 344

Sometimes I wonder if God really does give one more than she can handle. On Monday my grandmother (Jordan's grandma great) was admitted to the hospital with severe pain in her intestinal region. She had a partially blocked bowel and required surgery Wednesday. She is still in the hospital and doing better, but this has really taken a toll on her, and she is exhausted. Like I said, she is doing better, but needs your prayers for healing.
Tuesday morning Jordan woke up with a 102.5 temperature and scared us to death. It turns out that both of his lines are infected with a gram negative baccili (sp?) bacteria. We are not sure how the lines were infected, but nonetheless he has the infection. We are so frustrated that he has had these lines a year with no infection, and now that he is getting close to having them removed, he grows bacteria. We are treating the infection with ceftraxidine in both of his lines. Because of the liklihood that the infection will return after the antibiotics are finished, we were planning to remove the lines on Friday morning, but Jordan decided against it. He once again developed antibodies against his red blood cells. The first thought that jumped in my head was May 31st. I can't bear the thought of Jordan being put back on the ventilator. Although those thoughts were extremely overreactive, I had them nonetheless. The chances of Jordan breaking down cells that rapidly again are next to impossible without his spleen, but not completely impossible. We've learned all too well that when it comes to transplant anything is possible (good and bad).

With the infection, it's hard to tell, but we think the antibodies are breaking down his red blood cells. His hemoglobin is slowly dropping and is currently at 9.9. That is a far cry from the 13.0 that we have been seeing so often. The infection could have caused the antibodies to resurface, but no one knows for sure what causes them. The longest a child has gone with these antibodies is 2 years, but I pray Jordan gets rid of them quickly. The good news is that his platelets are starting to go up which is a good indication that the infection was causing their decline.

So, We were released from the hospital today and will treat Jordan with antibiotivs and more steroids. I am disappointed. I know that this needs to be done, but I am just now seeing him make huge strides in development and language. Just this past week he started babbling (da, da, da, da), letting out a happy squeal, and giving high fives. He is rolling on his side and sometimes over and bearing small amounts of weight in his legs. Is all of that going to disappear under pounds of steroid weight like it did before? The answer is probably, but once again he will gain the skills back eventually. We are planning to only raise the steroids until next Friday and then go back to our regular dose. If all goes well, it will be enough to ward off the antibodies and give his body time to heal from the infection. So once again we wait and see . . .

Please pray for Tommy Bennett. He is having some major problems with breathing and the doctors are unsure what is causing it. He is on the Bi-pap and they are talking about moving him to the PICU to put him on the vent. Please pray for him and his family (www.caringbridge.org/ca/bennettboys).

Also, say a special prayer for Felice and Antonia Dintrono. I use to work for them in Decatur. Their son was shot and killed this week. Antonia found out about it by watching the news. I can't imagine their heartache. I know their family is devestated by the loss of their son.

We will be returning to Duke in just a few short weeks. Hopefully Jordan will be doing better and the trip won't be so stressful. We will be staying at the Millennium Hotel if anyone wants to see us while we are there. We will be arriving on the morning of the 7th and leaving in the early afternoon on the 11th of December. Ellen- We want to see you guys while we are there. Eleasha & Cody- We want to see you guys too. Aunt Shawn- If possible we'd love to see you. He should still have some steroid cheeks for you to pinch. Of course we will have to stop by and see our buddy Harmen. Alicia, I will come to see you and Tommy, but obviously I won't be able to bring Jordan. You guys hang in there ok!
We love you all. Thanks so much for all the supportive guestbook entries from this week. They really helped get us through this difficult week.
Love,
Carrie

Friday, November 21, 2003 10:33 PM CST

Well there was no surgery today. Jordan's hemoglobin went down a little and his test for antibodies came back positive. Upon further tests it turns out he has 3 antibodies. Now this does not necessarily mean that they are going to dirctly affect his hemoglobin but they may. We will have to do the same thing we always do and wait and see. Now this poses another problem. We have to temporarily raise his steroids which we absolutely don't want to do. This and the possibility of blood transfusions will prevent us from taking out his central lines. The problem with this is that all of our doctors agree that there is a very strong chance that after he finishes his antibiotics his infection will return. I don't think there is a very good solution to this problem. I was so looking forward to him being able to get into a bathtub and splash around. Now we have much bigger concerns. Anyway if his labs look decent tomorrow we will be bringing him home with us. Dr. Brandt thinks we can do everything here that they can do there. We will be taking his blood to the hospital in Decatur and if he needs blood or anything it will be done in Springfield. So let's hope for the best. Dr. Brandt and Dr. K both feel like for now being treated here is fine, but if things get much worse we will be making a trip to Duke. Whatever is best for Jordan of course. Hopefully Carrie will be making the next update tomorrow.
Patrick

Thursday, November 20, 2003 8:37 PM CST

I know I was supposed to update this morning but Carrie called me at 6:30 am and said I had to get up there because she didn't get any sleep all night. On the other hand still no fever and they are going to remove his lines tomorrow. He is acting like his same old silly self again. The only problem is that his hemoglobin and platelets are down quite a bit so we are hoping this is from the infection and not those pesky antibodies rearing their heads up. Anyway hopefully his labs will look better tomorrow and we can get everyone home. I will update tomorrow night if not earlier to let everyone know how things are going.
Patrick

Tuesday, November 18, 2003 11:01 PM CST

Okay well I just walked in the door so I wanted to get right to the computer. For those of you who didn't see the earlier update Jordan was admitted into St. Johns hospital this morning running a very high fever. Any way the word is that the blood cultures from both lines grew a gram negative something or other infection which is what Dr. K told us she thought it was when we talked to her earlier. Carrie and I are always so careful but I guess these things happen. They have given him motrin which has brought his fever down and made him feel a little better. They are giving him two IV antibiotics but they will cut it back to one when they figure out exactly what they are dealing with. Whichever antibiotic works better for the infection is what they will give him. I know other families have dealt with this but this is a first for us. I have no idea how serious this is, but by the way the nurse broke the news it must be a little serious. On a bright note the nurses at St. Johns rival Duke with their friendliness and professionalism. Anyway that is all for now. I will be heading back first thing in the morning and will update tomorrow night if not earlier.
Patrick

Tuesday, November 18, 2003 2:27 PM CST

Of course with the good comes the bad. Joran's poulse oximeter woke us up this morning with the usual alarm. Not because he had pulled off his O2 but because his heart rate was high. Carrie went and got him and he was burning up with a fever. We took him to clinic and they cultured his lines and gave him antibiotics. He is now inpatient at St. Johns in springfield. He will stay that way until we figure out what is going on. I would guess at least a few days. He has a very competent doctor there, and he is in constant contact with Dr. K. I'd say now would be a great time to say a prayer. I will update tonight when I come home from the hospital. Anyone who wants the phone number to the hospital room can E-mail me. I am not going to post it for fear someone who shouldn't have it gets it.
Patrick

Friday, November 14, 2003 0:12 AM CST

Why I love my mommy
by Jordan Horton


Today is my mommys birthday. I want her to know why I love her so much. Dad tells me that mommy has been waiting for me to be born for as long as she can remember. Dad also said that mom loved having me in her tummy the whole time even though her back hurt. When mommy found out I was going to be sick she cried and cried. It never changed how much she loved me. Dad also said that I didn't want to come out when I was supposed to and even though mommy hurt a lot she was so excited to see me that all she talked about was seeing me until they brought me to her. When I was in the hospital she was always there for me. When i don't feel good I cry if mommy isn't holding me. Sometimes I have bad dreams at night and mommy is always there to pick me up and love me. I have heard other babys talk about their mommys but I know that mine is the best. Happy birthday mommy I love you.

P.S. Everyone says I look like dad. I'm glad because he is very very good looking and smart

Tuesday, November 11, 2003 5:49 PM CST

Day 335

First of all I must quickly address a comment left in our guestbook. You know who you are: If you want to leave a negative message, fine, big deal, but have the courage to leave your name. Did you really think that I would believe that my own sister (Angie Lyerla) would leave a nasty message to me. She has been one of my biggest supporters. You may not realize this, but Angie has done everything within her power to help us through this past year. She has done fundraising, called to make sure I was ok, and left very inspiring and encouraging messages in my guestbook. I didn't care when you were writting messages to me, but trying to pass yourself off as my sister is outrageous and I will not tolerate it. As you can see, your message has been deleted and you won't even get the satisfaction of everyone reading it! Sorry, this is not your webpage and you don't get to control it's content. Oh, and "evil debbie" when you made the comment about my dad working his a** off while we whined about what we didn't have, you forgot to mention that my mom worked her a** off too so we could whine about everything.
I appologize to everyone else, but I am sick of this person(s) trying to pass him/herself off as my sister. Angie is a wonderful person and anyone who knows her knows she would never stoop so low as to kick someone when they are down.

OK, ON TO THE JORNAL!
HAPPY BIRTHDAY TO JORDAN'S GRANDMA GREAT (Annie) YESTERDAY!
We are quickly approaching that one year post transplant mark. Man we thought things would be so much different than they are right now. One thing I've learned is that everything happens in God's time. I thought I had learned that lesson a few years ago when I attended a religious retreat with the Senior girls at St. Teresa (the school where I teach). The retreat is called KAIROS, which means God's time. I learned so much from the retreat, but never understood the true meaning of KAIROS until this year. No matter how much we wish for things to speed up or slow down, we really have no control over any of it. I firmly believe everything happens for a reason and although this road has been long and winding, it has been worth it. We see Jordan getting stronger and happier everyday. He is sitting up for longer periods of time, using his hands more, kicking his legs, and rolling over again! YES, he rolled over from his back to his belly three times today. He hasn't done that on his own since before his PICU trip. We are just seeing amazing strides in our child and we are grateful for every inch!
Jordan's counts looked great today. His hemoglobin is at 13.2, platelets 232K. All of his chemistries look good and his liver functions are slowly creeping down again. Dr. Brandt said that his liver is going back to normal too. It was enlarged (probably from steroids) just a few weeks ago. Things are looking good and we couldn't be happier. Jordan is still on 3MG of steroids two times a day, but Dr. K. is supposed to be e-mailing me tonight if she wants us to lower it to 2MG tomorrow. We are anxious to get Jordan off these steroids because of all the damage they have done to his body, but we don't want to wean them to fast. Graff Vs. Host disease would be much worse. I know we are not updating as often as we would like, but please know that we are reading your guestbook entries everyday. Leave us a message and let us know you are thinking of us. We will try to update more often than once a week, but I can't promise anything. There is so much more to do in this house (laundry, cleaning, etc.) than there was in the two bedroom apartment. Well, until next time, we love you all.
Please pray for Tommy Bennett(www.caringbridge.org/ca/bennettboys) he is having complications with transplant number 3. He has 100onor cells, but his body has been through so much this past year, and we are starting to see the results of the treatments. Also pray for our buddy Cody (www.forcody.org)who is back in the hospital with three different infections in his lines. Don't forget about Cameron nicoll (www.caringbridge.org/co/nicollbrothers) who is also having problems with line infections and is having his lines removed soon.
Love,
Carrie
We will be returning to Durham DECEMBER 7th-11th. If anyone would like to help with travel expenses, we would greatly appreciate it. We will probably be using Angel flights again for transportation to and from North Carolina, but we could use any information on discounts for car rental or hotel stays. As always, your help is greatly appreciated.
Thanks,
Carrie, Patrick, & Jordan

Wednesday, November 5, 2003 1:29 PM CST

Happy 17th Birthday yesterday to Cousin Beth Horton!

Yesterday's clinic visit went well. Jordan's counts look good except for his platelets. They went down a little, but we hope it is just from lowering the steroids last week. Needless to say, we won't be lowering the steroids this week. We want to give his body time to adjust to the new dose and then we will lower them again in another week or two.
Remember when Jordan was having pain last week and we took him in for x-rays. The x-ray did show an old fracture in his femur. No wonder this little man has been in pain. I can't believe he had a broken leg and we didn't even know it. I've cried so many tears over this. I remember a few months ago (at Duke) we took Jordan into clinic because we thought he had leg pain. They did x-rays and everything was fine. I'm sure that is when the fracture actually took place. Dr. Brandt said that sometimes you can't see a fracture on an x-ray until it starts healing. Jordan's fracture is healing alligned and should be fine. We just have to go a little easier on his physical therapy, and then we will do another x-ray in about a month to make sure it is healing the way it should. How could he get a fracture? We asked the same thing. The answer is always the same . . . STEROIDS! Steroids make the bones very brittle, so brittle in fact that normal movement can cause fractures. My poor baby. He is one tough kid to only complain about a fracture for one day. He truly is amazing.
Good news . . . Jordan is really improving physically. He has started to lift up his legs again. For the longest time he has not been able to pick his leg up off the floor when on his back. He could move his legs across the floor, but not actually lift them (so he can reach them). This morning (when all the therapists were here), he showed off and lifted both legs off the ground at the same time. This is really a huge accomplishment for him and we are so happy!
All of Jordan's therapists came to the house this morning for an IFSP (individual family service plan) meeting. The therapists, Jordan, & I met with a nurse coordinator to discuss the best treatment for Jordan. We are going to continue with Physical therapy 2-3 times a week but go easier on his legs until his fracture completely heals. He will also get occupational therapy once a week and speech therapy once a week. We really love all of our therapists here. Jordan interacts well with them and actually cooperates. It is amazing what lowering his steroids has done for him. He use to screamand cry at the physical and speech therapists in Durham because he was too tired and weak to do what they needed him to. It is nice that he actually enjoys the therapies here. This means he is getting much more out of them. I can't wait for Beverly & Barbara (therapists in Durham) to see his improvements when we go back to Duke in December. They will be so impressed.
Things are going well as far as Jordan is concerned, but we are still having trouble getting adjusted to being at home. Patrick is back to work, but won't get paid until the end of the month and I am not working, so money is tight. We are looking forward to Patrick's first paycheck. Hopefully by the new year Jordan's immune system will be a little bit stronger and I can start some subbing. Until then, I can't go into the school everyday and be exposed to illness and bring it back to him. I really miss teaching and can't wait to go back, but I don't wan't to put Jordan in harms way. We have to be so careful until his immune system returns, and even then he will have the immune system of a newborn. We will have to catch him up on all of his immunizations. We are looking forward to the day that we can start doing some "normal" things with our son. Until then, we are enjoying having him all to ourselves.
I know people want to come visit us. You are welcome to come as long as you are not sick, don't have a cold or fever, and have not been immunized within the last 30 days. Just call ahead to make sure we don't have tons of therapy, visitors, or a doctor's appointment. It gets kind of lonely in our house, so we would love to see visitors.
Love,
Carrie

We will be returning to Durham DECEMBER 7th-11th. If anyone would like to help with travel expenses, we would greatly appreciate it. We will probably be using Angel flights again for transportation to and from North Carolina, but we could use any information on discounts for car rental or hotel stays. As always, your help is greatly appreciated.
Thanks,
Carrie, Patrick, & Jordan

Monday, November 3, 2003 2:27 PM CST

Day +327

BIRTHDAY PICTURES!

We had a very happy halloween. Jordan looked so cute in his costume. He was a pumpkin (Thanks Susie!) I will put those pictures up soon. I have to scan them in because I didn't get any pictures with the digital camera. He was feeling much better, and I took him trick or treating to grandma Horton's. He even had a sucker, which stuck to his hand; he had so much fun trying to shake it off.
On Saturday we had his birthday party. He was so excited and in such a good mood all day. He knew it was his day, and he enjoyed every minute of it. It was nice to have the family together. He even got to see cousin Sheridan, and she helped him blow out his candle and open presents. She was a big help! Jordan played so hard that when everyone left he took a 2 1/2 hour nap. I actually went in and woke him up because It is not like him to sleep so long. I went to a halloween party with Aunt Kris Saturday night and had so much fun dancing, but I think I had some bad shrimp or something. I woke up Sunday morning very sick to my stomach. Patrick had worked from midnight until 10:00 in the morning and was exhausted, so Papa & Gram Horton had to come sit with Jordan so mommy could rest. By last night I was feeling quite a bit better, but my stomach is still yucky. I was so afraid that I was sick and was going to make Jordan sick, but apparently it was something I ate because he is just fine.
Stephanie Potter & Elizabeth from the Herald and Review came over and took pictures at Jordan's party and interviewed the grandparents for a great article that came out in yesterday's paper. Thanks Stephanie! The article was excellent as always. Elizabeth, the pictures were great!
We have our big clinic day tomorrow, so I will update after we get back. By the way . . . about Jordan's enzyme test (Tracie Nicoll: you will appreciate this) . . . We haven't gotten a single enzyme test back since his transplant because something always goes wrong, well again something went wrong. Dr. K. called the lab and they informed her that the blood was sent in the wrong tube, so they were unable to run the test. We've been waiting for 2 months for that! Well, that's life. We know he has to be producing some of the enzyme because he doesn't yet have any symptoms, but it would be nice to have evidence! We will draw another one when we return to Durham in December for his 1 year studies.
Until next time . . . Go hug your kids!
Love,
Carrie

Thursday, October 30, 2003 2:55 PM CST

Day 323

With every celebration there comes heartache. . . As Jordan celebrated his first birthday, we learned that yet another transplant child earned her angel wings. Madison Mitchem became and angel yesterday after a relapse in her brain. She fought hard, but her body couldn't fight any longer. We sadly miss Jordan's cheerleader friend. Please visit her website and offer her family words of support www.caringbridge.org/nc/princessmadison

Jordan had a difficult day yesterday. Although we wanted him to have nothing but joy on his birthday, we spent the day visiting Dr. Brandt and his staff in Springfield. Jordan woke up yesterday morning and was happy until Patrick lifted him out of his crib. When he did, Jordan let out a scream. Patrick thought he was just hungry and needed a clean diaper, but as the day went on Jordan got more and more fussy when we would try to sit him up or hold him upright. We thought maybe his head was hurting (the shunt thing is always in the back of our minds) or possibly his hips. We called Dr. Brandt and decided to go ahead and take him in. Dr. Brandt had an orthopedist (sp?) check out his legs and hips, but he didn't find anything wrong and suggested that it might be his back. Dr. Brandt ordered a CT scan (to rule out inner cranial pressure in the brain) and x-rays of his pelvis and hips. We got everything back today and they were all negative. Today, Jordan seems to be feeling better and the CT scan showed no symptoms of extra pressure or fluid on his brain. Dr. Brandt figured that he probably had extremely sore muscles from the intensive physical therapy that he had on Monday. Since Jordan is pretty much back to his old self today, we are relieved and fairly confident that the diagnosis of muscle pain is correct. WHAT A SCARE THOUGH! Of course, Jordan can't do anything the easy way (even celebrate his birthday). That's ok, we are just glad that he is ok.
I ask all of you to say a special prayer for my friend Stephanie Vaughan who had surgery on Monday to replace her shunt after a very scary weekend. She is doing well now and is at home recovering. Stephanie, we hope you are up and bouncing around again soon.
Last, but not least, I wanted to share something that was e-mailed to me. It really does help to explain a little what it is like to have a child with disabilities.

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland."

"Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plans. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Love,
Carrie

Tuesday, October 28, 2003 5:44 PM CST

Day 321
HAPPY FIRST BIRTHDAY TOMORROW JORDAN! MOMMY & DADDY LOVE YOU!

We had a great, short clinic visit today. Jordan's counts look good, and we are really happy with his progress. His hemoglobin is 12.8 and platelets are 249! He just keeps going in the right direction. We think that his steroids will be lowered tomorrow, but haven't heard the official ok yet. Jordan's weight has been stable for the last two weeks, and we are thankful that his appetite seems to be returning a bit. Jordan has been a busy boy. He has occupational therapy once a week and physical therapy 3 times a week. He is improving and hopefully will be rolling over again soon. He gets on his side and reaches but is just too heavy to roll all the way over. It's no surprise with those cheeks! We are in the process of getting speech therapy set up as well. We have contacted Macon County early intervention and they are trying to get every therapy imaginable for Jordan. We will take whatever they will provide to us. This program will provide him therapy for little or no cost up to age 3. I thought it was worth it to see what we qualified for. Our yard sale went well on Friday, but we were rained out on Saturday and had only a few customers. We are thinking about doing another one, but will probably wait until the spring because this weekend we will celebrate Jordan's first birthday. After this weekend it may be too cold to have a yard sale.
We again e-mailed Dr. K. to ask about Jordan's enzyme and immune function tests. We are really on pins and needles about the results and it is driving us crazy that we don't have them yet. Hopefully she will e-mail us the results soon. We will let you know when we hear the (hopefully good) news.
We have gotten many cards and letters since we have been home, and I want to thank everyone who has sent us one. We have been so busy, and I am way behind on my thank you cards, but please know that we appreciate everyone's kindness. I will try to get those thank yous out soon!
Love,
Carrie

Saturday, October 25, 2003 12:22 AM CDT

Well it is saturday. You know I always thought that we wouldn't do what everyone else does and slack off the journal entries when we get home but we did. Everything has gone well. Jordan's first clinic visit was uneventful. I had to miss it because I was dealing with plumbers. Things are really going remarkably well considering. The yard sale went well yesterday, but it has been raining today. Jordan is a little trooper. His labs have stayed pretty consistent so far. I am in the process of getting back to work. All I have left is a physical. Hopefully after the yard sale is over I can take my garage back but it is doubtful. We still have a lot of stuff left and nowhere to put it. Our anniversary was great. I went and splurged on steaks and baked potatoes. So we put Jordan in his high chair and we all had a nice romantic dinner together by candle light. Since Jordan is not eating steak yet he tried to eat his toys. It was the most perfect anniversary I could have imagined. Now we get to look forward to Jordan's first birthday party on saturday. I just hope I am not at work instead. Jordan's favorite little duke cheerleader Madison is having a tough time. Please stop by an let her family know you are thinking about them. They are a truly special family.
www.caringbridge.org/nc/princessmadison

Patrick

Monday, October 20, 2003 9:45 PM CDT

Day 313

Happy 3rd anniversary (tomorrow) Patrick! I love you with all my heart. I couldn't ask for a more supportive and loving husband.

Sorry it has been so long since we updated, but things have been extremely hectic around here. We are currently setting up all of Jordan's home health visits. He has been seen by a home health nurse, occupational therapist, and physical therapist. We are still in the process of working with Macon County early intervention to see what programs Jordan qualifies for.

I can't believe we have been home for over a week. Everything seems like a blur. I thought things were going to slow down and be easier here at home, but the exact opposite has been true. We are still trying to unpack boxes, rearrange the house, and just get settled in. We haven't really had any time to rest yet, and when it rains, it pours. A few days ago, the downstairs toilet got clogged. When the plunger didn't help to unclog it, we thought it might be something worse. Since we can't do anything the easy way, we knew it was going to cost us money. We called a plumber today and he told us that tree roots probably grew into the line and clogged it. We have to have a plumber come out first thing in the morning and fix it, and we can't run anymore water through the drains tonight or it could back up the entire system. This sucks, but I'm sure we will get through this like we always do.

Of course, we don't have enough to do, so we are going to do the yard sale this weekend. We are afraid that next weekend might be too chilly. If we don't get rid of everything this weekend, we may do it again next weekend, but we will just have to see what happens. It will be Friday and Saturday morning. If anyone has anything they would like to donate, let me know. We hope it goes well.

Patrick is in the process of getting everything ready to go back to work, but he can't just show up and start working again. He has to have a physical and take certain tests to requalify etc, etc. I must admit that I am kind of sad about it. I want him to go back to work because we really need the money, but I am really going to miss having him at home. I will really miss all of his help with Jordan. That is going to be a huge adjustment for me, but I'm sure we will survive. For right now, I can't go back to work full time at my job because Jordan requires way too much care. I just don't feel comfortable leaving him with anyone yet, and I don't know that anyone would feel comfortable being responsible for all of his medications. Although he is doing great, he still requires so much medical attention. We have to constantly watch him for fevers, rashes, vomitting, loose stools, etc. Since Jordan can't tell us if anything is wrong or if he feels bad, it's hard to know if he is really sick. I know his routines and what "his normal" is, so I pretty much know if something isn't right with him. I am too much of a control freak to let someone else have that responsibility on a regular basis. Someday I will be able to let go of some of that, but not any day soon.

Well, tomorrow is the big clinic day. Jordan will have his counts checked and get his IVIG. We hope that his weight is up or the same. He has lost about a pound since we have been home. We don't know if it is from the lowered steroids, or his decrease in appetite. He was eating from 35 to 40 ounces a day and has decreased to about 30 a day. This decrease in appetite is probably due to the fact that the steroids are being lowered, but we don't want him to slow down too much with his eating. We want him to stay healthy and strong, so pray for his appetite to increase a bit.

Thank you to Laurie Smalley for the formula coupons. They will be very useful! Thank you to Stephanie & Don Vaughan for the anniversary card and phone call. You both are too sweet, and we can't wait for you to visit.
Love,
Carrie

Wednesday, October 15, 2003 9:59 PM CDT

Day +307

We had our first visit with Dr. Brandt today and we really liked him. He is no Dr. Kurtzberg, but I don't think anyone would even come close to living up to the standards she has set. Dr. Brandt is however a nice man with a wonderful staff. His nurse Melanie was very patient with all of our questions. They were very quick, which is something we are not use to. We actually made an appointment and saw the Dr. within an hour of arriving. We were amazed, especially when Dr. Brandt told us he was sorry we had to wait so long. We just laughed and told him an hour was cake! We will go in next week for Jordan's check up and IVIG. All the BMT families check this out: we meet with Dr. Brandt at 10:30am and have Jordan's infusion at 11:00am, and then we can go home!

Ok, enough rubbing in our short day . . . on to Jordan's labs. His labs looked great today! Hemoglobin 13.0, Platelets 219K, potassium 4.4(wow) and his Carbon dioxide level has decreased and is now in normal range! We were shocked at this because it hasn't been normal since Jordan was released from the PICU. I guess the oxygen is really helping him. The only thing that was somewhat concerning was his liver enzymes. They were slightly elevated (again) and Dr. Brandt said that his liver was slightly enlarged. This didn't alarm us because Dr. K. said it was enlarged back in May before his spleen removal, but we thought that it had gone back down. No one had mentioned it since May. Maybe that is why his enzymes are high. It could be many things causing this, such as the chemo. or current medications, so they are going to monitor it and see what happens. At this point I don't think it is a major concern, but it is something that we will watch closely.

Everything else is going pretty well. We are adjusting to the new home health companies. The infusion company screwed up our order for medication and supplies, and I am still working that out. They also sent me a sharp's container smaller than a milk carton, and I filled it already. We have a few wrinkles to iron out, but I think it will be ok. We are currently working on getting physical and occupational therapy to come to the house to work with Jordan. A therapist is coming Monday to evaluate him and make a recommendation.

We are trying to work through the Macon County Early Intervention Program to see what services and therapies Jordan qualifies for. We are going to get him as much help as possible so that he can get back to being a normal, healthy 11 month old.

Thank you to all the family and close friends who visited and brought gifts for Jordan the past few days. (Aunt Cherie, Aunt Angie, Aunt Tina, Uncle Kenny, Uncle Alvin, Uncle Jerry, Great Grandma Yeske, Grandma Sheila & Papa Dale, Grandma "Great", Grandma & Papa Horton, Aunt Kris, Butch, and the "ladies" at the courthouse). We appreciate the welcome home and the gifts for Jordan. Thank you to Roberta Kishbaugh (Angel Ryan's Mom) for the birthday card and present for Jordan. It was so sweet of you. That is the first birthday card he's ever gotten! Thank you to Clyde's Chapel Baptist Church Youth group for the benefit dinner for Jordan. This small church has amazed us with their extremely generous and loving devotion to our family. We have never met most of the members, but they have accepted us as one of their own. We thank them so much and may God Bless their selfless acts!

Love,
Carrie

Monday, October 13, 2003 10:05 PM CDT

NEW PICTURES!
The flight home was very uneventful! We had Dr. Lew Nelson from Winston-Salem as our pilot, and he was so nice. He let Patrick sit in the co-pilot seat with the headset on for the entire flight. Patrick really enjoyed it. Jordan slept for the first hour and then laughed and played the remainder of our 3 hour flight. When we got to the airport, the news crew and some of our family members met us as well as Patrick's best friend Butch. It was nice to see everyone and the welcome was wonderful. I can't speak for Patrick, but I was overcome with emotion. I never thought Decatur would look so good (it still smells bad though)! We thank all of you guys for wishing us well on the guestbook and in person. We are starting the next phase of our journey, but the last one couldn't have been completed without everyone's support.

We are so glad to be home, but we still haven't had time to take a breath. We have been trying to get unpacked and get everything set up here. I didn't realize how easy it was being at Duke. I have been on the phone constantly trying to get home infusion (IV Medications), Apria (oxygen equipment), physical therapy, speech therapy, Doctor's appointments, prescriptions, etc. since we have been home. We are exhausted, but we getting settled (kind of). It will take weeks for us to put everything away and then we are going to have a huge yard sale. We have so much stuff! You would never believe the things we have accumulated over the past year. Having a child really fills up a house. Everything is now set up to accomodate him. Patrick and I keep tripping on oxygen tubing and toys, but we love it.

Although it is great to be home, we are missing Duke and our friends there. Alicia- We hope that Tommy is doing well and will be released with donor cells in no time! Eleasha- We are sorry that you and Cody will be commuting to Duke for a while yet but pray that everything works out. Greg & Debbie- We love and miss you guys and wish you a safe trip back to Hawaii.

We have been so paranoid about Jordan being home and getting sick. Since this is Jordan's first time home, he hadn't met most of the family. We have had many visitors in the past few days. Although we have signs on our door asking about illness, recent vaccinations, & requesting (although it is really a demand) removal of shoes and washing hands, we still question everyone who enters our house. I find myself sanatizing Jordan after people leave. I hope no one who visited is offended by that, but we just can't take any chances. Jordan has never been around other people, so we are really being careful not to let him get sick.

Well, we have our first visit with Dr. Brandt on Wednesday afternoon. We are a little nervous to see how everything will go, but everyone I have spoken to raves about him. I hope we like him just as much as everyone else does. I spoke with his nurse the other day and she was super sweet on the phone. Anyway, we will update after our visit and let everyone know how it went. We still haven't gotten Jordan's immune function or enzyme tests back. Waiting . . .
Love,
Carrie

Saturday, October 11, 2003 3:16 PM CDT

We just wanted to let everyone know that we made it home safely. Patrick even got to sit in the cockpit as the co-pilot for the flight. We will post pictures soon. Jordan loved his first flight and we thank Angel flights and especially Lew Nelson for the flight. We will update more soon.
Love,
Carrie
We are forever grateful to the people who have so generously helped us. THANK YOU, THANK YOU! Yes, we are home, but the medical expenses won't stop. Patrick will be going back to work soon, but I will not be able to go back to work at all until January and maybe then only part time. Although I don't make much money, it is going to hurt us. Jordan is going to need physical and speech therapy to get him from the 4-6 month level that he is at right now to a "normal" 11 month old. These therapies may not be covered or only partially covered by our insurance. We humbly ask for help from anyone who is in a position to give. Anything that anyone does or gives is appreciated and welcomed.
Here is a list of specific NEEDS:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with or without lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at home.
The address is below.
Love,
Carrie, Patrick, & Jordan

Wednesday, October 8, 2003 9:17 PM CDT

Day +300
***We got a flight home***

On October 11th it will be 4 days shy of a year that we have been away from friends, family, and our home. It has been a difficult journey, but one we have grown greatly through experiencing. On October 11th this part of our journey will come to a close as we board a plane and take Jordan home for the first time. We make this journey with great happiness yet much fear of the unknown road ahead.

We are leaving behind new friends, friends with which we have an everlasting bond that only another transplant parent can understand, and we are thankful that most parents will never have to. We've loved many kids and their families, and it's a deep true love that is unexplainable yet real. We have lost many children who are now precious angels watching over us (Kyle, Brittney, McKenzie, Ryan, Reese, Travis, Keeshon, Douglas, Hermes, Aristophanis, Garhett, Jillian, and our newest angel Noah). We will never forget them and forever grieve their loss.

We've expereinced so much over the past year. All of these experiences have taught us lessons, but none more clearly learned than the one taught to us on May 31, 2003. That is the day we saw Jordan struggle to take a breath, and we prayed to God it wouldn't be his last. After five long days in the PICU, our lives were forever changed and we were much more aware of how quickly things can be taken from us. After almost losing him and seeing so many other parents lose their children, we now hold Jordan a little longer, hug him a little more often, laugh a little harder when he laughs, and appreciate his voice a little more (even when he is screaming). We are a little more tolerant of long clinic days and a little less tolerant of parents who don't appreciate the gift of parenthood and a healthy child. I now look at parents just starting the transplant process, and I cry for all they are about to endure. They look so fresh, new, and full of hope. They have no idea what they are about to experience and no one can properly prepare them for it. It is an experience that I will forever curse yet be thankful for and never forget. We are forever changed, yet we are still full of hope!

We don't have all the details of our arrival in Decatur on Saturday, but we should be arriving around noon. Since Jordan can't be around anyone who has been vaccinated for certain things or has been sick, we are screening all visitors. We really want to see everyone, but we ask that you please call before stopping by. We have to make sure it is safe for Jordan to be around others, especially with the cold and flu season quickly approaching. Without a spleen and with a weakened immune system, it would be very difficult for Jordan to recover from any illness.

We may not be able to update again until after Saturday because we are sending our computer back to Illiniois, but I will try to update once we are settled into our home.
Thank you to Clyde's Chapel Baptist Church for the love offering for Jordan. We appreciate your generosity and giving spirit.
Love,
Carrie

We are forever grateful to the people who have so generously helped us. THANK YOU, THANK YOU! Yes, we are going home, but the medical expenses won't stop. Patrick will be going back to work soon, but I will not be able to go back to work at all until January and maybe then only part time. Although I don't make much money, it is going to hurt us. Jordan is going to need physical and speech therapy to get him from the 4-6 month level that he is at right now to a "normal" 11 month old. These therapies may not be covered or only partially covered by our insurance. We humbly ask for help from anyone who is in a position to give. Anything that anyone does or gives is appreciated and welcomed.
Here is a list of specific NEEDS:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with or without lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at home.
The address is below.
Love,
Carrie, Patrick, & Jordan

Wednesday, October 8, 2003 10:55 AM CDT

Just a quick update to let everyone know that we found a flight. Carrie will update more when we find out the details. Thanks to everyone who was trying so hard to get us home.

Tuesday, October 7, 2003 4:12 PM CDT

Day 299
Update from earlier today and new update below
*****UPDATE TUESDAY MORNING 7:52 CDT*****
We wanted to update before going to clinic and let you all know that Baby Noah earned his angel wings shortly after midnight last night. Their journey has been long and full of heartache and we ask everyone hold them close in prayer. Debbie & Greg, we love you both and sadly grieve with you. Noah is now free of hospitals, medications, and machines. He can fly free and dance with the angels.
--Carrie

WE ARE GOING HOME! JORDAN YOU DID IT! Jordan's counts were great today and Dr. K. said we can officially go home. His hemoglobin was 13.2 and his platelets are 201 and holding steady. She wants us to draw final blood counts on Friday, since he won't be seen in Springfield until Tuesday or Wednesday. We are still in the process of trying to get a flight home, but are having little luck so far. Again, if anyone knows anyone who can help, we would greatly appreciate it. Dr. K. just isn't thrilled about us driving that far with Jordan. Hopefully we will hear something in the next day or two. We have some people working on a few different ideas, but nothing solid yet. We are scared to death to go home because things will be much different there, but we are so excited and happy to be able to be with our family and friends again. Although we want to be able to see everyone as soon as we get back, we have so many restrictions on being in public. Jordan's immune system is still very weak, so we will have to ask anyone who is sick or feels he or she may be coming down with something should save his or her visit for another day. Also, Jordan can't be around children or anyone who have had a live vaccine within the last 30 days or anyone who has had the nasal flu vaccine in the last 30 days. The flu shot is ok and Patrick and I plan on getting that as soon as we get home. Jordan still can't be in crowds or around construction sites, but he can play in our yard and go for walks around in our neighborhood or at the park, which will be nice for me and Patrick. He can go to restuarants that have outdoor seating if they are not crowded. It will be an adjustment, but it will be well worth it to have a healthy baby at home. We don't know all the details of our doctors visits in Springfield but will know more about those tomorrow. My Mom and Patrick's dad will be here later this evening to help us pack things up to go home. Pray that the rest of their trip is safe. We can't wait to see them!
Thank you to Brenda Lee for the letter and money. We appreciate your never ending support.
Thank you to all the helpful suggestions in our e-mail and guestbook about how to get home. We hope that one of these ideas will pan out.
Again, thank you to everyone for the many prayers and support. It has been a long year and we are very ready to go home. We love and miss you all.
We will be having a yard sale when we return home, and anyone who wants to help or donate items can contact me after Monday the 13th at 217-876-1185 or e-mail Patrick and me at the address below.

We are forever grateful to the people who have so generously helped us. THANK YOU, THANK YOU! Yes, we are going home, but the medical expenses won't stop. Patrick will be going back to work soon, but I will not be able to go back to work at all until January and maybe then only part time. Although I don't make tons of money, it is going to hurt us. Jordan is going to need physical and speech therapy to get him from the 4-6 month level that he is at right now to a "normal" 11 month old. These therapies may not be covered or only partially covered by our insurance. We humbly ask for help from anyone who is in a position to give. Anything that anyone does or gives is appreciated and welcomed.
Here is a list of specific NEEDS:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with or without lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at home.
The address is below.
Love,
Carrie, Patrick, & Jordan

Monday, October 6, 2003 1:10 PM CDT

*****UPDATE TUESDAY MORNING 7:52 CDT*****
We wanted to update before going to clinic and let you all know that Baby Noah earned his angel wings shortly after midnight last night. Their journey has been long and full of heartache and we ask everyone hold them close in prayer. Debbie & Greg, we love you both and sadly grieve with you. Noah is now free of hospitals, medications, and machines. He can fly free and dance with the angels.
--Carrie


It has been a long year, but as long as Jordan's labs look good on Tuesday, we will be going home on Saturday the 11th! We are not for sure what time we will be home because we haven't heard from Angel flights yet. We are having trouble finding a pressurized plane to get us home. Angel Flights is a volunteer program that uses private planes to fly sick children to and from the hospital, when they can't afford or can't medically fly commercially. Jordan can't fly on a commercial flight because he doesn't have an immune system and most flights through Angel flights aren't pressurized. He needs a pressurized cabin because of his oxygen requirements. If anyone has any suggestions or knows anyone who has a pressurized plane that could fly us, we would appreciate it. Thank you. Hopefully we will get home safe and sound and on Saturday! We will let you know the details when we know them.

Please say a prayer for Noah and his family. He has not gotten better over the weekend and they have to make a very difficult decision about removing him from life support. I ask that everyone pray for them to have peace with the impossible decision with which they are faced. This is something that no parent should have to do. We love Debbie, Greg, & Noah so much, and this is so hard to accept. I cant' imagine being in their shoes. Please go to their website and offer words of support www.caringbridge.org/hi/noah)
Love,
Carrie

Saturday, October 4, 2003 10:34 AM CDT

EVERYONE NEEDS TO PRAY FOR NOAH! STOP WHAT YOU ARE DOING AND SAY A PRAYER! He is still in the PICU and is not improving. The doctors don't know what is causing him so many problems and Greg and Debbie are left with many questions and no answers. This family was in the PICU with Noah when Jordan was there and they were a trememdous source of strength to us. I can't explain to you the strong bond we feel with this family. They need strength and guidance. I know they are confused and exhausted and I ask that all of you please say a prayer for Noah and his parents. We love them so much.

Love,
Carrie

Friday, October 3, 2003 5:03 PM CDT

Day +294

Jordan is doing great. His hemoglobin was 13.5 and his platelets were 201K! WAY TO GO JORDAN! Dr. K. said we can go ahead and make arrangements to go home next weekend. As long as Jordan doesn't do anything odd between now and then, we will be on our way home sweet home! We will update when we get all the details, but we are so excited!
****I ask everyone who is reading our website to stop and say a prayer for Noah Prichard. He is still in the PICU and his oxygen requirements and vent needs are increasing. His parents are faced with some very difficult decisions and they need everyone's prayers and support. Go to their webpage (www.caringbridge.org/hi/noah) and offer them words of support and strength. We feel a very special bond to this family and we want so badly for Noah to pull through. He is only a few months older than Jordan and they have been here almost his entire life too. Please pray for this precious baby and his family. I will update later with Jordan's lab information.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, October 3, 2003 8:02 AM CDT

I ask everyone who is reading our website to stop and say a prayer for Noah Prichard. He is still in the PICU and his oxygen requirements and vent needs are increasing. His parents are faced with some very difficult decisions and they need everyone's prayers and support. Go to their webpage (www.caringbridge.org/hi/noah) and offer them words of support and strength. We feel a very special bond to this family and we want so badly for Noah to pull through. He is only a few months older than Jordan and they have been here almost his entire life too. Please pray for this precious baby and his family. I will update later with Jordan's lab information.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, September 30, 2003 9:37 PM CDT

***UPDATED PICTURES 10/01/03***
I know you all have been patiently waiting for an update and of course we had to spend all day in clinic. It was a long, hard, emotional day and we are so tired, but I wanted to let you all know our news. Jordan's counts looked really good today. His hemoglobin was 13.5 and his platelets were 189K! We couldn't be happier with those results. Dr. K. even lowered his steroids again. He is now at 5MG twice a day. In the next few weeks we should start seeing some of those cheeks go down. Hopefully that will help with his oxygen saturations. He was requiring oxygen most of the day today, but he really didn't take a nap and was just exhausted. We got to clinic at 8:45 this morning and got back to the day hospital for his infusion at about 9:30. Jordan was all finished with his infusions and had already seen the nurse practitioner by 11:30. So . . . why did we wait until 5:30 to see Dr. K.? Your guess is as good as mine. By the time we saw her I was an emotional wreck. I guess I should fill you in on why.
When Eleasha and Cody got to clinic around 11:00, Eleasha and I went to see Baby Noah and his parents in the PICU. When I walked through those doors, all the emotions and fears that I felt for Jordan back in May came rushing over me and I fought to compose myself. Then we went to see Tommy Bennett he is doing better but still struggling as well. This topped with a 9 hour clinic day was just too much!
When I spoke with Noah's mommy, my heart broke for her. Noah is really struggling and they are exhausted. Noah has been on a huge roller coaster for almost a year now. Everytime they get good news, something happens and Debbie and Greg are spent. Eleasha said a prayer over baby Noah and his Sats improved, and this made me feel a little better, but I can't even describe how terrible I feel for Noah and his parents. I want so badly for this little boy to be ok. His parents are the kindest most loving people and they deserve to have a healthy baby.
I've struggled all day with the fact that "LIFE IS SO UNFAIR!" I know we learn this in kindergarten, but it is supposed to mean that some people are prettier and some people have more money or better cars or jobs, but not this! It is not supposed to mean that some people have perfectly healthy kids and don't even realize what a gift that is while others have to watch their children waste away in a hospital! WHY? Why can't all these kids survive and be healthy? With every child that gets sick or becomes an angel, a part of my heart breaks, and I just can't stand any more heartache. I don't know how some people do it. I know there are people that have much bigger problems than Jordan and have been here much longer than us, but I can't do it anymore.
Luckily . . . I only have to do it until next weekend. October 11th (my sister and brother in-law's anniversery) is our discharge day. As long as Jordan's counts look as good as they do right now, we are out of here. It is going to break my heart to leave behind some of the wonderful friends here, but it is going to do us so much good emotionally and financially to get back home . . . OUR REAL HOME!
I appologize for the frantic rambling and venting, but GOD IT SUCKS HERE! I'm sick of seeing sick kids. I want to see all of these kids healthy and playing like they are supposed too. Ok, enough. I'm sorry. Rejoice, Jordan is not showing any symptoms of this horrible disease and is well enough to go home next weekend. GOD IS GOOD, even though I don't understand him.

A huge thank you goes out to Laura, Ken, Nathan & Angel Jillian for the beautiful card, awesome T-shirt, and money. I will think of Jillian everytime I see a bug or a lollipop! Jordan is sending a big bear hug to you guys. Your Angel was right, we really needed to be cheered up! Thank you again. Also, thank you to Donna Butler and family for the Wal-Mart gift certificate. It was so nice to see you today and I pray that Bryan's breathing issues are solved soon.
Thank you to everyone who has signed the guestbook! We love hearing from you all.
Love,
Carrie
PRAY FOR BABY NOAH (www.caringbridge.org/hi/noah)! He is again in the PICU with a bacterial infection. Also, PRAY FOR TOMMY BENNETT (www.caringbridge.org/ca/bennettboys)! He is having a really hard time with transplant number three and I know his mother could use some emotional support right now.

DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Monday, September 29, 2003 8:55 PM CDT

Happy 11 Month Birthday Jordan!

Check out the information on the Run for Angel ^Reese^ www.runforreese.com

We can't believe Jordan is almost a year old. He has been through so much in his short life, but he has proven that he is very strong. He is requiring less and less oxygen, and we believe it is because he is losing (believe it or not) some of the steroid weight. His counts looked beautiful on Friday, so let's pray that they look just as great tomorrow. We hope that if Jordan's counts look good tomorrow we will set a date (again) for going home, but this time we are going to keep it. We will update tomorrow after our visit with Dr. K. Thank you for all of the supportive guestbook entries. They are so sweet and we appreciate all of the words of encouragement from our "true" friends! By the way, Harris Teeter sent us a grocery gift certificate and offered to pay for all of Jordan's doctor bills that were incurred due to him drinking the juice. They may want to reconsider when they see how much it costs to see a doctor for 5 minutes (roughly $190.00). Jordan had to see a doctor 3 days in a row not to mention how much each dose of the antibiotic cost (probably $80.00/dose). Oh well, I guess they will be awakened to the wonderful world of transplant.
Wish us luck tomorrow.
Love,
Carrie
PS PRAY FOR BABY NOAH (www.caringbridge.org/hi/noah)! He is again in the PICU with a bacterial infection. Also, PRAY FOR TOMMY BENNETT (www.caringbridge.org/ca/bennettboys)! He is having a really hard time with transplant number three and I know his mother could use some emotional support right now.

DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Saturday, September 27, 2003 3:43 PM CDT

Just a quick update Jordan's MRI & EEG tests came back with no signs of Hunters! YEAH!!!! Also, Debbie: I am fairly certain I know who you are, and I ask that everyone pray for you. I know you have a lot of pain. You lost your child unexpectedly & you are still angry and hurt. If you feel you need to take out your anger on someone else, go ahead; I'll be your target. I just ask that you e-mail it to me (iteach2u@hotmail.com) instead of involving my child and my husband. I knew your child and your child wouldn't want you to act like this in public. I will delete every message that you leave in our guestbook because I will not allow you to use my son as an outlet for your anger!
Thank you,
Carrie

Day 288

Hello to all-
Patrick & I would like to thank all of you for the positive and supporting messages left in the guestbook. We have erased the nasty ones because we are not going to allow someone to ruin our celebration of Jordan's progress. We ask all of you to not give these insensitive people any more attention. We've wasted enough time & energy on them. We ask God to forgive them because they know not what they do. These people obviously have no idea what we are going through and have no right to judge us.
That said, I want to thank so many of you for your support. We have learned who our true friends are and we appreciate your love and support. Even people we don't know have given tremendous support to us and we really appreciate it. I want to thank Yvonne & Glen Bell for the generous donation to our electric bill. It was an unexpected and much appreciated surprise. We also want to thank Jamie, Jennifer, & Taylor Hines for the care package & beautiful wedding picture. You guys have been so awesome and we are so thankful we have crossed paths. Thank you to Pam, Jeff, & Ginger for the letter and donation. We miss you guys tons. Thank you to Brenda Lee for your continued support and donation. You have been very generous & I now owe you two thank you cards. Thank you to Orlieu Harston for the very nice letter and donation. You all have been so nice & sweet to us and we couldn't do this without your support & generosity!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, September 26, 2003 3:55 PM CDT

We got good news today. Jordan's platelets were up to 171 and his hemoglobin is 13.6. This is great news and hopefully a step in the direction of home. It looks like maybe all those prayers are working after all.

I am going to address the guestbook entry even though it is against my better judgement. The reason is that I am afraid this isn't the only "friend" we have out there who feels this way. Since this is an issue that keeps me up at night I will address it. So nobody has to dig through our guestbook here it is.

Patrick--how can getting off your ass and getting a job (even part time) be a "difficult financial decision." It is time you act like a man and take care of your family instead of doing nothing to support them. How about putting Jordan first instead of your and Carrie's burning desire to come home to be close to your mommy's and daddy's? You are the mom and dad now so sell your house, move close to the doctors who are the best for your son where you can also get jobs. I know this sounds harsh, but I know you well. I also know that whether or not it has been put this blunt before this is what a lot of both your friends are saying back in Decatur. Be a man.
Reality
- Friday, September 26, 2003 2:42 PM CDT

Now it is my turn to be "blunt". Carrie and I came here in October 2002 with the assumption that no matter what the outcome of transplant we would be here between four to five months. Of course due to a lot of circumstances beyond our control we are here nearly a year later. I will address our job situation. If I were to take a job here full or part time, if I were lucky to find one since the job market here is nearly as bad as it is at home I would have to give up Jordan's insurance. Which by the way It is only by luck that I had the foresight to take out a secondary insurance policy through work on Jordan which I would also have to give up. This would only cost me roughly a thousand dollars a week just for normal routine things. I actually was packing to go back to Illinois to go to work in may when Jordan nearly died twice in two days. This was also about the time that my son was screaming uncontrolably every waking moment of the day.
Let's adress selling my house. You mean the house that I bought just before the economy where we live went to hell and oh yeah not to mention the fact that the north side of our house started to sink due to rain less than a year after we bought it. Would it surprise you our insurance doesn't cover that. Would it surprise you that I recently found out our house is worth a lot less than I paid for it right now.
Now you say you are my friend so what is your solution. I guess I could leave my son and wife here while I go back to Illinois and go back to work. That doesn't seem like such an unreasonable thing to do. I guess I don't really need to spend that much time with my son who for all anyone knows right now won't see his tenth birthday. Maybe not his sixth or first for that matter. I am sure my wife can handle things. My wife who is the strongest most beautiful person I know who cries herself to sleep often because her beautiful son is so sick or because several families we are close to have lost the battle with this god forsaken disease. The same son that I just laid down for a nap who is so bloated from his medications that he has to be on oxygen to breathe well enough to keep him from getting any more brain damage. I guess Carrie could have done that but she is sleeping right now because she had to stay up all night trying to keep his oxygen above 88% all night long then get up with him and not feed him because we had to take him to get an MRI today where he had to get a drug to put him to sleep which any parent with a child who has MPS will tell you that you are on pins and needles because anastesia does unusual things to our kids like kill them. My friend reality. You don't have to tell me what reality is. I could teach you a whole lot about reality. Me and all of my friends here who come here as a last chance to save their child from death, or in some cases like ours a life more horrible than death and then death. You seem to have all the answers so you tell me what to do. I am tired of making such hard decisions anyway.

All you need to know is that I love my family and I am doing the best I know how for them and I pray everyday it is the right thing. Sorry for rambling on.
Patrick

Wednesday, September 24, 2003 3:23 PM CDT

Day +285

Well, where do I begin. Yesterday was a very difficult day for me. As Patrick said in his entry yesterday we did not hear the news we wanted to hear and we have some very difficult financial decisions to make. Yet, we have tons to be thankful for. We have a pretty healthy boy who is still giving us many smiles and laughs, and tons of joy. Dr. K. basically said that she just didn't feel comfortable letting us go home this weekend. How can we disagree with that? She has treated hundreds of children and she does know what she is talking about. Jordan's platelets are still dropping very slowly (he was at 135K yesterday). Her fear is that this is exactly what he did before developing his hemolitic anemia back in March. She wants to watch his counts for a few more weeks and see where he goes. If he stays the same or improves, we will be able to go home in a few weeks (whatever that means). If he starts dropping again, we are here for God knows how long. This is basically precautionary. She would rather us be here and nothing happen, then go home and have major problems. We completely agree with her, but it is just getting harder and harder to be here both financially and emotionally. We did get some good news though. Jordan's Echocardiogram came back improved from last time. His heart muscle is still thicker than normal, but it is improved from the last Echo. We are thankful for this. We still didn't get his enzyme results back, but hopefully we will see something in the next few weeks.
I spent a few hours with Shawn Coble (Angel Reese's Mom) and Tracie Nicoll (Cam & Angel Douglas's Mom) today. It was nice seeing both of them again. We decided to go to lunch, and we talked for several hours. It was comforting to be able to sit at a table with two people (outside of my family) who completely understand and empathize with my frustrations and I never once felt I had to validate my feelings because they got it! We were three women with three different stories sitting around a table talking, laughing, crying, and sharing with each other, and it was so theraputic. The bond I share with these women is one that cannot be explained to anyone who has not been through transplant and I am glad that other parents don't understand. That means that they have never experienced these things and we pray they never do. Tracie & Shawn: thank you so much for the tears,laughter, and inspiration. It meant so much to me. Although you both say you are not strong, you are much stronger than you give yourselves credit for. I love you both.
I ask all of you to say extra prayers for Noah (www.caringbridge.org/hi/noah) who was sent back to the PICU yesterday. I can't tell you how much my heart breaks for this family. I know that Debbie and Greg are having a really rough time with this most recent setback and I ask that you all pray for them to have super strength to endure the PICU once again.
I also ask all of you to pray for Tommy Bennett (www.caringbridge.org/ca/bennettboys). He is suffering from mucositis and is having a hard time breathing without the help of oxygen. Pray that Tommy recovers soon. This is his third transplant, and he is such a fighter.
Please keep all the transplant kids and their families in your thoughts and prayers expecially the families of our precious angels!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, September 23, 2003 5:21 PM CDT

day 284

Well this is the update everyone is waiting for. I haven't updated in a while, but Carrie isn't really up for it. I will just come out and say we are not going home. Not this weekend. Not next weekend. Probably not the weekend after that. To make a long story short, Dr. K just doesn't feel like he has met the goals she wants him to to safely go home. His platelets dropped to 135 which is not a big drop but it is defnately in the wrong direction. You know the worst part is that we will be here a year soon. If someone had told us a year it would have been fine. We could have prepared for it. We were prepared for 4 months. Then the other 7 and a half have been given to us in weekly or monthly increments. Things aren't looking great and we are on the verge of having to make some really tough financial decisions. It is so difficult to know the right thing to do right now. I am sure Carrie will expound on our clinic visit later but like I said she really isn't up for it.
Patrick

Monday, September 22, 2003 8:04 PM CDT

Day +283

Well, tomorrow is the big day. Pray that Jordan's platelets are 140 or above so that we can make the trip home on Saturday as planned. Jordan's oxygen sats. are looking better, and he was off the oxygen and satting in the low-mid 90s much of the day today. The oxygen seems to have perked him up. He is moving more and smiling tons. We have even heard a few belly laughs the last few days.

We have a very special prayer request for baby Noah (www.caringbridge.org/hi/noah). He went to the PICU this weekend because of a blood infection. Last we heard he was doing better and back on 5200. He was supposed to come home (to the apartment) today, but we haven't heard anything yet. Please pray that the antibiotics work and he is back at the apartment soon.

Jordan has an EEG at 10:30 tomorrow morning, so it may be a long clinic day, but we will update when we get home to let everyone know our plans. I am a nervous wreck. I can't wait to go home but am scared to death to go. It is so bittersweet. Thank you to Diana Dial for the letter and check. We appreciate your generosity. Well tomorrow is going to be a long day so I am going to get to bed. Wish us luck!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, September 19, 2003 6:06 PM CDT

Day 280

NEW PICTURES!!!
Well, we survived the hurricane. There was a lot of wind, rain, and a few power surges, but we are all doing well. Jordan, Patrick, & I spent all day yesterday in clinic because Jordan's oxygen saturations were in the 80s during his CVC (crying vital capacity) test. We went through many blood tests and finally figured out what we have known for months . . . Jordan is having trouble keeping his Sats up because of the extra steroid weight. His body is compensating, but this is a chronic problem and we now need to keep him on oxygen constantly so his body doesn't have to work so hard. Jordan's platelets have been at 138 for the last two days, which is basically the same as 140 on Tuesday. Sue Wood (the nurse practitioner) said that this means he is stabalizing. We pray that he is at 140 or above when we draw labs on Tuesday. PRAY, PRAY, PRAY that he will stabalize and we can go home next weekend. We want to go home, but we want to bring home a very healthy baby! Other than that, we have been keeping busy with doctors appointments for Jordan's 9 month studies.
He looks good so far. His eye test went well, but he does have an astigmatizm (sp?). This just means that he may have to have glasses when he gets a little older. This is not a big shock considering I have terrible vision. They had to dialate his eyes and they gave him some cool sunglasses that we couldn't believe he kept on. Check out the new pictures. He has more tests this coming week and then hopefully (God Willing) we will be heading to Illinois. I will update after the weekend. DON"T FORGET TO SIGN THE GUESTBOOK! We love hearing from you!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, September 16, 2003 1:07 PM CDT

Day +277
Happy 1st Birthday Baby NOAH (www.caringbridge.org/hi/noah)!

Well, I wish I could tell everyone that we will be coming home next weekend for sure, but Dr. K. couldn't give us a date today . . . Jordan's platelets have been slowly trending down and Dr. K. doesn't want them to drop too low. He is still at 140K, but he was above 200K. She didn't lower his steroids this week because she wants to see if lowering the steroids too fast caused his platelets to drop. If his platelets are the same or higher next Tuesday, we can go home next weekend as planned. If they are at all lower, we are here for a few more weeks minimum. When Dr. K. said this today, I lost it. The tears streamed down my face. She asked what was wrong and I told her that we didn't have the money to stay another month. I told her we couldn't even pay the rent. She informed me that they have a fund for situations like this and if we do have to stay, they can help with the rent. That's great, but we still have tons of bills at home and all the utilities here, etc. I don't want Jordan going home too soon, but I'm just so sick of being here. I am so sick of getting my hopes up just to be crushed. Sometimes I wonder if I'll ever see my house, my friends, & my family again. Don't get me wrong, Dr. K. is 100% right. Jordan should not go home yet if his platelets are not stable, but I just want so badly to take him home. Several months ago I said jokingly that Jordan would be a year old before he went home. He will be 11 months old at the end of next week . . . little did I know. When we got here (last October) I remember thinking that March was so far away. Everyone puts so much emphasis on going home around that 100 day mark. We are quickly approaching 300 and may not be ready. Oh how naieve we were coming into this whole experience. We were not financially or mentally prepared for any of this . . . I guess no one can be. I ask all of you to please pray that Jordan's platelets go up. We want to bring him home HEALTHY! Pray for our strength and patience. Pray for our financial needs to be met. I thank all of you for being so supportive. It really does help to know there are people out there praying for us. Also, pray for Baby Noah. His 1st birthday is today and he had a rough night last night. Pray he gets tons of donor cells for his birthday!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Monday, September 15, 2003 4:23 PM CDT

Well, I have heard from Harris Teeter and got a huge appology, but I haven't heard what they are going to do yet because the manager is "out of town." If he doesn't call me back in the next few days I will make another phone call to the corporate office.
All of Jordan's cultures are negative so far! This is good news. Although his cultures were negative, he still had to get three days of antibiotics, which make him cranky. His soft spot has also been bulging the last few days. I am going to mention this to Dr. K. tomorrow at our visit. I hope it is just from the blood pressure and it will go back to normal once the higher blood pressure med gets into his system.
We hope this doesn't delay our going home, but i guess we'll know more tomorrow. We had a great visit with Shawn Coble. Thank you again for coming to see us. We love you so much! Shawn took some great pictures of Jordan and I will post them soon.
We have our nine month studies this week and next and hopefully will have some idea of the amount of enzyme Jordan is producing before we head back to Illinois. Pray that his enzyme level is in normal range. Well, I will update after our visit with Dr. K. tomorrow.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Phone cards
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, September 12, 2003 8:24 PM CDT

Day +273
Sorry, this is a long entry!
Things are going well here, but we had a little scare yesterday. Dr. K. suggested that we start feeding Jordan some baby orange juice to help keep his potassium levels up, so we bought some pre-packaged baby juice at Harris Teeter (grocery store). Yesterday, Connie fixed Jordan a bottle of juice and gave it to me. While I was sitting in the chair feeding it to him, Connie went to put the cap back on the juice. When she did, she noticed the expiration date on the juice was April 7, 2003 (5 months ago)! She told me to quit feeding him. I immediately called the doctor and store manager. The doctor told me that since Jordan was already on an antibiotic that he should be fine, but to watch him closely for signs of sickness. The store manager acted like it was no big deal. He really ticked me off because he had no compassion for the fact that his incompetence could kill my son! I explained to him that my child had no immune system and anything that makes him sick is potentially lethal for him. His response was, "Sorry mam. We check those shelves regularly. If you stop by the store and bring in the container I will replace it for you." This man obviously does not have children, and if he does Lord help them! I was not satisfied with his response, so I called the corporate office. The man I spoke with there seemed much more concerned and took my name, address, phone number, and all the information about the store and the product. He was very concerned that a baby food product sat on a shelf (expired) for five months without notice from a store employee. He assured me that this is not taken lightly and that the regional manager would be notified as well as their quality control team. He said that the regional manager should be contacting me within a few days. I then called Gerber baby foods to see if the juice was ok or if Jordan was going to be sick from it. The woman assured me that as long as it was sealed (which it was) then Jordan should be fine. She was less than thrilled with the store manager's attitude and is sending an inspector to that store to inspect not only the baby food, but the entire store. Now that's results! She also was very concerned about Jordan's health and is sending us some coupons. So, I finally thought I was satisfied with the end result . . .
UNTIL TODAY . . . Jordan had been cranky off and on all day and we thought it was just because he was tired. We had to make a "social" visit to clinic to see Dr. Schaboltz because he hasn't seen Jordan in a while. The visit turned into an actual clinic visit. When we got there Jordan's soft spot was bulging slightly (this usually means high blood pressure or cranial pressure). I had them check his blood pressure and it was 145/89. This is extremely high for a baby (especially one that is on two BP meds.). Dr. S. decided to give him a good look and prescribed line cultures (to check for infection), some lasix for the BP, and a strong IV antibiotic. With transplant kids, if an infection is suspected, we treat them for an infection before the test results are back so that we get a jump on the infection. Dr. S. thought this couldn't hurt considering the juice yesterday. We have to go to clinic tomorrow and Sunday for IV antibiotics and to check his blood pressure. Needless to say I am really angry at Harris Teeter and it's employees right now. I know Jordan doesn't have food poisoning like you and I would if we ate something bad, but any bacteria in the juice can cause an infection in him. It wouldn't bother us because we have immune systems. HE DOESN'T. We got back from clinic around 6 and Jordan was in bed at 8:00PM. He was so tired. I am calling Harris Teeter's corporate office tomorrow to report that he is now being treated for an infection. I want them to understand how serious this is, not just for my child but for the many other transplant children here. Some people's lack of concern for children baffles me! Anyway, I can't talk about it anymore because I am still too angry. I will let you all know if the cultures grow anything and what happens with the regional manager. Pray that Jordan does not have an infection and that the high BP was just extra fluid from the steroids!
I ask that everyone join in on Tuesday for the day of prayer for Noah (www.caringbridge.org/hi/noah). He will be one year old on Tuesday. Check out their website.
Thank you to Dave and April Kostenski for the letter and check. We really appreciate your generosity, and congratulations on Dawson! We didn't even know you were pregnant. I'm sure he and Jordan will grow to be buddies.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can receive O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Wednesday, September 10, 2003 7:58 PM CDT

Day 269
*****NEW PICTURES*****
Happy birthday to cousin Nick Davis yesterday!
Today was a good day. Jordan was in a great mood and really worked well with his speech therapist today. He even ate some applesauce, so he is making progress. He seems very interested in what everyone else is eating, but he just isn't sure what to do with food when it is put to his mouth. He really likes to chew on my fingers though.
We had a visitor this morning. Jordan's great-aunt Betsy came to see him, and Jordan showed off a little. He has to give kisses and giggles for our guests. He loves it when someone stops by. Speaking of visitors, we are having a very special visitor on Saturday. Shawn Coble, angel ^Reese's^ mommy is coming to see us. I talked with her today, and she was having a rough one. Today it has been six months since she lost her precious baby, and she is heartbroken (with good reason). I just can't imagine the pain she is feeling, so if you have a chance go to her website and offer some support. www.caringbridge.org/nc/reesecup Shawn-I love you and can't wait to see you on Saturday.
I want to thank Janelle Janssen for the letter and check. I am so glad you were touched by the radiothon and thank you for being so generous.
Thank you to Brenda Lee for the donation and letter. You sent the perfect gift and we thank you for your kindness.
Thank you again to Heather and Shad Mallady for the adorable outfit and wal-mart gift card. I know you have been busy with moving and it touched me that you still took time to do something so sweet for us. Enjoy your new house and have fun unpacking. I would feel sorry for you if I didn't have to do the same in a few weeks myself. I miss you like crazy and am sorry I didn't get home before you moved. I guess we will be making a trip to Nevada,Iowa someday soon.
Thank you to all for being so kind and generous to our family. I have learned that people are truly good and giving. I thank you all for your continued support. We hope to see everyone back in Illinios in a few weeks.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, September 9, 2003 10:01 PM CDT

Day +268

First things first, thank you to everyone for the supportive guestbook entries. They mean so much to us. They really do cheer us up!
Our "quick" Tuesday visits have again ceased. This was a 7 hour clinic day but I guess worth it. Jordan's hemoglobin was at 13.3 today. It has been a month since his last blood transfusion, and he tested negative for antibodies against his red blood cells. YEAH!!!!! This is such great news. His platelets were down slightly, but still in normal range, and his liver enzymes decreased slightly (good news). If his liver enzymes stay where they are or decrease in the next two weeks and Jordan does well with the lowered dose of steroids (now 7mg 2xs a day), we are coming home! Dr. K. said she is scheduling his 9 mos. studies for the next week and a half. If everything looks good at our Tuesday visit in two weeks, we can go home a few days after that (like that Friday). YEAH!!!!! We should no something more definite after next weeks visit.
Thanks for all the prayers about Jordan's fish test. It came back today and is holding steady. Although we wish he were engrafted 100% donor, we are happy that he is not losing his engraftment. Dr. K. thinks he will always stay at this level. We should get the urine enzyme test back next week. The blood enzyme test, which is more accurate, will not be back for another 6-8 weeks. We've waited this long for it, what's a few more weeks right? This is the important test. If Jordan is producing enough of the enzyme, he shouldn't have any symptoms of Hunter's syndrome. We ask that the biggest prayer for Jordan be that his enzyme level is normal! This is much more important than the percentage of the donor cells. We pray that the female cells carry tons of the enzyme!
Other than that, there is not a whole lot to report. We will keep you posted when we have an exact date for coming home, but it should be the third week in September. I can't even believe it. This whole experience has been a blur, but at the same time something that will be forever stamped in my mind. We thank everyone for the many prayers and generous support. I have many thank you cards to write out, and I am a little behind so please don't be offended if you haven't gotten yours yet. We appreciate everything that all of you have done for us and no good deed goes unnoticed! We love and miss you all. We pray we will see you all in a few short weeks.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Saturday, September 6, 2003 11:36 AM CDT

Hello to all-
We are doing well here, but anxious to get home and back to our normal lives (whatever normal is). Jordan's counts look great and on Monday it will have been a month since Jordan's last blood transfusion. We are grateful for this and hope that we will be heading home soon. We are going to plead with Dr. K. to allow us to go home as soon as possible. If we don't go home at the end of the month, we will have to move in with her. We have jokingly said this before to Dr. K., but this time we mean it. I just finished writing out bills, and we figured we have $400.00 left to last us until we go home and Patrick gets back to work. Man have our lives changed in the last year. We never worried about money before because it was just us, but now that we have Jordan we stress much more about that. I know everything works out in the end, but I can't help but worry about every thing all the time. Sorry for the venting, but writing out bills always depresses me.
I do want to end on a very positive note. Jordan's physical & Speech therapy went great this week. Both therapists have seen marked improvements in his development and we are forever thankful for their hard work and dedication! Oh, I almost forgot to tell you all that I was on the local radio station this week. Durham's 101.5FM They are hosting the Duke Radiothon. They ask many BMT families to tell their stories on air and they asked us to talk about Jordan. I was a little nervous, but it went well. Say an extra prayer that Duke children's hospital raises the money and awareness that is needed to help the hospital. These funds help all of the kids at Duke. Jordan's treatment would not have been possible without this fundraiser.
Love,
Carrie

DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
THIS IS WHY WE NEED YOUR HELP!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois ($760.00), car payments ($700.00), groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, September 5, 2003 1:51 PM CDT

Day T+264
Happy Birthday Yesterday to my brother-in-law Luke (Angie's husband)!
Jordan's counts still look awesome. His hemoglobin is at 13.0 today and his platelets are at 210K. On Monday, it will have been an entire month without a blood transfusion. We are so excited!His liver functions are about the same, but at least they are not going up and everything else is stable. His blood pressure is a little high, but it will come down as Dr. K. decreases the steroids a little more. We went in today to get a weight and blood pressure check. His weight is stable and going up (even with lowered steroids). He weighs 18lbs. 15 ozs. What a big boy! Anyway, hopefully on Tuesday she will lower his steroids again and talk about letting us go home. We will keep you posted and let you all know as soon as we know something.
Love,
Carrie

DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, September 2, 2003 9:04 PM CDT

Day T+261

Wow, I don't know what to do when we get out of clinic so quickly on Tuesdays. We went to clinic at 8:30, and we were out by 11:45. Dr. K. was speedy today! She gave us really great news. If Jordan continues to hold on to his hemoglobin (13.1 today!) for the next week or two, she will give us a date for departure! WE HAVE WAITED SO LONG FOR THAT! All of Jordan's counts look wonderful, but his liver enzymes are slightly elevated. They have been slowly creeping up over the past few weeks. Dr. K. lowered his Voriconizole to once a day in hopes to lower these levels again. She also lowered his steroids to 8mgs twice a day. Our nurse practitioner thinks his cheeks have gotten smaller already. Patrick doesn't agree, but we all agree he has a lot more steroid weight to lose. Jordan's weight is up despite Dr. K. lowering his steroids, so this is a good sign that Jordan is gaining real weight. He is at 18lbs. 13ozs now. Wow, he is getting so big. He hasn't gained any length in a while, but I have been told that children won't grow as much while on a high dosage of steroids. Anyway, we don't have much else to tell. We are going to keep Riley (Cody Hoffman's brother) tomorrow for a few hours while Cody is having surgery. We ask that you all say an extra prayer for Cody (www.forcody.org). Eleasha (Cody's mommy) is here by herself, and we are happy to be able to help her out. We missed Noah at clinic today, so I haven't gotten a recent update, but continue to keep him in your prayers as well as all the other transplant kids. Princess Madi is going home tomorrow, so stop by and wish them well on their trip (www.caringbridge.org/nc/princessmadison). We got some great pictures of her and Jordan in clinic today and I will post them soon. We drew another fish (DONOR) test today, so pray for at least 50% donor cells for Jordan (we would love 100%, but we will be happy with no loss of donor cells). The enzyme (urine) test should be back in about 2 weeks. The enzyme (blood) test was once again sent to the wrong lab (this will make it three times now), but we will draw a new one next week. Hopefully we will know something by the time we go home. Well, it is getting late, so I am off to bed.
Love,
Carrie
P.S.
Thank you to Donna and Orlan Janssen for the money and coupons. As always we can use them!
Thank you to the Aumann's from Nokomis for the donation to Jordan's account. We appreciate your generosity.

DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Sunday, August 31, 2003 9:38 AM CDT

Day T+261

Jordan's counts look great, and he is doing awesome! His hemoglobin jumped to 13.4 yesterday! This is a great sign because he is holding on to his counts even though we are lowering the steroids. We don't have to draw labs again until Tuesday. We are enjoying our break from clinic. Hopefully in another week or so Dr. K. will start talking to us about going home! We miss everyone so much and can't wait to bring a healthy boy home to meet you all. Well, things have been very uneventful here, so we are enjoying the boredom. Please keep Jordan and all the other transplant kids in your thoughts and prayers, especially Noah!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, August 29, 2003 10:01 PM CDT

Day +259
Happy 10 month birthday Jordan!
Happy B-Day yesterday to Papa Mike!
We made it back to the apartment after a few days away from Durham. It was so nice to see Wes & Erin (and their family) and wish them the best of luck with the wedding tomorrow. Dr. K. allowed us to take a short trip because Jordan looked so great on Tuesday and we were going to a place very near to a wonderful hospital. We couldn't go to the actual wedding because there would be many guests (and germs), so we went to visit before the big event. Jordan finally got to spend some time with his Aunt Kris. She hadn't seen him since December. We love and miss you Kris. Jordan continues to do awesome and amaze us all. We are praying that in the next few weeks Dr. K. will start talking about us going back to Illinois. On Monday it will be three weeks since Jordan has needed a blood transfusion. Thank you to everyone for all of your prayers and support. We couldn't do this without all of you.

Thank you to Suzanne Little for the gift card & nightgown. It looks so comfortable, and I can't wait to wear it.
Thank you to Alex & Jill for the gifts for Jordan. They are adorable.
Please keep baby Noah in your prayers (www.caringbridge.org/hi/noah). His parents fear that he is again losing his engraftment. They are really struggling to keep up their faith and spirits. Pray for their strength and donor cells for Noah!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, August 26, 2003 8:17 PM CDT

Hi everyone! This is Carrie's mom Sheila. Patrick, Carrie and Jordan have taken a much needed time off. They are visiting some family friends in S.C. So they have elected me to do the update. First of all Jordan is doing fantastic. His hemaglobin is now 12.6 which is an increase from yesterday. Way to go Jordan!! His platelets remain at 247 k and Dr. K lowered his steroids again. To everyone that has supported them I just want to say thanks. Without your financial and prayer support they couldn't have gotten this far. Hopefully Jordan will be home for his first B-day. They will update again when they get home in a couple of days.

Our Love to all,

The Horton's and Yeske's

Sunday, August 24, 2003 7:22 PM CDT

Day +254

Yes, no news has been good news. We heard some of the best news in a while this morning. Jordan's hemoglobin went from 11.5 on Friday to 12.3 today. This is the first time Jordan has made a significant increase in his hemoglobin since March (when he first got the anemia). We were so happy we cried when we heard the news this morning. Jordan's platelets are also doing awesome at 247K. He just continues to amaze us everyday. It will be two weeks tomorrow since Jordan has needed blood, and if he continues his current trend we will be a month transfusion free in no time. With him doing so well, we think that Dr. K. will lower his steroids again on Tuesday. We are hoping he can get off the high dosage soon. Thank you, Thank you, Thank you for the many prayers. They are working!

We have a very special prayer request for Noah (www.caringbridge.org/hi/noah) and his family. They heard some heartbreaking news a few days ago. Noah's donor cells have decreased. They have been down this road before and are scared to death for their son. Please pray for the doctors to have knowledge about what to do next. Noah has made such amazing improvements in a short time, and we want the best for him and his family. Also pray that Greg (Noah's Daddy) can get everything worked out with his orders(ARMY) so that Noah can be in the best place for treatment. Greg and Debbie we are praying that the test was flawed and that you will be celebrating a higher donor cell count soon. We are also praying for your continued strength and endurance. We love you and if you need anything, holler. We are close!

Pray for all the transplant families here and home and for the families who have lost their precious angels.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Thursday, August 21, 2003 9:04 PM CDT

Day +251

Thank you all so much for the supportive guestbook entries. Those words mean so much to us! We are happy to report that Jordan has gone 10 days without needing blood and his counts look wonderful! His hemoglobin was at 11.6 yesterday. He is doing so well that we didn't even have to draw labs today. It has been five months since Jordan hasn't had labs drawn every day. This is so encouraging.

Although I am upset about not being able to come home yet, I am thankful that Jordan is doing so well now. I know that this is the best place for him. As much as I want to go home, I am comfortable here with the doctors and hospital. If there is any question about something with Jordan, I e-mail Dr. K. or call the clinic and have an answer in minutes. The wonderful doctors, nurse practitioners, and nurses make the medical part of our journey so much easier to deal with. The support from all of you make the emotional part much easier to deal with. Thank you Daddy (Dale) for our talk yesterday. It made me feel much better. I love you and Mom both and can't wait to see you (hopefully in another month or so) with a healthy baby boy. By the time we go home Jordan will be nearly one year old. God, where has the time gone? I can't believe it. It's so odd that I feel as if I've been here forever, but at the same time Jordan has grown so quickly. Anyway, I know the time will go quickly and soon I will see many of you on good terms. I miss and love you all. Say an extra prayer for baby Noah (www.caringbridge.org/hi/noah). He is still having trouble keeping his airway clear. He has fought so hard, and we want only the best for him and his family!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, August 19, 2003 2:11 PM CDT

Day 249
****NEW PICTURES**** Aunt Kris, I hope you are happy!

Hello again. I know everyone is anxious to hear what Dr. K. had to say today . . . Today's clinic day was even shorter than last week. We got there at 8:45 & were out by 12:05. The nurses were once again amazed. Even though the day went quickly, we were a little disappointed with the news.
We will not be coming home until the end of September at the earliest. We are heartbroken to say the least. We are worried about what we are going to do. How are we going to pay the bills for another month? How are we going to be away from our friends and family another month? If we go home at the end of September, it will be two weeks shy of an entire year away from home. When we were looking at a total of 6 months starting this process, it is a little more than upsetting that we have been here twice as long as we originally thought.
Worries aside, we have so much to be thankful for. Jordan's counts look awesome. His hemoglobin is at 11.5, and platelets are at 215K (the highest they've ever been). The rest of his chemistries look great and Dr. K. even lowered his steroids a little. So, why aren't we going home?
In the words of Dr. K. "it's not safe for him to go home at this point." She wants him to go a month without needing a blood transfusion. She wants him to be on a lower amount of steroids, and they have to be lowered slowly. His immune system is still (as of June 11thish) only working at 5f normal. Now that he is off the immune suppresents (other than the steroids), this should be a little higher, but he is still very much at risk for infection.
We were so wanting to tell everyone an exact date (relatively close to now) that we were coming home, but once again we heard, "at least another 3-4 weeks." Dr. K. has been telling us this over and over again for the last several months. It is just heartbreaking. I don't want to be here an longer, but I know at this point it's the best thing for Jordan.
Please keep Jordan and the other transplant families in your thoughts and prayers. We all need them!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00 /month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Sunday, August 17, 2003 9:23 PM CDT

Day +247

This is going to be a very quick update. Jordan is still doing so well. His hemoglobin was 12.1 today and his platelets are up to 176. We are so happy with his progress. Thank you for all your continued support and prayers. It means so much to us!
HAPPY BIRTHDAY TO GRANDMA SHEILA TOMORROW! We have officially missed all the family memeber's birthdays this year, but we will celebrate the rest of them with you all from here on out. We love you and miss you all.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, August 15, 2003 8:27 PM CDT

Day T+245

Hello to all. Things are going well here. Jordan still hasn't needed blood since Monday, and his hemoglobin is at 12.9 today. His platelets have gone up again to 115K. He had to go into clinic today to get Potassium. His level was a little low on Tuesday and lower today. I think it is from the frequent diapers he has had the past few days. They aren't really runny, but not exactly normal. I asked the nurse practitioner to run a virus check on a stool sample this afternoon. We should get the results in a few days. Other than that, Jordan has been pretty happy and looking great.
Thank you to Beth Anne Biggs for the card. Patrick and I will enjoy a dinner out together. Thanks so much.
Thank you to Mary Boyer for the gift certificate. We really appreciate your generosity.
Thank you to all who have signed the guestbook. Those messages mean so much to us. If you come by, leave a little message to let us know you're checking on Jordan. He will appreciate reading them some day, and we love reading them now.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Wednesday, August 13, 2003 10:40 AM CDT

Day +243


What great news! Jordan's hemoglobin was at 14.5 yesterday (after getting blood on Monday) and he is at 14.2 today. I can't believe that he is doing so well holding on to his cells. We also figured out that he SATS much better when he is not flat on his back. Sue, I agree with you; the extra steroid weight is too much for him. Jordan's clinic visit went very well yesterday. We broke an all time speed record. We got to clinic at 8:10am. Jordan was done with all his infusions at 11:30am and we saw Dr. Kurtzberg at 12:00pm. We were completely done at 12:30. We were amazed. Dr. K. was really happy with Jordan's progress, but raised his steroids back to 11mg 2 times a day because his platelets were a little low. She didn't want them lowered for a few more weeks. Then, she will start wiening them again. His plateletes came back up today with the increased dosage. I guess Dr. K. knows what she is doing. Jordan still has antibodies against red blood cells, but not as many as he had before. His body can more easily keep up with the break down of cells now. His blood also showed a few immature red blood cells in it, which means his bone marrow is producing plenty of RBCs on its own. This is good news! Dr. K. also put Jordan on an amino acid medication that will help him build muscle. This is an over the counter med. that will try to counteract some of the muscle weakness from the steroids. We like this idea.

Speech therapy came for the first time today, and it went well. She recommended that we have a swallow study done on Jordan to see if that is part of the problem. Jordan will hold medication and baby food in his mouth and refuse to swallow it. The only thing he will swallow is formula. The therapist wants to make sure that their are no obstructions or other problems. She also had some good ideas on how to stimulate him orally. She explained that the reason he has lost much of his oral communication is again muscle weakness. We were very glad to hear this. Patrick and I have been worried that Jordan suffered permanent damage from being in respiratory distress for so long. The therapist reassured us that more than likely, it's the steroids and not anything permanent. She told us about certain toys to get for him to stimulate chewing to get those muscles working again.

Things are looking up all around. We are happy that Jordan is doing so well and are looking forward to implementing some of the ideas from both speech and physical therapy. The more help Jordan gets, the faster he is going to get back to where he was and beyond. Our spirits are being lifted and our hearts are singing with joy over our son's improvements. We thank everyone for the many, many prayers. They are working. We see amazing strides in Jordan everyday! Thank you, Thank you.
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Monday, August 11, 2003 10:19 PM CDT

Day T +241

Hello to all! We are doing great here. Jordan finally had to get blood today (9 days!). He was only at 8.3 this morning, but the consensus was to transfuse him today because he has to get IV meds. in clinic tomorrow. Since blood is such a large volume for his body, IV meds. on top of blood is really hard on his body. We opted to do blood today and IVIG & pentamadine tomorrow. Jordan also had a chest x-ray done today and it was totally clear! We believe that Jordan's oxygen problems stem from the added steroid weight. We are trying different positioning of his body while he is sleeping, and so far it is helping him keep his SATs up! Pray that this is the problem and that we can get him off oxygen for good. Right now he is still needing blow by when he is sleeping. Other than that, Jordan is doing awesome, and we are so pleased with his progress. Please continue to pray for Jordan and all the other transplant kids. Cody is improving and we will hopefully see him in clinic tomorrow. Jillian (www.caringbridge.org/oh/jill) has had a rough time, but is improving too.
A BIG THANK YOU goes out to Dan, Sue, & Tucker Hall for the wonderful care package. Thanks so much! You guys are too sweet! I know you guys know how we feel (since you were also here for 10 months). Thanks for the pick-me-up!
Love,
Carrie
DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Sunday, August 10, 2003 9:58 AM CDT

Day +240

Things are going well here. It has been 8 days since Jordan has gotten blood. We haven't gotten his counts back for today yet, but I don't think he will need blood. His counts have slowly been going down but not like before. Since he last got blood he has been at 14.5, 12.1, 10.8, 10.5, 9.9, 9.9, & 9.4 (we transfuse at 8.0). We couldn't be happier with these improvements. Jordan's platelets are also staying steady at over 100K. We just pray that this means he is getting better and will be able to go home soon. The only other thing we are working on is getting these steroids down. The longer he is on steroids, the more side effects he can experience. The main one right now is extra weight. This weight is preventing him from building his muscles. His Physical therapist says we will see a huge improvement as the steroids get lowered. She explained that Jordan reaching for a toy can be compared to me doing ten push ups. It takes that much effort for him to even lift his arm. He is still really weak. We pray he gets stronger. Speech therapy is supposed to come next week to help Jordan become more vocal and overcome his mouth aversion. This is a result of all the oral medications and being intubated (on the vent.). Speech therapy is supposed to have some good ideas on how to teach Jordan to eat things besides formula. We hope it helps. Well, I hear Jordan stirring around in his crib, so I have to go. Please remember Jordan and all of his transplant friends in your prayers. Cody is doing better, but still needs extra prayers. Also, pray that the doctors can figure out what is causing baby Noah (www.caringbridge.org/hi/noah) to have increased mucous. His parents are having trouble keeping his airway clear. We pray he improves quickly!
Love,
Carrie

DON'T FORGET . . . If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00+/month
This is not counting all the expenses of our house in Illinois, groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Friday, August 8, 2003 12:18 AM CDT

Day T+238

Hello to all. Sorry we have been slow on the updates, but we have been enjoying doing nothing! We haven't had to go to clinic, and Jordan hasn't needed blood since last Saturday. I just got his labs today, and his hemoglobin is exactly the same as yesterday. He is at 9.9. He doesn't get transfused until he gets down to 8.0. We are soooo happy! Tomorrow it will be a week since Jordan has needed blood. This is the longest he has held out since before he developed the antibodies. God is Good! Jordan's platelets are doing well at over 100K and his chemistries look stable. The only thing that is a little elevated are his liver functions. The doctors believe that this is a result of the combination of meds. and breakdown of cells. Since the doctors know what is causing the higher numbers, they are not concerned. I hate to even say that things are looking up (for fear that something will happen), but I am just so happy that I have to say it! Hopefully we will be able to discuss going home soon . . .although we are not getting our hopes up. We would rather stay here a month longer than we need to than go home a day earlier than we should! Well, Jordan's physical therapist will be here in a few minutes, so I better go. Please keep praying for Jordan and all the other transplant children. Say an extra prayer for Cody Hoffman (www.forcody.org), who is having a major setback and is in the PICU at home right now. Hang in there Cody. We love and miss you!

I have a special favor to ask all of you. If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
Love,
Carrie
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00/month
This is not counting groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Tuesday, August 5, 2003 8:03 PM CDT

Day +235

Today we got good news! We are almost afraid to tell everyone for fear of jinxing ourselves, but we are so happy that we have to share good news. Jordan's antibody test (the antibodies are causing his anemia) usually comes back at +2 or +3 (strongly positive), but today he came back at +1 (slightly positive). This is such good news because it proves (at least temporarily) that . . . JORDAN IS GETTING RID OF HIS ANTIBODIES! He is slowing down and his body is healing itself! We are so happy, especially since this news came after Dr. K. stopped his immune suppresent drugs, chemo drugs, & lowered his steroids. Thank you all for your prayers! They are being answered!
Our day started out early (8:00am)at Dr. Escolar's office in Chapel Hill. Dr. Escolar is a developmental doctor. She has evaluated Jordan twice before. Today, Jordan did not want to cooperate. He woke up at 5:00am, and by 9:00 this morning he wanted nothing to do with showing off his physical skills. He was tired and cranky. Needless to say, he scored poorly. We completely expected this due to his recent setbacks and large doses of steroids. Dr. Escolar assured us that she is not worried about Jordan's development because she knows that it is caused by his recent hospital visit and the steroids. He is so big that he can't carry himself. She assures us that as his steroids are lowered, we will see much improvement in his motor skills. She said that mentally he is fine. He is just really weak. However, she was impressed that he was sitting up quite well on his own. He is becoming more vocal as well, which we are enjoying very much.
We finally got done at Dr. Escolar's and went to clinic about 2:00pm. Jordan only had to get IVIG (immune builder), and we were done with everything a little after 4:00. Dr. Szaboltcs (Dr. Paul as he calls himself to Jordan) was filling in for Dr. K. and he made us very happy. He didn't come to see us until 6:15, but he gave us good news so we forgave him. He lowered Jordans's steroids a little and stopped his methadone. Boy are we glad he is no longer on the methadone. Dr. K. had told him to stop the rituximab(chemo drug) that they were using to treat the antibodies. Dr. Paul explained that Jordan has gotten enough of the drug to last a lifetime and giving him more is not going to change anything. This means two hours less in clinic on Tuesdays (or at least in the day hospital for transfusions). All in all, today was a great day. We couldn't be happier with all of Jordan's improvements and pray that he continues to do well! Life is good today and that's all we can ask for. Thank GOD for good days!
I have a special favor to ask all of you. If you are able to donate blood, please do! There is a huge shortage of blood right now. These transplant kids need blood and platelets frequently and need your help. PLEASE, PLEASE, PLEASE DONATE BLOOD, ESPECIALLY IF YOU HAVE O NEG BLOOD TYPE. Because Jordan is half donor/half host cells, he has to be transfused with O NEG so he doesn't have a reaction to the blood (anyone can recieve O NEG blood)!
Thank you!
Love,
Carrie
****We have been so thankful and fortunate that people have been so generous, but we are still here and things are adding up.
Rent: $1,105.00/month
Utilities:$300.00/month
This is not counting groceries, copays on prescription drugs, gas, and anything else that Jordan needs like diapers and formula.
We hate to ask for help, but anything that anyone does or gives is appreciated and welcomed. ****
Here is a list of Needs:
Diapers (pampers or huggies size 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid (We are still waiting to hear back from Social Security on our appeal)
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Love,
Carrie, Patrick, & Jordan

Sunday, August 3, 2003 9:52 PM CDT

Just a quick update:
Jordan is doing well. He got blood yesterday after holding out for 6 days. This is a record so far, but we are trying not to be too optimistic. When Jordan is doing really well, we are always wondering when something bad will happen. I got home after a very long day of missed and delayed flights on Friday, but finally made it home on Friday night. It is a long story and somewhat amuzing, but I am too tired to go into details at the moment. We will update tomorrow after our Tuesday clinic visit. I had a great time at home and was so happy to spend time with friends and family. I squeezed so much into the 2 days I was home. I really enjoyed seeing everyone, but was happy to get back to Jordan and Patrick. Hopefully we will be going home for good soon. Until tomorrow evening . . .
Love,
Carrie

Thursday, July 31, 2003 10:30 PM

I finally got Jordan to bed a few minutes ago. Normally I would not update, I would wait for Carrie to get home but I have some exciting news. Jordan's hemoglobin dropped .1 today from yesterday and his platelets are staying up near normal. This is such great news. It is way too early to speculate why his hemoglobin isn't dropping fast. It could be the extra steroids kicking in, adjusting his meds or just a good donor last time he got blood. Also there is nothing to say he couldn't drop overnight and need blood in the morning, but he he has gone since sunday, and it has been a long time since he has gone this long. I am cautiously optomistic and scared to death. I feel like this episode of Married with children I saw once where Al said he had the "Bundy curse" where no matter how good things were going he could never say so because then everything would go straight in the crapper. I will say this though Jordan and I miss his Mommy deeply and we can't wait for her to get home tomorrow.

Patrick

Wednesday, July 30, 2003 9:20 PM CDT

Things are going well here. Jordan's platelets went up, and he is losing his hemoglobin more slowly. Jordan and I miss his mother greatly, but we are doing OK. Please take a look at the picture of Jordan and Harmen. Best friends. I don't think Jordan's Grandpa hated it either.

Tuesday, July 29, 2003 7:45 PM CDT

Day +228

Happy 9 month birthday Jordan!

Clinic sucked today! It started out great, but . . . We got there at 9:40 and were back in Rainbow day and starting infusions at 10:00. At 2:00 we were finished with everything and waiting to see Dr. K. Our nurse came in and asked if we could go do an echocardiogram while waiting for Dr. K. "it will only take a few minutes and you will be seen right after you come back." That's the kiss of death at clinic. We went and did the echo., but we went back to clinic and waited for almost two hours to see Dr. K. We finally got home a little after 5:00. Needless to say, it was a long day.
Dr. K. lowered Jordan's methadone to .1mg. He will be off this in a few weeks. YEAH! She also lowered his steroids to 11mg two times a day instead of three. We are still concerned about Jordan's oxygen saturations. He is starting to drop even when he is awake now. Dr. K. agrees that he is getting worse. She thinks that it could be because of his enlarged heart muscle, thus the echo. today. If this is true, we will start yet another medication to help with this issue. Dr. K. can't take Jordan off the steroids completely because of the anemia. We just have to keep treating things as they appear I guess. At least this will explain Jordan's O2 sats dropping, since his lungs are "clear as a bell." At least this can be treated. Other than that, things are going well.
It has been brought to my attention (mean debbie) that we forgot to thank a few people in the Nokomis paper. Please accept our appology if we left you out. It was simply an oversight, and we are sincerely sorry if we offended anyone. That was not at all our intention. We want everyone to know that we appreciate all the support and donations that we have been given throughout the fundraisers and our journey here in Durham. We thank everyone now publicly and truly appologize if we haven't thanked you personally!

Jordan was so worn out from clinic that he fell asleep at 7:00 tonight, and I have to go wake him up to give him his meds., so I will have to sign off. I will update again when I get back from Illinois unless Patrick decides to update while I am gone. Until then. We love and miss you all and thank you for all your continued support!
Love,
Carrie
ATTENTION TRANSPLANT FAMILIES:
If you all have any left over medical supplies that you can't use (gloves, masks, flushes, syringes, dressing change kits, etc) let me know. Don't throw them away, even if they are expired! Ellen Bowman's husband Brian can use them for his nursing school. They don't get funding for supplies, so the nurses are learning procedures by recycling supplies. If you aren't going to use them, give them to me or e-mail me and I can tell you where to send the supplies. Thanks!

Monday, July 28, 2003 10:16 PM CDT

Day +227

October 15th was such a long time ago. That was the day that my Mom & I came to Durham. We thought Jordan was going to be born any minute, so we flew out here and Patrick drove out with all of our stuff. Little did we know that he was going to take his time and be forced out. I was induced on October 28th like orginally planned and after 24 hours of labor the doctors finally decided to do a C-section at 3:33 PM on October 29th. Jordan was stubborn from day one. In a little less than an hour he will be 9 months old. WOW! I can't believe that he is that old; he is growing so fast. Yet, at the same time I feel like we are at a standstill. We pray everyday that Jordan is better. We see other kids his age crawling, babbling, even walking. We long for Jordan to do all these things. I realize Jordan has been through so much, and it is amazing that he is where he is. It's all just so frustrating. I want my son to be able to do things a normal child can do. I don't want him to be too weak from these terrible steroids. I want him to laugh more, and cry less. All these things run through my mind every minute of every day . . . and then my thoughts turn to all the families who have lost a child or both of their children from transplant and these horrible diseases. I feel selfish and guilty for wishing these days away, while those parents would spend every day for the rest of their lives in this place if it meant their child could live. This has been a very long journey, and although we have no idea when it will end I am thankful for it. I am thankful for the doctors and nurses at DUKE, even though I get frustrated with them. I am thankful that my child can look at me, cry for me, and smile at me. I am thankful for the children here and the families we have met through this entire experience. I am thankful for all of you. Your support makes this life bearable. There are days that are so long and draining that I want to give up, but then I read the guestbook or get a letter and I feel encouraged to go on.

I'm sorry for rambling, but I was just sitting here watching Jordan sleeping and all these thoughts ran through my mind. Sometimes the only way to let you all know what it is like here is to tell you exactly what I am thinking, even though my words can't begin to show you this life.

Anyway, things are going well. I am getting more and more apprehensive about leaving for 2 days. Although I desperately want to go home, I've never been away from Jordan for more than a few hours. I know that I will be calling several times a day. It's not that I think Patrick can't handle it, but I am a control freak and it is hard for me to give the responsibility to someone else. I'm sure I will survive, but it will be difficult.

Oh, I guess I should tell you that Jordan is doing well. His hemoglobin was up to 13.3 today after getting blood yesterday. His platelets were down just a little, but not low. The rest of his counts looked great. We are really happy with this, but pray that Jordan can keep up his hemoglobin without the huge doses of steroids. We have our big clinic day tomorrow morning, so I guess I should go and get some rest. I will try to update tomorrow evening and let you know how our visit with Dr. K. goes.
Until then, take care.
Love,
Carrie
ATTENTION TRANSPLANT FAMILIES:
If you all have any left over medical supplies that you can't use (gloves, masks, flushes, syringes, dressing change kits, etc) let me know. Don't throw them away, even if they are expired! Ellen Bowman's husband Brian can use them for his nursing school. They don't get funding for supplies, so the nurses are learning procedures by recycling supplies. If you aren't going to use them, give them to me or e-mail me and I can tell you where to send the supplies. Thanks!

Sunday, July 27, 2003 10:16 AM CDT

Day 226 *** NEW PICTURES***

Hello to all. Jordan is doing well. He hadn't needed blood since Thursday, but needs to get transfused this afternoon. He is not dropping as rapidly as before and he is only at 8.3 today, but if we wait until tomorrow, he will be at 6 or 7 and we don't want him there.

We are happy with Jordan's improvements, but wish we didn't have to use the higher dosage of steroids to achieve this result. Dr. K. is holding Jordan's immuran (immune suppresent drug) until Tuesday because Jordan's platelets were dropping again. Since we held the drug his platelets are going back up. I imagine we will be switching medications once again. That's ok, as long as he feels better we are happy.

He has been in a very good mood. He is sleeping like a "normal" baby (whatever normal is). He sleeps for 7-8 hours at a time at night now. Up until about a week ago he was up every two hours. None of us got any sleep, and we were all pretty grouchy. Now Jordan is taking good naps and sleeping well at night, and we are all in much better moods.
Well, there's not much else to tell. Things are going well, and hopefully we will be going home (for good) sometime in the near future. We are now looking towards the beginning of September. We are not going to make any plans until the doctors tell us 100yes, you can go home." Well, other than that, we are still bored, and that's a good thing. I can't wait to see everyone on Wednesday and Thursday. I will only be home for one whole day, but I want to see as many people as I can. If you want to meet up with me, e-mail me (iteach2u@hotmail.com) and I can let you know where we are meeting up.

This is mostly for the transplant parents: If you all have any left over medical supplies that you can't use (gloves, masks, flushes, syringes, dressing change kits, etc) let me know. Don't throw them away. Ellen Bowman's husband Brian can use them for his nursing school. They don't get funding for supplies, so the nurses are learning procedures by recycling supplies. If you aren't going to use them, give them to me or e-mail me and I can tell you where to send the supplies. Thanks!
Love,
Carrie

Friday, July 25, 2003 12:17 AM CDT

Well, we went 2 days without getting blood. Jordan got blood Monday afternoon, and he didn't need it again until yesterday afternoon. He was only at 8.7 thursday morning, but the doctors didn't want him to drop really low overnight, so they decided to transfuse him anyway. The steroids seem to be the only thing that really helps Jordan hold on to his red blood cells, yet we can't keep giving him the high dosages because his heart muscle is already enlarged. It's a catch 22. It seems everything about transplant is like that. The doctors give one med to treat or prevent a problem, and it causes another problem so you are given another med to treat the side effects from the needed medications. Jordan is headed in the right direction as far as medications are concerned, but it is still frustrating. Patrick and I just want him to be better.

Despite everything, we still find humor in everyday things. As a matter of fact, my friend Ellen (who is going home tomorrow) made me laugh yesterday. She bought Jordan, Noah, & her son Andrew tin cups. I knew exactly why. I laughed and said I would write "Jordan's beggin' cup" on the side. She can always make me laugh. I will miss you terribly Ellen. Andrew has a special place in my heart and I will stay in touch with you all. Simon, take good care of your mom & brother and enjoy riding your bike and doing normal "kid" things. I know that you will!

Speaking of normal . . . I will be making a short trip to Decatur next week. I am excited to get a piece of normal, but am dreading leaving my son & husband. I need to take care of a few things at home & work, so I will be going home on Wednesday morning. I will be in Decatur Wednesday afternoon. On Thursday I will be at St. Teresa at least part of the day. If anyone wants to see me, you can visit the school, or call my cell phone. I will be returning to North Carolina first thing Friday morning. Patrick is taking on the task of all Jordan's meds. Thank you Patrick. You are the best husband. I love you.

Hopefully I will be able to see many of you on my very short, short trip. Hopefully next time I go home I will be able to take my healthy son.
Love,
Carrie

Wednesday, July 23, 2003 2:54 AM

It is technically wednesday but for the sake of argument we'll say it is tuesday night. Jordan has his long clinic todaywhich actually only turned out to be about 5 hours or so. Mom and Carrie went took Jordan. I stayed home and cleaned. Nothing really eventdul happened. Jordan's platelets slipped down into the 70s. God I hope he han't developed an antibody in his platelets again. Dr. K saw him and said he looked great. The only thing she did( I say only, but this is kind of a big deal) is upped his steroids a lot through saturday. She thinks this will help with his stomach, and we know it will help with his hemoglobin. Maybe this will keep us from having to go get blood so often this week. At some point this evening my left knee started to hurt really badly. I think I have arthritis. I am the oldest 27 year old in the world. That is about all for today so until next time.

Patrick

Sunday, July 20, 2003 8:28 PM CDT

Well everything is going fair. Jordan needed blood both Friday and Saturday. It is looking hopeful that we won't be making a midnight trip to the BOPP room for blood tonight. It will be bed-time soon and he is still sort of pink. Of course he is also not able to keep down his meds very well. He has thrown up twice tonight. Thank god he is eating well. He does good with his formula, but not so great with his meds. We will have to figure out something soon or he will be going back to IV for most of them. Mom and Dad came back today. It is nice to have some help with all the things that are going on. For the people out there who can't seem to picture what our days are like let me try to clue you in. Jordan wakes up about 1am, 3am and 5 or 6am. Carrie and I usually decide on the fly who is going to get up with him, but one way or another neither of us get any sleep to speak of because when he is sleeping if he moves his head away from his oxygen or moves his hand the alarm goes off on the pulse ox. This happens maybe 2 or 3 times a night. About 8am Carrie draws his blood and I take it to the hospital. While I am gone Carrie gets together all of his medications(oral and IV) and starts to give them to him. This is usually all done by 9:30 assuming he doesn't start throwing up. We spend most days going in to clinic for at least six hours for benadryl, blood, and the lasix. If we don't have to go in to clinic on rare occasions we spend the day keeping a very close eye on him to make sure he isn't getting pale or lethargic. On those days we try to work with him as much as possible because he is developmentally behind due to his last hospital stay. In the evening about the time we usually get home from clinic Carrie has to start all his meds again, and he usually throws up something so when we finally do get his meds done we are giving him a bath and cleaning the furniture or floor and of course washing clothes. We finally get him to bed at 10:30 or 11pm. Then it starts all over again. Now throw in My compulsive cleaning, meals,lots of laundry, grocery shopping, and trying to figure out how to pay the bills we have a really full day. And you know what, however that may sound to you I love my life because every night when my head finally hits the pillow for better or worse I thank God I got to spend another day with my family.
Patrick

Friday, July 18, 2003 11:04 PM CDT

***Due to the problems with ezboard the new message board is open to eveyone. I hope it doesn't get abused***


Hello all-
Well, Mom, Dad, & Cherie made it home safely last night. I miss them like crazy already. I hope we will be back in Illinois to spend time with them again soon.

Jordan was throwing up and being fussy earlier tonight. He has no fever, but we have been back and forth with Dr. K on the phone twice in the last couple of hours. She had us give him an extra dose of steroids, and said hopefully it is just an upset stomach that he will resolve by getting some sleep. Of course we are scared, but I gave him the boost of steroids and a little while later he ate a few ounces of formula and fell asleep. He was also SATing in the mid 70s. This is low, so we've had him on blow-by oxygen while he sleeps. He got blood late this afternoon, so we are quite sure it is not because he needs blood. Anyway, pray that it is just an upset stomach. We are starting prilosec tomorrow to try to relieve some of his reflux symptoms. Maybe that is what is causing all of this. Patrick made the comment tonight that it is so hard having a baby going through transplant. We don't have the luxury of saying, "oh, it's probably just an upset stomach. We'll see how he is doing tomorrow." We have to call the Dr. because it could be Graff vs. Host disease, a virus, or an infection. A cold could really harm our son, so we don't get to wait for a fever or multiple symptoms to develop before we do something. We were paranoid before, but since our trip to PICU, we take nothing lightly. I'm sure that this is nothing major since he is resting peacefully now, but we just can't help but worry. Dr. K. doesn't seem concerned, so I guess we will see how he does the rest of the night and tomorrow morning. So much for getting some sleep tonight, but what else is new? We will update if anything interesting happens. If you don't hear from us, don't worry. No news is almost always good news from us! We will try to update again soon.
Love,
Carrie

Wednesday, July 16, 2003 9:35 PM CDT

***Due to the problems with ezboard the new message board is open to eveyone. I hope it doesn't get abused***

Hello to all-
We are enjoying our last evening with my family before they head back to Illinois. I sure will miss them. My Dad was able to experience the BOPP room too last night. Patrick and my Dad took Jordan to get blood and had to stay in the BOPP room to almost 5:00am. Needless to say, they didn't get any sleep. They were too busy chatting "like a couple of old ladies" according to Patrick.

Other than needing blood all the time, Jordan is doing well. We are still enjoying many laughs and smiles. He even gets a great big belly laugh sometimes. Ellen Bowman got to hear this when Patrick was entertaining Jordan the other night while I spoke to her on the phone. She and I were laughing so hard at Jordan laughing that we couldn't speak.

Patrick has once again come up with a brilliant idea. As we think about our experience with transplant, we realize how ignorant we were going into the situation. This is not to say we would have chosen not to transplant Jordan, we just weren't aware of what transplant was all about. I'm not sure anyone could be until he/she has lived it. Patrick and I wish we would have had the opportunity to talk to more transplant families before we came to Duke to better prepare ourselves. I don't know that it would have helped, but we would like to think we can help other families. Anyway, he has set up an ezboard for transplant families or families considering transplant. The ezboard is meant for transplant families and those considering transplant can discuss medical or emotional issues that are unique to transplant families. If anyone is considering transplant or has been through it and would like to discuss topics on the forum, you can visit the link at the bottom of this page. Feel free to pass this on to other transplant families past or present or those considering it. Anyone can go and read the messages that have been posted, but if anyone would like to add a topic he/she has to register. If you have questions about how to do so, e-mail Patrick.

Well, it is getting late and I want to spend time with Mom, Dad, & Cherie before they leave, so I will post again later.
Love,
Carrie

Tuesday, July 15, 2003 4:31 PM CDT

Day +214
HAPPY BIRTHDAY SIMON BOWMAN! (Simon is Andrew Bowman's older brother and is an amazing young man. He turned 11 today. You can go to Andrew's website and wish him a happy birthday. www.caringbridge.org/page/andrewshope)

Shawn- This update is for you. I'm sorry to keep you all waiting. Jordan is doing well and we actually got out of clinic quickly today. We saw Dr. K. before Jordan was done with all of his medications. Dr. K. switched around some more of his meds. She lowered his steroids & Methadone, which makes us very happy. We hope this helps Jordan keep his oxygen saturations up while he is sleeping.

Patrick and I got an e-mail from a very nice woman who's daughter had Hurler's (another MPS disorder) and hemolitic anemia. This is the same type of anemia that Jordan has. She gave us a suggestion to give to Dr. K. about how to treat him. We are always looking for more information on how to make him better.

Dr. K. said that Jordan is looking great. We asked her about this dry hacking cough that Jordan has had off and on for a few weeks, but she said that she thinks it is nothing. It could be caused by meds., from being intubated, or from extra drainage from cutting teeth. At any rate, as long as his lungs stay clear and he is not running a fever she doesn't think it is a virus or infection. She feels confident in this especially because Jordan had his pulminary function test today and did better than last time. Great news!

We are enjoying the visit with My Mom, Dad, & sister. Cherie joined me in the BOPP room for Jordan's blood transfusion from 12:00am-4:30am Sunday morning. She had never been to the unit, so it was quite the experience for her, especially since the unit has moved to the adult bone marrow unit. The kids have been moved for a few weeks while they redo the 5200 unit. Mom joined me in clinic today, and Patrick is enjoying the break from the children's health center.

Other than that, things are still uneventful here. Please pray that this new treatment can help Jordan's anemia. We really want him to feel better and be healthy so we can return home. I will try to keep you all updated more often. Please pray for all the PBMT kids and the angels we've lost.

Love,
Carrie

Saturday, July 12, 2003 9:15 PM CDT

Although the past few days have been very sad, things are going well here. Jordan is back to needing blood every other day again, so Dr. K. has once again switched around his medications. We are actually happy with the changes because he is off the cellcept which is a two hour infusion twice a day. Now, the only pump he is on is a half hour once a day. She also tested him for some virus that I am still researching about. She seems to think this virus (which he is not showing any signs of having) could be contributing to the break down of red blood cells. Who knows?

Mom, Dad, & Cherie got here around 9:00 tonight and I was so happy to see them. I am really homesick, so this visit is much needed.

Ellen Bowman, Alicia Bennett and I went to see the Nicoll family today. They seem to be doing pretty well, but my heart goes out to Tracie, Doug, & Mama Jane. We shared many stories and tears and it was difficult, but I'm so glad I went. Tracie, I love you honey. Stay strong.

Please continue to pray for the Nicoll family as well as all the other transplant families.
Love,
Carrie

Thursday, July 10, 2003 11:10 AM CDT

Update 07-11-03 1:40PM
Dear family & friends I just got word of another child's passing. Douglas Nicoll lost his fight and became an angel today. Please visit their website and offer prayers of comfort for this family.(www.caringbridge.org/co/nicollbrothers) They still have another child going through transplant. This is so unfair and sad.


***New Pictures***
It's amazing what a little bit of sleep can do for a person. Since Jordan hasn't been sleeping that well at night, we are all a little emotional from lack of sleep. Patrick took Jordan in the other room and got up with him all night Tuesday night so that I could rest. When I woke up yesterday morning, I really felt so much better. I have the best husband. I'm so lucky that he is so supportive. I am still upset by all the sad news we have been getting from all the transplant families lately, but I am a better capable to deal with things after a good night's rest.

Jordan continues to improve little by little. He got sick early Tuesday morning and wouldn't keep down his medications, but we found out that his hemoglobin had dipped down to 6.4. After a blood transfusion we saw tons of smiles and giggles again. Other than that, things have been boring for us her (just the way we like it). We are waiting to hear if Jordan will need blood again today. He is looking a little pale, so we will probably head to clinic this afternoon to get a fill-up. Dr. K. lowered his IV blood pressure med. to once a day and switched a few other meds to oral. Now he is only on one pump twice a day instead of two pumps three times a day. He is taking his oral meds. like a champ and that makes medication much easier and faster for Patrick & me.

I do have an urgent prayer request. Douglas Nicoll (www.caringbridge.org/co/nicollbrothers) is in the PICU on a ventilator. Tracie found him in a pool of blood Sunday night and his lungs keep filling with blood. This little boy has been through so much and the family is just devastated. They have another boy (Cameron) who went through transplant at the same time and is doing well. I can't imagine being constantly torn. They are happy for Cameron, but scared to death for Douglas. Please keep them in your thoughts and prayers. Tracie: We love you guys; hang in there!

Thank you to Patrick, Nolan, Connor & Brenda Richardson, Melissa Durbin, & Laura, Paul & Sarah Downing for the neighborhood bake sale/lunch, and yard sale. The fundraiser was a success, and we appreciate your thoughtfulness and kindness.

Thank you to the ladies VFW in Brevard for the Bingo Benefit night! Patrick & I are so grateful to you ladies.
As always, remember all the transplant kids in your thoughts and prayers as well as the Angels!
Love,
Carrie

Tuesday, July 8, 2003 7:40 PM CDT

Jordan is doing well, but it has been a really rough day for me. I can't update right now because I am too heartbroken, but I want everyone to pray for Jillian's family. She became an angel a little after 1:00 this morning. Goodbye sweet girl. Please watch over your baby bear cub. We will miss you always.
www.caringbridge.org/fl/jillian Please visit her website and offer her family words of comfort.
We will update later.
Love,
Carrie

Monday, July 7, 2003 2:49 PM CDT

Day +206

It has been a few days since updating, but things are going well. Jordan finally got blood yesterday after going 5 days without needing any! YEAH! We are happy with his improvements. Although he will probably need blood tomorrow, but we have to be in clinic all day anyway.
We took Jordan in to see the Dr. today and Dr. K. happened to be filling in for Dr. Martin. We have been concerned about Jordan's sleeping (or lack thereof). She believes that his non-sleeping is mostly behavioral. He is too smart for his own good. He knows that we will get up with him, so he sleeps for an hour or so and then wants to get up. Dr. K. says we need to let him cry it out. The first few nights we will not get much sleep (not all that different from right now), but a night or two should break his habit. Let's hope. She believes that his meds. add to his sleeplessness, but that he is old enough to calm himself and go back to sleep on his own. We will try it and see how it goes. Other than that, Jordan is doing great. He is still giving away tons of smiles, and we hear lots of laughter.
We want everyone to pray for Jillian (www.caringbridge.org/fl/jillian) who his having a really rough time with pnemonia and many other infections. Dr. K. will give her a 2nd transplant but won't consider it until the infections are gone. Also, our buddy Jacob (www.caringbridge.org/va/jacob) is sick in the hospital. Please keep these and all transplant families in your prayers.
By the way, we did have a great 4th of July cookout. We hope everyone else enjoyed the holiday as well.
Love,
Carrie

Thursday, July 3, 2003 7:24 PM CDT

Day +202

Ok, this is going to be short because this is the third time I have written this entry and it has been erased every time.

Anyway, things are going well here, but we think Jordan is trying to cut his first tooth. He has been cranky and slobbering and chewing on eveything. Despite feeling lousy, he is still giving away smiles and giggles. It just warms my heart to see each one. He is still holding on to his hemoglobin. He was at 13.0 today. He got his last transfusion on Tuesday. We hope he can hold out until Saturday. The longer he goes without transfusions, the closer we get to going home.

Congratulations to Baby Noah for busting out of 5200 today. It was so nice to see him without oxygen or pumps. He is so precious. Greg and Debbie moved into an apartment next to us, and we are so happy to have them as our neighbors.

Please pray for Douglas Nicoll. He is really struggling, and his parents still haven't heard anything about his donor cell test (www.caringbridge.org/co/nicollbrothers)

We hope everyone has a safe and happy Independence Day! We are planning a cookout if the weather holds out.
We love and miss you all.
Love,
Carrie

Tuesday, July 1, 2003 8:37 PM CDT

Day 200 ***NEW PICTURES***

So sorry for not updating, but we have been so busy. Jordan did successfully break out of 5200 yesterday. We have been busy learning all of Jordan's new medications and how to administer them. Since he isn't taking his oral meds. very easily we switched many of them to IV. It is a little more work for me and Patrick, but it is much easier on Jordan. We are going to slowly switch them back to oral when he is ready. We also had to set up oxygen in the apartment in case Jordan needs it at night. Therefore we have a pulse ox in our bedroom that he is hooked up to while he is sleeping. At least we can monitor him well and prevent him from having major problems again.
Clinic today was great. I never thought I would be saying that about a TUESDAY, but it is true. I was so happy to have Jordan back in clinic that it went by very quickly. He had to get IVIG (immune builder) and blood, but Dr. K. was very impressed with his progress. His platelets were 122K, which is wonderful. Dr. K. gave him a rattle today that he just loves. She always finds the toys he likes. We are going to schedule the rest of Jordan's 6 month studies in the next few weeks (since he was inpatient during day 180). The immune function tests should be back within a week or two, and we will be doing a urine test to check how much the enzyme is helping him It is kind of complicated to explain, but I'll try. The test won't tell us how much enzyme he has, but it will tell us how well he is breaking down sugar molecules (which is what the enzyme does). They can measure the level of the waste products in his urine and tell us if there is an improvement over the test they did before. Hopefully we will see these results in a few weeks.
Other than that, we are just enjoying many smiles and giggles. Jordan is beginning to gain more skills everyday. He can roll over both ways again, is becoming much more vocal, and is beginning to wiggle his fingers for bye bye. Oh, and I can't forget all the kisses he has been giving away. Patrick and I are just so happy that he is feeling so much better. It is evident that something the doctors are doing is working because he is getting back to where he was before the anemia started. He still has his crabby moments (who doesn't), but they are overshadowed by the many, many smiles, coos, and kisses.
Thank you to everyone for your continued support and prayers. We really appreciate them. Also, we wanted to let everyone know that baby Noah may be busting out of 5200 as early as Thursday! WOW! Way to go NOAH!
Love,
Carrie

Saturday, June 28, 2003 4:08 PM CDT

Day 197
Jordan will be 8 months old tomorrow!
All is well here. Jordan is enjoying the 4 hour pass that he got today by sleeping in his own crib. We have been home about an hour, and he has been sleeping almost the entire time. He did spend a little while playing with daddy in the chair. I added pictures of this! Jordan kept reaching for Patrick's face; it was so sweet. When Jordan started crying Patrick pretended to drink his bottle, which made Jordan stop crying instantly. We have been enjoying all his smiles and laughter. He is starting to get his personality back and sometimes he is so stubborn. We love it!
We saw Dr. Scaboltz today and as always he said, "Hello Mr. Jordan. You are looking good today." He was very happy with Jordan's progress and confirmed that the plan is discharge on Monday. Dr. Martin will be there to discharge us. We are so excited.
Little Jaxon got to go home yesterday. Kendra called me from the road and said they were excited but nervous about going back to New York. I'm so happy for them, but I have to admit that I'm a little jealous. They've only been here since February. We are still unsure of when we will be returning to Illinois.
Thank you to Heather & Shad Mallady for the card and gift certificate. You guys are so sweet as always.
Courtney, thanks for the update with Dance Team. It sounds like you guys are going to have a very successful year. I am glad to hear that Coach Davis finally recognized you girls as athletes! You have worked hard for those letters and highly deserve them! I can't wait to see you all perform this year. Have fun at camp.
To the Bernardini crew: Thank you for the gift basket! We just got it yesterday after a big mix up with UPS, but we really appreciate the gifts!
We are still asking for prayers for Jordan, Noah, Malcolm (going through transplant #2) and all the other PBMT kids.
We love and miss you all.
Love,
Carrie

Thursday, June 26, 2003 5:03 PM CDT

Day +195

Today is a great day. Jordan has been laughing and giving away smiles all day. We are so glad to see these smiles again. We haven't seen this Jordan since before mother's day. Patrick and I are overjoyed! His labs look great and we have gone to checking his hemoglobin only once a day. We have to see how he does the next few days and then we are going to be getting discharged on Monday! We will have spent 31 days in the hospital (only 6 days less than we stayed for transplant). If we include the 10 day mother's day stay we get 41. Oh well, we are just glad that Jordan is doing so well. We are being sent home with Oxygen and a portable pulse ox. This is so we can check his SATs any time we think it is necessary. The oxygen is just in case. We do not want a repeat of May 31st. That day was a nightmare that we would rather forget but won't.
We have many IV meds. but only a few oral ones. This will keep us pretty busy, but it will be worth it to have him sleep in his own bed at home.
I have a prayer request. A family here from Greece had two children with MPS III that were transplanted a few months ago. One of their children passed a few weeks ago and their other child passed yesterday afternoon. I can't imagine loosing one child, let alone both children so close together. I know they must be questioning their decision about transplant, and they need prayers to comfort them. They just set up a website and I am sure they would appreciate any words of comfort. www.caringbridge.org/nc/koumpourasboys
Please keep Jordan and all the kids here in your thoughts and prayers.
Love,
Carrie

Tuesday, June 24, 2003 10:36 PM CDT

Well everything is going well. Dr. K says we will be out by the first of next week hopefully. The last 2 days Jordan has gotten 2 hour passes to come home. He has been an absolute joy. He is happy smiling and even babbling at us some. I will actually say today he has been back to his old goofy self again. I am ready for bed so I won't go on and on, but check out the new pictures of Jordan playing in baby food on his pass today.

Monday, June 23, 2003 10:38 AM CDT

Day +192

Sorry we haven't updated, but things have been relatively boring, which is the way we like it. Jordan is once again off the oxygen. He has been off since 4:30 yesterday evening, and he slept all night without dropping his oxygen saturations. This was a major hurdle considering all the medications he has been given. The doctors have lowered his methadone and ativan and hopefully will lower them again today. We are also trying to get Dr. K. to lower his steroids today. With the lowered steroids from last week, we have seen smaller cheeks and more smiles! We are hoping to see more improvements with the lowered meds. We would like to see Jordan completely off the methadone and ativan by this time next week. He is on very low doses right now, so it is possible.
Jordan needed blood yesterday, but it had been 2 1/2 days since his last blood transfusion. His platelets are doing awesome. He is holding in the 70-90K range. We would like them above 100K, but we will take this improvement.
Jordan is also gaining many skills back. He is starting to get on his sides and almost roll over again. He is grasping his toys and transfering them from one hand to another. He is sitting up with help, but will sit for a few seconds without help. His shoulders and back are getting stronger, and he is much more interactive. As these drugs work out of his system we see leaps and bounds. We are trying to find out if Jordan can get a two hour pass this afternoon. We want to bring him to the apartment for a little while so that he can feel more comfortable. Patrick, Beth (his neice), and I are cleaning the apartment in anticipation of his brief visit, while Patrick's parents are watching Jordan at the hospital.
Jordan (believe it or not) will be on fewer oral medications when we get home than he was on before. Since he has been inpatient, they have not once given him his calcium or sodium supplements and his chemistries still look great. I assume we won't have to give them to him anymore.
I was talking to a friend last night and I told her that if Jordan doesn't come home this week, (counting our 10 day stay around mother's day) we will be in the hospital longer this time than we were for the transplant. We were there 37 days for transplant and have been there 33 days so far this time. This is depressing, but we will do whatever it takes to make Jordan healthy again. We should be at the apartment again by the end of the week, if Jordan continues his current trend. Pray that he continues to improve!
Well I better go help Patrick & Beth clean so that we can get back to the hospital and see my happy boy. Please continue to keep baby Noah (www.caringbridge.org/hi/noah)in your prayers. He is holding his own, but still has a long road. We wish nothing but the best for him and his family. Also remember all the other transplant families. Say a special prayer for Malcolm (www.caringbridge.org/va/malcolm) who is getting ready for transplant #2 and Tommy (www.caringbridge.org/ca/bennettboys) who is getting ready for transplant #3.
Love,
Carrie

Saturday, June 21, 2003 3:44 AM CDT

Well it turns out that the fish test from last week was unlost. They actually did another test that was a little more extensive, but for the purpose of this update I will just say fish test. Ok enough stalling around. The Fish test came back around 50%. This is great news. Jordan has held steady at 50% for a while now. Dr. K said today that she felt like he probably won't go above 50%. That being said she also doesnt feel like he will go below it either. I know this sounds strange, and Dr. K acted like this was a first(That's my boy). Now understand 50% is plenty. If 50% is making the enzyme which is what we hope and suspect, that is how much Carrie makes being a carrier of the didsease. We are so happy about this. Now for today. Jordan slept all day long. Mom and Dad were concerned enough about not being able to wake him that they had Dr. k come in to check him. She felt like his Methadone was too high since they switched him from oral to IV, so she lowered that and the ativan. He still ate over 20 ounces although most of it was in his sleep. Hopefully he will come around, but all in all we are pleased with his progress.
Patrick

Thursday, June 19, 2003

I had a great update almost completely written. It was the update to end all updates. Maybe the best in history. It would have brought tears, laughter, and joy to all who read it, but through a series of freak occurrences I erased it. Oh well(story of my life).

First off Carrie and I want to thenk Shawn, Doug, Taylor, and of course Reese for the Card and gift. You four are an inspiration to us. Carrie said she will call soon, and say hi to Toni for me.

You know when you go through something like our little family has you learn to take things day by day. I will probably take things day by day to some extent forever. That being said I would like to tell everyone about our wonderful day. Dad went to stay with Jordan so Carrie could come home and sleep. Mom followed shortly. This is the routine now that Jordan refuses to sleep. Anyway Carrie came home and we went to breakfast. It was great we laughed and talked. It was a little glimpse of what it is like to be a young couple again. Then we came home and Carrie went to bed. I went to Great Clips for a haircut. Those who know me best know I hate places like this. I am a barber shop guy. I want to be surrounded by old men that smell funny when I get my haircut. That is just the way it is supposed to be. On the other hand the "hairstylist" did a pretty good job. later on in the afternoon Carrie and I went to relieve Mom and Dad. When we arrived Mom and Jordan were roaming the halls so Jordan could flirt with the nurses. He gave us the biggest smile when he saw us. Mom told us Noah was back on the unit so we went to say hi. He looked so good. He is just on oxygen and Debbie and Greg were the happiest I have ever seen them. We then sent Mom and Dad home and had a night filled with smiles, laughs, and snuggling. Carrie just called and said that Jordan is sound asleep and still off the blow by oxygen. Also she said Noah is still doing great. All in all I can say no matter what happens tomorrow, today was a great day. Of course we should get Jordan's Fish test back next week. I am sick with worry over this stupid test. His last showed around 50% donor cells. I pray he is there or higher. Everyone tells me worrying isn't going to help, but if I didn't have something to worry about, I would worry that something would happen that would worry me. Does that make sense? I guess that's just me.
Patrick

Wednesday, June 18, 2003 7:03 PM CDT

Well, all is looking good here. Thank you all for the overwhelming support. I am not going to mention anything else about the person who left that message because she doesn't justify the effort. We know that there are thousands of people out there supporting us, and that's what is important.
Jordan is resting comfortably today without oxygen. He has been off since this morning, and is doing well. We even got to unhook him from all of his lines and walk in the hallway for a while today. He was laughing and smiling and enjoying being out around others. He is getting stronger everyday, and the doctors are pleased with his progress. As Patrick said the other day, his LP came back with a normal pressure, so that is good news. Dr. Kurtzberg ordered a CT scan on Monday, and it came back stable. The plan for now is not to place a shunt. We are hoping that the one time high pressure was just a fluke, or a result of the meds. and anemia.
As far as the anemia is concerned, Jordan is improving. His counts stayed virtually the same from 2:00 this morning to 2:00 this afternoon. Actually he was .3 higher this afternoon. This is a very positive sign. It tells us that at the very least, he is holding on to his red blood cells longer. This is probably why he is feeling so much better. I'll tell you; we are so glad to see our baby returning to normal.
He is eating better, but still not taking in enough calories to keep his energy up. We discussed with Dr. K. that we didn't think the feeding tube was necessary, and she agreed. Instead, we changed his formula to a higher calorie one that has to be made especially for him here at the hospital. This is only temporary (until we go outpatient). We hope this will help him get stronger and heal quicker.
Well, I better get back to the room. Jordan has been in such a good mood today that I want to enjoy every minute of it. Please say a special prayer for baby Noah (www.caringbridge.org/hi/noah). He is going to be extubated this evening and his parents have made a very difficult decision to not reintubate. Pray that Noah is stong enough to breath on his own with little help from oxygen.
Love,
Carrie
Thank you to Ellen & Kahlita for coming by yesterday. We were glad to see you guys!

Monday, June 16, 2003 4:27 PM CDT

*** Addition****
Jordan just had his LP and the pressure was 18. Although Patrick & I thought this was high, Dr. K. thinks it is in normal range. She said that at this time, he does not need the shunt. Also she believes he is not eating enough and if his feedings don't pick up again after lowering the methadone, they will place an NG (nose to stomach) tube for feeding. Once he gets his strength back, she believes he will breath easier and then will be off the oxygen and heading home.

******To The mean Debbie who left the horrible message about us on Noah's website:
Yes, we all just exploit our kids so that we can get tons of money and live high on life with no worries while everyone else supports us. How dare you make a comment like that about Noah and my family. We will trade you any day. You take care of your sick or dying child, and I will go to work and have my biggest worry be picking on other people. We are trying to take care of sick children and do not need your petty comments making us feel bad about our decisions. Do you think it is easy asking people for things? It's not! It's embarassing! I would love to go back to work and teach. That is my passion, but at this time I have to focus on a child that is currently needing oxygen and possibly a feeding tube. I don't have the luxury of going to work everyday. I have to constantly monitor my child. How dare you! I don't tell people my story to get sympathy and money. I tell people my story because they care and want to know how my son is doing. If I didn't have to be here, I wouldn't be, but life is not fair and God gave me a child with special needs. I thank him everyday for that gift and cuss him for making my child sick. Does it sound like my life is easy & I am having a blast spending all of the donations we have gotten from others? I will have you know that we were here for 6 months before we asked anyone for anything! We had enough money to last until then. When God decided that my son wasn't healed yet and we needed to stay, people were generous enough to send us things (including money) to help us out. We are using those donations for food, diapers, & shelter, not gambling and alcohol. Do you think we have a bank account with thousands of dollars in it from others? I will gladly show you my statements that unfortunately don't reflect that ammount. My son is not going to grow up begging; he will grow up forever appreciating the generous nature of good people. He will know how we struggled, what gift he has in life, and he will celebrate that by working hard and making us proud. The only thing he will be begging for is your soul! He will pray that God gives you some type of insight into what it is like being in our shoes for 5 minutes, then you won't be so quick to judge us for having to swallow our pride and ask for help! I just pray that he gets old enough to beg! If you would like to discuss my greedy nature further, I invite you to leave a way I can contact you on my e-mail.
I appologize to everyone else for having to leave this nasty message, but some people have no idea. I appologize to Debbie & Greg (Noah's parents) for this woman leaving a message on your guestbook. I think you guys are doing a great job, and we love you!



Well it is looking like getting out of the hospital has been put on hold. Jordan's hemoglobin has been dropping a little faster here and there. This is not really a setback. We were just optomistic that things would progress a little quicker. Dr. K came in saturday and switched his valium to methadone. It kinda knocked him on his little butt. Saturday night he wound up back on oxygen. He has pretty much been on it ever since. He also isn't eating quite as well. We think this is due to the methadone, and Dr. K is trying to adjust it. I don't think he even needs it but whatever. She is hopefully going to do another spinal tap today. We hope this gives us some more answers. I really hope he doesn't need a shunt because I think another surgery right now would be really hard on all of us. I stayed overnight with him Saturday night. Carrie got to come home and spend all night in her own bed. He had a pretty sleepless night so I did too. I did enjoy it and our nurse gave me a B . She said it would have been an A except for my snoring. Well that's it for now.
Patrick

Saturday, June 14, 2003 7:26 PM CDT

Day 183
****New Pictures****
Two weeks ago today we thought we were for sure going to lose our precious angel, and today he is oxygen free. He has been off the oxygen since 6:30 last night and is doing awesome. We couldn't be prouder of our little fighter!
Jordan is getting ready for his 6 month studies, so Dr. K. went ahead and ordered an echocardiogram yesterday. The results showed that Jordan's heart is slightly enlarged in one area. Dr. K. assures us that this is not anything to be concerned about at this time. She said that the steroids and FK are both known to cause this. Although this condition is not dangerous right now, if left untreated, it could affect the function of the heart. Dr. K. stopped his FK today and put him on a different anti-GVH medication. This is a safer and less strong medication (the name slips my mind right now). Anyway, he will take it everyday for a week and then every other day. She also lowered his steroids today, and when this other med goes to every other day the steroids will too. We will alternate steroids with this other GVH med. This will lessen the effects of the steroids and still give him the benefit of the meds. Dr. K. wants to lower his steroids down to a much safer level, and this is the first step toward that goal. Once these meds are lowered or taken away, the heart will return to normal. Thank God!
Jordan went 3 days without needing blood and finally got a transfusion yesterday evening and has not needed platelets in 5 days. We are seeing some definite improvements in his anemia. Pray that we continue to see these positive results!
Dr. K. is very pleased with Jordan's progress and so are we. If it were one of us, we would be much worse off than he is. As far as his physical set backs, physical therapy will work with Jordan 2 times a week until he gets back the skills he lost the last few weeks. The physical therapist thinks that Jordan will regain all of his skills in a few weeks. We just want to help him along a little.
Since Jordan is doing so well, we will probably be discharged early next week. Dr. K. wants to work out everything with changing his meds. around, and that's easier to do while we are inpatient. Dr. K. is up on the unit for the next two weeks, so she will see Jordan every day while we are here. We thank Dr. Martin for the wonderful care that he gave to Jordan the past two weeks, but we are glad to have Dr. K. back. She knows us and Jordan so well and knows just what to say to make us feel comfortable.
Oh, I almost forgot that we drew a FISH test last Monday. We should get the results by Wednesday. Pray for a larger percentage of donor cells. We have been hovering at 50or what seems like forever. We would love to see Jordan's donor cells increase!
Thank you to Hendrick's Motorsports for the diapers, wipes, clorox wipes, outfits, hat, book, & the hat and shirt for Patrick. We always love seeing you all and I'm glad you were able to see Jordan with some hair this time. Courtney & the crew: Thanks so Much!
Love,
Carrie

Friday, June 13, 2003 1:42 PM CDT

Day +182
Exactly 6 months ago today (on Friday the 13th) Jordan had his transplant. Dr. Megan Burke & Dr. Paul Martin were there in 5206 with us. Today, Jordan is in 5206 on Friday the 13th again. Dr. Megan Burke & Dr. Paul Martin are on the unit. Deja Vu? Jordan, let's not make this a tradition OK!
Jordan is off the oxygen for the most part as long as he is awake. We have been trying to keep him off as long as we can, and he is SATing around 95, which is great. When he falls asleep or holds his breath (when refusing to swallow medicine) he goes down to 88 or 89, but the doctors are not concerned with this. When he drops, we just use a minimal amount of blow by oxygen. Blow by is basically a big blue tube with air blowing out across Jordan's face. When he doesn't grab the tube and bend it away from his face or turn his head, it works really well. But, my kid doesn't want anything blowing in his face, so he has decided he doesn't need it anymore. I like this attitude. It is a very positive sign to see him requiring less and less oxygen assistance. Last week at this time I thought he would never be on room air again. What an amazing child we have. We truly are taking baby steps; I'm just glad that Jordan has big feet!
Larry & Susie Murray came to town to visit yesterday and Patrick & I were able to go out to eat with them while Patrick's parents watched Jordan. It was so nice to go out to eat and see faces from home. Then, they came to the hospital to meet Jordan for the first time. They are the first people from Illinois outside of the family (Joanne, you are family) that have seen Jordan. It's nice to be able to start introducing our son to our friends. Larry & Susie, thanks so much for a great evening. We really enjoyed the visit!
I have a special prayer request: Noah (www.caringbridge.org/hi/noah) was reintubated (put back on the ventilater) yesterday morning. This is such a heartbreaking time for his parents. Although he is on very low settings, the doctors are afraid that he may need something more drastic to keep him stable. Pray that Noah again proves the doctors wrong and gets better. Pray for the strength of Debbie & Greg to endure all of this. They haven't been able to hold their baby in months. Pray they can hold a healthy boy soon!
Also, pray for Andrew Bowman (www.caringbridge.org/page/andrewshope). He is still having trouble with his shunt and is in pain. Pray that Ellen has the strength to endure more of the same long road that transplant has given them. They have been in Durham off and on (more on than off) for over 2 years now. Ellen, we are thinking of you always and praying for Andrew's comfort! We love you guys.
Last but certainly not least, pray that Jillian L.'s (www.caringbridge.org/fl/jillian) boost of donor cells will help her battle against her relapse. We want to see only donor cells!
Love,
Carrie

Thursday, June 12, 2003 5:39 PM CDT

Day +181
Just a quick update to tell everyone that Jordan is still holding his own. He is getting much more active, and less tolerant of his medication and the oxygen. He keeps trying to remove his nasal canula. At least we know he is feeling better. We have been trying to take him off the oxygen, but he only lasts about 10-15 minutes before he drops into the 80s again. The doctors want him to stay above 90. He will get there soon. Other than that, nothing has changed. We are just waiting for him to get strong enouugh to break out of 5200 again.
We do have some great news about baby Noah. He was extubated and put on the BiPap yesterday. He should be moved over to 5200 today. We can't wait to see Greg, Debbie, & Noah on the unit.
Thank you to Annie Johnson of Wendell for the donation.
Thank you to David Barthel & June Burch for the monetary gift. We appreciate all your support.
Thank you to all for prayers, well wishes, & guestbook entries. Your support means so much to us.
Larry & Susie: We can't wait to see you guys tonight!
Love,
Carrie

Wednesday, June 11, 2003 10:14 AM CDT

Day 180
**New Pictures**
Well, today is Jordan's 6 month transplant birthday. Too bad that this boy isn't going to be doing any of his 6 month studies soon. He is still on 1/8th liter of oxygen. This is such a small amount, but it is needed. We tried taking him completely off the oxygen, but he DeSats to the 80s. We want him to stay in the mid 90s. With the small amount of oxygen he is requiring, we will not be discharged yet. The doctors want him to be off the oxgen for 2 days before he is discharged. We agree. We are not rushing Jordan out of the hospital this time. He is still requiring blood transfusions about every 36-48 hours, and he needs platelets about every 48 because his perameters are still 50 since the surgery. Jordan seems to be feeling better and the doctors are cutting back his Valium & Fentanyl. He needs to be off both of these to go home. We are also stopping his blood pressure IV today. Since he has been inpatient, he has been on a constant drip. We have been lowering it the last several days, and it was stopped today. That is one goal that we had to achieve before discharge.
Oh, I forgot to tell everyone that the clot in Jordan's arm resolved itself. The doctors did an ultrasound to see if we needed to restart the blood thinners, but the ultrasound showed that the clot was gone. We are very happy about this. Jordan is even starting to use that arm again. He is becoming much more active. He is more alert and is using his hands to pick up his toys again . . . baby steps.
Well, I am going to get back to the room to enjoy a few more smiles that Jordan is giving away today. I can't wait until the docs lower these steroids and we see many more of these smiles.
Keep praying for us and all the other BMT families. Noah should be off the vent today (God willing)! Hopefully he will be our neighbor in 5205 within a few days. Keep up the good work Noah!
Love,
Carrie

Monday, June 9, 2003 10:31 AM CDT

Day +178

Sorry we haven't updated, no news has been good news lately. Jordan is a little more alert and has been giving away a few smiles. He is getting weaned off some of his meds., which is making him feel more like himself. He is still needing blood and platelet transfusions, but not as frequently as he did before the spleen removal. Dr. K. said it may take him another week or two before he doesn't need them so often. We can't wait for Jordan to feel better again.
It is really hard to watch a 7 month old baby lose all of the milestones that he worked so hard to achieve. He lost much of his muscle tone while he was in the PICU and is barely moving his arms and legs. The doctors assure us that this is because his body is still exhausted from the trauma he experienced. Once he is feeling better, he will start gaining all of that back. The way he is eating, he should start gaining strength back in no time.
He is eating around 20 ounces a day. This is about what he was eating before he was intubated. While he was in the PICU, they were tube feeding him with about 6 ounces a day, so he has really amazed us with his increased appetite. He is also sleeping most of the night. If it weren't for the constant beeping of pumps, I would be sleeping 6-8 hours at a time at night. I hope this continues when he gets home, but I am afraid that he is only sleeping because of all the pain medication he is still getting. At any rate, I am enjoying a little extra sleep. I still get up about once an hour to see if he is ok, probably because I am afraid I won't hear him crying.
Since he has irritation from being intubated, he doesn't have much of a voice. It is sad to see him open his mouth and crinkle his eyes, but only a little squeak comes out. He sounds like a baby bird. Again, this should get better with time. He already has a little more of a voice than he did on Friday and Saturday.
Well, Mom left Friday night and I miss her terribly, but I know she had to get back. Hopefully next time you visit we will be packing up to go home. I love you.
Thank you to Susan Price for the gift certificate. It will help us out.
Thank you to Angie (Black) Dooley, Neil Johnson, Mary C. Dooley, Angie Lyerla, and everyone else who helped to make the benefit a huge success. We appreciate all the support. Thank you to all the businesses and individuals who donated raffle and silent auction items. It is overwhelming to see so many people give so much. You all are amazing to pull that off in two weeks!
Thank you to Mark & Heather Bellaver for the gift and letter. You are so sweet to help us out.
Thank you to Calvin Outlaw for the donation to Jordan's benefit fund. We appreciate your kindness.
Thank you to the VFW Ladies Auxiliary Post 4309 in Brevard for the donation and the benefit Bingo that you are planning on June 14th. You ladies are too kind.
Thank you to everyone for all the prayers. They are working. Continue to pray for Jordan and Noah, and all the other kids going through various stages of transplant. Noah is going to surgery today to get his shunt internalized. Pray that all goes well, and we see him on the unit with us soon.
Love,
Carrie

Saturday, June 7, 2003 7:02 PM CDT

I don't have a lot to say today but I just wanted to quickly let everyone know how things were going. Last night was a little scary Jordan wasn't tolerating something last night. We think the NG tube feeding. They rigged up the NG tube from picu which was bigger than the normal ones. It is mainly used for removing the bile from your stomach while you are sedated. They fed him through it and his pulse ox started to drop, so they gave up on it. Jordan was suffering from withdrawl pretty seriously still. This morning dad and I got to the hospital and sent Carrie home. She had tried to give him some pedialyte with a bottle and it didnt work. His little mouth, nose, lips, and throat were so dry from the vent and the 02. I kept KY jelly on his lips and it helped. Somehow Dad and I got him to take formula. We started out coaxing him in to taking a half an ounce, An hour later an ounce, and he hasn't looked back. He is up to 7 ounces since noon. He is still not nearly back to his old self but he is on the road. Somehow his Granny got him to belly laugh while Carrie and I were at the cafeteria. We got back in time to witness it. I can say today is the first time tears of joy wwere shed in this household. Till next time.
Patrick

Friday, June 6, 2003 12:57 AM CDT

Day +175

How wonderful is life? Our child is out of PICU, off the vent, and looking at us with loving eyes!
The doctors took Jordan off the vent yesterday morning and put him on a BiPap machine. It is kind of like a step inbetween the vent. and normal room air. Since he was still heavily sedated and having huge withdrawl symptoms from the narcotics, the docs. decided the BiPap was the best thing for him. About an hour ago, the doctors took him off the BiPap, and he is on a little oxygen by face mask. He is in much better spirits. I know he is still having pain, but at least he is more comfortable than before. He is on a Fentanyl drip for pain and they will lower that as he is further out from the surgery.
He actually made his first sound this morning. He squeaked just a little when he tried to cry and I cried tears of joy to hear his little voice again. He is getting his voice back little by little. He is currently on a low amount of oxygen, and the docs. think that he should be on room air by late tonight or tomorrow morning. God's power of healing is amazing.
The nurses here are so happy about Jordan doing so well. Several of them came in yesterday when he was moved back to our old room (5206) on the Bone Marrow Unit. Then they came in today and were smiling because he looks amazing! He is becoming more alert and hopefully we will see a smile in the near future.
I couldn't sleep at all last night because he was so uncomfortable. Even though Vanessa took excellent care of him, I was up every 30 or so minutes to check on him. I will hopefully sleep better tonight.
Well, I just wanted to let everyone know how he was doing. Also, we are going to start tube feedings again within a few hours because he finally had a bowel movement after surgery. It is crazy how little things like bowel movements get me excited. It means my child is going back to his old self, and we love that.
Thank you to everyone for the many prayers.
Thank you to Cathy & Ric Hartzler for the gift certificate.
Love,
Carrie
***WARNING PICU PICTURES***
I have posted pictures of Jordan in the PICU. I warn all of you that they are not pretty pictures. If you don't want to see them, please don't look at the photo page. They may be very difficult to look at. I am posting them because many people don't know what Jordan is going through and want to have a better understanding of what being in the PICU is like. Patrick asks that you please don't download or save these pictures. We don't want to use them to exploit our child in any way, and we don't necessarily want people to remember how Jordan looks right now. We prefer to preserve the memories of a happy baby

Wednesday, June 4, 2003 7:38 PM CDT

Day +173
PRAISE GOD! JORDAN DID AWESOME!
***WARNING PICU PICTURES***New Update below at 7:30PM

I have posted pictures of Jordan in the PICU. I warn all of you that they are not pretty pictures. If you don't want to see them, please don't look at the photo page. They may be very difficult to look at. I am posting them because many people don't know what Jordan is going through and want to have a better understanding of what being in the PICU is like. Patrick asks that you please don't download or save these pictures. We don't want to use them to exploit our child in any way, and we don't necessarily want people to remember how Jordan looks right now. We prefer to preserve the memories of a happy baby

Jordan went through surgery with flying colors. He is currently breathing room air (still on the vent.). The doctors want him to rest comfortably tonight and tomorrow they with extubate! It is amazing to me how quickly things can turn from bad to worse and from worse to better. He is an amazing child! Thank you all so much for the prayers. They worked! Dr. K. & Dr. Martin said he will be on 5200 either tomorrow night or Friday at the latest. We are even going to get our old room back on 5200. 5206 here we come. Also, baby Evan was doing better tonight when we left and Noah is off the oscillator and breathing 35% oxygen on the vent. WOW! We truly have an amazing God! Thank you, Thank you, Thank you! We love you all.
Thank you to Mike, Karyn, & Addison Hortin from Decatur for the awesome care package. You are so generous!
Love,
Carrie

Wednesday, June 4, 2003 7:42 AM CDT

Day +173

***WARNING PICU PICTURES***New Update below!

I have posted pictures of Jordan in the PICU. I warn all of you that they are not pretty pictures. If you don't want to see them, please don't look at the photo page. They may be very difficult to look at. I am posting them because many people don't know what Jordan is going through and want to have a better understanding of what being in the PICU is like. Patrick asks that you please don't download or save these pictures. We don't want to use them to exploit our child in any way, and we don't necessarily want people to remember how Jordan looks right now. We prefer to preserve the memories of a happy baby!

Jordan is such an amazing little fighter! God is very good! Jordan had a few episodes yesterday when he tried to wake up. When he did, he held his breath to fight the vent. and he dropped his SATs. After much discussion and trying many different sedation methods the doctors and nurse decided that Jordan needed to have a paralytic in order to keep him safe. We were uncomfortable with this at first, but he would have ended up causing himself more problems without it. Since then, Jordan has been resting peacefully and not giving the nurses or his parents a hard time or any more scares. He is currently on 25% oxygen, which is almost room air! We are so happy about this. He is going to have his spleen removed around 2:30 this afternoon, so I ask you all to pray for Dr. Skinner and his team as they perform the surgery. Dr. Skinner placed Jordan's central lines, so we feel comfortable with him doing the surgery. So, we are focusing our energy on getting him through surgery and off the vent some time on Thursday. By the weekend or at least Monday, we should be visiting our friends on 5200. Thank you to all for your prayers and please continue to pray for our family as well as Noah and Evan (the 8 week old that I mentioned the other day). Noah is improving everyday and there is discussion of taking him off the osillator today! Way to go baby Noah! Evan's family is still up in the air about what is wrong with their child. The doctors believe it could be a metabolic disorder, not necessarily MPS, and a heart condition combined. This is a very sick little boy and I ask that you all pray for the doctors knowledge and the family's strength. I will try to update tonight after Jordan's surgery.
Love,
Carrie

Monday, June 2, 2003 7:19 PM CDT

DAY +172
***WARNING PICU PICTURES***
I have posted pictures of Jordan in the PICU. I warn all of you that they are not pretty pictures. If you don't want to see them, please don't look at the photo page. They may be very difficult to look at. I am posting them because many people don't know what Jordan is going through and want to have a better understanding of what being in the PICU is like. Patrick asks that you please don't download or save these pictures. We don't want to use them to exploit our child in any way, and we don't necessarily want people to remember how Jordan looks right now. We prefer to preserve the memories of a happy baby!
Jordan is resting well tonight after many adjustments to his vent. settings. He was fighting the vent. all day because he is ready to come off it. The doctors are not going to extubate him today or tomorrow because Jordan is going to go to surgery for spleen removal first thing Wednesday morning. The doctors don't want to put Jordan through the trauma of extubating, waking him up, and then sedating him, and intubating him again.
The word for now is that the shunt is not nearly as pressing of an issue as we thought. Jordan (according to the CT scans & MRIs) has hydrocephalis, but the spinal tap that was done on Sunday showed that his pressure was only 7. Considering Jordan's trip to the PICU, the spleen surgery is much more important.
Anyway, we are all doing much better despite a little scare this morning when Jordan's intubation tube got clogged with mucous. The story goes something like this. Patrick and I were sitting in the waiting room while his parents were back visiting with Jordan. Jordan's sats dropped to 30% and the nurse hit the code button (only to get help to bag him while they cleared the clot). Jordan's grandparents didn't know that, so they ran to the waiting room to tell us that Jordan was codeing. I ran screaming back to Jordan's room pounding on the PICU doors so they would let me in. Patrick got on the intercom to ask them to let me back. He was denied and his reply was, "you better let his mother back there or she is going to tear down the door." They sent someone out to calm me down, but as soon as the doors opened I ran right past the attending doctor and to Jordan's room. I heard her calling my name, but ignored her and went to his bed. When I got there, he was fine. I about had a heart attack from the rush of emotions. One minute I thought my son was not breathing, and the next minute they told me he was perfectly fine. I know that 10 years were taken off my life today. I finally cried tears of relief as I caught my breath and calmed myself. The problem was because his tube was too small, and they decided to change to a larger tube, and he is doing much better. This PICU stuff is stressful. I can't wait until he is out of there.
OK, the game plan is we are going to lower his vent settings, let him breath some on his own but still with the vent so he is more comfortable. Wednesday he will have his spleen removed, and then Wednesday night or Thursday morning the vent will be removed and he will move to 5200. Once he recovers from the spleen surgery, we will discuss the shunt and probably be in clinic within the next few weeks.
Continue to pray for Jordan's comfort and health. He has healthy lungs, heart, and kindeys. This makes Jordan's situation much different and better than most children who go to PICU. This is a blessing in itself. Also continue to pray for Noah. He is improving, but still needs many prayers. I am also asking a special prayer for a family that we met in the PICU. They have an eight week old baby, and the doctors are unsure of what is wrong with him. They are ruling out MPS and other similar disorders right now. This is the 4th or 5th hospital this family has been to with no answers yet. Please pray for the doctors to have the knowledge to help them.
Thank you to Kristina Ho and the Clorox company for the case of clorox disinfecting wipes. We will use them!
Love,
Carrie

Sunday, June 1, 2003 6:41 PM CDT

Day 170
***WARNING PICU PICTURES POSTED. They may be difficult to look at.***
You'd think that this far out we wouldn't be telling you all about Jordan being in the PICU, but sadly that's the reality of transplant.
Patrick's very short journal entry today was a little premature. Jordan was not and will not be extubated today. Jordan has a small amount of fluid in his lungs because of all the meds, blood, and platelets that he had to get yesterday. The doctors are giving him lasix (a diuretic) to try to get rid of that excess fluid. This evening he was starting to sound better, but the doctors are still somewhat concerned. Jordan is currently on about 40xygen, which is really good. They just want to keep him on the vent. until we get some other issues resolved.
The major issue right now is Jordan's right arm. Jordan developed a blood clot in his right arm, probably from breaking down the red blood cells so quickly. Yesterday his arm began swelling a little and by this morning it was extremely swelled, had a faint pulse, and was turning purple. After a few blood thinner injections and elevating the arm, the color greatly improved. When I left at 7:00 this evening his arm was less swollen and begining to become pink again. The doctors are happy with the progress and believe the clot is resolving.
The other major issue that probably caused this entire episode is Jordan's hemocratic anemia. We have been battling these antibodies for several months now and things have obviously gotten much worse. This is what happened.
On Saturday morning Jordan's hemoglobin dropped so low that it was almost unmeasurable. This caused his body to double its volume to compensate and in turn caused his lungs to fill with fluid. Jordan began grunting and we immediatly rushed him to 5200. When we got there, Dr. Martin called the code team to intibate and take Jordan to the PICU. This was the hardest moment of my life. When the word PICU came out of Dr. Martin's mouth, I lost it. I ran screaming out of the room and cried as I thought of all the children I have watched go to the PICU and not make it. I was certain at that moment that my child was also not going to make it.
After talking with the doctors (namely Dr. K.) I have a much different outlook. According to the doctors, Jordan's case is very serious, but very treatable. That said, here is the plan. Within the next few days we are going to be removing Jordan's spleen. The doctors feel that this episode was just too much for his body to handle and that he couldn't handle another one. Therefore we will talk to Dr. Rice (the very wonderful spleen expert) about removal.
As is stands right now (if his sats and vitals stay the same or even improve) within the next 14 days we will remove the spleen, get off the vent, go to 5200 for recovery, and be discharged to clinic. It is hard to think about all of that when Jordan is on the vent, but it does give us some hope.
There is so much more to the story, but I don't want to go into details about my battles with the doctors about Jordan's treatment. The end result was MOM won . . .MD lost. The doctors listened to me and I am happy. Jordan is getting the best care possible and Patrick and I were able to rest a little last night.
Tomorrow I will post a picture of Jordan in the PICU. I warn all of you that it will not be a pretty picture. If you don't want to see it, please don't look at the photo page. I am giving you a warning ahead of time because the pictures are very difficult to look at. I am posting them because many people don't know what Jordan is going through and want to have a better understanding of what being in the PICU is like. Again, I will not post it until tomorrow or late tonight, and I will repeat this warning.
I ask that everyone please say an extra prayer for my son. He is such a fighter. We saw this today when his sedation started to lift. He was trying his hardest to pull out his tube and fight against the vent. We had to increase his sedation meds. This is a good sign that when we take him off the vent. he will fight with everything he has to breath on his own.
I also wanted to let you all know that baby Noah is improving (Thanks to a very smart daddy). Congrats Noah! We hope you continue to make leaps and bounds buddy!
Until tomorrow,
Carrie

Benefit for Jordan Robert Horton
Saturday, June 7th from 5 - 10 p.m.
at Bernardini's in Nokomis, IL
Free Food- DJ - Lots of Raffle Prizes - 50/50 - Silent Auction
For more information, to purchase raffle tickets or donate items for the raffle or silent auction, please contact Angie Dooley at Bernardini's at (217) 563-7500 or Angie (Yeske) Lyerla at (217)534-6293.

Sunday, June 1, 2003 6:42 AM CDT

Things are looking up a little today. The word extubate has been floating around. More later.
Pat

Saturday, May 31, 2003 3:52 PM CDT

Well this is going to be a short update when I know everyone will want a long one. Jordan had some serious breathing difficulties this morning, and we headed for the bopp room at 7:30 this morning. This turned into a massive effort to keep him breathing. He is now in the picu heavily sedated and on a ventalator. He is now stable and the wonderful doctors and nurses are doing a wonderful job trying to figure out why this happened. Dr. K said she feels like this will be a temporary situation. I'm not going to sugar coat it. this is serious and we need every prayer we can get. By the way I promised Jordan when he gets over this and doing good we are going straight to the beach. I can honestly say I fully intend to keep my promise. He is a tough little boy.
Patrick

Friday, May 30, 2003 8:10 PM CDT

Well let's see first off I wanted to tell Pat Bingham that there was never any patience involved in having those boys around. As a matter of fact I was standing outside today realizing I no longer have anybody around to race cars, play video games, play wiffel ball, or goof around with. Those boys were very good for my sanity. Me and Isaiah are awful close to the same level. We miss you four like crazy. Anyway on to the medical stuff.

We saw Dr. Fuchs today. He is the neurosurgeon placing Jordan's shunt. We discussed the procedure, and I asked a lot of questions. Jordan will be admitted monday they will pump him full of blood and platelets and he will get his shunt placed tuesday morning. If things go well we hope to have him home wednesday or thursday. This is a relatively minor procedure as far as neurosurgery goes and we are very pleased with the doctor, but of course no one wants to say it but we are all pretty scared. I will spare you guys the details of the surgery but anyone who would like to know more about it can feel free to E-mail me. Jordan's hemoglobin was at 10.1 today so no blood today.Jordan actually seems to feel a bit better today. He has given away a few smiles but he is very stingy with them. Hopefully this shunt will make a difference. His mom and I got to run around and do some stuff including going out to lunch. It felt weird to go out without the baby but a good weird.
--Patrick
We have several people to thank for gifts.
Thank you to Timothy & Ronda Fields for your generous monetary gift.
Thank you to Laney Biggs, her parents, and grandparents for the awesome care package. We will enjoy all the goodies very much.
Thank you to the Katsiyiannis family from Forsyth for the gift certificate. It will be put to good use.
Thank you to Nancy Evans for the beautiful letter and gift certificate. We appreciate it.
Thank you to James Howered for the monetary donation. I know you don't want a thank you card, but I have to thank you here at least.
Thank you to Elma Masters for the monetary donation. It was so nice of you to think of us.
Thank you to Zach Ferguson for the picture. I'm sorry we couldn't be there for the graduation party.
Thank you to many of Patrick's co-workers at Norfolk Southern for the donation that you all took up. We appreciate your kindness and support. Thank you to Butch for getting it all together for us.
Thank you to Mike Rounsavall for the monetary donation.
Thanks to you all. Love, Carrie & Patrick

Thursday, May 29, 2003 2:30 AM

We have had a really busy day today, but since I am spending another sleepless night I thought I would clue everyone in on all the developments. I started out dropping labs at 9:30 this morning. I came home to find out Jordan had expelled all of his morning meds. But we had a yummy breakfast of blueberry pancakes and sausage links(thanks mom, oh and Pat the syrup you guys left us was primo). Anyway we had to get ready fast because Jordan's saunogram was at 11:00, and his CT was at 12. We called up to the 4th floor between the two and found out Jordan's hemoglobin was at 4.8. That is low. Anyway we finally got back upstairs and got his blood started about 2pm. I ran home to get Jordan's afternoon IV meds, formula, a change of clothes for Carrie(You don't want to know why), and other stuff. I got back to clinic, and laid down with Jordan and took a little nap. I awoke to a big commotion and come to find out one of our favorite nurses was trying to help Jordan swallow one of his meds(lately he just holds them in his mouth forever) and held his nose to stimulate him to swallow. You guessed it, he inhaled it. So when I woke up they were giving him o2 to help him breathe, and his sats were at 75. The Nurse Practitioner Lauren came in and ordered an albuterol breathing treatment to help, and told us both his preliminary test results came back looking good. I headed doqwnstairs to call mom because I had had all I could take. When I got back Jordan was breathing a little easier but Lauren was a little concerned about the way he sounded so she ordered a chest X-ray. A short time later Dr. K, and Dr. scabolz came in and told us his chest X ray came back OK so we weren't going to be admitted for observation, but he needs another chest Xray in the morning, and we want to ultrasound his spleen. Oh and by the way we checked the CT, and Jordan has Hydrocephalis. Lauren says oh when I talked to them they just had the preliminary results, and they said it looked OK. Dr. K said no you just misundersttod what they were telling you. Then they stopped arguing. So I had to call mom back and tell her it looks like a shunt. For such a small word it sure does bring me to a panic. Anyway we finally got home around 7pm. You see it is hard to tell how much relief that spinal tap brought Jordan because when I hold him he screams like you are pulling out his fingernails, but he calms down for his mother. This started sometime during his hospital stay. I don't know why he likes her better. I never let anyone try to suffocate him(Just kidding Carrie. I love you). It is upsetting a little because I miss being able to hold my best friend without needing ear plugs. Anyway the spleen is on the back burner for now, or at least until they get the shunt figured out. Carrie had to call Dr. K tonight because Jordan threw his meds up again. You know I just had a picture in my head of me, Carrie, Jordan, Santa Cruz, and Nonchalante(our two dogs) laying on my king size bed laughing and playing. I can't wait for that day.
Patrick
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like at least June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Tuesday, May 27, 2003 9:45 PM CDT

Day 166

Well, we got some bittersweet news at clinic today. Dr. K. came in our room during one of Jordan's screaming fits and decided he was in pain and needed something. We gave him some Fentanyl and decided to do a spinal tap. His spinal pressure was 30! Can you say headache? This is a very high pressure. Many kids that have had pressures in the low 20s have had shunts placed to relieve the pressure and pain. Although we don't know how much relief we gave Jordan today, he is resting peacefully right now.
Dr. K. ordered a CT Scan for tomorrow. Depending on what the scan shows, we will talk to a nerosurgeon about placing a shunt. The pressure could be caused from the large amounts of steroids, or the disorder itself. Dr. K. assured us that this is not a sign of progression of Hunter's syndrome. She basically said that the steroids may have progressed a symptom that he was predisposed for. I hope I explained that clearly enough.
The word for now on the spleen is no surgery. Jordan's hemoglobin was at 9.1 today and at 4:00 am it will be two whole days since Jordan has needed a blood transfusion. His spleen is almost back to normal size and his liver function tests are returning to normal. At this point it seems we are controlling the problem with the meds. If he is still breaking down cells rapidly at this time next week, we will meet with the surgeon about spleen removal, but at this time the spinal pressure is more of a concern. High spinal pressure for an extended period of time can cause brain damage, so we want to resolve this issue quickly. Dr. K. lowered Jordan's steroids by 20oday in hopes of giving him some added relief.
Although this is not great news, at least we are getting some answers to why our child is not sleeping and is constantly screaming. Thank GOD for baby steps in the right direction!
Please pray for the doctors to have the knowledge to help our son feel better. Also continue to pray for all the other transplant kids. Say an extra prayer for Andrew Bowman. He is recovering from his shunt and port placement surgery today. He did really well but will take time to recover. Pray for baby Noah too!
I have several people to thank for sending us monetary donations today. There are many, so bear with me.
Uncle Jeff Irvine -- You amaze me with your kindness, Thank You!
Thurman & Margaret Doolin -- Thank You!
Pattie Cantey -- Thank You!
Nicky & Linda Brown -- Thank You!
Norma & David Collins -- Thank You!
Todd Vohland -- we love and miss you, and I will call you soon. Thank you!
Thomas & Peggy Pistoruis -- Thank You!
Eleanor Tucker -- Thank You!
Lewis & Helga Sanders -- Thank You!
B & S Truck Repair -- Thank You!
We want you all to know how much we appreciate every penny. You have no idea how much your generosity has lifted a weight off our shoulders. Worrying about paying bills is tough when everything is going well and almost unbearable when worrying about a sick child. Thank you all for your kindness and generosity. Special thanks to those of you who we don't even know, yet you have given us your support.
Thank you to Jeanne, Caroline, & John Michael for the cute outfit. I am ready to take Jordan to the beach for a boat ride in that outfit.
Thank you to Alicia Bennett for the adorable Pooh outfit and hat.
Thank you to Saundra Freeman for your article! As a result we have recieved outfits, diapers, wipes, & coupons from your faithful readers. Thank you to all who donated!
Thank you to Stephanie Potter for the article in the Herald and Review. You are a great reporter and friend.
Thanks to these wonderful reporters we are receiving support from Illinois to North Carolina.
Many thanks to all for love, prayers and support.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like at least June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Monday, May 26, 2003 10:51 AM CDT

DAY +165

Good morning to everyone. It was a really long night. Jordan's labs looked great yesterday morning. His hemoglobin was at 11.7 at 8:00 in the morning, but by 7:00 PM he had dropped back to 8.5. The doctors didn't want to wait until this morning to transfuse him, so we made a trip to the BOPP room on 5200 for a four hour blood transfusion at 11:00 last night. We finally got home at 4:00 this morning, and Jordan is doing really well right now. The blood really improved his mood. He is on the floor playing with his toys and smiling for everyone. I don't know how long this "good mood" will last, but we will enjoy it while it lasts. These moods have been few and far between lately, so we will take what we can get.
We said goodbye to the Binghams this morning. When Patrick, Jordan and I woke at 9:00am, Isaiah and Mishael were waiting in the living room to give us hugs goodbye. They were hanging out with Mike and Connie waiting for us to wake. We are sorry to see them go but are glad they are able to go home. We will miss you guys! Have a safe trip. Hopefully we will make a trip to Michigan soon to see you all.
Goodbye to Jill & Alex Schwab & Michelle and Jillian Fitzpatrick too. We feel like we are the only ones left. We are wondering if we will ever again see our Illinois home.
Well, I am going to go and enjoy the smiles that are left in my son. Don't forget to keep praying for Jordan and all the transplant families. Say an extra prayer for baby Noah.(www.caringbridge.org/hi/noah) He is in the PICU on an osilator.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like at least June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Saturday, May 24, 2003 10:44 PM CDT

***New Pictures***
This is going to be a quick update because we are tired and want to get some much needed sleep. Jordan held on to his red cells pretty well over night. He only dropped to 8.2 today. This is a huge improvement. The doctors transfused him anyway in hopes that he can keep a higher level in his body, so he doesn't drop as low as he did earlier this week. The doctors are not sure what helped. I personally believe it was the steroid boost yesterday, but we can't keep giving that to him. Anyway, thank God for small steps. Jordan was feeling much better today and even gave away a few smiles. They were not his huge happy ones, more half-smiles, but we will take what we can get. Right now, we are still planning to talk to the surgeons on Wednesday and set a date for surgery. We will see how Jordan does. If he continues to improve, we will cancel the surgery. Pray that he resolves this on his own so that he doesn't have to go through the spleen removal.
I have several thank yous, if we have forgotten someone, we appologize. Things have been so crazy around here lately, and we don't want anyone to think we don't appreciate what you all have done. Please forgive us if we failed to mention your name.
Thank you to Uncle Alvin for the money. You are so generous, and we miss you.
Thank you to Merle Berns from Nokomis for your donation. It will help with expenses here.
Thank you to Orlan & Donna Janssen for the money and many coupons. I don't know if I thanked you before, so I'm sending a thank you note.
Thank you to Sawgrass Kennels in Forsyth for keeping our babies (greyhounds) from October to May. You were too generous, and we haven't forgotten your kindness. Santa Cruz and Nonchalant loved their stay.
Thank you to Mona & George Moore for taking in our greyhounds until we can get home. I know that they are being spoiled rotten, and I thank you for it.
Thank you to the parent of 6/grandmom of 14 for the donation and letter. You have needs of your own and yet you chose to help us. Thank you!
Thank you to Suzanne Eastman for the donation. You are our neighbor back home, and we look forward to meeting you in person when we return.
Thank you to Karen & Rod Lindley for the money. I know you said you didn't want a thank you card, but I have to at least thank you here. The money will help out with expenses here.
A HUGE THANK YOU TO ANGIE (Black) DOOLEY! She is putting together a benefit in Nokomis for us on June 7th (I think). Ang- you are such a great friend, and you will never fully know the extent of our appreciation.
Thank you to Kristy (Auman) for the candle selling fundraiser. We will make 50rofit from each candle sold. That is so awesome!
Thank you to everyone for the prayers and support! You are all so wonderful, and we love and miss you all.
Love,
Carrie

Friday, May 23, 2003 5:48 PM CDT

Well things have been rather rocky the last couple of days. We took Jordan's labs in yesteday morning, and his hemoglobin was down to 5.6 which was very low, lower than they expected. They had blood ready for him when we got to clinic. The doctor talked with us again about a splenectamy. We had a hard time getting his blood pressure under control due to all the different stuff they were pumping in to him. We were there 8 hours, and got home just in time to pump more meds into him. He has been very uncomfortable and frankly I can count the number of times I have seen him smile in the last 2 weeks on one hand. We drew labs this morning, and his hemoglobin was at 5.1. We were at clinic by 11:30, and he was getting blood by noon. We then talked with Dr. Scabolz(sp?) more in depth about a splenectamy. Him and Dr. K feel this would really help him if he doesn't resolve his blood issues. They decided to give him a boost of steroids, and IVIG today. Right now he is still in clinic, and they are trying everything to get his BP under control without great success. The first opportunity to have a surgical consult is wednesday. If things haven't improved dramatically by then they are planning to take out his spleen as soon as possible, but Sue the NP just told Carrie if things stay the way they are today, he will be admitted tomorrow or sunday, and he will get emergency surgery asap. We are very concerned right now, and I hope we can get this stuff resolved asap. We have to put our trust in the great doctors, and God right now. Till tomorrow.
Patrick

Friday, May 23, 2003 5:48 PM CDT

Well things have been rather rocky the last couple of days. We took Jordan's labs in yesteday morning, and his hemoglobin was down to 5.6 which was very low, lower than they expected. They had blood ready for him when we got to clinic. The doctor talked with us again about a splenectamy. We had a hard time getting his blood pressure under control due to all the different stuff they were pumping in to him. We were there 8 hours, and got home just in time to pump more meds into him. He has been very uncomfortable and frankly I can count the number of times I have seen him smile in the last 2 weeks on one hand. We drew labs this morning, and his hemoglobin was at 5.1. We were at clinic by 11:30, and he was getting blood by noon. We then talked with Dr. Scabolz(sp?) more in depth about a splenectamy. Him and Dr. K feel this would really help him if he doesn't resolve his blood issues. They decided to give him a boost of steroids, and IVIG today. Right now he is still in clinic, and they are trying everything to get his BP under control without great success. The first opportunity to have a surgical consult is wednesday. If things haven't improved dramatically by then they are planning to take out his spleen as soon as possible, but Sue the NP just told Carrie if things stay the way they are today, he will be admitted tomorrow or sunday, and he will get emergency surgery asap. We are very concerned right now, and I hope we can get this stuff resolved asap. We have to put our trust in the great doctors, and God right now. Till tomorrow.
Patrick

Wednesday, May 21, 2003 2:56 PM CDT

HAPPY BELATED 50TH BIRTHDAY PAW PAW DALE! WE ARE SORRY WE MISSED IT ON SUNDAY!
Day 160
We are finally back to our apartment after what seemed like an endless stay in the hospital. We were discharged today after an issue with high blood pressure yesterday (probably caused from the steroids). By the way, steroids are not fun. They make my happy baby chubby and mad. We were discharged with more medications than we were discharged with the first time we were on 5200. In addition to his regular meds, he is now on an extra antibiotic (because of the steroids), another blood pressure med. (also due to steroids), more steroids, and another anti graff Vs. host med that I have to give by pump 3 times a day. Man, I feel like we are moving backwards. This has no doubt set us back, but we are hoping to be home around the end of June or middle of July. Pray that we have no more setbacks! We miss everyone back home.
Nonetheless, we are back (Durham) home and happy about it. We are going to spend the rest of the night learning new meds and enjoying spending time with Jordan and Mom in our apartment, so excuse me for being so brief. The important thing is that Jordan is doing great, and we are glad to be home.
Thank you to The First Presbyterian Church of Witt for taking up a collection for our family. We appreciate all of you thinking of us. The donation will help with our extra living expenses.
Thank you to Clyde's Chapel Baptist Church for the donations and care packages. You are all very generous people.
Thank you to Saundra Freeman for the article and the cute outfit for Jordan. Your generosity and kindness have not gone unrecognized.
Thank you to all our friends, family, & even strangers for all the love and support we have received throughout this entire journey and especially the last two weeks while Jordan has been so sick.
Don't forget to pray for all of the transplant kids inpatient and out. We love you all and miss you.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like at least June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Tuesday, May 20, 2003 01:30 am

I was going to wait till tomorrow to update, but since I am not asleep at 1:30 in the morning I really can't think of anything else to do. The big exciting news is the phone call I got yesterday morning. I was cleaning the apartment and Carries mom was up at the hospital with Carrie and the baby. It went something like this. I said hello, and Carrie said guess who came to visit? I said I don't know who. Carrie said Jeff foxworthy and his wife. I was like yeah right, but no it is true while I was slaving away vacuming or something Jeff Foxworthy and his wife came and spent about 20 minutes with Carrie and the baby. They were laughing it up, and of course he made some comment about how Carrie had me trained. They sat around and talked about Jordan, and the fact that one of his girls was named Jordan...bla bla bla. Thanks Jeff for stopping by and signing an autograph for Jordan, and taking a picture with them. Of course the story of my life is I miss out on everything. The most famous person I have ever met was the Durham Bulls Mascot. Yippee. I am just kidding kinda. How exciting that must have been. I guess he was in town for the Duke Classic(Golf tournament). Carrie says him and his wife are super super nice down to earth people. I told Carrie that at least it wasn't Brett Favre or one of the Packers, because that would have meant immediate divorce. So anyway it looks like we will be getting out tomorrow. Jordan has slowed down a bit on needing transfusions. His spleen has gotten a bit smaller(thanks god), but they jacked his steroids way way up, so he doesn't like to sleep, pretty much all he wants to do is whine. Mom and Dad were able to get their bank issues resolved today. That is also wonderful. I know there are some people to thank, but I am deathly afraid to do it for fear of leaving anyone out, so Carrie can do it tomorrow if her and Jordan get to come home. I know there is something I am leaving out. Hmmm let's see Oh yeah another story about us is running in the herald & review today. Thanks Stephanie you are such a gifted writer, and who knows where we would be today if it wasn't for your caring and compassion. If anyone is looking to read it I think it is something like www.herald-review.com Yeah I just checked and that is it. Well it has been a tough road, and we have a long way to go but thank god for small miracles. Till next time.
Patrick

Saturday, May 17, 2003 2:36 PM CDT

Wel let's see today has been mildly interesting so far. Carrie called me at 8:00 this morning to tell me her nurse was so bad that she didn't sleep all night for fear that she would do something wrong. I guess last night she brought in Jordan's oral meds not labeled. As Carrie went through them she realized that the nurse had given Jordan a dose of one of his meds(fk for those of you who know what that is)that was 10 times the amount he is supposed to be getting. That was a huge screw up. Carrie had me type out a list of the more major problems we have had with some of the nurses on 5100. I brought it with me to the hospital and as I was walking through the door I came in during a conversation between Carrie and Dr. K about Jordan's spleen being enlarged. She went on to explain that she had been expecting this possibility. Before she went any further with that she had Carrie read her our list. She was not happy, and Carrie told her that she spent the last night with her stomach tied up in knots fearing that the nurse would mess something else up. Dr. k said that she would release Jordan, but she feared we would spend a lot of time in the Bopp room waiting for blood, and most of our days in clinic. Carrie and I agreed that we would prefer it to our current situation. Then out came something we hadn't expected to hear. There have been a couple of kids moved to the PICU from 5200, and since it should only be for a few days she thought she may be able to get us moved over there. Carrie to say the least was thrilled. So she just told me that they are cleaning a room for us now. This will mean great nurses, a real bed, and a lot of peace of mind. So after that news back to the spleen. It may return to normal on its own but the likely scenario is a spleenectamy(sp?) She thinks that this might help resolve some of the problems he is having. She told us there is a doctor at Duke who may be able to do a partial spleenectamy. This is where they would remove 95% of his spleen. This would resolve his problems, but allow his spleen to grow back in a couple of years. If they just take it out he would likely require penicillin for the rest of his life. This would be an inconvenience, but not a big one. Anyway Mom and Dad left to go back to Illinois. I guess either at CVS or the grocery store someone got a hold of Dads debit card number and started charging stuff. So they have to go back to Illinois so they can get things straightened out at the bank. This is not great timing, and I hate to see them go. They are a tremendous source of help and support. If I get a hold of the guy who did that I am going to.... well some of you can imagine what I would have said next. At least we still have Carries mom here which of course is a blessing. I hope she doesn't think she is leaving real soon though. We may kidnap her. In summary things kinda stink, but they could be worse, and other things stink less than they did so at least we have that.
Patrick

Thursday, May 15, 2003 4:38 PM CDT

Day +154
Well, today has been a better day, but we had a rough night. Jordan and I only got a few hours of sleep because of many interruptions for meds and a few times when Jordan's SATs dropped, and his alarm went off. Come to find out, these drops in his oxygen levels are due to his feet getting cold and the machine not tracking well. WOULD SOMEONE PLEASE GET HIS ACT TOGETHER SO THIS MOTHER DOESN'T HAVE A HEARTATTACK FOR NO GOOD REASON!
I had a competent nurse this morning who explained to me that the pulse oximeter needs to be on a place that has good blood circulation. The only place to put it on a baby is his foot. When Jordan goes to sleep, his body temperature goes down because he isn't moving thus making his Oxygen Saturations not accurate. We realized this today when Jordan was wide awake and playing (obviously breathing well) and his pulse ox was still reading 82% because he had just been asleep. If this were a true reading, he would have been having great difficulty breathing. I am no longer keeping an eye on that machine and am paying more attention to how Jordan looks. Unless his breathing seems labored, I'm ignoring the machine. Thank God for small miracles in that his breathing isn't a major issue anymore.
Jordan has only needed one blood transfusion today so far. Hopefully the new drug is working, and he will resolve the antibodies. This new drug is supposed to destroy the B cells in his blood that the antibodies are clinging to. If it does its job, Jordan will resolve this issue soon. Dr. Driscoll said that Jordan has to be down to one blood transfusion or less a day in order to go home. He is still thinking that it will be Monday or Tuesday before we are released, but he said that Dr K. will be on this weekend, (I hate to say this for fear of jinxing us) so we may be able to skip our big clinic day on Tuesday since Dr. K. will see him. I am not going to hold my breath, but I can hope.
Thank you to everyone for the prayers, guestbook entries, phone calls, & overwhelming support. It means so much to us. I say it all the time, but those little things keep us going. It has been such an emotional few days that I cry (a good cry) every time I read the entries to the guestbook, but please keep them coming!
Thank you to John & Sally Jenkins for the check. We appreciate your generosity.
Thank you to Stephanie Potter at the Herald and Review for calling today to get some information on a new article about Jordan. She wants to update everyone on his condition and hopefully get us a little more help too. This story should print this weekend. We don't know which day yet. I will let you know when we know something.
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Wednesday, May 14, 2003 8:46 PM CDT

Well let's see. I have to tell everyone that things are going ok. Jordan is no longer in any pain, but he is kinda restless and unhappy most of the time. He is not eating well, and going through blood transfusions twice a day. Dr. Driscoll told us today that we are probably looking at getting out on monday or tuesday if things go well. that's right an overnight observation has turned in 8 or 9 days. We are really frustrated with the whole situation of being on 5100 probably because we were so spoiled on 5200. On 5100 our nurse has up to 5 or 6 different patients compared to 1 or 2 on 5200. Carrie had a problem with her nurse last night. She left an open safety pin on his bed, forgot to give him a med and took 30 to 40 minutes to answer when Carrie called her. So Carrie was quite upset. She feels he isn't getting monitored like he needs to be. She axpressed her frustration to the nurse manager, and was basically told that there was nothing that they could do about it. This further frustrated Carrie. Carrie was overheard saying that she would rather be in a Janitors closet (aka Bopp room) on 5200 than in a room on 5100. The nurse who overheard was a bit offended, and the nurse manager brought this to her attention. I don't think Carrie was concerned. She told her that she was not apologizing for saying it because she meant it. But we did have better nurses today and tonight. So overall you could say it is going to be a long weekend on 5100.
Patrick

Tuesday, May 13, 2003 12:02 AM CDT

OK here is where we are at now. I got Carrie to come home and she is still sleeping thank god. I just talked to her mom and she said Dr. Driscoll came in and said that they are going to cut down on his fluids to see if he will eat. They also want to hold off on giving him o2 unless hes sats drop down into the low 80's for 3 minutes. If he can keep his sats up and will start eating he may get discharged and have to be in clinic for blood transfusions twice a day until he starts to hold on to his red blood cells. Hopefully things are looking up some. I know it really means a lot to Carrie and I to get all these guestbook entries. It is overwhelming how much people seem to care. Keep it up. I'll update asap.
Patrick

Tuesday, May 13, 2003 7:32 AM CDT

Just a quick update for the morning. When I got back up to the hospital last night Jordan was happy and playful. When I left he was sleeping. I guess he felt pretty bad through the night and he is going through blood faster than ever. I would be surprised if we got released today, because he is also back on 02. I am going to bring Carrie home and let the Grandmas deal with things for a while. We are very tired worried and frustrated. one of us will update later today.
Patrick

Monday, May 12, 2003 3:07 PM CDT

Day +151


First of all, thank you for all the many many prayers. It was a very difficult first mother's day, but one I will never ever forget. I am just happy that I still have my baby to worry about, whatever day it is. Jordan is still in-patient, but is improving. Right now, the doctors are still unsure of what all is going on, but are working their tails off to find out.
Jordan rested a little last night despite some over-zealous surgeons that scared us by coming in every hour or so discussing whether or not Jordan was going to need emergency surgery for a bowel obstruction. After four different doctors came in, flipped on all the lights, woke up Jordan, poked around on his belly, asked the same 4 or 5 questions, and then went "to look at the X-Ray," I lost it. The fourth surgeon said,"do you think he has been restless." My very sharp reply was, "of course he's restless. You guys keep coming in here waking him up." He then left and didn't come back.
After a frustrating night of no sleep, Jordan was doing better when Dr. K. came to see him. I was so upset this morning with not knowing what was wrong or what could possibly be wrong, I called Dr. K. Within an hour, she was in Jordan's room talking to me and making me feel better. She explained that his pain and nasty diapers could possibly be from Graff Vs. Host or another bout of C-diff. Although the c-diff test came back negative, it is not extremely reliable. Also, she suggested that with breaking down red blood cells, he may have developed gall stones, which will cause episodes of painful spasms followed by minutes or hours of no symptoms. Hopefully the ultra sound of his gall bladder that was performed a little while ago will tell us more.
So far, all tests have been negative and his line cultures haven't grown any bacteria, so we will let you know what we find out. We are staying in the hospital again tonight with no real estimate of when we will be going home. Maybe tomorrow.
I will leave you with a positive note. Jordan has been on oxygen since yesterday morning. Everytime we removed the oxygen his SATs would stay up until he fell asleep and then they would drop to 88-89% (we want them above 92). The good news is that I left the hospital at 12:30 this afternoon to come home for a few hours sleep, and he has been off oxygen the entire time i've been gone and his Sats are staying up. When he sleeps they are dropping to 90-91%, but the doctors see this as an improvement, and he is not needing the oxygen to be comfortable. We really don't have an explination for the low pulse ox Sats. Dr. K. said it could be due to him breathing more shallow because of the pain or because of low red blood cells (which carry oxygen to the blood). I guess both make sense with the pain and low hemoglobin he has had. I just ask you all to keep the prayers coming, and also keep the other kids on the unit and out patient in your thoughts and prayers.
Thank you to Ellen Bowman for the emotional support yesterday.
Thank you to "the pick-me-up crew" from Davenport, FL for the outfits and gift certificate.
Thank you to Uncle Alvin for the check. It was so nice of you to think of us.
Thank you to Mom & Dad Horton for being here and being so supportive through my "first mother's day."
Thank you to my Mom (Yeske) for dropping everything to run to my side when I need you most. You are truly an amazing mother, and I love you. Happy mother's day. I can't wait to see you some time this evening (late).
Thank you to everyone who sent us e-mail and guestbook messages. You have no idea how much that support means to us. We are forever greatful.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Sunday, May 11, 2003

Well, I really don't know where to begin, and I don't know how much to tell, but I will just start, and see where I end up. My aunt kathy and uncle buster came down from the mountains to visit with Mom,Dad,Carrie, Jordan and I. Mom went with Carrie to clinic to get his IVIG. When I went to pick them up Carrie told me that Jordan had to be back up in 30 minutes because he needed blood again. Well they had blood left over from his last transfusion so we disn't have to wait to get it. So I dropped Carrie back off at clinic around 8:00pm. They were done at 11:15 so I went to pick them up. Jordan got to spend a little time visiting before bed. Jordan woke up this morning around 5:45 Carrie tried to get him back to sleep, but he was so fussy. Mom came in around 6:30 and said they would take him and let us sleep for a little while. about 7:30 mom came in to tell us that Jordan was sick. He had thrown up, dry heaving, and diarhea. So we hurried him in to clinic. They started him on fluids, cultured his lines and his diaper. They then started him on IV antibiotics as a precaution. Then they ran another test and we found out that he needed blood again. Oh also the oxygen level in his blood was low so they put him on a tiny amount of oxygen. They decided that the best thin was to admit him for observation so after his blood was done this evening we went up to 5100. There were no rooms on 5200 so they are stuck in a tiny little room with other sick kids around. So we made sure they make our nurse wear gloves, mask, and a gown. So right now we are in limbo. Sometimes Jordan is happy and smiling, but mostly whining and crying. The frustrating part is nobody is for sure whats wrong with him. They think it is this or it might be that, but we have come to learn that doctors are by no means infallible so you take what they say with as much merit as you think it deserves, and wait for the test results.

Anyway Kathy and Buster. I really wish we could have spent more time with you guys. I did not realize how much I missed you two until I saw you. Please don't let this weekend scare you off from coming back real soon. You are always welcome in my home anytime. Maybe you can even talk me into cooking again.

But to summarize we are keeping it together. Jordan as it stands right now is ok. We will let everyone know as soon as we can.

P.S. Carrie happy mothers day. I wish your first would have been better. But Jordan will make it up to you next year.
Patrick

Friday, May 9, 2003 6:32 PM CDT

Day +148
This is going to be a quick update. Jordan's hemoglobin dropped from 11.0 yesterday to 7.9 today. Once again we have to wait for blood. It was ordered at 10:30 this morning, and the lab told us it would be at least 9:00PM before it is ready, so we will be spending Friday night in the broom closet (BOPP Room) on 5200.
Once again we wait while our son cries and is uncomfortable. It is so upseting to see him hurting and know we can't do anything about it. Please pray that Jordan resolves these antibodies soon. Dropping like this is so hard on his little body. It obviously exhausts him and us. Jordan has done nothing but whine all day, and I have cried as much as him. Ellen, I have a little taste of what you were going through! Honey, I don't know how you made it. It breaks my heart not being able to help him. Please pray pray pray for my son. Pray for his comfort. Also pray for all the other kids here!
Love,
Carrie
Thank you to Jim & Carol Beeler for the check. We appreciate your generosity.
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Thursday, May 8, 2003 8:06 PM CDT

Day 147

Well, as Patrick said in the other entry, Tuesday was a difficult day at clinic. The official word is that Jordan has hemocratic anemia. This is caused by three antibodies that he has developed in his blood. These antibodies see his red blood cells as foreign and attack them causing his hemoglobin to drop rapidly. This was probably caused by his immune system returning. It is common among transplant patients, but it doesn't make it easier to deal with. On top of that, he has developed an antibody to his platelets. Dr. K. is not worried about this because he is producing platelets very well. She doesn't think he will even get low enough to need a platelet transfusion. At least there is a little silver lining around our cloud. Every time we think we are going to come home, something else happens. Although we have been lucky not to have any major issues, all these little ones start to add up after a while.
Ok, so the treatment is wait. Dr. K. upped Jordan's steroids to 6MG twice a day (that's more than what he was on when he was discharged from the hospital). She also gave him a 35 MG boost of steroids in clinic on Tuesday. Jordan got blood Tuesday and Wednesday. We have to draw labs everyday and go in to clinic everyday for 5 days for IVIG. The IVIG is an immune builder and hopefully (along with the steroids) will help his body resolve the antibodies. Dr. K. said it could be weeks or months. The longest it has taken anyone to resolve the antibodies is two years. "THANKS DOC; that's just what I wanted to hear!" She said that the patient was not here the entire time, but that Jordan has to be much more stable than he is right now before we can come home. Getting as low as he did on Tuesday is very dangerous.
It was really scarey for me to watch him so pale and lethargic and know I just had to wait for someone in a lab to match his blood type. As the hours went on, Jordan became more and more disoriented. He quit eating, smiling, responding to everything. His heart rate was very high. He was miserable and so was I.
Anyway, today was much better. He was pink and back to his happy self. Tonight he was crabby though. I think the steroids are starting to affect his mood. Normally it takes a while for us to see the steroid effects, but not this time. With such a high dose, we have already seen a change in appetite and mood. I pray this will not last long.
So, I ask all of you for prayers. I want to go home. I know that Jordan needs to be here right now, but I am so sick of this place it kills me. Pray that my son will be stable and healthy. Pray that I can sleep in my own bed. Pray that Jordan, Patrick and I can sit in our back yard and watch my dogs run. Pray for my son and all the other families here.
I am so desperate for home. I want to see the redecorating that my Mom has been so busy doing. I want to see my sisters, my Mom, my Daddy, & all my friends. I don't want to have daily reminders that at any moment life can end. I know there are no guarantees, but I want a little bit of normal. I don't want to worry about how long we are going to be here and how we are going to pay to stay here another month or months. Is that too much to ask?
Please don't get me wrong, I am thankful for everyday that I have with Jordan, for God, for the Doctors here, for the nurses, for DUKE! Tuesday just really got to me, and I haven't gotten over it yet. We really thought we were going home, and now I'm heartbroken that we aren't.
Sorry to end on such a negative note, but I don't have the energy to be positive right now.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Wednesday, May 7, 2003

I am really not looking forward to updating today. There is so much to tell and I don't know where to begin. Before anyone freaks, let me just say that Jordan is ok. Carrie Jordan and I went to a Durham bulls game with some of the other transplant families on monday. Jill Schwab called the front office and talked them into donating a sky box to us. It was only transplant kids and their families, and the sky box only held so many so so the group was small. We showed up early to avoid the crowd, but being a monday game with iffy weather there was only a couple hundred people at the stadium. It was a very special day to have been able to take my son to a baseball game and share my love for sports with him. Wooly bull the mascot came up for a visit, and if you want a good laugh check the picture page. Of course the Bulls pulled out a great win.

We took jordan into clinic yesterday, and his hemoglobin was down to 5.0 from 10.8 on sunday. This is a big drop, and by the time he got blood he was very lethargic, pale, and wasn't eating. we finally got out of clinic at midnight. So we had a 13 hour clinic visit due to waiting all day for blood. They found out he has developed a new antibody in his blood which makes 3. They also found one in his platelets. This means that his red blood cells, and platelets break down faster than they are supposed to. This is not life threatening, but of course Dr. k upped his steroids higher than ever before. He also has to get IVIG everyday in clinic for the next five days. That takes 2 hours. He also has to get blood again today. That is three hours. So the verdict is that all these problems will resolve themselves. It could take weeks, months or even a couple of years. Until then we have to get his meds straightened around to keep this under control. So the end of may might be premature. Dr. k said that she could give us a guess on when we could go home, but it would be only a guess. This a big let down. We were so looking forward to getting the baby home, and see our friends and family. Mom and Dad got here today to help us out. They were a sight for sore eyes. Things are getting a little overwhelming and we sure appreciate the help. Anyway I am sure I left out some stuff but Carrie can take care of the rest tomorrow. Please say an extra prayer for Jordan. He has us a little worried for him. Also My buddy Jacob is having a rough time back in Virginia. We miss him and his family(www.caringbridge.org/va/jacob . Until tomorrow.

Patrick

Wednesday, May 7, 2003

I am really not looking forward to updating today. There is so much to tell and I don't know where to begin. Before anyone freaks, let me just say that Jordan is ok. Carrie Jordan and I went to a Durham bulls game with some of the other transplant families on monday. Jill Schwab called the front office and talked them into donating a sky box to us. It was only transplant kids and their families, and the sky box only held so many so so the group was small. We showed up early to avoid the crowd, but being a monday game with iffy weather there was only a couple hundred people at the stadium. It was a very special day to have been able to take my son to a baseball game and share my love for sports with him. Wooly bull the mascot came up for a visit, and if you want a good laugh check the picture page. Of course the Bulls pulled out a great win.

We took jordan into clinic yesterday, and his hemoglobin was down to 5.0 from 10.8 on sunday. This is a big drop, and by the time he got blood he was very lethargic, pale, and wasn't eating. we finally got out of clinic at midnight. So we had a 13 hour clinic visit due to waiting all day for blood. They found out he has developed a new antibody in his blood which makes 3. They also found one in his platelets. This means that his red blood cells, and platelets break down faster than they are supposed to. This is not life threatening, but of course Dr. k upped his steroids higher than ever before. He also has to get IVIG everyday in clinic for the next five days. That takes 2 hours. He also has to get blood again today. That is three hours. So the verdict is that all these problems will resolve themselves. It could take weeks, months or even a couple of years. Until then we have to get his meds straightened around to keep this under control. So the end of may might be premature. Dr. k said that she could give us a guess on when we could go home, but it would be only a guess. This a big let down. We were so looking forward to getting the baby home, and see our friends and family. Mom and Dad got here today to help us out. They were a sight for sore eyes. Things are getting a little overwhelming and we sure appreciate the help. Anyway I am sure I left out some stuff but Carrie can take care of the rest tomorrow. Please say an extra prayer for Jordan. He has us a little worried for him. Also My buddy Jacob is having a rough time back in Virginia. We miss him and his family(www.caringbridge.org/va/jacob . Until tomorrow.

Patrick

Sunday, May 4, 2003 9:04 AM CDT

Day 143

Good Morning to all. We are trying to recover from no sleep on Friday night. We were in the BOPP room until midnight. Jordan had to get blood and of course it took them almost 12 hours to get it for us. Therefore, we were transfused on 5200 instead of clinic. That's ok though, at least he got what he needed.
Today is going to be a lazy day for us, but yesterday we got our exercise. We went to the 3rd annual Rainbow of Heros Walk (of couse we forgot our camera). This is an event that helps raise money for activities for the children on 5200. The child life program doesn't get funded by Duke, so they have a walk each year to raise money for things like the art mates projects, welcome packages for families on the unit, etc. We (Jordan and I) walked (he rode) all 13 laps around the track to honor all the transplant kids. Patrick walked about half before Isaiah talked him into going and playing games instead. I don't think Isaiah had to twist his arm too hard. We enjoyed ourselves (at least I did). We got to see many other families that have been through transplant recently and many years ago. It was nice seeing many of the friendly faces again. There were games, cotton candy, popcorn, and a bounce house. It was a happy day, but it was hard too. I saw Ryan Kishbaugh's mother, and McKenzie's mother. I know it had to be difficult for them to be there, but they were strong as ever. Roberta & Christine: it was great seeing you both! Dr. Kurtzberg and Dr. Martin showed up to walk as well as many of the nurses from 5200. After the walk, we released balloons in honor of all the transplanted children and for all the children who have become angels. This was the hard part of the day. As "Somewhere over the Rainbow" played, the balloons went up and the tears streamed down. Perspective is everything! I held Jordan close and thanked God that he is still with us and doing well. I can't believe that out of 16 kids that were originally on the unit when Jordan was transplanted, we have lost 8 Kyle, Mitch, Brittany, Ryan, McKenzie, Keshon, Reese, & Travis. It was sad remembering them and the reality that we are of the 50hat made it.
We did get T-shirts with all the kids names who were transplanted from April 2002 to March 2003. They are nice momentos.
Well, as always I have a prayer request for all of you. Noah is struggling with losing his graft, and it is too late to do another transplant. If his boost doesn't work, they will have to make him as comfortable as possible. This is so sad. Also, Jillian L. (Jordan's buddy) has relapsed. She is the one who calls Jordan a little bear cub. She is so cute, and we pray that she can fight this battle and win.
On a positive note, Nolan is doing really well and may be coming home to their apartment soon. Way to go Nolan!
As always keep all of our kids in your prayers, and thanks for all the support. We love and miss you all.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Thursday, May 1, 2003 7:34 PM CDT

Day 140

Hello all. The last few days have been uneventful here. Patrick and I took Jordan to Duke Gardens for another picnic on Wednesday. Check out the new photos. We had a great time feeding the ducks and being out in the fresh air.
We went to clinic today for a weight, and blood pressure check. Everything looks good, but his hemoglobin dropped from 10.8 on Tuesday to 8.7 today. This was a pretty dramatic drop since he just got blood on Sunday. So . . . we have to draw labs tomorrow morning, and Jordan will probably need blood. I just hope that they can get his blood in a reasonable amount of time instead of taking 8-10 hours to get it. This is one of the things that concerns Dr. K. about us going home. She wants to make sure that we have the resources to get blood at home like we do here.
On a positive note, Jordan's platelet count went up today. Hopefully he will test negative for the antibodies against platelets, but that test is still processing. (more waiting) This place is all about waiting. Mom, I have learned what patience is. After all these years, I've finally learned. I wish God didn't feel he had to teach me that lesson this way.
Keep praying for Jordan and all the other children. Keep Travis's family in your prayers for their loss as well as the other children who are having major struggles with the transplant process. Praise God that we have been so lucky!
For those of you who know Jaxon (he was the second child transplanted for Hunter's syndrome), he is doing great. Kendra and I went up to the pool for a while today. It was nice seeing her and Jaxon. Keep up the good work buddy!
Well, it is 8:30, and Patrick and I are going to bed. Patrick has hives (we can't figure out what's causing them) and is feeling lowsy, and I am just plain tired. It is so sad that I am excited about going to bed early. Since Jordan is getting up 2 or 3 times during the night, I cherish all the sleep I can get. Thanks for all the guestbook entries; we really enjoy reading them. More later . . .
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Tuesday, April 29, 2003 8:50 PM CDT

Day 138

Well, I wish I were starting this update with Good news, but unfortunately Travis Williams (www.caringbridge.org/hi/twilliams) joined our long list of Angels today. He was transplanted right before Jordan and has been fighting for so long. His fight finally ended today. Please keep his family in your prayers.
On a lighter note, clinic was actually short today compared to the last two weeks. Jordan's labs would have looked awesome if it weren't for his platelets dropping. For some reason, he is starting to lose them. He has been around 100,000 for quite a while and the last few times we've drawn labs they have been going down to the 60,000s. Today he dropped to 37,000. Dr. K. thinks he may have developed antibodies that are breaking down his platelets (just like they are doing to his red blood cells). She drew a test today to confirm her suspicion. We should know something in the next few days. If he tests positive for these antibodies, they will give him more IVIG (immune builder). Until his platelets are around 100,000 again, they won't consider doing the surgery to place his port. The chance of bleeding would just be too great. So, again we wait.
On a positive note, we came home from clinic one lumen short today. Jordan's single lumen catheter (the line placed in his chest) has been slowly working its way out while Jordan has grown. Dr. K. wasn't worried because I could still draw blood out of it. Today, I couldn't draw a drop of blood out of that thing no matter what I did, so in clinic she decided to remove it. It was really anti-climatic compared to getting the lines placed. Dr. K. just snipped the stiches and pulled the line straight out of his chest. He didn't even flinch. Actually he was smiling the whole time. This will make dressing changes much easier now.
We still haven't gotten Jordan's enzyme test results back, and I was informed today that we may not get them back at all. If we do get them back, Dr. K. is unsure of the accuracy of the test. The lab tech that use to do the test results has quit, and no one has been trained to do the test yet. We will probably have the results of the 6 month study before the one from his 100 day study . . . more waiting. How frustrating!
At least Dr. K. hasn't said we have to stay here longer because of these issues. She didn't lower his steroids today, but we are ok with that. I don't want to lower them too quickly and him have more problems. Despite the long day in clinic, we did get good news too. Jordan's C-diff test came back negative! YEAH! This means his infection is gone. Let's pray that it doesn't come back. C-diff is one of those things that can come and go. We want Jordan to stay healthy so that he can grow more female cells. With all the excitement of pulling Jordan's lines, I forgot to ask Dr. K. about the 51.5onor cells. I guess she is not at all worried about it, or she would have said something about it to me. I assume we will draw another FISH test in around 3 weeks. As always, I will let you know what we find out.
Please continue to pray for the PBMTU kids in patient, in PICU, and in clinic. Nolan & Noah are both improving, so your prayers are working. Andrew Bowman's surgery went well today, but he has high spinal fluid pressure. We hope that the doctors can relieve some of his pain by taking care of this problem. Ellen, we are thinking of you and praying that relieving that pressure can give Andrew some comfort. We love you!
Eleasha, I'm sorry you had such a bad day. I guess everybody was "snapping" today. Have a safe trip home. We will miss you guys!
HAPPY 6 Month Birthday JORDAN! I can't believe that you are that old already. It seems like yesterday that I was holding you in my arms for the first time. You have been through so much in those short few months of your life, but hopefully the end result will be positive. We love you baby boy!
Thank you to all the guestbook entries! It really means so much to us to read messages from everyone, so don't be shy. Sign the guestbook and let us know you're checking up on us. We miss and love you all!
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Monday, April 28, 2003 8:05 PM CDT

Day 137
Happy 6th month birthday tomorrow Jordan!
DADDY IS HOME! YEAH! Patrick got home around 11:30 last night. Jordan must have known Daddy was close because he started moving around in his crib about five minutes before Patrick came home. Of course he had to get up to see his Daddy.
Mom got home safe and sound but sick. She had to call and make sure Jordan wasn't sick this morning. She thought it was food poisoning from the food she ate at the airport in Atlanta, but wanted to make sure she hadn't passed on something to Jordan. He is fine. I guess it was the food, but I hope you are feeling better Mom. We love and miss you!
We have enjoyed today. It was beautiful here. We spent the afternoon at Duke Gardens. Patrick, Jordan, & I had a picnic by the pond. It was so peaceful. Jordan loved laying on the blanket in the shade while Patrick fed the ducks. Then, the ducks started flocking to us. Two ducks in particular followed Patrick from the edge of the water to our blanket and hung out for a while. They even ate out of our hands. It was amazing. While I was feeding Jordan, one of the ducks decided to camp out and take a nap right next to Jordan's stroller. He was inches from us. It was so great. I think they loved Patrick. He fed them and made friends for life. I was sorry I didn't bring the video or digital cameras. We are going to try to go back later this week, and I will not forget to take the cameras so we can share the beauty with all of you. As Nancy & Ed Aman wrote in our guestbook, I think that rainbow was a sign of the good things to come.
I told my Mom & many others when we found out Jordan was going to be born with Hunters that I had a good feeling about everything. I have had moments throughout this process when I have been scared and upset, but through everything something has given me peace. Some days it is hard to be positive, but I really do believe that Jordan is going to be ok. Sometimes during the day I forget to listen to my heart, like when Jordan is uncomfortable or sick, but at the end of the day I hold him in my arms and know that everything will be fine. No matter what happens, I am at peace. I had that feeling today while we were at Duke Gardens. I was sitting there with Patrick & Jordan, enjoying the beautiful day and thought, "this is what's important in life."
Days like today make me so thankful that I can hold Jordan in my arms and watch him laugh, play, talk, & slobber. I enjoy him "getting into things." I can't wait for him to crawl and walk. Everyone keeps saying, "no you don't." Yes, I do. I can't wait until he can walk around and make messes. I will just be happy that he is able to do it. Sorry, I just had to let you all know about the good things here. I always tell you about test results and about the bad experiences, but I wanted you all to know that we have great moments too. Today was one of them. When Jordan smiles or giggles, we have another. Thank you God for the small things; they are most important!
Thank you to Eleasha for the boppy! We enjoyed seeing you, Cody, & Riley yesterday. Riley made Jordan laugh and smile so much. It was really good for him. Man are we going to miss you guys!
Please continue to pray for Travis, Nolan, Noah, Andrew, the nicoll brothers (www.caringbridge.org/co/nicollbrothers), and all the other transplant kids on the unit, in PICU, and outpatient.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Sunday, April 27, 2003 3:21 PM CDT

Day 136
This was the view from our apartment patio yesterday afternoon. It was beautiful. I was hopeing for a pot of gold, but I had no such luck.
Mom left this morining, and I miss her already. One more month Mom. That's right, the word is end of May! Dr. K. is going to try to schedule Jordan's surgeries (port and hypospadius) the last few weeks in May. Also, she is going to do his 6 month studies a week or two early so that we can go home. This is (of course) not set in stone, but man are we getting excited.
Patrick is on his way back to Durham. Pray that he has a safe trip. Jordan and I can't wait to see him. Jordan even said DADA today. I don't know if he meant to, but it warmed my heart. I just wish Patrick would have been here to hear it.
We just got back from clinic a little while ago. Jordan had to get a blood transfusion. It has been three weeks since his last one, so he keeps getting better and better. I can't wait till he doesn't need them at all. He is slowly getting stronger and healthier. What an amazing child we have. We saw Ellen, Andrew, & Simon Bowman. Andrew is still uncomfortable. One would think with all the medical knowledge today the doctors could manage his pain. Hang in there Ellen! I know you're tired.
I ask that you all pray that the doctors can help relieve his pain. Don't forget all the kids on the unit, in PICU, and outpatient as well. Some of the kids are really struggling. Travis (www.caringbridge.org/hi/twilliams) is back on the vent. in the PICU. Noah's (www.caringbrdige.org/hi/noah) parents have signed a DNR and put their faith in God. They are praying that God's will be done. Nolan (www.caringbridge.org/co/nolanramsey)is still in the PICU, but doing better. All the kids need prayers.
Thank you to Uncle Alvin for the cute outfit and Japanese figurine. We love them.
Congratulations to Nurse Danielle! She had a baby boy yesterday! Danielle is Jordan's favorite nurse, and we are going to miss her while she's on maternity leave.
Hi to Nancy, Mark, Les, Leann, Butch, Stacey, Jeremy, Yes even IZZY, and everyone else that Patrick ran into while in Decatur! Patrick told me you all said hello, I hope I didn't forget anyone. I miss you all.
Well, that's all for now. I hope you all enjoy what's left of the weekend.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Friday, April 25, 2003 7:35 PM CDT

Day +133

Hello all-
Patrick and Mom had good trips. Jordan and I are enjoying our visit with Mom, and Patrick is enjoying spending time with his friends and family. Hurry home honey, we miss you!
We got the FISH test back . . . still 50% (51.5% exactly). At least we haven't gone down! Yes, again we are somewhat disappointed, but we are so thankful that Jordan is doing so well that we can't be too upset. I spoke with our case manager for our insurance company today, and she made me feel better. She said that several people don't reach 100% until a year post transplant. We will talk with Dr. K. on Tuesday about what she thinks, but we will probably do more waiting. Although it is hard to see several other kids at 100%, we haven't experienced setbacks that other families have experienced, so I'll take 50% donor cells over no cells or major complications. At least he is producing some enzyme. When we get the test results, we will know how much (again more waiting). For now, it has been enough because Jordan has no symptoms so far. Thank God for answered prayers!
Mom and I took Jordan to Duke gardens yesterday. Ellen, Andrew, & Simon Bowman went with us. It was a beautiful day, and (once we found the gardens ha, ha) we had a great time. Thanks for hanging out with us guys; we enjoyed it very much! It was sunny, and it was nice to get out of the apartment (unlike today which has been rainy and yucky). I'm glad we spent time outside because we won't get a chance the rest of the time Mom is here (it's going to rain all weekend). Other than that, we have just been enjoying lots of smiles and giggles from this precious boy.
I wanted to tell you all the cutest story about my neice, Sheridan. My sister Angie told her that the Easter bunny was going to take her pacifier "paci" to Jordan for Easter because he needed it (because he's sick). Easter Sunday was her birthday, so I called to wish her a happy birthday. She got on the phone and said, "Hi Aunt Carrie. Where's Jordan?"
"He's sleeping. Do you know what the Easter bunny brought Jordan?"
"My Paci . . . I don't need it anymore . . . gotta go"
That was that! She said what she had to say, and she was gone to enjoy her birthday & Easter toys. I can't believe how much she has grown up since we've been gone. Angie & Luke, you guys have done a great job with her. She is a doll. Sheridan, we will be home soon, and you can have your birthday wish to "hold Jordan."
Thank you to St. Teresa. I miss all of you guys so much! The package you sent was wonderful. Jordan loves his book, and the outfit is adorable. We will use the formula and cereal, and the gift certificate and money are also greatly appreciated. You guys have been so supportive of every inch of this process, and I want you to know how much it means to me. I can't wait to see you all, and be back at school. If all goes well I will be back in August!
Thank you to Libby Brown. Jordan is going to look adorable in his new outfit.
Cherie, you are an amazing sister (Angie, you are too). The work you and Mom did on our house to get it ready for us to come home is awesome (Mom showed me the pictures). I love you so much and miss hanging out. The house looks awesome. The spoons are so cute. Thanks! Tell Dave thank you for the floor; he did a great job.
Mom, Grandma Glavish, & second Mom Joann, I know you had a big job cleaning a house that had been empty for several months. You guys are wonderful ladies. I love you all. Thank you! Thank you! Thank you! I love all of the remodeling! I won't even know my own house when we get back. When we get home, it will be like "While you were out," except we've been gone seven months.
Tom & Lola, thank you for the check. It really helps with expenses.
Thanks to everyone's prayers, support, and love. It really does mean so much. Thank you to everyone who has sent a card or letter or a phone call. You are wonderful, and we love you all.
Love,
Carrie

***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Wednesday, April 23, 2003 1:56 PM CDT

Day +131
Well just when we thought we would have a short clinic day, we stayed 10 hours in clinic again! At least they are consistent. The clinic was a little bit more bearable since I was able to see Shawn Coble (Angel Reese's Mommy). Shawn & Doug came to visit with us and many of the other transplant families yesterday. We enjoyed seeing you guys. I love and miss you already.
Jordan's labs look really good and his blood pressure was low so Dr. K. decided to cut his blood pressure med. to once a day. He is slowly working away from all of his meds. This is a great sign. We repeated his FISH test yesterday. Let's all pray that this little boy has some girl cells growing. He was around 50% last time, so we want to see an improvement. We should know something by next Tuesday.
We still haven't heard anything on his enzyme test. Dr. K. said that it can sometimes take 6-8 weeks to get the test back. Until then, we are crossing our fingers. That is the most important thing. We want him to produce lots of the enzyme so that he can reap the benefits.
My Mom will be here tomorrow morning, and I'm so excited. I haven't seen her since the beginning of February. I can't wait to see you Mom! I love you. Also, Patrick is making a trip home to take some of our junk to the house. Patrick isn't looking forward to being away from me and the baby even for a few days (who could blame him?), but since my Mom is coming, we felt this would be the best time to go. Maybe we will have an easier time getting the rest of our stuff home now. I ask that you all pray for a safe trip for both my Mom & Patrick.
Angie, Luke, & Sheridan, we got your package and talk about cute stuff. . . I will have to put the visor on him and send you a picture.
Jillian & Laura, thanks for the diapers yesterday, we were in clinic so long that we actually opened them and used a few in clinic. So thank you very much!
Darla Stewart, the package was much needed. The book and rattle were a big hit with Jordan. Thanks so much.
Noreen & Chris (Angel Reese's Grampy & Nana) thank you for the care package. The clothes are just adorable, & I'm sure the kids in clinic will love the activites & books.
Amy Fandel & Mrs. Epstein thank you for your thoughtful package. I can't wait to see Jordan in his new short outfits.
Tom & Lola, thank you so much for the check. It will really help with expenses here.
Doug & Julie, thank you for the check & picture of the grandkids. I can't believe how big they are getting. What precious angels you have!
Karen Kuntzman, thank you for the coupons. You have worked your tail off to get us help, and we are forever greatful. You are a true sweetheart!
You are all unbelievably generous people with big hearts and we love you all. We have gotten so many things of Rice cereal that I am going to take it off the list. Thank you, Thank you, Thank you, but we don't need anymore.
As always, we appreciate everything that people have sent to us. Many of the packages have made us feel a little more at home when we can't be close to those we love. I will send you all thank you notes, but I wanted you to know that we received your gifts, and we are greatful even if we don't send you a note right away.
Well, I better help Patrick finish packing up. Man am I going to miss him. Hurry back safely baby; I love you!
Love,
Carrie

***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2 or 3)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
Desitin (creamy or regular)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or Dreft stain remover
Gift cards (Walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months or 9-12 months, there aren't any restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Sunday, April 20, 2003 12:36 AM CDT

Day +128 (new pictues today)

HAPPY EASTER TO ALL! HAPPY 2ND BIRTHDAY SHERIDAN! We are so sorry we can't be there for the celebration, but we will be home soon, and you can hold Jordan. I hope the Easter bunny brought you lots of great things.
Jordan is doing great. He is finally starting to eat off a spoon a little. It has been a big battle because he thinks anything going into his mouth (other than a bottle) is medicine. That is probably due to the fact that up until now it has been medicine. He is starting to figure out the difference, but he still isn't very interested.
Sorry this update is so short, but we really haven't done anything. Things have been very uneventful (just the way we like it).
I do have some huge thanks to give. Thank you to Melissa Oller & Jassi Maton for the card & gift certificate. Thanks for sharing your story with me; I look forward to meeting you when I visit Angie at work. Thank you to Rease & Bette Binger for the card & check. You guys have been so generous to us and we are forever greatful. Amanda, thank you for the card. I promise I will write you back soon. I miss and love you too. Darla, we haven't gotten the package yet, but I thank you in advance. You are so sweet to think of us and the other transplant families. Again, thanks for all the prayers; they are working.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or dreft stain remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Thursday, April 17, 2003 7:15 PM CDT

Day +125

Today has been a good day. We were pretty lazy today because Jordan was up twice during the night. Apparently he didn't feel like sleeping. I hope he sleeps tonight.
I took Jordan in to clinic this evening to get his blood pressure & weight checked. Luckily, our nurse practitioner, Ann, told us we didn't have to go in until after 5:00 pm when she got there. It was nice not having to get up and rush to get to clinic. His labs looked great. His potassium was down a little, so we are going to try banannas in his night time bottle. His blood pressure was good. It was boderline high on Tuesday, so Dr. K. just wanted to check it again.
We went up to the pool for a while yesterday. Jordan enjoyed watching the other kids play and splash in the water. We enjoyed just getting out of the apartment for a short time. Then we had our weekly "game night" at the Bingham's. It was fun. I know Isaiah & Mishael look forward to playing games with us, and we look forward to the socializing as well. Pat (their mom)always makes something good to snack on. Thanks Pat, it was nice to visit with you guys again.
I want to thank some very important people. Great Uncle Kenneth, you are just too much. Thank you so much for the wonderful package. We will use everything, and the outfits were adorable. You have such good taste!
Thank you to Mandy Davis & Our Lady Of Lourdes school for the "Jeans for Jordan" fundraiser. It means so much that you are thinking of us. You are too sweet. Thanks a ton.
Melissa, thanks for the letter and the check. I am so sorry to hear about your bad news, but I pray that you get your miracle soon. You mean the world to me, and I miss you.
Also, CONGRATULATIONS to Amanda & Clark Taylor! They are expecting another little one soon. I miss and love you guys. See you soon.
Thanks again to everyone for the prayers and generous dontations. Patrick and I would not be able to be here getting this wonderful care for our son if it were not for the giving nature of people. I don't care what anyone says, people are generous and giving! We love and appreciate you all. Thank you from the bottom of our hearts.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or dreft stain remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Tuesday, April 15, 2003 7:53 PM CDT

After a 10 1/2 hour clinic day, we are home safe, alive, & exhausted. We thought we would get to clinic early, beat the rush, & maybe enjoy a few hours in the sun after clinic. We were wrong. We got to clinic at 8:20 & got home at 7:00. Needless to say, we are a little drained.
Although today was a really long day, we ended it with good news. Thank God for good news. His labs look great except for his magnesium (which he got a boost of today) and a few liver function tests. Dr. K. says this is probably from us trying to get his FK level straight. At this point, the levels are not high enough to be a concern. His repeat CMV came back negative and his immune function tests came back. There are three major numbers that the Dr. looks at to determine how well Jordan's immune system is functioning. One of his numbers is around 5,000 and is considered normal at 100,000. Dr. K. assured us that this is very normal at this point in transplant. The other two need to be above 200 and 800. Jordan's levels were 280 & 808. GREAT JOB KID! This is good news for us. He is on his way to recovery. Dr. K. said that for a baby, it is not uncommon for the levels to come back more quickly than in an older child or adult. We couldn't be happier. Dr. K. also lowered his steroids. We have to see how he does with the lowered dose to determine when we can switch him to oral and exchange his central lines for a port. Keep praying; it is working.
Many of you are e-mailing, sending cards & packages, signing the guestbook, & praying. We appreciate everyone's love and support. It means so much to us. Keep signing the guestbook. It is nice to see the entries when we get home from long clinic days. I want to thank Jill for the wipes and carrier. We will use them. It was so thoughtful of you.
There are still many kids that are in desperate need of prayers. Several of the kids on the unit are having a rough time with transplant. Please pray for Nolan (www.caringbridge.org/co/nolanramsey), Noah (www.caringbridge.org/hi/noah), Travis (www.caringbridge.org/hi/twilliams), and all the kids going through various stages of transplant on the unit or outpatient.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or dreft stain remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Monday, April 14, 2003 4:21 PM CDT

Day + 122

Sorry we haven't updated, but in this case no news is good news. There hasn't been anything exciting to report. We have been very lazy lately. We went outside and raced remote controlled cars with our neighbors (the Binghams) yesterday. Other than that, we haven't done much of anything. It has been rainy except for yesterday and today, so we have stayed in and watched movies. I am going to try to get Patrick to go up by the pool tomorrow. There is a nice place in the shade where we can sit with Jordan. We will have to see how the weather holds up. If not, we will just stay in the apartment and be entertained by our little comedian. He is babbling more and more everyday. He tries to get Patrick to laugh so that he can laugh back, so he makes funny noises until Patrick laughs or smiles at him. Then Jordan just giggles and smiles. It is the most precious thing. Jordan and daddy are buddies. (it could have something to do with Patrick being such a big kid himself)
Anyway, things are going well, but we are ready to get back to Decatur (I never thought I'd be saying that). I miss everyone and am anxious to see them again.
Thank you to enfamil for the case of formula. We really appreciate it. Karen, I'm sure you had something to do with that.
Don't forget to pray that Jordan's Red blood cells respond to the FK so that we can start lowering his steroids again. Check out the pictures to see how big his cheeks are getting since the increase. Also, keep all the transplant families here in your thoughts and prayers as well as all the families who have lost a little one.
We love and miss you all.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or dreft stain remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Friday, April 11, 2003 4:59 PM CDT

Day + 119

The last few days have been very uneventful. We are very happy about this. Jordan is feeling good and has been in a great mood. He had quit rolling over for a few weeks (we think he felt lousy from the c-diff) and is now rolling over and laughing out loud again.
Clinic went well today. We had to draw labs and get a weight and blood pressure. Everything was good. He now weighs 15 lbs. and 4 ozs. He is getting to be a chunk. I noticed today that his eyebrows are starting to fall out. Dr. K. said he would lose the extra body hair when we switched him from Cyclosporine to FK. I didn't know that it would happen so fast. Now if we can just get rid of the back hair. :)
Anyway, there's not much going on here. We are still waiting to get the results of Jordan's labs today. Apparently they are all ok because we haven't heard otherwise. We had to draw another CMV test today because his one from Tuesday was indeterminate. He had one like this back in February, but it turned out to be nothing. The Nurse Practitioner said that several of the kids had indeterminate results this week, so she is not concerned. I will let you know what we find out.
Now for the thank yous! Thank you to Janelle Jansen for the check and letter. It was so thoughtful of you. Thanks Alicia for the cute outfits for Jordan. They are adorable. Thank you Eleasha for giving up some of Riley's clothes. We will make good use of them. We appreciate you thinking of us. Thank you to Karen Kuntzman for your contacts. They are paying off. Del Monte is going to send us some free baby food. We really appreciate all your help! Thanks to everyone for your continued support and prayers. We love and miss you all.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All laundry detergent
Nursery Stain and odor Remover or dreft stain remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
FUND RAISERS BIG OR SMALL (EVERY DOLLAR HELPS!)YARD SALES, BAKE SALES, ETC. THERE IS NO EVENT THAT IS TOO BIG OR TOO SMALL!
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Tuesday, April 8, 2003

It was a long clinic day, as tuesdays usually are. Jordan woke us up at about 4:30 am. He went back to bed about 6 am. We were going to get up at 6:30 and try to get to clinic by 8:00. Well we all overslept. I said to heck with it let's just go about noon. Then things went straight down hill. Carrie spilled Jordan's blood all over the bed when she was drawing his labs. Then she spilled coke on the syringes she was filling up for his oral meds. Then I flushed the toilet and it clogged.(haha, grow up) So by some freak occurrence the toilet did not quit running and I didn't realize it so I walked out of the bathroom. When I came back in I needed an arc to get to the back of the toilet to get it to stop running. Let me tell you cleaning the bathroom was fun. Especially the people who know how big of a germiphobe I am. So then I took another shower, and we headed to clinic. The rest is hardly worth talking about until we saw Dr. k. Let's see, she told us that Jordan is doing good. She is not concerned about his donor cells only being at 50%. She made us feel better about it. She switched his cyclosporine(sp?) to fk which will get rid of all that fur he has. His MRI showed fluid on his brain, which they explained away as fluid from his steroids. She did not seem concerned which is good. Of course we still worry. Now for the bad news. She told us that we are going to need to stay until his 6 month studies. That will be around mid June. So we are going to have to find some money. We are going to have to start figuring this out asap. So if anyone has any ideas I would love to hear them. Everything will work out for the best though. Life is nothing if not exciting.
Now for the thank you's.

The Englemans. Thank you for the care package. It could not have come at a better time.

Heather and Shad. The outfits and the gift card also could not have come at a better time.

We are blessed to have such amazing people in our lives. God bless, and Carrie and I hope to see you all soon.

***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Sunday, April 6, 2003 3:14 PM CDT

Day +114

Sorry so long since I've updated. We've been enjoying time with Grandma & Grandpa Horton. We are doing well and Jordan is feeling so much better. I can tell the antibiotic is really helping his belly. He has been in a really good mood the last few days. It is nice to have a really happy baby again.
Jordan's anemia is getting better, but he had to get a blood transfusion on Saturday morning. He went two weeks without needing any, so we know he is getting better. Pray that his body will resolve this issue soon.
Still no word on the MRI or enzyme test results. We are anxious to know the results, but will probably have to wait until our Tuesday visit with Dr. K. We are also going to be discussing how much longer we are going to be here. We are anxious to go home and return to our friends, family, and (believe it or not) work. I miss everyone so much.
We still need everyone to pray for Travis Williams. The last update I got was that he is still in the PICU. He is not doing well and needs your prayers. There are also many other kids here that are having major bumps in the transplant road. Pray that their issues can be resolved and they can go home soon too.
Again, we have some major thank yous to send out. Jake and Becky, Caleb is so funny in those pictues. I can't believe how big he has gotten. Thanks for the letter and money. We really appreciate it. Marti, thank you for the card and check. You are too sweet to us. Kristen, Jordan wants to thank you for his letter. We read it to him and know he knows all about the critters back home. He is excited to meet everyone. Thank you to Mom & Dad Horton for all your help this week. Thank you to Mom & Dad Yeske for all the work getting our house ready to come home. It means so much to us. Cherie, thanks for the letter "little sister." I love you too! Thank you to Karen for all your work in getting us stuff from enfamil, huggies, etc. You amaze me. Thank you to everyone for the thoughts, prayers, e-mails, & guestbook entries. All of this support is what gets us through the rough spots here. Just when I think that this place is too overwhelming, someone writes a sweet little pick-me-up in the guestbook or we get a thoughtful package from someone. I can't ever express how much the thoughtfullness and generosity of you all means so much to us. Thank you from the bottom of our hearts!
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned (it looks like June now), things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Thursday, April 3, 2003 5:35 PM CST

Day +111

We had Jordan's MRI this morning, which he had to be sedated for. I always worry when they sedate him. He did fine and has been sleeping off and on all day. We won't get the results for a while, so as always we have to wait.
Jordan is now on CONTACT ISOLATION. I want to warn all our transplant friends. Jordan tested positive for C-Diff. This is a bacterial infection in the intestines. He probably got it from being on an antibiotic for an extended period. It's ironic that they use an antibiotic to treat it. Funny how this stuff works. I am actually relieved to find out that it is C-Diff and not something much worse. This explains his bloody and runny diapers. The bad news is that we will be on contact isolation for at least 3-4 weeks until he finishes his antibiotic and they do another culture. The doctors will not lower his steroids until the C-Diff comes back negative. Therefore we are looking at a minimum of 8 weeks before they will take out Jordan's lines and place the port. We will have a better idea about how long we will be here after talking to Dr. K. on Tuesday. Jordan's 6 month studies begin in June, which is when we are likely to go home. Instead of going home and staying for a few days and then coming back again, we may just wait until his six month studies to come home. Dr. K. may suggest this as well. The least amount of traveling for Jordan is best for his health. Other than that, Jordan is doing wonderful. We are thankful that this is all that is wrong. It could be much worse. Thank you God for answered prayers.
I want to say some very special thank yous. Thank you to Orlan and Donna Jansen for the letter and money. Thank you to Darla Stewart for all the info on SSI. Thank you for everyone's e-mails giving us information on programs. Thank you to Jill Flavin for the care package. We really appreciate your generosity. I love the outfit.
I want to spend a very special thank you to Jordan's guardian angel Reese. Jordan loves all of the clothes and the toys. He especially wanted to thank you for having your "buddy Jesus" look after him. Shawn, you are too much. I know that it must have been so hard for you to go through Reese's things and send them to us. I know it was hard to let them go. We will take good care of them and think of you and Reese everytime he wears them. I love you and will be calling you soon. We have to get together. We'll be here for a while. Thanks again for everyones love, support, cards, and prayers.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned, things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Tuesday, April 1, 2003 4:52 PM CST

Day +109

Well, I wish I had better news to share, but the word on the fish test is the same. He hasn't grown any new donor cells. He is still right around 50%. UGH! I wish this were my April Fools Joke, but it's not. Dr. K. says this is probably because of the low cyclosporine level, but I have my doubts. We will draw another one in 2-3 weeks. Pray, Pray, Pray!
Jordan started out on the wrong foot today. He woke up at 6:45, ate about 1 1/2 ounces of formula and then puked it all up. Then he ate a little more, and it all came back up. His diapers looked a little funky and smelled funky too. I called the Nurse Practitioner, and she said to wait about a half hour and then try giving him his meds. I waited and at about 10:00 he took 5 ounces of pedialyte and all of his meds. I guess it was a fluke, but his diapers are still nasty. The Dr. went ahead and cultured his diaper for Rotavirus, C-Diff, and other viruses, and we should know the results in a few days. Dr. K. didn't seem too worried about it.
Clinic didn't start out much better. For all of you who have been in clinic, you will enjoy this story. My "favorite" (yes, I'm being sarcastic) nurses assistant, Carlene ticked me off. When we got to clinic, the day hospital was all ready for Jordan, but he hadn't been weighed yet. One of the nurses said she would do his vitals so that we could get back to the day hospital faster. While we were taking Jordan's blood pressure, I took off his mask so that he wouldn't be as upset, and we could get a better pressure. Carlene brought in another (adult) patient. I politely said, "Carlene, could you wait a minute until we are finished because he doesn't have his mask on." Carlene (very rudely) said, "They are ready for him [the other patient] in the day hospital and I have to get his vitals." I WAS STEAMED! I grabbed Jordan's mask, put it on him, picked him up, and stomped off to the day hospital. I told the other nurse she could get his vitals in the day hospital. Why is this such a big deal? The exact reasons that I wrote about a few days ago. HE IS NOT A NORMAL, HEALTHY CHILD! DUH NURSE! I have no idea where that man had been, what he had been exposed to, and what he was exposing my son to. All Carlene had to do was wait 2 minutes for us to finish, but she chose to ignore me. Needless to say, I told her that she should not have put my child at risk. Of all places, the clinic (which he has to go to) should be a safe place for him. It is the staff's job to follow ALL the rules to make sure my child is safe. Carlene said, "well, I didn't think Jordan was at risk because he wasn't right next to him." I wanted to say, "ARE YOU STUPID?" What I said instead was, "It doesn't matter what you think, he is my child. I say who is around him not you." I told the same story to the nurse manager and she agreed with me and assured me it would not happen again. We'll see.
Other than that little problem, clinic went well. We were in and out in about 4 1/2 hours. He did have to get some potassium, probably due to him vomiting earlier today, but the day was pretty uneventful.
We are disappointed that his FISH test was not higher, but Dr. K. seems to think that if his cyclosporine level gets regulated, he will start growing donor cells again. Let's all pray really hard that he starts growing these cells. I want my baby to be healthy again. He needs to produce lots of the enzyme so it can help his body. Well, enough for now. I appologize that this message is not uplifting, but this is our life, not always pretty but always real.
Love,
Carrie
PS Jordan's smile quilt is ready. Click on the link at the bottom of the page to see it. Go to page 5, Jordan.
Thank you Eleasha for the clothes for Jordan! They are adorable. We love them.
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned, things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Monday, March 31, 2003 4:11 PM CST

Day +108

Hello to all-
We are doing well. Grandma & grandpa Horton got here safely Saturday, and we are enjoying their company. Patrick and I have been able to do a little running around, and it's been nice. We took Patrick's neice, Beth, or rather she took us to the movies on Saturday night. She works at the theatre, so she got us in for free. We saw Dreamcatcher. It was very freaky, but we liked it.
Other than that, there isn't much going on. We are enjoying lazy, uneventful days. That's what we like. We have to go to clinic tomorrow and hopefully will get the results of Jordan's FISH test. Pray for 100% donor cells. We also hope that Dr. K. lowers his steroids. We want to get them low enough so that we can switch to oral and think about going home soon. I know this will take several weeks, but we have to start heading that direction.
I want to thank Shawnia for the wonderful Easter package. Jordan loves the toy and his new clothes. Patrick and I love the candy. Thank you so much for your thoughtfulness. We really appreciate it!
I have another prayer request. Travis Williams is still in the PICU and Andrew Bowman was readmitted to 5200 with Rotavirus. We pray that these kids are healed quickly.
Thanks again for all your love and support. We really love to hear from you, so don't forget to sign the guestbook and let us know you stopped by to check on us.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned, things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Monday, March 31, 2003 4:11 PM CST

Day +108

Hello to all-
We are doing well. Grandma & grandpa Horton got here safely Saturday, and we are enjoying their company. Patrick and I have been able to do a little running around, and it's been nice. We took Patrick's neice, Beth, or rather she took us to the movies on Saturday night. She works at the theatre, so she got us in for free. We saw Dreamcatcher. It was very freaky, but we liked it.
Other than that, there isn't much going on. We are enjoying lazy, uneventful days. That's what we like. We have to go to clinic tomorrow and hopefully will get the results of Jordan's FISH test. Pray for 100% donor cells. We also hope that Dr. K. lowers his steroids. We want to get them low enough so that we can switch to oral and think about going home soon. I know this will take several weeks, but we have to start heading that direction.
I want to thank Shawnia for the wonderful Easter package. Jordan loves the toy and his new clothes. Patrick and I love the candy. Thank you so much for your thoughtfulness. We really appreciate it!
I have another prayer request. Travis Williams is still in the PICU and Andrew Bowman was readmitted to 5200 with Rotavirus. We pray that these kids are healed quickly.
Thanks again for all your love and support. We really love to hear from you, so don't forget to sign the guestbook and let us know you stopped by to check on us.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned, things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Saturday, March 29, 2003 11:52 AM CST

Day +106 (Jordan is 5 months old today, WOW!)

Hello to all! We are happy to tell you that Jordan has not needed blood in over a week. YEAH! He is on his way to recovering from his anemia. Actually, his hemoglobin count was the same yesterday as it was on Tuesday, even after drawing 50 ccs from him for his 100 day studies. We couldn't be happier. Now maybe Dr. K. will start lowering his steroids. The rest of his labs look fantastic. Way to go JORDAN!
The other thing we are trying to contend with before we go home is his cyclosporine level. It keeps reading really low. This is probably because he is growing bigger every day. Dr. K. keeps uping the dosage, but it is still low. We have to get this at a certain range before we can come home.
We are really excited because Grandma & Grandpa Horton are coming to visit today. I know they miss Jordan so much, and he misses them too.
I haven't heard anything more about Travis except that he is on a vent. in the PICU. Aparently, he started bleeding badly, and they don't know where it is coming from. Pray hard for this little boy. Also, Andrew Bowman (www.caringbridge.org/page/andrewshope) was admitted back to 5200 yesterday with a high fever. Pray for the doctors to have the wisdom to help these children.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned, things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Friday, March 28, 2003 8:43 AM CST

Day +105
I am updating early today to ask that you all pray for Travis. He was transplanted right before Jordan and has not left the unit yet. He is battling graff vs. host disease and has been transfered to the PICU (pediatric intensive care unit.) We are praying for Travis and his family (www.caringbridge.org/hi/twilliams).
I can't stress enough how lucky we are that Jordan is doing so well. He is healthy because we have taken the necessary precautions and kept him away from anyone who is sick or has been sick. Please understand that we would love to visit everyone, but if he is exposed to something as minor as the flu, it could cause major complications and yes, death. That is why he is confined to the Clinic, 5200, and the apartment. Although we can visit some transplant families, it is too dangerous (right now) to visit someone who has had no restrictions as to where he or she has gone. I am not willing to comprimise my son's health and life. When the doctor gives us the ok, then we will start doing a little more. I am saying this because I want people to understand that just because he looks healthy, he isn't. He doesn't have a weakened immune system: he doesn't have an immune system. He will not have a normal one until about 9-12 months from now. It's easy to forget this when he is doing so well and looking so healthy, but I must remind myself as well as others of his special needs. He is not a normal child and may never be.
Ok, sorry to go on so much, but I had to get on my little soap box for a few minutes. We are getting ready to head to clinic, so I may add test results later. Don't forget to pray for Travis and the other transplant kids on 5200 and outpatient.
Love,
Carrie
***Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned, things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desitin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps!)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support.
Love, Carrie, Patrick, & Jordan

Thursday, March 27, 2003 3:49 PM CST

Day +104
Hello everyone. We got Jordan's preliminary EEG back and everything looks great. We won't get the official report back for a week or so, but Dr. K. expects it to be normal. We are so pleased with Jordan's progress.
Many of you have asked us what we need, and we have always said, "we are fine." We have been so thankful and fortunate that people have been so generous, but since we have to stay here longer than we had orginally planned, things are adding up. The insurance company is no longer reimbursing us for any living expenses, so we are now on our own. Social security has denied giving us aid. Anything that anyone does or gives is appreciated and welcomed. Here is a list of needs:
Diapers (pampers or huggies size 2)
Formula (LactoFree Enfamil with lipil)
Wipes (no scents, dyes, or perfumes)
desetin (creamy or regular)
Rice cereal (plain or with banannas or apples)
Clorox or Lysol disinfecting wipes
Dreft or Baby All
Nursery Stain and odor Remover
Gift cards (walmart and Krogers are close)
Summer Clothes for Jordan (6-9 months, there aren't any
restrictions anymore)
Fund Raisers (big or small, every dollar helps)
Information on state, government, or other aid
Monetary donations can still be made to the Jordan Horton
Benefit Fund at Hickory Point Bank & Trust. The address
is above, or you can mail them to us at the apartment.
The address is below.
Most of all, Prayers!
Thank you in advance for the support. We love and miss you all.
Love,
Carrie

Wednesday, March 26, 2003 2:23 PM CST

********************Update*******************


Our buddy Jacob's spinal tap showed no cancer cells. Way to go buddy. We were praying for you. That's all for now, here is yesterdays Journal.


Tuesday, March 26 2003



Day +102

Hello all. I am going to try to make this short because it was a long day in clinic (9 1/2 hours). We had many tests today including Jordan's spinal tap. His pressure was at a normal level and preliminary results on the fluid they sent off was normal. Jordan screamed his head off during the procedure, but after many tears (from both of us) we got through it. All of his other tests have come back normal. His vision, hearing, developmental studies, spinal tap, PFT (breathing test), chest X-ray, and echocardiogram were all normal. He still has the small hole in his heart. Dr. K. says this is very common for any child and nothing to be concerned about. They just want to watch it because he has the lines placed in his chest. It should heal on its own. The only test results that we don't have yet are his blood tests that were drawn today (including the donor cell test) and the EEG (brain wave study). All of these should be back in a week or so. I think we just have to do the MRI on the 3rd of April, and we will be done with his studies.
Although Jordan is doing well and his hemoglobin seems to be holding on (no transfusions since last Thursday), Dr. K. wants to keep his steroids at this level for one more week. Since his body is responding well to the increase in his steroids, she wants to make sure his body heals well before we reduce them again. Maybe we can reduce them next week. I asked for a time frame for heading back to Illinois. She said we are looking at 4-6 weeks minimum. That is if everything goes right from here on out, and he continues to heal from the red blood cell break down. I am disappointed because I really wanted to be back for Sheridan's (my sister's daughter) birthday on April 20th. I'm sorry baby girl; you will have to wait to "hold Jordan." We will come and see you as soon as we get home.
Well, I want to ask you all to pray that Jacob's spinal tap shows no cancer cells today. He has been fighting so hard; he deserves the good news. We are pulling for you buddy! Also, Travis Williams (transplanted right before Jordan) is still on the unit battling Graff Vs. Host disease. He is not doing well and could really use your prayers. www.caringbridge.org/hi/twilliams
Ok, so much for a short journal entry, but I really must go and get some rest. Please pray for all our kids here. We love them all. Thank you for all your prayers, e-mails, guestbook entries, & phone calls. We love hearing from you. Your support means so much to us!
Love,
Carrie

Tuesday, March 25, 2003 9:29 PM CST

Day +102

Hello all. I am going to try to make this short because it was a long day in clinic (9 1/2 hours). We had many tests today including Jordan's spinal tap. His pressure was at a normal level and preliminary results on the fluid they sent off was normal. Jordan screamed his head off during the procedure, but after many tears (from both of us) we got through it. All of his other tests have come back normal. His vision, hearing, developmental studies, spinal tap, PFT (breathing test), chest X-ray, and echocardiogram were all normal. He still has the small hole in his heart. Dr. K. says this is very common for any child and nothing to be concerned about. They just want to watch it because he has the lines placed in his chest. It should heal on its own. The only test results that we don't have yet are his blood tests that were drawn today (including the donor cell test) and the EEG (brain wave study). All of these should be back in a week or so. I think we just have to do the MRI on the 3rd of April, and we will be done with his studies.
Although Jordan is doing well and his hemoglobin seems to be holding on (no transfusions since last Thursday), Dr. K. wants to keep his steroids at this level for one more week. Since his body is responding well to the increase in his steroids, she wants to make sure his body heals well before we reduce them again. Maybe we can reduce them next week. I asked for a time frame for heading back to Illinois. She said we are looking at 4-6 weeks minimum. That is if everything goes right from here on out, and he continues to heal from the red blood cell break down. I am disappointed because I really wanted to be back for Sheridan's (my sister's daughter) birthday on April 20th. I'm sorry baby girl; you will have to wait to "hold Jordan." We will come and see you as soon as we get home.
Well, I want to ask you all to pray that Jacob's spinal tap shows no cancer cells today. He has been fighting so hard; he deserves the good news. We are pulling for you buddy! Also, Travis Williams (transplanted right before Jordan) is still on the unit battling Graff Vs. Host disease. He is not doing well and could really use your prayers. www.caringbridge.org/hi/twilliams
Ok, so much for a short journal entry, but I really must go and get some rest. Please pray for all our kids here. We love them all. Thank you for all your prayers, e-mails, guestbook entries, & phone calls. We love hearing from you. Your support means so much to us!
Love,
Carrie

Monday, March 24, 2003 9:58 AM CST

Day +101

YEAH! We have reached an important milestone on our journey. We had a great day yesterday. Patrick's brother and his daughter came over and hung out for a while. It was nice spending time with them. Jordan hasn't needed blood since Thursday and is not showing any signs of needing any yet. We are praying that he is on his way to getting over this form of anemia.
It is only 11:00, and it is already 70 degrees today. We are planning on getting Jordan out in the fresh air, especially since tomorrow will be a very long day. We have to be at the clinic at 8:00 in the morning for all of Jordan's blood work. Then, he has an audiogram to check his hearing at 8:30. He has his EEG (brainwave study) at 10:30 and then we still have to go to clinic for our "long day." We have to get Jordan's IVIG, his spinal tap, and a visit with Dr. Kurtzberg. Hopefully she will have the results from the tests that Jordan has already had. We will post the results once we know them. Well, I am going to go so that we can enjoy this beautiful day. Talk to you all soon.
Love,
Carrie

PS pray for all the kids here, outpatient and on the unit.

Saturday, March 22, 2003 10:49 AM CST

Day +99
I hate to even write these words, but I want to let everyone know that Mckenzie lost her battle yesterday afternoon. She fought hard, but her little body just couldn't take anymore. I know that her parents are a mess. They went through 3 transplants with Mckenzie, and they are emotionally and physically exhausted. They all deserve the rest, but we have lost such a wonderful little girl. I ask you all to pray for her family. Pray that they find the strength to deal with their loss. You can visit her website at www.caringbridge.org/nc/mckenziefay

When I think about all the little angels I know now, it breaks my heart. I find myself asking why these little kids? Why does this happen? I know that I am not meant to know the answers, but it is just so unfair to these families. I hurt for all of them. Please keep this family and all the others here in your thoughts and prayers. Also please pray for all of our mental health. With all the loss lately, it is extremely hard to keep up good spirits. We could all use a little lift. I will update again soon.
Love,
Carrie

Friday, March 21, 2003 1:42 PM CST

Day +98

Hello to all. Well, we had to go to the clinic yesterday to get Jordan some more blood. I knew he was getting low. He was so fussy and unhappy. He has been really good today. We had to be at clinic by 9:00 so they could weigh him and get his height. He weighs 14lbs. 12ozs. and is 24 3/8 inches long. He is getting so big. It's funny. Today when Jordan went for his echocardiogram, the tech. asked me if he still weighed 4.49 kilos, which is around 9 pounds. I was like, "ah, no." I had to laugh. It seems so long ago that he was that small. He had his chest x-ray and pulmanary function test, which is a nice way of saying "we are going to make your son cry and measure how well he breaths while upset." He did great with all his tests. We haven't heard the results of them yet, but we don't anticpate any abnormalities. We have more tests on Tuesday including a spinal tap. We are less than thrilled about doing this, but it is necessary.
Sue Wood, Jordan's nurse practitioner explained to me why Jordan needs blood so often right now. She made it easier for me to understand. She said that because of the IVIG (immune builder) that he gets every Tuesday, he has developed antibodies in his blood. These antibodies are breaking down his red blood cells too quickly. This is not serious and it will resolve itself, but until then we just have to watch for signs that he is getting low. I don't think we will be able to come home until this issue is resolved. It just depends on how often Jordan is needing blood. Right now, he is needing it every 4-6 days. That isn't good enough for us to go home yet. if it were weeks between transfusions then that would be another story. The word right now is "wait and see." Until then, we will be hanging out in Durham. It could be worse, we could have a serious problem. Thank God for sparing us that heartache so far.
As for Mckenzie, she is doing about the same. I went to see her Wednesday night & yesterday afternoon. Her parents look exhausted, but are encouraged by the fact that she hasn't gotten worse. On Wednesday they were told she would more than likely not make it through the night. She has once again amazed everyone. We pray for another miracle for this little girl.
Well, that's about it for us. Since it is nice outside, we are going to take Jordan for a little walk. Talk to you soon. Take Care.
Love,
Carrie

PS Some people were confused. It was my Mom & Dad's (Dale & Sheila's) anniversary on the 18th, not mine and Patrick's.

Wednesday, March 19, 2003 2:01 PM CST

*****Please pray for McKenzie. She is back on the unit with pnemonia and the doctors say there is nothing they can do for her. We don't want to lose another precious child. Please pray*****
Day +96

Hello to all. Jordan is doing well with his studies so far. He had his vision test today with Dr. Greene. Everything looks great. It is hard to tell how well Jordan sees, but the cornea is clear (it can become clouded from Chemo.) and the optic nerve is great. They have this new camera that takes a picture of the inside of the eye. It works really well with kids that won't sit still long enough to let the doctor examine them. The picture comes up on screen and the doctor can look all he wants. Jordan sat still and allowed the Dr. to take the picture. He is such a good boy. Our visit with Dr. K. went well yesterday. She said this condition with Jordan's red blood cells is not serious, but we just need to watch him. He is starting to look pale to me again and he is sleeping a lot today. If he starts getting fussy, we call the doctor and check his hemoglobin. Hopefully his body will get the signal that he is low and start producing these Red Blood Cells on its own. Dr. K. said that it could be a week or two before this problem is resolved, or it could be a month or several months before he produces these cells on his own. Until then, we will keep a current type and screen so that Friday does not repeat itself. Dr. K. was upset that I did not page her on Friday. She said that next time I should ignore the nurses and page her. She does not want me to get that upset again over something minor. It was needless and unfair to me. We do more tests on Friday and then in clinic on Tuesday all his labs will be drawn. They will probably repeat his FISH test. Dr. K. expects him to be very close to 100% donor cells by now. Also, they will do a spinal tap on Jordan. I am not thrilled about this, but Dr. K. wants to measure the fluid pressure since his soft spot has been swelling off and on since transplant. It could only be happening because his body has been low on Red blood cells, but again, she wants to rule out anything serious. I think this is a great idea. Everyone pray for us this week and in the next few weeks. We want all of Jordan's tests to come out well so that we can start thinking about Illinois! I miss everyone so much and can't wait to visit St. Teresa to see all my students and co-workers. You all have no idea how much I miss teaching, even the stress. It really is an important part of my life, and I hope I can get back to teaching soon. Anyway, Jordan is finally waking from his nap, so I need to go. Talk to you all later. Also keep Cody, Jacob, Jillian and all the other kids in your thoughts and prayers. Cody & Jillian had surgery today and Jacob is recovering from being sick. Thanks so much.
Love,
Carrie

Monday, March 17, 2003 5:08 PM CST

Day +94

Hello everyone. Today is a good day. Boy did I need one after my bad experience on Friday. All of Jordan's virus tests that they did on Friday came back negative. He is negative for C-Diff, and he is doing well. We went to see the developmental therapist today, and things went very well. Jordan is ahead of schedule developmentally. He is exhibiting age appropriate skills, and he showed off a few skills ahead of schedule. The evaluation was over 100%. We were pleased with our intelligent baby. Patrick and I are very proud of him. Dr. Escolar was very impressed with his development. She said that this appointment was supposed to be the worst one (because of transplant), and he had a great evaluation. That is about the only new news that we have. We meet with Dr. K. tomorrow to get our schedule for his 100 day studies. They will start this week, and we will finish next week. We are looking forward to seeing if Jordan has maintained normal functions for all the tests. We will let everyone know when we find out the results.
I do have a favor to ask of all of you. There are a few kids that have been given some bad news lately. Cody has relapsed and needs your prayers. You can visit his website at www.forcody.org Also, Jacob is back up on the unit as of Saturday. He is very dehydrated from being sick. Let's hope that's all it is for him. There is a link to his website at the bottom of the page. Andrew Bowman (www.caringbridge.org/page/andrewshope) is improving, but he and his parents are still looking for answers to why he is in pain. Ellen, Simon, & Andrew spend everyday in the day hospital geting fluids for Andrew. This is exhausting both physically and mentally. Pray this will end for them soon. Tommy Bennett (www.caringbridge.org/ca/bennettboys)is waiting for the results of his second FISH test so pray that they find donor cells. If they don't his parents will have to decide whether to go through a third transplant or seek other help. Reese's family is struggling with their loss. Please keep them in your thoughts and prayers. Also pray for anyone else I am forgetting as well as all the kids on the unit and outpatient. Take care.
Love,
Carrie
PS It is my Mom & Dad's anniversary tomorrow. Wish them a happy one. I love you guys. Congratulations!

Saturday, March 15, 2003 1:54 PM CST

Day +92

Yesterday was one of the scariest, most stressful days of my life. It all started as a very normal clinic day. We were only supposed to get Pentamadine, so I took Jordan while Patrick stayed and cleaned the apartment. When we got to clinic, the nurse said that Jordan's Red Blood Count had dropped significantly from 11.5 on Tuesday to 8.7 on Friday. This wouldn't be a big deal if he wasn't so far out and he just got a transfusion last Friday. The nurse practitioner thought that it may be a false reading (even though Patrick & I have been telling them of small amounts of what we thought might be blood in his diapers for 3 days). We were told not to worry, "it's normal baby stuff because of his runny diapers." Anyway, they drew more blood to recheck his level. When it came back around 2:00PM, I was told that his level had dropped to 7.0. (They transfuse for anything less than 8.0) This was really scary. He dropped quite a bit in a short amount of time. Only then did the nurse practitioner act worried and order a series of tests including a culture of his diapers. She never stayed in his room long enough to explain to me why all the tests, what for, and what was going on. This upset me.
His diaper was positive for blood. They then sent it for a series of tests that we won't know the results of until Monday. Needless to say, the NP decided he needed blood. (DUH!) He didn't have a current Type & Screen (it has to be done every 3 days), so they had to draw more blood to do the type and screen for the transfusion. Since I wasn't planning on such a long day, I asked if I could go home to get more diapers and formula. Danielle (my favorite nurse), told me to just come back around 4:00. I got back to clinic a little before 3:30 so that I could release a baloon for Reese, then went back up to the day hospital. At 4:00 the blood wasn't there. I asked one of the nurses to check for me. She assured me that it was on its way. At 5:00 it still wasn't there. Danielle got on the phone with the blood bank and they informed her that he had developed antibodies in his blood from the IVIG. This isn't dangerous, but he had to have a more extensive type and screen. The lab needed another tube of blood to do this test. By this time I am getting upset and worried about Jordan. He was gettting very fussy, still passing blood, and no one would tell me what was happening. Not only was my son low on blood, they kept drawing blood from him without transfusing, which was only making him worse. He looked so pale. I finally asked to see Dr. K. I was told that she was unavailable and that there were no other doctors there. Excuse me, but bull shit. I finally demanded to see a doctor and Danielle was the only nurse that went and found one. Dr. Sheboltz (Sp?) came in, gave me a hug, and wanted to know what was going on. I told him how frustrated I was and that I just wanted to know what was wrong with my son. He looked at Jordan and said that he looked great, other than being pale. He felt his head and noticed that his soft spot was bulging. He said it could be a number of things (including his low RBC count), but wanted to do a head CT scan to rule out any bleeding in the brain. This scared me to death!
At 5:30 I called Patrick in hysterics and asked him to come up there with me. Sal Bingham gave him a ride. Thank you so much! I was way too upset to be there, but I couldn't leave my baby. Ellen Bowman was there with me and gave me a much needed hug. She let me vent to her all day. Thanks Ellen, (I am proud to be a member of the Pissed off parents). I just kept crying saying how much I hated the day hospital. Right before Patrick got there, Dr. Sheboltz came to Jordan's room and walked us down to the CT scan. He explained to me a few reasons that Jordan's count could have gone down so much. He said it is normal for transplant patients to break down RBC too soon. This can cause a quick drop in the count. Also, it could be a little Graff Vs. Host and can either way be easily treated with increased steroids. Thank you doctor for finally giving me a possible reason. The doctor stayed with me during Jordan's scan, and came out and told me everything looked normal. He then walked me back up to the day hospital and gave me a hug. Thank God for Dr. Sheboltz. He allowed me to keep my sanity yesterday. Patrick got up to the hospital a little before six and Jordan's blood still wasn't ready. At 7:00, we finally got word that it would be 9:00 or 10:00 PM before his blood would be ready. We had to go home, wait for his blood to get there, then go up to 5200 to the BOP room to be transfused. I let Patrick stay at home and sleep while Jordan and I went to the unit. It was finally about 3:00 am when Jordan was done getting his transfusion, and we were back at the appartment. Yesterday was quite possibly the longest day in history.
I am happy to say that Jordan is doing much better today and is looking much better. His color is back to normal, he is eating like crazy (probably from the increased steroids), and is much happier. I just talked to Nurse Danielle a few minutes ago and she told me that his levels from yesterday look great, but the nurse practitioner is going to see him tomorrow just to check him. Better safe than sorry. Too bad no one wanted to follow this strategy earlier this week when Patrick and I noticed a change in our child. This week has just been too much, but thank God for Great people like Ellen, Dr. Sheboltz, & Danielle. You made yesterday bearable. Well, I think I have updated quite enough. I know this was a long entry, just imagine how long the day was for us. The important thing is that Jordan is doing much better, and we are more at ease. Pray for negative virus test results for Monday. We think that it was just a little GVHD because he improved so much with the increased steroids. Well, talk to you all later. Thank you for all the prayers.
Love,
Carrie & Patrick

Thursday, March 13, 2003 8:40 PM CST

Day +90

It's hard to believe that next week we are starting Jordan's 100 day studies. We are anxious to see what the tests show. We are praying that everything is still in the normal range. Everyone keeps asking when we will know that Jordan is ok, that the transplant helped. Dr. K. says that until he is around 5 with little or no symptoms, we really can't get excited about a cure. If he hasn't started showing symptoms by that time, he likely won't. That is a long time to wait, but we are going to take a milestone at a time. Our next major one is 100 days. As for us around here, we are doing better. Jordan rolled over from his belly to his back yesterday, but hasn't done it again. Maybe he likes playing the "roll me over" game better than doing it himself. OK, I lied, as I was typing he rolled over again. He must have known what Mom was saying and had to show off. He is also learning to scoot when he is on his belly.
Other than that, Jordan is doing much better. His rash is gone now that his cyclosporine level went back up. He is spitting up less, and his diapers are getting better. hopefully next week we will be able to lower the steroids again.
We have to go to clinic tomorrow so that Jordan can get weighed, a blood pressure, and his pentamadine(sp?) (antibiotic). Then everyone that is in clinic is going to release a red balloon in Reese's honor at 3:30 PM our time. If anyone back home would like to do this too, you can do it at 2:30 PM. Reese's family will be doing the same at his graveside service. Shawn, I wish I could be there for you. Please know that we love you and are praying that you have strength to endure tomorrow. I will be there in thought and prayer.
We went to the Binghams last night for our game night. We had a good time. Jordan even had fun playing with us. Thanks Pat & Sal. We enjoy those nights very much.
We met a couple new families this week. The Ramsey's have a son with Hurler's named Nolan. He is a little under a year old and adorable. You can check out their website at www.caringbridge.org/co/nolanramsey. Also, another family from Holland moved in next to us today. They have a son named Harmon with Sanfilippo. He is such a doll. They don't have a website yet, but when they set it up, we will let you know. Pray for these families just starting the transplant process as well as all the other transplant kids.
Well, it is getting late: it's time for bed. We will update again soon. Take care and as always don't forget to sign the guestbook and let us know you checked up on us. We love to hear from you all. We love and miss you.
Love,
Carrie

Tuesday, March 11, 2003 2:13 PM CST

Day+88

For those of you who haven't heard, it is with a heavy heart that I tell you of Reese's passing. He became an angel around 2:45 yesterday afternoon. This has by far been the most difficult death for me since we have been here. I have gotten to know his mother very well and feel as if Reese was a part of my family. I have cried since I found out yesterday. It's just so unfair. No parent should have to make the decision that Shawn & Doug made yesterday. We are so saddened by the loss of Reesiecup, but know that he is in a better place pain free. I know that Jordan has another precious angel watching over him now. You can visit his website at www.caringbridge.org/nc/reesecup
OK, on a lighter note, clinic went well today. We got up early and went in at 9:00am. We were out of there by 1:00 which just might be a record for a Tuesday. We talked to Dr. Kurtzberg about putting in Jordan's port, but she wants to wait at least two or three weeks. He has a touch of Graff Vs. Host disease. They are not worried about it and think that it is because his cyclosporine level got so low this week. I noticed his rash started appearing when his level dropped down to 60. They want it around 150. Needless to say, they upped his cyclosporine and steroids. They were going to lower his steroids and change them to oral, but it would be too dangerous to do that at this time. Pray that the doctors can get these levels up and under control. If they don't, the doctor will not consider sending us home until they are controlled. His platelets and hemoglobin have been slowly dropping as well. Dr. K. seems to think it is all due to the fact that his meds are too low. Hopefully next week we will see some vast improvements.
All of this did not help my mood. I want so badly for Jordan to be well enough to come home. For the first time since we've been here, I am getting homesick. I think there has just been so much heartache here lately that I want to get away from it all. Sometimes I just want to pick Jordan up and run away from it all. I wish I could wave my hand and make him all better. I was told it would be a long road here and much harder on me & Patrick than Jordan. Dr. K. & June were not lying. This is almost too much for a person to handle. I don't know how single parents do this here alone. I don't know what I would do without Patrick. He is the most supportive husband in the whole world. God gave me an angel in him.
Well, Jordan is waking from his nap so I have to go. Take care and God bless.
Love,
Carrie

Monday, March 10, 2003 7:31 AM CST

*****Monday, 5:30 PM*****I wish I were updating with good news, but unfortunately I just heard that Reese left us and became an angel this afternoon. My heart is breaking so much for his family. I ask that you all say an extra prayer for his family to have strength to get through this very difficult time. You can visit his website and offer your words of comfort to his family at www.caringbridge.org/nc/reesecup


Day +87

Yesterday was such a beautiful day here. We went to the mall in the morning before it opened. Alicia Bennett contacted "Build A Bear" and they opened 2 hours early so several of the transplant kids could go in and make a teddy bear or other stuffed animal. It was so nice of them to allow us there before the mall crowd was there. These kids would not have been able to go otherwise. Thanks Alicia & Alyssa; we had a great time.
When we got home from the mall, we decided it was too nice to stay inside, so we drove to Jordan Lake. It was 70 degrees here, and kids were swimming in the water. Jordan loved being able to be out in the fresh air. Patrick and I enjoyed the change of scenery. It was a really nice family outing. We plan to do things like that often when the weather is nice. Jordan can be outside as long as we are careful about sun exposure. As long as the quality of the air is ok and it's not windy, he doesn't even have to wear a mask. This makes our outings much more fun. Of course if there are several people around, the mask is necessary. Anyway, we all enjoyed our day.
Jacob seems to be doing better. Pray that his spinal tap comes back cancer free. There is a new little boy named Nolan that is going in for transplant for Hurlers on my Mom & Dad's aniversary, March 18th. We wish him and his family the best of luck. Pray for Cody to recover from the Polliyoma (spelling?) virus quickly. It looks like our little buddy Reese is not doing well at all. As a matter of fact, if he doesn't improve in the next day or two, they are going to take him off the machines and just make him as comfortable as possible. Please pray for the doctors to have the wisdom to help Reese. Pray that his family has the strength to endure whatever God has planned for them. Pray that Reese can be healed (however God intends that to be done). Shawn, know that I am here for you no matter what. I love you and Reese and am praying for you round the clock.
Also remember to praise God for the miracle he is working for Jordan. I am so blessed to have a child doing so well after enduring so much. He is truly an amazing child who is growing and developing by leaps and bounds. He rolled over from back to belly for the first time on Saturday. He also had veggies for the first time on Saturday. He didn't swallow much of the sweet potatoes, but we had fun trying to feed him. It was great until he sneezed sweet potatoes all over his Mommy. Patrick laughed and so did Jordan. I'm glad they thought it was funny. Anyway, I better go and enjoy this day. Remember all the transplant kids in your prayers.
Love,
Carrie

Saturday, March 8, 2003 1:55 PM CST

Day +85

Finally, we have our happy boy back! We went in for what was supposed to be a quick clinic visit yesterday, and Jordan needed blood. I was so happy because I knew that it would perk him up. What should have been an hour or two visit turned into a 7 1/2 hour stay. It was long, but worth it for him to be back to his old self again! It was kind of nice to see everyone in clinic. Kendra, thanks for the formula yesterday. Jordan and I wouldn't have made it through our day if you hadn't come to the rescue.
I have a big request for all of you. I need you to pray for Andrew Bowman. He is back at Duke because he is feeling lousy. Pray that whatever is causing his pain is minor and can be treated easily. Ellen, I'm thinking of you.
I also need you all to pray for Reese. My heart is breaking for his family right now. Shawn & Toni, you guys know I adore you and wish I knew how to cure Reese. Everyone needs to pray for him because he is really struggling. This family has a special place in my heart, and I want so much for them to have their beautiful boy healthy.
I really can't write anymore right now. When I think about all the things we and these families are going through, it's just too much. It's so unfair to see such great people hurting so much. Bye for now.
Love,
Carrie

Thursday, March 6, 2003 6:27 PM CST

Day +83

We hope everyone is doing well. Jordan, Patrick, & I are all doing well here. Jordan is still a little fussy, but he is getting better. He really is just moody. The steroids can cause big mood swings. Let me tell you, he has them. He will be playing and having a great time one minute and crabby the next minute. Maybe when the doctor lowers his steroids again on Tuesday he will be less moody. He is getting mighty hairy. I have changed the pictures on the photo page, so check them out. Everyone wants me to keep the picture of the family, so when I figure out how, I will put it on the main page.
I still need you all to pray for Reese and Jacob as well as all the other transplant kids.
Love,
Carrie

Wednesday, March 5, 2003 5:58 PM CST

just a quick note to say all is well with us, but I need all of you to honor a desperate mother's wish. Shawn, Reese's Mom, wants everyone to pray the following prayer at 7:00 pm to try to save Reese. I ask you all to join us in this prayer for this special boy.

Father, You formed us in our mother's womb and established the number of our days before there was even one of them. You are intimately acquainted with all of our ways, and nothing escapes Your notice.

Jesus, You are the Great Physician, and there is nothing too difficult for you. So we bring Reese before you now, and ask that you would touch him with Your almighty power. Your word says that "You hear the desire of the afflicted; you encourage them, and you listen to their cry." Hear us now, as we cry out to you and answer us in this time of need.

Touch his body Lord, with the strength he needs to fight this pneumonia and heal his lungs so that he may recover quickly. Your Word declares that it's by your stripes that we are healed, so I take hold of that promise for Reese right now, and I proclaim your provision for his healing. Let Your peace overshadow him, and Your presence be his comfort at this time. I pray in Jesus mighty name, Amen!
Thank you!
Love,
Carrie

Tuesday, March 4, 2003 5:14 PM CST

Day +81

Hi to all. There is not a whole lot to update you on, but Jordan is doing better today. When we went to clinic, Dr. K. said that he could be fussy from lowering the steroids, or he may be cutting teeth. She decided not to lower his steroids today and watch him this week. If Jordan's mood improves, they will lower them next Tuesday. They will probably switch him to oral steroids as well. This will be the last IV med and then we can talk about taking out his lines and putting in the port. Other than that, we have no issues, and Jordan seems to be in a better mood today. His hemoglobin is at 8.8, which is low but not enough for a transfusion. Low hemoglobin could cause him to be more tired than usual.
We talked to Jacob's parents today, and they are optimistic about Jacob's recovery. He is still really tired and not feeling well, but we wish him the best. Reese is doing better too. I saw Shawn and Toni in clinic today, and they said he is stabalizing. They still have him on the osolator, but he went from 100% oxygen to 57%. This is a nice improvement. He still has a long way to go before he is out of the PICU, and I can see the hurt in his mother's eyes. I tear up thinking about our conversation today. Please pray for these and the other kids from 5200. Talk to you all later.
Love,
Carrie

Monday, March 3, 2003 8:55 PM CST

Day +80

We are doing well here, but Jordan has been really fussy the last two days. We think that it is because his hemoglobin is low. It was at 8.9 on Friday and has slowly been coming down for a few weeks now. He will probably need a blood transfusion tomorrow at clinic. They transfuse for anything under 8.0. I know Jordan's level has to be that low because he is just tired, cranky, and wants to be held. He will eat about one or two ounces of formula and fall asleep for about 10 or 15 minutes and then be back up wanting to eat. The doctor explained to me before that it takes so much work for him to eat that it exhausts him. When his hemoglobin is low, he doesn't have the energy to eat, so he is miserable. Days like this are exhausting for him, Patrick, & me. Hopefully after getting blood tomorrow, he will perk up and be back to his smiling self. This is all just part of "normal transplant stuff." I will take a fussy baby anyday over one that is not doing well. I pray that Jordan continues to do so well and that this is his biggest problem. I ask that you all pray for the other families that haven't been as fortunate as us. Reese is still in the PICU, and last I heard the doctors might put him on an oscolator. I guess that is much worse than a ventalator. They want the machine to breath for him so that he can use his energy to heal. When I even think about how Shawn (his Mom) and Toni (his Aunt) feel right now, it breaks my heart. That little boy is so sweet, and I need all of you to pray that he recovers soon. Like i've said a million times before, all these families and kids are like our own. If you could have seen the look on Shawn's face in clinic last Tuesday, you would have cried. She looked so sad. Shawn, if you are reading this, please know that you are constantly in my thoughts and prayers, and we love you guys! Hang in there. I also need all of you to pray for Jacob. He has chemical meningitis (they think), and he is having a rough time with the radiation. He is off the unit and back at their apartment, but he still needs your prayers. In addition to these kids, their are so many more that need your prayers to continue to do well. Some of the other ones that hold a special place in our hearts are Isaiah, Andrew, Jillian F., Jillian L., Tommy, Travis, Cody, Sean, Mckenzie, Douglas, Cameron, Tucker, Jacob I., Jaxon, & Alex. All these kids and the ones on the unit now need your prayers. God bless you all.
Love,
Carrie

SUNDAY, MARCH 2ND 11:12AM CST

JUST A QUICK NOTE TO TELL YOU ALL TO PRAY FOR REESE. THEY ARE TAKING HIM TO THE PICU TO PUT HIM ON A VENTALATOR. THEY ALSO THINK HE MAY BE BLEEDING FROM SOMEWHERE, POSSIBLY HIS LUNGS. PLEASE SAY A SPECIAL PRAYER FOR HIM! YOU CAN VISIT HIS WEBSITE AT WWW.CARINGBRIDGE.ORG/NC/REESECUP
I WILL UPDATE LATER!


Day +78

Hello. I am sorry we haven't written. The ice storm messed up our computer and internet service, and Patrick just fixed it.
So . . . here is your update. There isn't a whole lot to tell. Jordan is doing awesome. His rash is gone, and the doctors have once again lowered his steroids. He is on a very small amount and the doctors are going to lower it again on Tuesday. Since this will be such a small amount, the doctors will change the steroid to oral very soon. Once that is done, we will schedule an appointment to take out Jordan's central line catheters and put in a port. This will be so much easier, especially since Jordan is now grabbing his lines so much that we are changing his dressing every 3 days. This is only supposed to be done once a week. Anyway, it will be so much easier having a port.
Jordan's counts look awesome. The doctors have lowered some of his other medicines from twice to once a day. He is now taking 6 in the morning and 4 at night. He is doing so well. I just couldn't be prouder of him. He is trying to roll over. He can do it with just a little push. He also loves to look at Patrick and laugh and squeal.
Well, Patrick's parents headed back to Illinios yesterday. Patrick, Jordan, & I were sad to see them go, but we can handle things on our own now that Jordan is doing so well. We will miss them and hope they have a safe trip back.
Anyway, that's about all going on around here. I know, it's terribly exciting isn't it. That's our life: Doctor's visits, changing diapers, cleaning up spit-up, and laughing at this amazing boy. That's all for now. We love and miss you all.
Love,
Carrie

Tuesday, February 25, 2003 8:07 PM CST

Day +73

HAPPY MPS DAY! Today is national MPS day. MPS is short for muccopolysacharide. Yeah, it took me a while to be able to say it too, but that is the type of disorder that Jordan and many of the other kids from the unit have. Thank you Alicia for the MPS beanie. It is adorable.
Anyway, Jordan is doing incredibly well. Dr. K. said she is so pleased with his progress. She further explained to me today why his cells are growing slowly. Because he was so young when they performed the transplant, he was given a very low dosage of Busulfan (one of the chemo drugs). She said they gave him barely enough to allow it to work. They didn't want his level to get to high because there is a higher risk of seizures for babies. Anyway, this will cause his cells to grow back at a slower rate. I'm not exactly sure why (i'm sure it has something to do with his immune system), but it doesn't matter to me. He is growing donor cells, and that's all that matters. All of Jordan's labs look great. He hasn't had to have platelets, blood, or GCSF in over 3 weeks. This is such a good sign.
Dr. K. said that they will remove Jordan's lines and put in a port before he goes home to Illinois. A port is placed under the skin and needs little to no care. That means no dressing changes, flushing lines, or sponge baths. Jordan would be able to be in water without any problems. The port is accessed by a needle, but it is not painful (like getting blood drawn would be for Jordan). They want to keep this so that Jordan will not have to get stuck in a vein every time he goes to the doctor. This port can be in for up to a year, so this would be so much easier. Also, Jordan can't grab it! That is a big plus.
Well, I better go to sleep. Today was a very long clinic day, and I am exhausted. I need you all to keep Reese and Jacob in your prayers. They are both back on 5200 and not doing very well. We want them to make a full recovery, so please remember them and all our kids in your prayers. Take care. We love and miss you all.
Love,
Carrie

Monday, February 24, 2003 9:45 PM CST

Check out the new photos!
Day +73

Hello to everyone! This is going to be a short update, but I just wanted to let everyone know that we got the FISH results back. Jordan is 53.6% donor cells. Although this isn't the 100% we were wanting to see, this is really great news. Jordan improved by 20% and given that he was sick when we did the test, this is so encouraging. Everyone wants to know why he is growing cells so slowly. Well, the doctors said, "everyone grows cells at a different rate, so this is normal for Jordan." Besides, I will take growing cells slowly over being back on 5200 or having major complications any day. Many kids that were above 90% donor cells at 30 days post transplant are having major problems now. I will count my blessings and not question God's plan for my little miracle. I and the doctors have no doubts that he will eventually reach 100% donor cells. "How do you know?" you ask. I have faith in the doctors, my son, & God. That's how I know. Well, I am off to bed, I just wanted to let everyone know our good news. I will probably update tomorrow, but it might be late after our long clinic day. Until then, God bless.
We love and miss you all.
Love,
Carrie
PS keep praying for all the transplant kids, especially Jacob, Tucker, & Reese.
Tucker's website: www.caringbridge.org/nc/tuckerhall
Reese's website: www.caringbridge.org/nc/reesecup
Jacob's website: click on the link below!

Sunday, February 23, 2003 2:46 PM CST

Day +72
Hello to everyone! We are doing great here. Jordan woke up at 6:00 this morning, took a bottle, and went back to sleep until 8:30. He woke me up by babbling and laughing in his crib. It was a wonderful sound to wake to. He has been in such a great mood. I am so glad to see him smile and hear him laugh. It just melts my heart. He is the happiest baby I have ever seen. He never even cried or frowned when I gave him his oral medicine this morning. I have been blessed. Patrick and I went and looked around at the flea market for a few hours this afternoon, and it was pretty fun. We ended up buying toys to send home to the dogs. Santa Cruz & Nonchalant love squeaky toys, so when I saw them I couldn't resist. We miss our dogs so much. They are staying at Sawgrass Kennels in Forsyth, IL. The people at the kennel are wonderful. They make sure our dogs have everything they need. Our dogs even get doggy massages. WOW! Thanks guys! Other than that, we haven't really done much. All of Jordan's labs from Friday looked great, so we don't have to draw blood or go to clinic again until Tuesday. All of the cultures and tests that the doctors did last week (when Jordan was sick) came back negative. This is good. It means that we do not have to be on any kind of isolation at clinc because he is no longer contagious. It was just a stomach virus. We still haven't heard anything about the FISH test yet. I guess we have to wait until Monday or Tuesday. Pray for large numbers of donor cells: 100% would be great, but we will settle for an improvement from last time. It should be significantly higher because he had 30 extra days to grow cells. We will let you know as soon as we know something.
I still need you guys to pray for all the families here, especially Jacob, Reese, & Tucker. They are all going through really rough times and need your prayers and support. We will update you on their conditions when we know more. Thanks again for all the e-mails and guestbook entries. We love reading them all. It means so much to hear from all of you.
We are sorry we haven't been updating every day; life gets kind of dull when you are stuck in an apartment and there isn't a lot to tell you about. We can't take Jordan anywhere except the clinic or 5200. That limits the places we can go, but we love just staying at home and playing with Jordan. He is reaching for toys now and trying to roll over. He just about gets over and then falls on his back again. It is funny to watch him kick and grunt trying to roll over. He will be there in no time. He also may be getting a tooth soon. I know, "It's too early for that baby to be cutting teeth." BUT he keeps sticking his finger and knuckles in his mouth in the same spot and chews. Could be? I'll let you know. Well, Patrick's brother and his daughter are here, so we should spend some time with them. Talk to you all later.
Love,
Carrie

Thursday, February 20, 2003 7:04 PM CST

Day +69

Today has been a good day. Jordan is in such a good mood. He was having so much fun playing today that he refused to take a nap for more than a few minutes. He is so afraid of missing out on something. He started grabbing toys with his hands last night. He is finally figuring out how to get control of those things on the ends of his arms. He still stares at them in amazement. It is so much fun watching him concentrate on trying to touch something with his hands. The only problem with him learning how to grasp things is that he keeps grabbing his central lines. He has even learned how to grab them through his clothing. This could become a major problem. Hopefully in about a month and a half, these lines will be removed and this will no longer be a problem. Once the lines are removed, I will be able to put him in some water and let him splash. I can't wait for him to completely mess up our bathroom. Isn't it funny how little things become so important.
Jordan had a visitor today too. Maggie, his primary nurse from the unit, came over for a few hours today. Jordan entertained her with lots of babbling and smiles. We were so happy to see her. Jordan just looked at her for about 5 minutes trying to figure out how he knew her. He was sitting in his walker and would look away for a second and then focus on Maggie again. It was so sweet. Like I said before, I miss the nurses on the unit so much. They are so much more caring than most of the nurses in the clinic.
Speaking of the clinic . . . we are down to ONE DAY A WEEK! YEAH! We only have to go on Tuesdays to see Dr. Kurtzberg right now. Other than that, we go in if Jordan needs something. He hasn't needed platelets, blood, or GCSF (growth factor) for almost three weeks. We are so happy with his progress. Dr. K. says he is the poster child for transplant.
Well, that's about all that is going on here. We still haven't heard anything about the FISH test yet, but keep praying for high amounts of donor cells. I also want everyone to say a special prayer for some of the other kids: Jacob (he has some renewed hope with radiation), Reese (he has a Virus and is on isolation again on the unit), Tucker (he is undergoing surgery to remove his spleen). These kids need your prayers desperately. I also wanted to let everyone know that Mckenzie is now 77% donor cells. This is great news for her, and Jaxon is being discharged from the unit tomorrow. We are hopeing to get up to the unit for his confetti party. Talk to you all soon.
Love,
Carrie

Wednesday, February 19, 2003 7:59 AM CST

Day +68
Hello to all,
We are all feeling much better here. Gram & Jordan went to clinic yesterday, and Jordan looks great. All of his counts are really good. We had to lower his Cyclosporine again because his level was too high. We also repeated his fish test yesterday. We should know something by next Tuesday. Dr. K. said we may possibly know by the end of the week, but more than likely it will be Tuesday. The doctor did up Jordan's steroids until Friday because his rash still isn't going away. They have also increased the number of times we put the creams on him. Other than that, he is just perfect. He is sitting on Grandma's lap right now laughing and playing with his rattle toy that Hunter (a boy from the unit) gave him. We are doing wonderful.
On a sad note, some others have not been as fortunate. We found out this morning that Jacob has relapsed in his Central Nervous System. This news breaks our hearts. Jacob is one of the sweetest kids I have ever met. He has such a positive outlook. We want everyone to pray that this little boy gets better. He could use all the prayers in the world. We love you Jacob! You can visit his website by clicking on the link at the bottom of the page. Also, Reese is back on the unit. He has some fluid on his lungs, and they are running tests to know for sure what is wrong. He is currently on blowby oxygen & breathing treatments. The doctors believe he might have PCP pnemonia. That is very bad! They give all transplant kids antibiotics to try to prevent them from develpoing PCP. Pray for him as well. You can visit his website at www.caringbridge.org/nc/reesecup
Another child from the unit, Tucker Hall is also having some major problems. He is getting his spleen removed this week. Please pray for him & his family. www.caringbridge.org/nc/tuckerhall
These kids are all very special to us. We get so close to them and can't stand it when any of them are hurting. Please keep them all in your thoughts and prayers. Again, thank all of you for your prayers for Jordan. Don't forget to sign our guestbook and let us know you checked on us. We love and miss you all.
Love,
Carrie

Tuesday, February 18, 2003 6:30 AM CST

Well the last couple of days have been absolutely horrible. About 11:00 sunday night I started throwing up. I had vegetable soup for dinner, and between 11pm and 7am I vomitted at least 15 times. I finally quit about 7am and then Carrie started. she has only thrown up 3 times. Anyway mom and dad had to take Jordan to clinic. The only reason he had to go is because he is so sick. So anyway we know now why he was so sick. I feel better today, but I am in a lot of pain. My chest hurts a lot, but my stomach feels better. Carrie is still sick. We think Dad might be getting sick. I haven't eaten more than crackers in 32 hours. I hope I have lost a few pounds. Anyway my brain is not working real well, so I will update more tomorrow.
Patrick

Sunday, February 16, 2003 11:12 AM CST

Day +65

It's been a busy few days. Nothing bad, just busy. Patrick and I had a great Valentine's day. G-ma & G-pa Horton babysat, and we were able to have a nice evening. Last night Robert's girlfriend Emily & I watched movies while Patrick & Robert hung out. It was nice to watch some "chick flicks" with no men around.
Clinic was much better on Saturday. We had Danielle, who is our favorite nurse in clinic. She couldn't believe the story I told her about Thursday. She said to tell the head nurse next time something like that happens. She also said that I have every right to ask for a different nurse if we ever get that one again. She made me feel better.
Saturday was the last day that Jordan had to get his Ampho. This is good news because now we only have to go to clinic on Tuesdays and if Jordan needs anything.
I've been trying to get in touch with someone in the clinic today and have had no luck so far. Jordan has had some loose stools (for lack of a better way to explain) yesterday and today. We have to really watch this because he can get dehydrated so easily. He also puked up all his meds last night and his sodium this morning. He is not running a fever or acting like he doesn't feel well, but the other things can be early signs of an infection or illness. I called up to 5200 last night, and I was told to just watch him and see if he acts any different or develops worse symptoms. It is so hard to tell what is an illness and what is normal transplant stuff. That's why the doctors say just watch him. I was also concerned because he hasn't been eating like he was before, but then again his steroids have been lowered significantly. This can cause a decrease in appetite. All of his symptoms can be explained, but you can't be too careful.
He obviously doesn't feel bad because he is laughing, smiling, and playing hard today. He seems very happy. I just want to call and talk to the nurse practicioner to ease my mind. I will let you all know what happens, but I'm sure it's nothing serious.
I want to thank Kenny for the package. We got it yesterday and it is great. We love the Packer blanket. Patrick said we are going to convert you yet. Ha, Ha. Well, I better go. Talk to you all later.
Love,
Carrie
P.S. check out the new pictures!

Thursday, February 13th, 2003 8:14PM CST

Day +62

How is everyone? We are doing well here now that we are not in clinic anymore. Today was one of the worst days in clinic ever. I really miss the nurses on 5200. The nurses in the day hospital (with a few exceptions) just don't take the care & precautions that the nurses on 5200 do. Many of the nurses in the day hospital get in too big of a hurry and screw things up. Then they try to cover it up. Today I got angry with one of the nurses for screwing up twice with Jordan. She was just being careless and it (sorry Diane) pissed me off. This is my child, and she needs to pay attention to what the heck she is doing. The first mistake was that she infused one of Jordan's meds too fast. It was suppposed to be infused over 2 hours and it was done after an hour and a half. When I pointed out the mistake (afraid of the possible side effects of infusing the drug too fast), the nurse looked at me like I was stupid and tried to argue with me about it. I so badly wanted to say, "look lady, I know what he gets, when he gets it, and how long it takes." I do, that's my job. I eat sleep and breath Jordan's treatments. As a transplant parent, you have to. She just kept arguing until I explained to her how she made the mistake and then she was like, "oh, it's ok. He didn't have a reaction." I was so mad. He could have had a terrible reaction. It was just her dumb luck that he didn't. Then, when I was finally getting over that (yeah right), she did something just as bad. Instead of removing the tubing from Jordan's cap on his line, she removed the entire cap along with the tubing. (For those of you who aren't familiar with this, this is really bad. When you take off a cap, everyone in the room must be wearing a mask because of the risk of infection.) She just laughed, said, "oops, that cap must have been loose." I almost lost it. I matter-of-factly stated, "it was not loose." She said, "When do you change these caps? You need to make sure they are tight."
"Oh really, I changed them last night, and I know they were on there tight." I was so mad, I watched her grab the line and twist, instead of grabbing the tubing. I was furious. I couldn't wait to get out of there. I can't believe I didn't go off on her. She really pissed me off when she checked the rest of his caps and tried twisting them a little more as if they were all loose. What nerve that woman had!
Needless to say, by the end of my 5 hour clinc stay, I was ready to go home. I am sure my blood pressure was sky high! I think I will ask for a different nurse next time. Also, if Jordan gets an infection, I am going to go back and raise hell about that nurse.
OK, enough venting . . . Jordan's counts look really good. His WBC count went back up to 6.8. It had gone down to 5.7 on Tuesday, but Dr. K. said it will bounce around a little. As long as it stays above 5.0, he doesn't have to have any growth factor. We are going to repeat his FISH test on Tuesday. It should take a week or so to get back. Pray that it is much higher than 33%. We would like to have 100%, but I will settle for a nice jump from 33. Oh, more good news from 5200. Mckenzie was was supposed to be discharged today. I haven't gotten confirmation that she got out, but that was the plan. Also, Sean (the boy going through his 2nd transplant) was discharged this week with 100% donor cells. We couldn't be happier for them. Marchella (Sean's Mom) had a rough few months up there. Sean didn't have an easy road, but we are glad to see them in clinic now.
Well, I better go. Patrick and I are going to settle down and watch a movie. I hope you all have a great evening. Talk to you all soon.
Take Care.
Love,
Carrie

Monday, February 10, 2003 10:01 AM CST

Day +59

Hello all. We got Mom & Dad safely back to Illinois yesterday, and I am missing them already. We had a great visit. Patrick & Dad wore out the controllers on the Play Station playing Tiger Woods golf. I'm not going to say who won. Let's just say it was interesting.
Jordan misses Maw Maw & Paw Paw. He had so much fun being spoiled by them. Jordan has once again amazed us. His WBC count went from 5.4 on Saturday to 6.8 today without any GCSF (growth factor). His platelets went up from 43 to 60. He is producing everything on his own. This is such great news. We went to clinic on Saturday and the nurse practitioner said that his rash is fine. Now (with the increased white count) we know why he got the rash. He is growing more donor cells. HOORAY! We just have to keep applying the cream 2-4 times a day. They cut back Jordan's cyclosporine again because his levels were too high. It may take a while to get this regulated because the doctors switched it to oral. It doesn't absorb the same orally as it does IV.
After clinic on Saturday, Mom, Dad, Patrick, Jordan, & I went up to the unit to deliver Valentine's baskets to all the kids. It was awesome to see their faces light up. Dad had never been on the unit, and I wanted to show him where I had lived for 37 days. He couldn't believe how small the rooms were. It was neat though. I can't tell you how much better Mckenzie is looking. The doctors are talking about letting her go home either this week or next. I couldn't be happier for them. Rick & Chris are wonderful people and no one deserves to lose a child. I'm so glad she is doing better. We hope to see her in clinic soon!
Jaxon is doing well too but worrying Kendra & Joel. He has a fever that the doctors are having problems controlling. The doctors think it is because he is engrafting. I pray that this is why. Kendra- just remember it's a good thing. He is 10 days post transplant. Jordan started growing cells around this time, so it is very possible.
Sunday was a lazy day. Patrick and I took Mom & Dad to the airport and then came back & played with Mishael & Isaiah. The boys are addicted to playstation, and Patrick is happy to play with them. They love hanging out with him. I know that Patrick is going to be such a good daddy to Jordan because of the way he treats those boys, and the great job he has done with Jordan so far. Patrick can make Jordan smile on command. He only does it for me when he feels like it. He can be crying and throwing a fit and if Patrick says, "give me a big smile," Jordan does. It is great.
I want to thank everyone for all the calls, e-mails, & guestbook entries. We love hearing from you all, so keep them coming. Also, thank you to Karen & Chris Kuntzman for the Illini T-shirts. We love them and are representing while we are here. We love and miss you all.
Take Care!
Love,
Carrie

PS- Congratulations to Jacob, Tommy, Cody, & JD on busting out of 5200! See you all in clinic!

Friday, February 7, 2003 10:03 PM CST

Day +56

Hello everyone! Mom & Dad got here late but safe at about 6:00 last night. I am enjoying them being here so much. My Dad & Patrick have been playing Tiger Woods golf all day and having a great time.
Jordan didn't have to go to clinic today, but we have to take him in tomorrow. He has to get his ampho. His rash has gotten worse, so I am going to ask the Dr. about it tomorrow. I am a little concerned because we are using the cream, and instead of improving, it is getting worse. Dr. Driscole took him off one of the steroid creams on Tuesday, and I'm wondering if that was a little premature. The steroid helps to fight Graff Vs. Host disease. The rash is a mild form of GVHD, but since he isn't 100% donor cells yet, this is actually a good thing. We just want to be able to keep it under control.
Jordan has been a little fussy tonight. He has been spitting up quite a bit, and we think he has an upset stomach. If you saw all the oral medicine that he gets twice a day, you would know why. He must have a lead stomach not to vomit everytime he takes them. Anyway, these are issues I will discuss with the doctor tomorrow. I've already been told that these are normal transplant side effects, but I want to know what we can do to make Jordan feel as comfortable as possible.
Other than that, we are all doing great and enjoying the time with my parents. We again thank you all for your messages and prayers. I say this all the time, but they really do mean so much to us. We love and miss you all.
Love,
Carrie

Wednesday, February 5, 2003 5:33 PM CST

Day +54

What a wonderful boy we have. He has been in such a good mood today. It must be the lack of a tether. It is so nice to be able to pick him up and never worry about pulling on his lines. We didn't have to go to clinic today, which was nice, but we do have to go tomorrow to get his Ampho. Hopefully he will only have to get that for another week or so. Then we should only have to go to clinic twice a week (Probably on Tuesdays & Fridays or Saturdays and if he needs anything). That would be great. He hasn't needed blood or platelets in over a week, which is such a good sign. Keep praying that he doesn't have any setbacks. We are so proud of his progress!
Patrick and I went to meet Larry Murray (a friend from Decatur) for lunch today. It was nice to see someone from the St. Teresa community. I of course had to call & thank his wife for the gifts she sent with him. I talked to Amy & Susie in the development office and realized how much I miss school, all my students, & the faculty. I will hopefully see you all in April. I love and miss you guys!
Patrick and I are getting ready to go over to the Binghams for our weekly "game night." We go and play cards or board games with Sal, Pat, Isaiah, & Mishael. Isaiah was transplanted a few weeks before Jordan, & they live in the same building as us. We have a great time over their. They are great people with wonderful kids. We really enjoy our game nights. Grandma & Grandpa Horton like them too because they can spend some time alone with their baby. You know they have to have time to spoil the grandbaby.
Well, everything is looking good here, and we are so looking forward to my Mom & Dad coming tomorrow. I miss them so much. I don't know that I will be able to sleep tonight because I am so excited about seeing them. I haven't seen my Dad since the first week in November and Mom since right before Christmas. I usually see them once a week or every other week, so it's been hard to be away from them. I love you guys.
It's just about time for game night, so I have to run. Check out the new photos of Jordan playing with his walker this evening. He really liked it until he got tired and dropped his head forward. He bumped his head on the steering wheel and decided he'd had enough. Luckily, he wasn't hurt. Talk to you all soon. Take Care.
Love,
Carrie

Tuesday, February 4, 2003 4:48 PM CST

DAY +53

Hello All-
I hope all of you are doing well. We are great. Patrick and I took Jordan out to play with our neighbors, the Binghams yesterday.(check out the photos) We had a lot of fun. Jordan watched the boys play and really had a good time. We didn't have to go to clinic Sunday or Monday, so we were a little out of the routine for today's visit. I almost forgot to put a mask on him before we went to clinic. Luckily, Patrick reminded me before we left.
We got great news at clinic today. Jordan is producing platelets on his own. His count went from 28 yesterday to 42 today. I hope this was accurate and not a mistake by the lab. We saw Dr. Driscole today & he put Jordan on oral Cyclosporine. This is great news to us because instead of being hooked up to a pump for 2 hours in the morning and at night, he takes a little medicine by mouth. What a time saver and relief for us. This means Patrick and I might be able to go out for a few hours in the evening sometime. WOW! This is the last IV pump he was on. GREAT GOING JORDAN! You are doing so awesome. The only IV med he is taking is his steroid, which takes five minutes to give. This will eventually go to oral as well. Then . . . maybe . . . we will be able to take out those central lines before we go home. Once those are out, he can take a real tub bath. It's amazing how much small things like that are important.
Jordan is doing great with feedings and is up to 14 lbs. 5 ozs. What a big boy! Thanks for all the e-mails, cards, letters, and well wishes. Those prayers are working, and we appreciate them!
Love,
Carrie

Sunday, February 2, 2003 10:37 PM CST

day + 51

Nothing exciting to tell today except- no clinic. We got to stay home and goof off. Our neighbor Mishael came by this morning and asked if I wanted to race RC cars with him. I went out to play, and Carrie took Jordan to watch. He beat me real good. Then his brother Isaiah came out. He went through transplant a couple of weeks or so before Jordan. We all played and had a great time. It was about 60 degrees here. Then We hung out with their Mom and Dad for a while, and came home. It is supposed to be almost 70 tomorrow so I imagine that we will go out and play again tomorrow. It is funny how I used to take things like that for granted. Now I cherish them. We may not have to go to clinic tomorrow. It will be such a nice day, I hope not. I am trying to put my worries aside and enjoy the time we get to spend together. That is very hard to do, but worth it if you can. That is my little lesson to everyone who is reading this. My little buddy Jacob is getting out of the hospital soon. If you are reading this Jacob, hurry up we have got stuff to do. Anyway, that is all for today.
Patrick

Saturday, February 1, 2003 6:00 PM CST

Day +50

Well, today we had to go to clinic, but Jordan's counts look awesome! His platelets are still holding on, and he hasn't had to have a transfusion in a week. His red blood cells are actually starting to produce on their own. Two days ago, he was at 12.7 and today he was at 12.9. This is great news. He also has a little bit more of a rash. The nurse practicioner that he saw today was happy about this. It is a sign of minor Graff Vs. Host disease, but at this point it's a good thing. This tells us that the cells that Jordan is producing on his own are more than likely donor cells. He wouldn't be getting a rash if they were his. Hopefully they will do another FISH test soon so we will know for sure. Dr. Kurtzberg is out of town until Wednesday, so they probably won't do another test until day 60 or so. I want so badly to know that he is at a higher percentage of donor cells. Keep praying for this! Other than that, we are doing great and everything is going well. I can't wait until Thursday! My Mom & Dad are coming to visit! You guys are going to be shocked at the changes in this kid. He is doing something different everyday. He giggled last night while he was watching his mobile. It was so precious I cried. Man, the little things in life mean so much. I never thought I could be entertained for hours by just watching this little boy. He just amazes me every single day. Well, I better go and fix something for supper. Keep praying for Mckenzie; she is doing better. Also, pray for all the kids in clinic and on 5200. Take care. We love and miss you all.
Love,
Carrie

PS: say a special prayer for the astronauts of the space shuttle Columbia and their families! May those seven people rest in peace.

Friday, January 31, 2003 at 09:38 AM (CST)

Day +49

No clinic today either! YEAH!!! We didn't even have to draw blood this morning. Jordan let Mommy & Daddy sleep in. It has been a great day so far! We went to clinic yesterday & Jordan's counts looked so great that the doctor is not making us draw blood or come in until tomorrow. Man do I enjoy being lazy! We were lying in bed last night and Patrick asked "what are we going to do tomorrow?" I answered, "you're seeing it." We just both laughed at the honesty of that statement. Today is Grandma Horton's birthday, so we are going to try to let her spend as much time with Jordan as possible today.
I'm asking everyone to pray for Baby Jaxon today. He is getting his transplant this afternoon, and we pray everything goes well. We want new cells to grow grow grow!
I am still asking that everyone continue to pray for Mckenzie. She is doing better, but has a long way to go. I know this is a short entry, but we are doing so well that there is not a lot to update. We love and miss you all. Thanks for all the guestbook entries. They mean so much to us!
Love,
Carrie

Wednesday, January 29, 2003 at 11:59 AM (CST)

DAY +47

Yeah!!! no clinic today! We were in clinic for 5 hours yesterday, so when they told us we didn't have to come in today we were so happy. Jordan is doing great. They lowered his cyclosporine and steroids again yesterday. They will keep lowering these each week unless he starts showing symptoms of GVHD (Graff vs. Host). He still has a little bit of engraftment rash, but we are still using the creams to get rid of it. I have a feeling it won't completely go away until he is completely engrafted with donor cells. Hopefully this will happen in the next few weeks. The doctors will not do another test to check for donor cells for another 2 or 3 weeks. It is somewhat frustrating to wait and see, but I am just thankful that he is showing some donor cells. I don't want to go through the entire thing again. He did so well, and I am extremely thankful. He may not do that well if he had to go through it again. Speaking of, pray for Mckenzie. She is going through her third transplant, and she has tested positive for the same virus that caused her to lose her second engraftment. Please pray for this little girl. Also, Sean just went through his second transplant, and the doctors believe he is engrafting. We sure hope so! Travis, a little boy who was on the unit with Jordan, is starting to grow some cells . . . YEAH!!! He has had some bumps in his road, but sounds like things are going well now. You can get to his website at www.caringbridge.org/hi/twilliams
We still have to go in to clinic on Tuesdays, Thursdays, & Saturdays, but it sure has been nice to be able to lay around the house and be lazy today! Continue to pray for Jordan and all the other kids on and off the unit!
Love,
Carrie

Monday, January 27, 2003 at 07:02 PM (CST)

DAY +45

YEAH!!! We have reached another goal. Now that Jordan is 45 days post transplant, he doesn't have to go to clinic every day. We will have to go tomorrow because that is our long day, but after that we should get a break. We are ready for one considering we were at clinic for 7 1/2 hours today. Patrick and I were really getting frustrated with the way the clinic is done. We waited for 4 hours in the waiting room while they "got his blood ready." Then, we had to wait for 3 1/2 hours in the day hospital while he got a blood transfusion. I wish we could draw blood at home and drop it off, and if he needed something, they could call us and tell us when to come in instead of keeping us waiting all day. Oh well, after tomorrow, I guess that is how it works. We will still have to go in for sure on Tuesdays, Thursdays, & Saturdays until day +60. After that, we will have reached one more milestone. Since we haven't had any major problems up until this point, it is unlikely that we will experience any major setbacks. Not to say that it can't happen, and I wouldn't dare say "we are out of the woods." Any infection, cold, or flu could still cause major problems, but we are a little closer to a stronger immune system and a normal life. Pray that he continues to thrive!
Mckenzie's mom updated the website yesterday, and she is doing so much better. She even got off the unit yesterday for the first time in 6 months. This is just amazing. Your prayers have worked, and this little girl has experienced a miracle! Thank you for all your prayers for Jordan, Mckenzie, and all the other kids on the unit. Continue with them becuase they really do help!
Love,
Carrie

Saturday, January 25, 2003 at 02:29 PM (CST)

I am edititg this entry because I want to thank you all for the prayers for Mckenzie. Amazingly, she is starting to get better. Her mother just updated the website today saying that she is getting better. Wow. GOD IS GOOD! What a miracle! Keep praying for her she has a long road yet, but thank God for small steps!


Day +43
We are so blessed. Jordan continues to do amazingly well. He is still above 8 for his hemoglobin, so he did not have to get blood today either. He will problably need it tomorrow. I can always tell when he is close because he gets so pale. He had to get his Ampho (anti-fungal med) and platelets today. He did well through the whole thing. I was trying to sleep in the bed with him, but everytime I would close my eyes, he would touch my face to wake me. It was really sweet. He laid in the bed and talked, laughed, smiled, and gurgled for 2 hours. I thought it was too precious. The nurses can't believe what a happy baby he is. He is getting bigger everyday, and I can't hardly believe it. It won't be long and I will be chasing him all over the house. I can't wait.
We still need everyone to pray for little Mckenzie. She is not doing well at all. As a matter of fact, her lungs and liver are worse. I think they are just trying to make her as comfortable as possible. It is so sad. They truly need a miracle for their baby girl. Keep her and her family in your thoughts and prayers. www.caringbridge.org/nc/mckenziefay or helpmckenzie.com

Take care & God bless.
Love,
Carrie

Friday, January 24, 2003 at 12:31 PM (CST)

DAY +42

Today has thankfully been uneventful. We went to clinic this morning and Jordan didn't need anything. His hemoglobin has been holding around 9.0, which is great. His platelets were 25, so he will probably need platelets tomorrow. Amazingly, his white blood cell count jumped to 18.7 after that boost of GCSF yesterday. As long as it stays above 5.0, they will not give him any more. Hopefully he won't need it very often because it makes him crabby. The doctors say that it gives the children bone pain (similar to arthritis). How awful! My poor baby. We did get Jordan's second FISH test back: 33% donor and 67% his own cells. BIG CHANGE HUH! The nurse practitioner said that this is still a positive thing because he maintained cells and actually increased .5 in one week. They probably won't do another test for 30 days, but at least we know we are moving in the right direction!
I still haven't heard anything about Mckenzie other than she was stable at about 9:00 last night. She is still in desperate need of your prayers. This little girl has so much to overcome.
Good news: Sean, the boy undergoing his second transplant, is doing well and growing cells. He may be going home (Durham home) pretty soon. I couldn't be happier for them. We wish Sean the best!
Jaxon is doing well with his chemo so far, but he has the same problem Jordan did. The busulfan is burning the skin on his little bottom. This is so sad to watch. I remember changing Jordan's diaper every hour whether he needed it or not because I didn't want him to sit in a dirty diaper. Those chemo. drugs are nasty. Hang in there Kendra! It gets better. Hopefully, that will be the biggest problem that he has.
Well, I hope everyone is doing well back home. Continue to pray for these precious children on the unit and in clinic, especially Mckenzie. They are all a part of my life because of the instant bond through transplant. It is unspoken, but there. Take care & God bless!
Love,
Carrie

Thursday, January 23, 2003 at 08:29 PM (CST)

DAY +41
This is going to be short because there isn't a whole lot to tell everyone. Jordan is doing fine. He had to get a boost of GCSF (Growth factor) today because his white blood cell count dropped to 3.4. This is ok and normal. It just means that they may have taken him off the GCSF a little too early. The doctors are going to monitor his levels for the next few days and if need be, they will give him more. If his counts stay above 5.0, they will not give him anymore. I still need everyone to pray for Mckenzie. I haven't heard any news this evening about how she is doing. I ask that you all say an extra prayer for her and her family tonight. She has been through so much and has so much to overcome. I am praying that God heal her. Hopefully I will have some good news for everyone about Mckenzie tomorrow. Jordan is sleeping right now, and I think I'm going to join him. By the way, he is getting the "cyclosporine eyebrows." Right now it just looks like he has dirt above his eyes. The poor kid, I tried rubbing it off today, and it wasn't dirt. I'll try to take some pictures soon so you can see what I mean. Anyway, good night. Please pray for Mckenzie. Take Care!
Love,
Carrie

Thursday, January 23, 2003 at 08:48 AM (CST)

I will update later, but right now, I need everyone to pray very hard for Mckenzie! She is doing poorly. She has a virus affecting her lungs, and things don't look good for her. Please say special prayers for this little girl. She is so precious & has fought so hard. Please keep her family in your thoughts and prayers. Visit her website and offer her family words of support and encouragement. www.caringbridge.org/nc/mckenziefay

I will update when we get back from clinic!
Love,
Carrie

Wednesday, January 22, 2003 at 03:16 PM (CST)

DAY +40
5 more days and we will be in great shape. The doctors say that if nothing major develops before that time, more than likely it won't. We are holding our breath for the next week. After day 45, we won't have to go to clinic everyday. It will be nice to get a break. We should get the new fish tests back next Tuesday, so pray for good things! We want those female cells to take over! Also, we heard that Jacob may be going home at the end of next week. Glad to hear it buddy! We can't wait to see you in clinic.
Jordan is just doing awesome. We gave him some cereal mixed with formula in a bottle last night & he slept for 8 hours. The doctor thought the rice cereal may help because his appetite is crazy due to the steroids. I think that she was right. He seemed to really like it!
I am going over to hang out with Pat, Sal, Isiaha, & Michalle tonight. We are going to have a little game night since they live in our building. Gram & Papa are going to watch Jordan. I use to play games with Isiaha when he and Jordan were in the hospital together. We had a blast playing bingo. I'm looking forward to doing something completely childish -- playing games!
Well, I will update you again tomorrow. Take care.
Love,
Carrie

Tuesday, January 21, 2003 at 07:37 PM (CST)

Day +39

Well, we got the results today, and we are a little disappointed. Jordan has 32.5% donor cells and 67.5% of his own cells. Dr. K. said that because we did the test so early that this is not a bad thing. She ordered the test to be repeated today, and the results should be back next Tuesday. The fact that he has donor cells is good. He is producing donor cells, but I was just hopeing that he was at 90% or above. I guess I should be thankful because he hasn't had any problems, and he is growing cells. I just can't help but be a little upset that he is not at 100% yet. Dr. K did not seem at all concerned about it, but you know how Moms are. I want my baby to be perfect. I don't want him to have a day of pain, a moment of unhappiness, but I can't protect him forever. I keep telling myself that I have to be thankful that he is doing so well.
I went up tonight and visited Kendra & Jaxon on 5200. Jaxon is two weeks older than Jordan, & he has hunters too. He got his central lines put in today and was admitted. We wish him, Kendra, & Joel the best. I got to see Jacob, Douglas, Cameron, & Tommy too. I was glad to visit, but glad to go home too.
At clinic today, Dr. K. cut Jordan's meds. down. His GCSF is gone now. He was growing cells so fast that he doesn't need it for now. If his white cells drop below 5.0 then they will start it again. She also cut back on his steroids & cyclosporine. This means that he is doing great. Keep praying that he grows those female cells. I have no doubt that those female cells will take over. Anyone who has lived with a woman knows that women eventually take over everything! Ha, Ha. Talk to you all later.
Love,
Carrie

Monday, January 20, 2003 at 01:52 PM (CST)

Day +38
NO LAB RESULTS YET! We are sorry we haven't written, but no news has been good news. Jordan Patrick and I are doing fine. We were hopeing we would get the "fish" test results back today. (donor cell test) Unfortunately, we haven't heard yet. I bet they are waiting until tomorrow when we see Dr. Kurtzberg. We will let you know when we know something. There really isn't anything else going on, but I will try not to wait as long before we update again. By the way, pray for Mckenzie. They had to take her to the PICU yesterday for fluid around her lungs and heart. The doctors drained some of the fluid yesterday, and she did well, but she still has a long way to go to recovery! She is growing donor cells, which is going to help her, and she is a strong little girl. Keep her and her family in your thoughts and prayers. Talk to you soon.
Take Care.
Love,
Carrie

Saturday, January 18, 2003 at 08:37 AM (CST)

Day + 36

We are still doing great. Jordan should get his "fish" test back on Monday or Tuesday. That is the one that tells whether he has donor cells or not. This will be 100% proof that he is engrafted (even though the doctors already believe he is engrafted with donor cells). We are getting ready to go to clinic, and then we are going to take a quick visit to 5200. I want all the nurses (especially Maggie) to see how well Jordan is doing. I also want to take something to McKenzie. She is engrafting with Donor cells! This is such good news. She just went through her third transplant. The first two were unsuccessful, but this one is working. Thank you for all the prayers. If you want to offer congratulations to her, her web page is www.caringbridge.org/nc/mckenziefay
I'm sure they would love to hear from you. They have been through so much, and this little girl is precious. Anyway, Jordan's counts look great. He is thriving. He is by no means "in the clear," but he is getting stronger everyday. They cut his GCSF (growth factor) in half b/c he is growing cells so rapidly. Also, they weined his cyclosporine & steroids down a little. This makes me happy. He is eating like a pig. He ate 25 1/2 ounzes of formula yesterday. This is almost as much as he was eating before he went in for transplant. He is gaining weight too. Yesterday he weighed. 13lbs. 12ozs. What a piggy boy! He has discovered the joy in playing "peek a boo" and has learned to laugh with his mouth wide open. It is so great. He is tucking his feet up and starting to turn to the side, when lying on his back. He will be rolling over in no time. I can't believe he is growing this fast. It is amazing to me. He is such a miracle.
Well, I better get going to clinic, but I just wanted to update everyone. I miss and love you all.
Love,
Carrie

Thursday, January 16, 2003 at 07:38 AM (CST)

Day +34

Wednesday was much better than Tuesday. We actually got right in and right out at clinic. Patrick and I couldn't believe it. Jordan was in such a good mood, and so were we. When we got home, we laid Jordan on the bed, and he kicked and smiled and laughed for almost an hour. After all the fun, all three of us took a little nap. It was much needed and very nice. Jordan slept through the night again last night and woke up at 7:30 this morning for a bottle. He was asleep again by 8:30 so I'm sneaking a few minutes to update the site before I have to get ready for clinic. Today shouldn't be too bad, but he has to get his ampho. today which takes 2 hours.
We want to send out a big thank you to a grandma & her two grandsons (Curtis & Brad) from Decatur & St. Louis. They sent us a letter saying that they always choose a family (from newspapper articles) to send money to during Thanksgiving. They made a donation to our account around Thanksgiving, and these amazing little boys age 8 & 11 sent us their money they earned raking leaves & doing extra chores. Needless to say I was moved by the hearts of these children and their family. I don't know who you guys are, but I want you to know how wonderful you are. Your children are so lucky to have great parents & grandparents. We appreciate your donation & are touched by the generosity of Curtis & Brad. I hope that we and Jordan can do the same for another family some day.
I thought I would end on a very positive note since the last entry was so negative. We are doing great; Jordan is doing awesome, and we are so greatful.
One more thing- I just found out that Tommy Bennett's transplant did not work. He is getting ready to go through transplant again. Please pray for him. The Bennett's website is www.caringbridge.org/ca/bennettboys

Thank you all again for your encouraging words & prayers!
Love,
Carrie

Tuesday, January 14, 2003 at 09:42 PM (CST)

Day +32
Today is going to be a short entry because I'm going to bed. This day has sucked, sucked, sucked! (I'm sorry Diane, nothing sucks but my momma's vaccumn) We were in clinic for 8 1/2 hours today and are totally exhausted. Jordan's counts look awesome; they are even going to cut back on some of his steroids & GCSF (growth factor). Yet, Jordan had to get his IVIG (2 hours), ampho (2 hours), & platelets (1 hour). I know this only adds up to 5, but we were there for 8 1/2; you figure it out. Anyway, I contaminated Jordan's single lumen last night by hooking up his cyclosporine to it by accident, so his level was wrong. The nurse had to draw levels from all three lines & make an estimate to what his actual level is. The line will be clean again in approx. two weeks. Way to go mom! Oh well, that was a minor mistake & Dr. K. made me feel better by saying that many nurses and doctors have made the same mistake, and I'm not the first parent to do the same. On top of all that, Jordan has been cranky all evening. Anyway, the extent of the crappy day didn't end there. I got home and Patrick had gotten me lasagna and I dropped it on the carpet at the apartment. It is just not my day. Then, Patrick dropped a remote on my finger, and I cried. I finally got everything cleaned up, Jordan's oral and IV meds done (correctly), my finger better, and I am going to bed. I hope everyone had a much better day than me. I am still going to thank God in my prayers for my healthy boy. He just smiled and made things a lot better. Isn't it amazing how a smile can do so much. Take Care & God Bless
Love,
Carrie

Monday, January 13, 2003 at 10:41 PM (CST)

Day +31

Today was just one of those days. We showed up at clinic at about 10:30 am. Carrie signed in at the pharmacy, and we went back to the waiting room. A little while later they came back to get his vitals. Then we waited for what seemed like forever. There was a kid in the waiting room who kept screaming, for no particular reason. Eventually I tried to poke out my eardrums. Just kidding, unfortunately I didn't think of that until now. Jordan was scheduled to get an antibiotic called pantamasomethingorother. This has a possibility of an anaphalactic reaction. Anyway finally Carrie asked a nurse if we would be going back to the Rainbow Day Hospital for his antibiotic, and she said that they are cleaning the rooms, and they would call us back when they were ready. Well we waited for a while longer, and then we asked another nurse, and she actually did her job, and went to check. They had a mix up in the pharmacy, and blah blah blah we were seven hours in clinic due to laziness. We got home today, and took a little nap, and then went to Wal-mart. That is about it. Jordan is doing good, and by the way had no reaction to his medication. Looks like my buddy Jacob is growing some cells. Way to go kid. I'll keep my promise and bring you my spiderman game this week. But you gotta feel better so you can play.
Patrick

Sunday, January 12, 2003 at 07:46 PM (CST)

Day +30

WBC= 11.4 platelets= 102 hemoglobin= 6.8

Today, our clinic visit was really long because Jordan had to get blood, but it could have been longer. He was supposed to get his pentamamine (an antibiotic), but they decided to wait until tomorrow to give it to him. The nurse said that some kids react to the medication badly, so she would feel more comfortable giving it to him on a day when there is more than one nurse there and the doctors are readily available. Pray that he doesn't have a reaction to the medication tomorrow.
As for the minor problem last night that cut my entry short, we had a disaster with Jordan's pump. He was hooked up to his cyclosporine pump, and it has a really short line on it. Mike picked up Jordan and as he sat down on the floor, he pulled the pump off the table. The line broke off the pump and contaminated his med line. I had to stop the pump, flush off his line, and call home infusion. They told me how to fix it, and he still got the correct dose. Mike felt so bad that I had to really hug on him so that he didn't feel guilty. (if those of you who know Mike can imagine him being hugged:) It was no big deal, he just didn't get finished with his meds. until after 11:00 instead of at 10:00.
Other than that, he is doing great. He is eating much better after getting blood today. The doctor explained that loss of energy was why he wasn't eating. With his hemoglobin so low, it took too much energy to eat. He has made up for it today. He has had about 18 ozs. already and will probably eat at least one more time before bedtime.
GOOD NEWS FOR MOMMY & DADDY: Jordan slept all through the night last night. He slept from 12:00am until 7:45am. This was amazing and a little scary. I would have worried if I hadn't heard him playing a little in his bed when I woke up. Patrick woke up and said, "is he ok?" He was worried when Jordan hadn't gotten up at 4:45am like normal. I was thanking God for the extra sleep.
Well, everything is going well here. Jordan will be finished with all his meds in a 1/2 hour, and then I will give him a bath and hopefully put him to bed. We will see how stubborn he gets. He has a little of his mother in him. Ha, Ha. Anyway, Take care. Talk to you all soon.
Love,
Carrie

Saturday, January 11, 2003 at 07:47 PM (CST)

Day +29

WBC=10.1 Platelets=8 hemoglobin 8.1 (for the 2nd day in a row)

The past few days have been very hectic. Sorry we haven't written, but it has been so crazy trying to get everything situated for clinic. I am getting into a routine now, but it was hard trying to get a schedule of labs., oral meds., and then IV meds. Jordan is sleeping pretty well now. He goes to bed at about midnight, gets up once during the night at about 4:45 to eat and then he is sleeping until 8:00 or 8:30. Let me tell you how nice that is. I have no doubt that in a few weeks he will be sleeping through the night.
His blood pressure has been doing well since they upped his blood pressure medication, so that is one less worry. The only thing we are having problems with now is the lactose free formula. Jordan hates it. When he was in the hospital and feeling lousy, he ate it and didn't care. Now that his stomach is doing better, he doesn't like the taste and is not eating as well. He is still staying at around 16 to 17 ounces a day, but we want to keep him at 20 or more. I am going to talk to the doctors about it tomorrow, but they don't seem concerned. Worst case scenario: we have to put him on TPN. They may just try a different lactose free formula.
I have great news for everyone. Jacob has an engraftment rash. He is miserable, but happy about it. Also, all of his CT scan results were negative. They were worried about his headaches. They thought maybe the cancer was returning, but they now think it is just pain from the growing cells. The GCSF can cause bone and joint pain. We give Jordan tylenol at night before his dose to help with the pain. You can check up on Jacob by following the link at the bottom of the page.
We were at clinic for 3 hours yesterday and about 6 hours today. Obviously from his counts, he needed platelets, but he also had to get his ampho., which is an anti fungal medication.

Whe had a minor inconvenience just now. Nothing to be concerned about, but we will have to get back to you later.

Thursday, January 09, 2003 at 08:10 PM (CST)

Day +27
WBC=5.0 (it went down, but that is ok & normal)
We're home! Well at least out of the hospital and in our apartment. It feels so good to be able to walk around from room to room holding Jordan with no mask & no IV pole. I keep catching myself trying to pick up his lines when I move him, but there aren't any to hold on to. This is a great feeling! Reese- you were right, it is great on the outside.
The home infusion nurse just left about 1/2 hour ago & Jordan is finished with all of his meds for the day. He has to have 4 oral meds twice a day: Zantac for his tummy, amlodapine for his blood pressure, sodium bicarbonate because he is low on sodium, & calcium because he is on lactose free formula. He does so well with these meds. Even though I know they taste awful, he takes them without too much fuss. In the morning, he has to have his steroid and cyclosporine by IV. These are to prevent Graf Vs. Host disease. Then at night he gets both of those again plus his GCSF, which helps him grow cells. I didn't have any problems learning how to do his pumps & meds. I am lucky that he did so well and doesn't have very many meds. Since he kept eating so well, he didn't need the TPN which makes all the IV stuff such a pain.
The home infusion nurse will be back at around 8:30 in the morning to watch me give Jordan all his IV meds again to make sure I have no questions, then I am on my own. We have to draw labs & go to clinic to get his blood pressure checked and to see the doctor. We will be going to clinic every day (including Sunday) for a few weeks. I am not looking forward to Tuesdays (that's our long day), but the rest of the days shouldn't be too bad. Patrick and I have already done the clinic thing, so we're already pros. ha, ha.
When we left the hospital today, everyone on the unit came out into the hall to send us off. It was so great. I think that the only people who didn't come out to send us off were Sean & Jacob. Sharon, Jacob's mom, held open his door so he could see us because Jacob felt too weak to get out of bed & into the hall. Mckenzie did come out "to see baby" as she always says, and we were happy to see that beautiful child. We are going to miss everyone on the unit, but we will go back to visit all the wonderful nurses and will see the kids in clinic!
Well, I am updating the pictures with ones from us leaving today, so check them out. Talk to you all later. Take Care.
Love,
Carrie

Wednesday, January 08, 2003 at 12:51 PM (CST)

Day +26
WBC at 6.3 today! Way to go Jordan. His rash is looking really good, and the doctors said that as long as nothing shows up bad in his labs tonight, he is going home tomorrow. They don't anticipate any problems. He is in such a good mood today. He is so happy about going home. He has been smiling and laughing all morning. Dr. Driscole & Dr. Burke came in just a few minutes ago & he smiled for everyone except for Dr. Driscole. Every time he would lean down to get Jordan to smile, he would quit. Then I told Dr. D. to stick out his tounge at Jordan and he would do it back. I didn't think that the Dr. would do it, but he did and Jordan stuck out his tounge happily. All the doctors had a good laugh about that one. The lab culture that they drew on Tuesday has not grown any bacteria, so the doctors are fairly certain that the first lab was contaminated. That is great news. Thank God for answered prayers. God is really good! I hear that Mckenzie (going through her 3rd transplant) is getting a little bit of a rash. Pray that this is engraftment rash and that she will get better. You can visit her website at www.caringbridge.org/nc/mckenziefay Jacob is feeling yucky today and has had a headache. We hope that Jacob is feeling better too. Man am I going to miss a lot of people up here when we leave tomorrow, but I am so glad to be going home. We are one step closer to seeing you all again! I love and miss you all! Check out the new picture of Jordan giving us a smile in the photo gallery!
Love,
Carrie

Tuesday, January 07, 2003 at 03:07 PM (CST)

Day +25
WBC= 4.0 Man is he cooking! Jordan is doing awesome! His rash looks much better today. We keep putting on those creams (which Jordan hates), and they are doing their job. Sorry about the mix up last night. Patrick and I both updated the page, so there are two entries. His are always so much more light hearted than mine are. It is easier for him because he isn't here at night. That is when being here is hard. Anyway, I will try to be "less serious" in my entries. I've been told that I give too much technical information.
Jordan has been laying in his crib and in Gram Horton's lap all day laughing and talking. He is such a happy baby. Dr. Driscole was even trying to get him to laugh today. It was great to see this "macho" doctor make baby noises and faces at my little guy. Jordan thought it was funny too, but he refused to give Dr. Driscole a smile. He just looked at him like he was crazy. :)
Dr. Burke came in with Dr. Driscole today, and they said everything looks great and we're still shooting for Thursday. Then Dr. Burke came in a little later and said that Jordan's blood culture was growing some bacteria. This was bad news. We were worried, but the doctors think it is a false positive because he has no signs of an infection. Jordan is happy, has no fever, and is not acting as if he is feeling "yucky" at all. They went ahead and drew another culture from each of his lines and they will test these today and tomorrow. If nothing grows, we are in the clear. If it does, they will put him back on an antibiotic. Hopefully they are clear. The doctors think that someone contaminated the culture by touching it because it is a staff bacteria (found on everyone's skin). The cultures were drawn from his lines, so it is unlikely a true positive. Let's pray! Either way, I don't think it will affect our discharge date. Let's hope not. We are really excited about leaving.
Oh, by the way, WAND is going to do a brief follow up on Jordan's condition on the 5:00 news tonight. If anyone back home is interested. Patrick is going out with Robert tonight, so Connie and I are hanging out at the hospital with Jordan, while Mike cleans the apartment. He is germaphobic for Jordan. He is sanatizing everything. We will be able to eat off any surface in the house when we get back. :)
In 5 days we will be able to be tested for engraftment. This is when they test Jordan's blood to see if it is his own, or donor cells. If it shows female, we will rejoice! The doctors are fairly certain that he is engrafting, but this test will prove it. Then, Patrick will have two people in the house with PMS. ha, ha. Just kidding Patrick! Well, I better get back to my son. Talk to you all later. Take Care!
Love,
Carrie

Monday, January 06, 2003 at 11:59 PM (CST)

I know Carrie has been updating the web site lately. Of course there have been requests for me to write something. Some people are telling me that they really enjoy it when I update the website. For those of you I would like to say get help now(haha). Well I can't remember what Jordan's counts were today, but they were great. I do remember that much. Robert came by the hospital for lunch, and did not like the pizza at the Domino's in the cafeteria. Sorry Robert. Then Robert and I went to play pool for a while so Mom and Dad could spend time with Carrie and the baby. Then I went back up to the hospital and went in Jacobs room to harass him. His best buddy was there. A best buddy is a volunteer that the hospital assigns patients to spend time with them. They were playing tiger woods golf. I loaned Jacob that game for a few days. His best buddy thinks he is good at tiger woods, but I think I can have Jacob whipping his Hiney(is that how you spell hiney? I like that word!)in a few days. Anyway Jacobs mom came back so I went back to our room and Carrie and I watched Spiderman. Man I liked that movie. Then I came home. Jordan was happy all day. That kid has a smile that will change your life. Anyone who hasn't seen it has missed out. Oh by the way I am taking a survey. Look at the last picture in the picture gallery. Do you think he looks like mini me in that picture? I sure do, but Carrie doesn't. Seriously let me know because I don't think I am crazy. I just think my family is trying to make me think that I am. Hiney.
Patrick :)

Monday, January 06, 2003 at 11:41 PM (CST)

Day +24

Sorry I am not updating this page until now, but it has been a busy day. Jordan's WBC count is at 3.0 with an ANC of 2430! He is just doing so well. This is something that everyone on the floor needs to see right now. With all the heartbreaks lately, it is nice to know that someone is doing well. Rashaun, another boy on the unit, is also doing great. His WBC is at 4.4 and ANC at 3344 today. He is also going home on Thursday. It will be a happy day up here.
I finally met the Coopers from New York today. Their son Jackson is the same age as Jordan and has Hunters. They lost a 13 year old son to Hunters a few years ago & got Jackson tested after he was born. He is going to be admitted (hopefully) on Jan. 21st. Like Jordan, he has no symptoms yet, so his parents, Joel & Kendra (great people by the way) are so encouraged by Jordan's progress. They came to tour the unit today, and we put a mask on Jordan so that he could meet them. It was so funny though because Jackson is twice Jordan's size. We love to see those nice healthy babies! Please pray that Jackson does just as well as Jordan did. Joel & Kendra- just remember that attitude is everything. Stay positive!
We had a parent/caregiver meeting today to let everyone on the floor voice concerns and talk about all that has happened up here lately. It really helped everyone to talk about their fears and concerns. I think everyone felt much better after the meeting. We all kind of encouraged each other to stay strong.
Patrick and I had a relaxing evening. We watched Spiderman and layed around the room, which was nice. Jordan ate about 6 ozs. of formula during the movie. Needless to say, his appetite is back. Yesterday I was a little worried because he only ate about 14 1/2 ozs., but today he was right back up to 21. WHEW! No TPN for us! Well, we will be discharged on Thursday unless something crazy happens. The doctors are switching his cyclosporine from an all day drip to twice a day bolosts tomorrow. This will allow us to have him unhooked from all his lines by Thursday. You have no idea how wonderful it will be to be able to love on my son without getting tangled in hoses. Thank God for small things.
Well, I better get to bed and get some beauty rest. Talk to you all soon. Continue to pray for all the kids on the unit, especially Mckenzie & Sean. God Bless!
Love,
Carrie

Sunday, January 05, 2003 at 05:44 PM (CST)

DAY +23

We are at 2.5 WBC today and looking good. The doctors are still talking about letting us go back to the apartment on Thursday. Pray that everything goes well, and we are able to leave this unit. I just can't take any more up here. Today at about 2:00pm, Keshon passed away. You can visit his website at www.caringbridge.org/sc/keshon I know his family would appreciate any comforting words that you could offer. I feel so drained right now. I am so glad that Jordan is doing well, or I would be hopeless. The feeling on the unit is one of such sadness. There has been too much death up here lately. I say a special prayer for all the kids that we've lost since i've been here: Kyle, Brittney, Ryan, & Keshon. You are all in a better place and no longer in pain. We will miss you all!
On a happier note, Reese & his mom & aunt came to visit today, and he is looking great. He is even starting to eat. Keep it up buddy! Toni & Shawn- it was great to see you guys. We will see you in clinic really soon! We also saw Isaiha yesterday. He was out playing with his remote controlled car. I'm glad to see him doing so well too. When so many kids aren't doing well, it's hard to remember that there are success stories (my son being one of them).
I still need you all to pray for Mckenzie and Sean. They are on their 2nd & 3rd transplants. Pray they engraft. I also have one more person to add to your list -Mitch. He is still in the PICU (Pediatric Intensive Care Unit). We want him back at 5200. Anyway, I better go take care of my little cue ball. I love and miss you all. Take Care.
Love,
Carrie

P.S. Hey Jacob, start growing some of those female cells ok!

Saturday, January 04, 2003 at 12:30 PM (CST)

Day +22
WE ARE OFFICIALLY ENGRAFTED! YEAH! His WBC is 1.8 and his ANC is 1548. He is just amazing me. The doctors haven't come by today yet to let us know a date for sure, but we will probablly be back at the apartment before the end of next week. We are so excited! After the events of the past few weeks up here, I can't wait to leave. I have been surrounded by too much death and illness. I want everyone to pray for Sean, & Mckenzie. They are two kids on the unit who are not doing as well as we'd like. Sean is 11 and going through his second transplant and Mckenzie is 3 and going through her third. Their first transplants did not take. If these transplants are not successful, these children will too soon join the other angels from the unit. I can't bear to watch another family suffer. These kids are so precious, and a part of me dies with each one of them. I also ask that you pray for the families of Keshon, who went to the PICU late last night, and Ryan, who became an angel last night. These families need your prayers.
It is hard to be up here with such a healthy child because I feel almost guilty that Jordan is doing so well. I am so thankful that God has chosen to make his road a little smoother than some of the others up here. I feel heartbroken for so many of the families.
ok, enough sad stuff. I have some really great pictures for you guys. We shaved Jordan's head last night. I know, everyone loves that precious red hair, but it was falling out in the back anyway. Also, the engraftment rash is on his head, and it was impossible to rub the creams on his head with all that hair. It just made him look like a matted mess. I must say, even bald he is the best looking kid I've ever seen. He just looks a little more like his paw paw Dale now. Sorry dad! :) Check out the pictures, and continue with the prayers. We love and miss you all.
Love,
Carrie

Friday, January 03, 2003 at 05:19 PM (CST)

I'm adding something to the journal tonight because I want everyone to pray for the family of Ryan Kishbaugh. He was an 18 year old boy up here on the unit who lost his battle and became an angel tonight. You can visit his website and offer words of comfort to his family at www.caringbridge.org/nc/ryan
I wish there were some more good news from up here on the unit, but another one of our kids is in trouble. Another child, Keshon crashed tonight and he is in the PICU as I write. Please say an extra prayer for these families tonight!
I can't wait to get out of here. All of these kids doing so poorly is so hard to watch. It is so hard to see these families go through the same thing as I am and lose their children. It is almost as if we've become one family. When one child is doing poorly or dies, we all grieve for the loss. Pray for these families to have strength to get through this.

Day +21
(somehow I got off on the days here, but he really is at 21 now)

WOW is all I can say about my precious son. His white Blood Cell count is at 1.3 today and his ANC is 845. One more day above 500 & he will be considered engrafted! That will be just one more hurdle that we have jumped. The doctors are talking about him going home on Thursday or Friday of next week. We are so happy. He has just been doing so well. Then, we will be in clinic every day for a few weeks. Then we will taper off to 3-4 times a week until we go back to Illinois.
Jordan still has a very weakened immune system & we will have to limit visitors for really the first year. Until Jordan's counts are really high, we are not going to allow any children to see him. This may be for the next 6 months. I know that sounds bad, but we all know that children are exposed to the most germs. We just can't take that risk. Also, anyone who gets a live immunization can be harmful to Jordan, so they won't be able to visit either. After we get back to illinois, we should be able to take him out in public a little more, and after the first year, he will be able to go out like normal again. The doctors said that depending on his WBC counts in April & May, we may be able to take him to graduation, but they can't promise us anything at this point. We just have to be really careful not to expose him to any germs. Even a small cold could really set him back & put him in the hospital. It is hard to believe that little things that don't bother us can be life threatening to him. There is so much to think about; I don't want to be overprotective, but we can't be too careful with his compromised immune system. Please pray that he remains healthy while he is outpatient so that we do not have to come back to 5200. As much as I love everyone up here, the next visit I make to this floor will be just that, a visit. Well, I better go because baby boy is sleeping and no one knows for how long. Talk to you later. Take care!
Love,
Carrie

Thursday, January 02, 2003 at 02:45 PM (CST)

Day +20
God is good! Jordan's WBC count is at 1.0 today with an ANC of 550. The ANC has to stay above 500 for three days and they will discharge him. I think we are going (Durham) home next week. We haven't been given an exact date yet, but the infusion nurse came to visit today. Infusion is who helps us with all of Jordan's IV medications when he goes back to the apartment. They came in and taught me how to use the pump for Jordan's Cyclosporine & GCSF. Forunately he will not have to be on a continuous pump for anything when he goes home because his Heprin will be finished, and he never had to take the TPN. I know, it's a lot of abreviations. How do you think I feel. I have to remember all this stuff! Anyway, he will be on very few meds., which will make it much easier on me. I have also been practicing blood draws, cap changes, & dressing changes and I feel comfortable doing all that stuff for when we go home. The only thing we have to watch right now is his blood pressure & rash. Since his counts jumped last night, his rash got a little worse. The creams are helping to keep it under control, but the doctor increased the frequency of application today. He wants us to use the creams 4 times a day so that we can get rid of the rash. Jordan hates putting on the creams, but he doesn't fuss too much. He is getting his blood pressure medication twice a day now, and they will check it every day in clinic when we are outpatient.
Reese went home today, and I am really going to miss Shawn & Toni. They have been so awesome the whole time we have been here, and I will miss chatting with them both. I will be seeing them in clinic (God willing) next week. I also miss some of the other families that have gone home since we have been here. We are becoming the veterans on the floor, but having Scott, Sharon, & Jacob next door make it easier up here. They are the coolest people. Jacob is 9 and has a rare form of Lukemia. You can check out his website at www.caringbridge.org/va/jacob I'm sure they would appreciate any words of encouragement you can give them. Also, Brittney's (the little girl who passed away on Monday) mother Chris is having a really difficult time. If you could all go to her website and offer some words of comfort, that would be great. www.caringbridge.org/nc/brittney
Well, I better be going, but I want to thank everyone for the love, support, prayers, and encouragement you have given us. It means so much! We will never be able to express how much in words. Just know that you are helping us through this difficult time, and we appreciate it. Take care & God bless.
Love,
Carrie

Wednesday, January 01, 2003 at 01:10 PM (CST)

Day +20

Happy New Year to me
Happy New Year to me
MY White Blood Count's 0.7
I'm as happy as can be!

This is Jordan's song that he is singing for the new year. His WBC is up to 0.7 with an ANC of 301. We are slowly moving toward discharge. The doctors think Jordan is still doing great. He is keeping down all of his formula today, so that is great. I hope you all had a wonderful new year and don't have too much "recovering" to do. Connie & Mike stayed with Jordan for a while last night so that Patrick and I could ring in the new year together. It was nice getting away for a few hours, but I missed my boy. His new year is off to a wonderful start! Keep praying that he continues doing this well. Also, we want to wish Chaplain Ann Haywood good luck with her new job in Boston! We are going to miss her so much. She came to the apartment and baptized Jordan when he was born and has visited us at the hospital several times. She will be greatly missed, but I'm so glad she is getting the chance at her dream job in Boston. We love you Ann! I hope you are all enjoying the new year. I know that we are. We love and miss you all. Take Care!
Love,
Carrie

Wednesday, January 01, 2003 at 08:55 AM (CST)

I know it is a little early to update the website today, but I'm kinda bored. I hope everyone had a great new year. It was raining cats and dogs last night, and mom and dad came over to the hospital so Carrie and I could go do something for New Years. We picked up my cousin JT and went to a bar in raleigh called Katies. It is a very nice place with pool, darts, ping pong, Xbox, and 2 virtual golf machines where you use real clubs and a real ball. This place is kind of out of the way, and it has only been open for 6 weeks, so it was very quiet there. I have gotten to know the owner, and he is a real nice guy. This is starting to sound like an advertisement. Anyway Carrie drove, so they gave her free coke all night. We were planning to be back by a little after midnight, but JT and I went head to head on the XBOX and we were having so much fun I looked at my watch and it was 2am. Needless to say mom and dad are still in bed(light-weights).I bet they were 4 am or later getting to bed. I was glad Carrie got a chance to go out. I worry about her going stir crazy up there sometimes. If you have never been there you could not imagine it.

Anyway to the important stuff. Jordan's white blood count is at .7. That is great we could not be more proud of him. We haven't gotten what we need yet to check his ANC, which is what needs to be at a certain level before he is discharged. I will let you know tomorrow, or later today. Anyway I hope everyone made it home ok last night, and as I'm sure everyone thought of me when the packers lost sunday, I will say that yes I was rather dismayed, and Monday was pretty rough, but I am feeling a little better today. But the one thing I am very thankful for is that I'm not a Rams, Bears, or Panthers fan for that matter. That was for Les, Les, Kenny, Butch, and well all Panther fans.


Happy New year
Patrick

Tuesday, December 31, 2002 at 04:15 PM (CST)

Day+19

Jordan is still hanging on to the 0.5 WBC count. This is good. He is staying steady. We are hopeing that it will go up for new years, but slow and steady is fine with us. We are now giving him blood pressure medication 2 times a day instead of once. It just keeps jumping up too high, and the doctors don't want that to happen. It is a normal reaction to the cyclosporin, but it is still a little nerve racking. Jordan is doing well right now, but earlier today he was sick. He kept vomitting every time he would eat. I asked the doctor about it today. The doctor said, "It's about time he had some side effect from the chemo." This is a very minor side effect and is why most of the kids have to be on supplemental nutrition. Jordan is still eating and keeping enough down to keep his nutrition ok, so they will just keep an eye on it. But, he is doing much better this evening. He kept down everything from his last feeding, which is good. WAND's Dawn Torchia called me today and did a phone interview. She also interviewed my mother on camera, and it is going to air at 6:00 tonight (Decatur time). My mom is going to try to record it for me, but will someone else back her up. She isn't exactly great when it comes to VCRs (I still love you Mom). Anyway, we are thankful for another day with no major problems. The doctor said this afternoon that it will more than likely be the end of next week or early the following week before Jordan is discharged because his counts just aren't high enough yet, and they don't want to risk any infections. I would much rather them keep him here until he is nice and strong than send him home too soon. Anyway, everyone take care and keep praying for our precious baby. GROW CELLS GROW!
Love,
Carrie

Monday, December 30, 2002 at 08:23 PM (CST)

DAY +18

Jordan is doing great today! He is still at 0.5, but his ANC level is at 260. This is good. Last Monday his ANC was 20. He is moving right along. His ANC has to be above 500 for three days in a row before he is discharged, but the doctors anticipate that to happen this week. He still has high blood pressure, but they keep managing it with medication.
The discharge nurse came by today and gave us some general notes on what to do when Jordan goes back to the apartment for the second stage of his treatment. During this time, he will have to wear a mask everywhere except for the apartment. He will have to go to the clinic everyday for the first few weeks, and then only a few days a week for three months. After that time, they will evaluate him and let us know if he is well enough to travel back to Illinois. We think that we will (God Willing) be back around April. You never can tell.
Things happen up here every day that make me so thankful that Jordan is doing so well. He is such an inspiration. Every day that he has little or no complications, I hug him tight and thank God that I have gotten one more day with him. Unfortunately some people on this unit haven't been that lucky. As a matter of fact, tonight one of the little girls on the unit became an angel. Brittney had Hurler's and was doing well, but she experienced some complications about a week after Jordan got to the unit. She finally lost her battle tonight. I ask that everyone say a prayer for Brittney's family. It is really hard for Christy (her mother) and everyone on the unit. When one child is hurt or passes up here, it is like our own families have suffered. Everyone here is so close, that it hurts us all. Make sure you all kiss and hug your children tonight and thank God that you have had another day to love them. I have learned an all too familiar lesson up here: There are no guarantees!
Take care and God bless you all!
Love,
Carrie

Sunday, December 29, 2002 at 09:00 PM (CST)

Day +17

We are at 0.5 WBC today! That is awesome. This is when the doctors start running a test to see what kind of cells he is actually making. We want him to produce segs & bans. By doing a simple math equation (thank God it's simple with my math skills) we can figure out Jordan's ANC number. This number has to be over 500 for 3 days in a row for them to discharge him. At the rate he is going, this shouldn't be a problem for him. Please pray that he continues to do so well.
Tonight he has had more high blood pressure. They gave him some medication and it came right back down. The doctors and nurses assure us that this is normal because of the steroids he is taking. These steroids make him retain water.
Today Maggie showed me how to draw blood, flush Jordan's central lines, & change the end caps. I did it all and actually it was pretty easy. It is just a little nerve racking because he is so small. I do however have the dressing change down. He usually sits still and lets Mommy do what she needs to do. What a good little boy I have. That little boy is spoiled by the way. Oh well, there are worse things than being spoiled.
Well, I have once again left Patrick & Jordan alone together in the room, so I better get back to them. Talk to you all soon. Thank you so much for your prayers for us and the children on the unit. They are working! GROW CELLS GROW!
Love,
Carrie

Saturday, December 28, 2002 at 06:54 PM (CST)

Day +16


Wow, what a great day. Jordan is still at 0.4, but is doing awesome. He had to get some blood pressure medication and platelets, but he is in a great mood. The last few days he has been so alert and smiling. He is flirting with all the nurses. He is really excited because he has his two favorite nurses again. Geneise is his nurse tonight, and Maggie is here tomorrow morning. These ladies make it so much easier being up here. We love you guys! Anyway, not much has changed for him, so I don't have a whole lot to write. Dr. K. says he is doing awesome. We may even set a record for being up here the shortest amount of time. I think the record is like 22 days post transplant. We're getting close! Talk to you all later. Take Care and God bless you all for your support. We love and miss you!
Love,
Carrie

P.S. Jacob: if you read this, kick ATG but tonight!

Friday, December 27, 2002 at 06:08 PM (CST)

Day +15

WE ARE AT 0.4! How awesome is that. Our boy is so strong and healthy. What a fighter we have. I asked Dr. K today when we would know if the cells are Jordan's or the donor's cells, and she said that he would not have a rash if he were growing his own cells! This was such great news for us to hear. She is confident that he is growing donor cells, which means he will be getting the enzyme. We still have a long road ahead, but at least we have passed another mile stone. Dr. K. also said that she can't promise anything, but if he continues to do as well as he has been and doesn't have any major problems or fever, we will be discharged from the hospital late next week or early the following week. Although this is wonderful news to us, it is really scary. In the next few days, I have to learn how to draw blood and flush his central lines. I also have to learn all his meds. and doses and how to give it to him. They will have a home health nurse come in and help us at first, but eventually Patrick and I have to do all this on our own. It is kind of nerve racking! Well, Patrick and I are about to go out with his cousin for the evening and Gram & Papa Horton are babysitting for a few hours. It's nice to feel like an adult. I will update you all again soon. Again, thanks for all the prayers because they are working! Keep up the good work. Also, pray for all the kids on 5200 & the PICU because not all the families have been as fortunate as we are! Thanks to Susie, Larry, & Kyle Murray for the awesome outfits. Jordan will look great in them. Talk to you all later.
Love,
Carrie

Wednesday, December 25, 2002 at 04:16 PM (CST)

DAY +12

Merry Christmas to me
Merry Christmas to me
Merry Christmas from Jordan
My cell count is 0.3!

Thank you all so much for the prayers. Dr. Kurtzberg said that Jordan is engrafting! The 0.3 White blood cell count tells us that things are moving right along. Now we just have to wait to see if he is growing the new donor cells or his own. We won't know this for sure for another week or so, but everything looks great so far! We are so excited for our little man. We have had a wonderful Christmas. I miss all the get together's at home, but being away from home will be worth it when Jordan is better. Next year we will be able to make all those holiday parties with a very healthy little boy. Patrick and I appreciate all the beautiful Christmas cards that we have gotten from everyone back home. Thank you to Alicia & Tommy for the great toy. Jordan will certainly use it. Patrick & I are sorry we missed you guys today. Also, thanks to Dr. K. for Jordan's chicken. It is so cute. Also, the Duke life flight team stopped by and gave Jordan a toy helicopter today. We also got a huge bag of gifts from the Macedonia Baptist church. That was so thoughtful. Thanks guys! He has gotten so many wonderful gifts. We thank everyone for being so generous. The best gift though is his cell count. We are one step closer to coming home with this precious angel. We hope everyone has a very Merry Christmas. We love and miss you all!
Love,
Carrie

Tuesday, December 24, 2002 at 09:57 PM (CST)

Day +11
Merry Christmas Eve! This has been such a wonderful holiday. Even though we have to be here going through such a difficult thing, we are so thankful for everything we have. I've realized that so many things that were important before are so trivial. The best gift I could ever receive is holding this baby boy in my arms. I am amazed by him every day. Despite his fever, rash, & aching bones, his face lit up when he saw Santa today. Check out the pictures! It was priceless. He is doing great. I want to send special greetings to all of my family at my grandmother's house tonight. I sure did miss the prime rib and watching the kids open gifts. Next year we will be able to see Jordan tearing into the presents. I love and miss you guys!
I will keep this short because I want to get back to Jordan & Patrick, but everyone keep the prayers coming, we want a .2 or .3 cell count for Christmas! We love and miss you all. Happy Holidays!
Love,
Carrie

Monday, December 23, 2002 at 08:36 PM (CST)

DAY +10
We have rash, we have fever, we have .2 White Blood Cell counts, and we have very happy parents. The rash and fever are a sign of engraftment! We still have a long road ahead, but this is so hopeful. The doctors told us not to get excited until Jordan's counts reached .2, so now we are excited. The doctors went ahead and cultered his blood and started him on some antibiotics when he got the rash and fever. They do this any time a child gets a fever. There is a 99% chance he is growing cells, and a 1% chance that he has an infection, so they went ahead and started the antibiotics as a preventative medication. Jordan is a little uncomfortable from the rash and fever, so they are giving him some medication for pain. He is sleeping a lot because of the medication, but it is kind of nice to get a break.
Today I got to go and pick out some presents from those donated to the unit for Christmas. I wrapped them and santa is going to bring them to Jordan tomorrow afternoon. I am going to try to get a picture of Jordan with Santa. Also, a really great family visited the unit today and gave us all a lot of inspiration. Jasmine was transplanted 3 years ago and is doing awesome. She was on the unit for almost a year with complications. Her mother said that if they can get through that, we should never loose hope, even if something doesn't go right with Jordan's treatment.
We also got a new neighbor today. These people are so sweet. Their son Jacob is 9 and has lukemia. He is going to be transplanted on New Year's Eve. Everyone say a special prayer for him.
Well, I must go for now, but keep those prayers coming because they are working. What an awesome Christmas gift: my baby is growing cells! GROW GROW GROW!
Love,
Carrie

Sunday, December 22, 2002 at 07:38 PM (CST)

DAY +9
Sorry that Patrick didn't give much information in yesterday's update, but there really isn't much to tell. It is hurry up and wait around this place. I think this is the worst part of the entire process. We are holding our breath everyday when we get his blood tests to see if any cells have grown (even though they really shouldn't start until around christmas). That's what we are hopeing for at this point. If he shows some sign of cell growth on Christmas, that will be the greatest christmas gift. Yesterday was a great day for us because we got to have our two favorite nurses. Maggi (there's a picture of her on the photo page) in the morning and Geneise (not Janice as Patrick spelled it a few days ago) in the evening. Haveing nurses like them make the days go by a lot quicker. Jordan is doing awesome. He still doesn't have any noticable side effects. Every day that he does well, we are thankful. There are so many kids up here who aren't doing well, that I almost feel guilty talking about how well Jordan is doing. I guess that is why i'm so thankful each day that he does well. Dr. K. has reminded us that he could still have some problems from the chemo. develop within the next couple weeks. If nothing happens by then, more than likely, nothing will. Keep those prayers coming. Every day that this boy amazes us with his strength is a day closer to him coming home and being a healthy football player :).
Well, Tommy Bennet left today. He gave me the best gift right before they left. We were in the family lounge and I was sitting on the couch. Tommy took a running leap at me, wrapped his arms around me, and gave me the biggest hug. It was great. He made my day. Alicia, I am going to miss you guys! The good side to the Bennets leaving is that Brittany & Christy are coming back to 5200. Brittany is the little girl that was transferred to the Pediatric Intensive Care Unit a few weeks ago. Your prayers worked because she is coming back here to be with us again. Welcome back guys!
Well, I better get back to the room because Patrick is alone with Jordan. I don't dare leave him for long because Patrick is afraid he will do something wrong (although he does a great job of taking care of Jordan). I do have to say he doesn't like diapers though. Friday, Jordan pooped (for lack of a better word) all over, including on Patrick's pants. I laughed so hard I cried. I guess i shouldn't have laughed so hard because Jordan did the same thing to me today. Oh the joys of parenting!:)
Love,
Carrie

Saturday, December 21, 2002 at 03:50 PM (CST)

Carrie got creative today. She decided to take some holiday pictures to show off our beautiful boy. Everything is going great. So I will keep it short. LOOK AT THE NEW PICTURES.
Patrick

Friday, December 20, 2002 at 07:14 PM (CST)

Day +7

Hello all-
I did get a little more sleep last night. Actually, Jordan has been sleeping most of the day. Dr. Kurtzberg says it is really exhausting making new cells. She told us that it would not be uncommon for us to start seeing his counts come up in the next few days. Let's just pray for engraftment on Christmas. He is doing well today, but again this afternoon he was in pain and needed some medication. He was given fentanyl for bone pain. Although it is hard to see him in pain, in this case pain is good. It more than likely means that something is happening even though we can't see anything yet. All the rest of his levels look good except for his potassium. This level has been running high the last few days. Since high levels can cause irregular heart rythms, they treated him with some meds today. I won't know if this has helped until later on this evening. My mom went home this morning, and we both cried. It is hard being away from family during the holidays, but I do have Patrick and his family here. His sister Kris got here today and has been hanging out with me at the hospital this evening. She brought me and Patrick the best present for christmas. She took pictures of our two greyhounds & our cat and framed them for us. They are wonderful, but it made us miss our animals. We got some other great gifts today too. His other favorite nurse, Maggie Petterson gave Jordan a dragonfly bib and a photo album. We love the gifts. Also, one of my dance team girls back home, Ashley, and her family sent us a care package that included some christmas stuff and pictures of my dance girls. Thanks guys! This meant so much! Also, my sister sent some great stuff for me and Patrick for Christmas. Thanks Cherie! I love the talking picture frame best! My other sister Angie sent us a wonderful picture and christmas card today. Thanks Ang! Heather and Shad Mallady -- Thanks for the Packer gear. Jordan will look great watching the games in those outfits! We have also gotten numerous cards and letters, and we appreciate all the gifts. Thank you all so much. You have made it a little easier to be away from home for the holidays. Well, I better go for now so that Kris and I can take Jordan for a little walk. He took a long walk earlier when they changed his lines. I love it when they disconect him from everything and we can love on him without worrying about screwing anything up. Anyway, I will talk to you all later. Take Care. Oh, I hope all the finals at St. T. went well. God Bless!
Love,
Carrie

Thursday, December 19, 2002 at 12:09 PM (CST)

Day +6
Hello all-
How is everyone? I hope you all got a little more sleep than me last night. Jordan is doing well, but last night was in some pain. He just wouldn't sleep. He didn't go to sleep until 4:30 this morning so neither did I. He would fall asleep for about 10 minutes and then wake up screaming. The doctors said that it is normal for him to have some pain around this time, but it is so hard to watch him hurting. They have ordered pain medication for him on an as needed basis, and they are hopeful that this will allow him to rest a little more peacefully. I sure hope it works. Other than that, Jordan is doing awesome. His counts look wonderful. His White blood cells are still at less than .1, but this is to be expected until engraftment. His platelets dropped to 19 today, so they gave him another transfusion this morning. He is doing so well despite everything. He amazes me with his strength everyday. He is such a little fighter. Patrick and I want to thank everyone for all the christmas cards and letters that have been sent to us. Diane Keller and the faculty at St. T. sent us a great card & money, which is really appreciated. We also got the most adorable card from my sister, her husband, & Sheridan. Thanks so much. I also wanted to thank Jennifer & Jerri smith for the baby Gund snowman. I don't have your address to send a thank you, but the gift was so thoughtful! Well, Patrick just came in and said that Jordan is kind of fussy, so I better get back to the room and console both of them. :) i will update you all again soon.
Love,
Carrie

Thursday, December 19, 2002 at 12:09 PM (CST)

Day +6
Hello all-
How is everyone? I hope you all got a little more sleep than me last night. Jordan is doing well, but last night was in some pain. He just wouldn't sleep. He didn't go to sleep until 4:30 this morning so neither did I. He would fall asleep for about 10 minutes and then wake up screaming. The doctors said that it is normal for him to have some pain around this time, but it is so hard to watch him hurting. They have ordered pain medication for him on an as needed basis, and they are hopeful that this will allow him to rest a little more peacefully. I sure hope it works. Other than that, Jordan is doing awesome. His counts look wonderful. His White blood cells are still at less than .1, but this is to be expected until engraftment. His platelets dropped to 19 today, so they gave him another transfusion this morning. He is doing so well despite everything. He amazes me with his strength everyday. He is such a little fighter. Patrick and I want to thank everyone for all the christmas cards and letters that have been sent to us. Diane Keller and the faculty at St. T. sent us a great card & money, which is really appreciated. We also got the most adorable card from my sister, her husband, & Sheridan. Thanks so much. I also wanted to thank Jennifer & Jerri smith for the baby Gund snowman. I don't have your address to send a thank you, but the gift was so thoughtful! Well, Patrick just came in and said that Jordan is kind of fussy, so I better get back to the room and console both of them. :) i will update you all again soon.
Love,
Carrie

Wednesday, December 18, 2002 at 12:09 AM (CST)

Transplant day +5
Well Jordan slept most of the day. Nothing interesting going on which is GREAT. Carrie's mom came up and babysitted this evening. Carrie and I went out for a big night on the town. The only problem is that the only places down here I know about are pool halls. So we sat around and watched people playing in the pool leauge. I think Carrie was just glad to get away. time can just run together up there. There is a nurse named Janice Horton. I think that she is Jordans favorite person in the world. Her and her husband don't have any kids of their own, and she loves Jordan to death. This is not unusual, because so does everyone else. But the kicker is that when she is near him he lights up like a candle. Carrie and I also think a lot of her. She comes in to see him as much as she can, and the funny thing is that she isn't even his nurse this week. Ann, the minister who babtized Jordan came by the room again today. She stuck around to hold Jordan. We did a lot of chatting with her today. We knew she was a wonderful person, but I don't think Carrie or I realized how cool she is. I think she is relatively close to our age. She came in friday and told us she is taking a position at a hospital in Boston. Their gain is our loss. Nobody can believe how fast Jordan is growing. He will definately play football. Carrie and I are getting along great. Our only fights are over me trying not to let her watch Will and Grace in the room with Jordan. I just don't want him exposed to how gay that show is. Heck I don't want me exposed to it. So of couse I think out of spite that is her favorite show now. I guess if that is the worst of our problems we will be OK. Oh and by the way i think toys for Patrick is a great idea.
Patrick

Wednesday, December 18, 2002 at 12:09 AM (CST)

Transplant day +5
Well Jordan slept most of the day. Nothing interesting going on which is GREAT. Carrie's mom came up and babysitted this evening. Carrie and I went out for a big night on the town. The only problem is that the only places down here I know about are pool halls. So we sat around and watched people playing in the pool leauge. I think Carrie was just glad to get away. time can just run together up there. There is a nurse named Janice Horton. I think that she is Jordans favorite person in the world. Her and her husband don't have any kids of their own, and she loves Jordan to death. This is not unusual, because so does everyone else. But the kicker is that when she is near him he lights up like a candle. Carrie and I also think a lot of her. She comes in to see him as much as she can, and the funny thing is that she isn't even his nurse this week. Ann, the minister who babtized Jordan came by the room again today. She stuck around to hold Jordan. We did a lot of chatting with her today. We knew she was a wonderful person, but I don't think Carrie or I realized how cool she is. I think she is relatively close to our age. She came in friday and told us she is taking a position at a hospital in Boston. Their gain is our loss. Nobody can believe how fast Jordan is growing. He will definately play football. Carrie and I are getting along great. Our only fights are over me trying not to let her watch Will and Grace in the room with Jordan. I just don't want him exposed to how gay that show is. Heck I don't want me exposed to it. So of couse I think out of spite that is her favorite show now. I guess if that is the worst of our problems we will be OK. Oh and by the way i think toys for Patrick is a great idea.
Patrick

Wednesday, December 18, 2002 at 12:09 AM (CST)

Transplant day +5
Well Jordan slept most of the day. Nothing interesting going on which is GREAT. Carrie's mom came up and babysitted this evening. Carrie and I went out for a big night on the town. The only problem is that the only places down here I know about are pool halls. So we sat around and watched people playing in the pool leauge. I think Carrie was just glad to get away. time can just run together up there. There is a nurse named Janice Horton. I think that she is Jordans favorite person in the world. Her and her husband don't have any kids of their own, and she loves Jordan to death. This is not unusual, because so does everyone else. But the kicker is that when she is near him he lights up like a candle. Carrie and I also think a lot of her. She comes in to see him as much as she can, and the funny thing is that she isn't even his nurse this week. Ann, the minister who babtized Jordan came by the room again today. She stuck around to hold Jordan. We did a lot of chatting with her today. We knew she was a wonderful person, but I don't think Carrie or I realized how cool she is. I think she is relatively close to our age. She came in friday and told us she is taking a position at a hospital in Boston. Their gain is our loss. Nobody can believe how fast Jordan is growing. He will definately play football. Carrie and I are getting along great. Our only fights are over me trying not to let her watch Will and Grace in the room with Jordan. I just don't want him exposed to how gay that show is. Heck I don't want me exposed to it. So of couse I think out of spite that is her favorite show now. I guess if that is the worst of our problems we will be OK.
Patrick

Tuesday, December 17, 2002 at 08:49 AM (CST)

Transplant day +4
Jordan is doing great. He is still eating, which is surprising. He has some hives from the chemo which is kind of a delayed reaction. That is not abnormal. Anytime we might start seeing things like sores in his mouth, or him to stop eating. None of these things are bad. They are expected side effects. Last night he seemed kind of uncomfortable. They gave him some benadryl. He calmed down and slept. I talked to Carrie this morning, and she said he slept most of the night. He is really doing better than expected. Of course we are very happy about this, but I will say again how nervous it makes me when things go this well. People keep coming by and giving us presents. For the baby of course. You know I want to start a program like toys for tots, but more like toys for parents. I see all these kids with RC cars and stuff, and I want to steal them. I don't of course because I think you might go to hell for stealing toys from sick kids. If anyone knows different please call me. I heard 60 minutes II is coming to follow around one of the kids there. People who know me know I will be hiding out as much as possible. People keep asking what we want for christmas. Jordan has everything he needs. Carrie and I are just happy to have the family together and healthy for Christmas. Although it is impossible to find an University of Illinois T-shirt, or a Cardinals T-shirt, so if anyone back home really wants to get me and Carrie something that would be a good idea. But we have Jordan, which is a better gift than we would have imagined. Anyway that is all for now. I will try to write tonight.
Patrick

Sunday, December 15, 2002 at 01:23 PM (CST)

Day +2

Hello all-
Jordan is doing GREAT! He is sleeping and eating very well and amazing everyone. He has lost about half a pound because he is not eating as much as he was before, but he is still eating enough to maintain his nutrition. They actually had to take him off the TPN (supplemental nutrition) because his potassium was too high with the TPN. This is good! It means that he is eating enough on his own. They did have to give him a platelet transfusion this morning because his counts were down to 14. They transfuse platelets anytime it dips under 20. Some children have to get platelets every day or even twice a day, so this is perfectly normal. His white blood cells have dropped to 0.1, and Dr. Martin said this is good. He will probably stay here until the cells start to engraft. He may drop to zero, but it is not likely. We just have to wait for those counts to start coming back up. Jordan did get a few hives yesterday and still has some today on his left leg only. Dr. Martin said that this is probably a delayed reaction to the chemo., but nothing to be concerned about. The doctors also put him on a very low dose of medicine for hypertension. Again, this is very normal for transplant patients. He may even be on medication for his blood pressure when he comes home. Dr. Martin assures us that he will be taken off of this medication as he is taken off the steroids & cyclosporine.
Jordan has had some really great visitors in the past few days. Santa Clause visited yesterday & Jordan got his picture taken with him. Santa gave him a book. Then, Toys for Tots brought Jordan a bear & some books. He loves looking at the pictures. The bright colors facinate him. Today, some people associated with NASCAR visited and brought Jordan a homemade blanket, a glow worm, an outfit, a musical & light ball, a photo album, a rattle, & two books. One of them was a mother goose book. I can't wait to read him all the nursery rhymes. He loves when Patrick & I read to him. He is just starting to smile, and smiles alot when we talk to him. He is getting so big so fast!
Right now, Gram & Papa Horton are watching Jordan up at the hospital so that Patrick & I can watch the Packers game with my Mom, Mike, & Beth. Go PACK! Well, it's about time for the game so I will go for now. More Later!
Love,
Carrie
GROW CELLS GROW!
P.S. for all of those people in T-Ville or close by, the Breeze Courier has a great article & some pictures of the transplant in today's paper. THANKS BETH!

Friday, December 13, 2002 at 04:27 PM (CST)

TRANSPLANT DAY! CHECK OUT THE TRANSPLANT PHOTOS!
Here is a poem that I wrote specifically for today

Jordan's Prayer
Dear God,
I'm just a wee little baby but have a big favor to ask.
I'm getting a transplant today and need it to engraft.
I need this transplant to help me on my way,
so I can get big and strong each and every day.
I know I'm a special boy; my parents told me so,
so if it's not too much to ask, let my new cells grow!

Hello all-
Today is a good day. We made it to Jordan's new birthday. I say this because if it works, it's the beginning of a whole new life. This one will be a life without endless doctors visits and illness. Pray this will be the truth.
Anyway, the transplant went well except for a few minor Friday the 13th glitches. The cord blood would not flow through the tube like normal. The nurse tried several times to get the blood to start flowing, but no luck. We had to call in Dr. Martin to help out with the process. He finally got the line out of what he called "vapor lock" and the new cells started flowing. It only took about 20 minutes, but it seemed a lot longer. We also had a problem with the monitoring system that was taking Jordan's blood pressure. It would not read. This was bad because a transplant can cause high blood pressure, and we couldn't monitor it with this equipment. Finally they got it working and everything went pretty smooth.
Jordan did have high blood pressure shortly after the transplant and was given a medicine for hypertension. Then his heart rate went up to 207, which really scared me, but it came down on its own without medication. The doctors assured us that this was a result of adding so much volume to his veins. His little body had a hard time processing all of that, but he is doing wonderful now. I guess something had to go wrong because everything else has been perfect so far. I'm kind of relieved to tell the truth. Maybe this will be the only glitch. Thank you all for your special prayers for Jordan today. I think they worked. Now we just have to pray that the cells GROW! By the way, Jordan was transplanted with a female donor, so a blood test will (if transplant engrafts) show he is a female, even though he will still be male. His blood will also change from 0 positive to A negative. It is crazy how all of this stuff works.
Now we just have to wait for Jordan's white blood counts to come back up, which is the first sign of engraftment. His counts are at 0.2 right now. The normal is 3.8-14. Jordan was at 10 when he came in. With any luck, Christmas day we will see signs of engraftment. Wouldn't that be the best Christmas gift ever. Well, I better get back to my baby. He is resting with G-ma Sheila right now. Keep the prayers coming.
GROW CELLS GROW!
Love,
Carrie

Thursday, December 12, 2002 at 10:31 PM (CST)

Okay once again there is nothing exciting to tell about today. That is very very good. No fever, but a couple of hives which are no problem. He should be finishing his last dose of chemo in an hour or so. Tomorrow is the big day I guess. Everyone keeps asking me if I am excited, but I am trying to reserve my excitement for when we know the new cells are taking over. Believe it or not, that may be around christmas. His transplant will be aroun 11:00 am tomorrow. It will be very simple. He will have the cord blood hooked up to his central line, and it will be a simple blood transfusion basically. It will last about 15 minutes. I am sure we will have lots of pictures of it, and as soon as I can I will post them tomorrow. I sure hope this works.
Patrick

Thursday, December 12, 2002 at 01:00 AM (CST)

Today went well. Carrie did not get any sleep last night due to Jordan not feeling well, so today the grandmas went up to give Carrie a break, and she came home and slept. The Chemo had finished for the day right before I left at about 1:30 am. No fever or rash today which is very good, and unusual. It scares me when things go better than expected. Then I wait for something else to happen. Carrie always tells me that I'm a pessimist, and I worry too much. I guess that is just my nature. I do want to say that our primary nurse, who is a nurse who signs up to take care of Jordan whenever she is working is great. Her name is Maggie, and she is our age. Her and Carrie hit it off famously. I am glad that Carrie has someone her age besides me to hang out with. I can be a pain to be around when I am not smoking, and stressed out. Those two act like best friends. I know that Carrie wishes that she had a friend here. You know I have Robert to hang out with, even though I know he gets sick of me bugging him all the time. Anyway thats all for tonight.
Patrick

Tuesday, December 10, 2002 at 09:29 PM (CST)

Hmm, let's see. We have power again. Thatis great, but of course the power came on while I was at the laundromat doing laundry (typical). I didn't spend a whole lot of time at the hospital today. I thought I would let Carrie's mom get a chance to spend some time with Carrie and the baby. I am starting to get a sore throat. I hope it goes away by morning. It is so dry in that hospital room that sometimes it gives me nosebleads. I practically live in a sterile environment, and I wash my hands 40 times a day so I doubt I am sick. Jordan started a chemo drug called ATG today. This is an immune suppressing drug, and some of the comon side effects are a rash, and a high temperature. I don't even want to go into the less common side effects. They start him on it around 3pm, and it runs until around midnight. I just talked to Carrie, and she said his temperature was around 100.7 which is not a problem. He has slept a lot today which is probably from the benadryl. You know for those of you who have never experienced a power outage for a week in the winter, let me say that you should not take heat for granted. Also, only complete idiots take showers in a 40 degree bathroom in 35 degree water. Let me tell you. NEVER EVER try this. you know I got wet, and about the time I was covered in soap I realized my error in judgement. I seriously considered going to bed soapy. Anyway I have heat, cable, and best of all hot water. So it is all drifting into a bad memory. What are the odds that I would move to Durham, who got the worst part of the worst ice storm in North Carolina history. Anyway, on a lighter note my sister is coming to visit this month. She is dearly missed here, and we are all excited she is coming. So that is all for now.GO PACK.
Patrick

Monday, December 09, 2002 at 10:22 PM (CST)

Hello all--
Jordan's chemo. is going well. Still no side effects from the drugs other than a diaper rash, which is really clearing up, and a little upset stomach. He only got sick once, so he is doing great. Tomorrow he continues on the cytoxan, but starts the last drug called ATG. This is an immune suppressant drug. He takes this for three days, and then he will be transplanted. This one is the worst as far as immediate side effects go. He may get a rash or run a fever as high as 106. This is a little scary. The nurses and doctors say that we probably won't see any of this until after 7:00 tomorrow night. I will let you all know how he does. Pray that everything is fine. I've been told about 95% of the children get at least a rash and low grade fever if not high. He will be getting benadryl all day to try and combat the possible rash.
Well, the apartment still has no power, but the phone is working again. Patrick, Mom, Mike, & Connie are all waiting for hot water again. I just got off the phone with Patrick, and he took a cold shower. I was laughing at him because he said he could see his breath in the shower. I think he is officially a member of the polar bear club now. Ha, ha. Anyway, the power is supposed to be restored tomorrow. Let's hope.
I need you all the say a little prayer for all the families on this unit. Many of them are much worse off than we are. A little girl on the unit is about to undergo her third transplant. The first two didn't take. She has 4 siblings, and her family is undergoing a tremendous financial burden. I am going to get the information for their website and put it on our links soon. Also, today was kind of scary on our unit. A little girl down the hall took a turn for the worse. She was doing really well and all of the sudden she crashed. She is in the pediatric intensive care unit tonight and doing much better, but Brittany and her family could use all of your prayers. It really scared me to see what her mother went through. I looked into her mother's eyes and saw the deepest pain, and I felt helpless. When I saw all the nurses and doctors run down the hallway, it made the reality of what could happen all too clear. I'm still upset by the entire situation. Please take the time to say a special prayer for Brittany and pray that we don't have to experience that with Jordan. Well, it has been a stressfull day so I am going off to join my son in sleep. Everyone take care. We love and miss you!
Love,
Carrie

Sunday, December 08, 2002 at 10:45 PM (CST)

Hello all-
Patrick and I just got done watching the Packers win against the Vikings. Although it started out rough, we pulled it out in the 4th. That Brett Favre is something else. Well, Jordan started his second chemo. drug today. This one is a lot stronger than the first. It caused him to get a rash from head to toe for about 30 minutes, but the doctors were not concerned because he didn't run a fever and his vitals were still good. With this chemo., he gets a new drug called Mesna. It helps line his bladder and keep his kidneys flushed. The cytoxan (2nd chemo. drug) can really irritate the bladder. He seems to be doing well and he is sleeping right now. He has been sleeping since about 8:00 our time and it is now almost midnight. This doesn't surprise me because he barely slept all day today. I have to wear gloves and a mask when I'm around Jordan for the next few days because I woke up with a cold sore today. I guess it is from stress because I haven't had one in about 5 years. It is killing me that I can't just walk over and touch or kiss my baby, but I will survive I'm sure.
Patrick and I were able to go out together last night, which was a real treat. My mom stayed at the hospital with Jordan, and Patrick and I went to hang out with his best friend Robert. We took advantage of the situation because I know that in the next few weeks, I will not want to leave Jordan's side. It was nice getting away, but I sure did miss that little guy. I think he grew while I was gone. He now weighs 13 lbs. He looks like he is about 4 months old. He is so big. I guess that is good though because the doctors say he will probably lose his appetite soon and his weight will slow way down.
So far, this is the easy part (according to the doctors), but I don't think it's that easy. I can't wait to be able to take (God willing) a healthy boy home with me. Well, it is late and I need to get some sleep. Take Care.
Love,
Carrie

Saturday, December 07, 2002 at 10:15 AM (CST)

It is a little more difficult to find time to update the journal lately. Still no power at the apartment. They are saying that we have had the worst ice storm in North Carolina history. Pretty much the whole town of Durham and most of Raleigh were without power. More of Raleigh has power now, but Duke Power is telling us that most people will be without power until wednesday or later. The baby is doing great. He pulled the tube out of his nose last night, and they replaced it this morning. They also took him off his IV last night for about 30 minutes, so we actually got to carry him around in the hall for a while without lugging around a bunch of machines. I sent mom dad and Carrie's mom to Raleigh to stay with Robert. He of course has power. I didn't leave the hospital until late last night, so I stayed at the very cold apartment. It got down to 19 degrees last night. I understand that it is much colder back in Decatur, but at least you have heat inside. I thought about staying at one of the red cross shelters, but I couldn't bring myself to go to the homeless person level. But anyway it is nice and warm here at the hospital, and all you people that are praying for us please throw in a little power company prayer tonight. Jordan gets his NG tube out tomorrow, and then he will start the cytoxan tomorrow which is a pretty nasty chemo drug. Wish us luck with that. Oh and by the way we hope Dr. Rettig and her family feel much better soon. Carrie and I both know what it is like to be sick, and take care of a sick baby.
Patrick

Thursday, December 05, 2002 at 02:42 PM (CST)

Hello all-
Today has been a good day. Jordan is doing really well with all the medications so far. He is taking a chemo. drug called Busulfan 4 times a day for 4 days. He is also taking an antibiotic to prevent a pnemonia (similar to rsv) an anti nausua medicine because the Busulfan can cause him to be sick to his stomach, and finally he is taking Dilantin, which is an anti-seizure med. It sounds like so much, but he really isn't taking much compared to a lot of the other children on the unit. So far, the only side effect from the chemo. is a diaper rash. This is something that can easily be treated. Other than that, we are having a good time on the unit. We have met so many families, and they are all so nice. I put a mask on Jordan today and took him for a walk in the hall. He got to meet some people on the unit in the lounge. Everyone thinks he is just adorable. They all love his red hair. We will be taking some pictues of Jordan on the unit today or tomorrow (depending on the weather). I forgot a disk for the digital camera, and with the ice storm here, it's hard to get back and forth from the apartment. By the way, there is no power at the apartment and it may be days before it is restored. This means that Mom, Mike, Connie, and Patrick may be spending the night in a hotel. The sad thing is that most of the hotels that have power are booked. Anyway, Jordan and I have nice warm beds! It is actually better than I thought it would be on the unit. Patrick and I have been playing playstation, and watching DVDs. It passes the time. We also enjoy talking to the other families on the unit. Anyway, I am going to go because Jordan has to be back in the room to get his next dose of chemo. Keep the prayers, e-mails, cards, and phone calls coming. We love hearing from you all. Pray that Jordan keeps eating like a madman so that he doesn't have to have the TPN through his IV, and he can stay big and strong to fight this disorder. We love you all! Take Care.
Love,
Carrie

Wednesday, December 04, 2002 at 04:29 PM (CST)

I know that I promised some that I would update the journal yesterday, but that proved a lot more difficult than I had imagined. Let's see they started his Chemo at 4 am this morning. the first four doses are oral, and the one he got at 10 am he spit up some of, so they put a tube in his nose into his stomach. I was not in the room for this(on purpose), but I heard he did well. I went and got some playstation 2 games that I thought Carrie would enjoy. I also got some movies. At 1pm pizza hut brought us all pizza and soft drinks. This is something they donate weekly.It is sleeting, and snowing. I barely made it back to the apartment.Traffic is at a stand still, and it is supposed to get worse all night. Carrie and I have made a lot of friends, that I would love to tell everyone about, but for privacy reasons I shouldn't go into detail about some of the incredible people, and the incredible stories they have. Anyway Jordan is doing great. Carrie is also doing great. That's really all I can think of to say, maybe I will have Carrie write the next journal, she will probably get more technical, but I am too tired. Have a nice night.
Patrick

Monday, December 02, 2002 at 04:30 PM (CST)

Okay well I don't want to jinx anything, but it looks like tomorrow is the big day. Carrie's mom and I took Jordan up to clinic today to get his lines flushed. I saw some other kids who I overheard were supposed to be getting admitted any day, and I called Carrie at home, and said look you need to call someone and find out if he is going to get admitted this week or what. I understand not having a bed for him, but not knowing if it is going to be today, or next week or next month is unbearable. So Carrie called June, and June said that two kids were supposed to get released tomorrow, and assuming that they did he would be admitted. Then she called back this evening, and said it was a go. So he should be admitted tomorrow, and he will have his transplant on Friday December 13th. Carrie always said that 13 was her lucky number, but I hate tempting fate. So we are washing clothes in hot water, and sealing them up, and getting everything ready to go. So for all the people who have been praying for him. the next ten days are really important so no slacking off. Because the chemo can do some bad things to him. So anyway, that is about all for now. I will update tomorrow I promise.
Patrick

Saturday, November 30, 2002 at 05:12 PM (CST)

Hello-
Jordan got to come home today. Boy are we tired. Staying up at the hospital is not something I'm looking forward too. Anyway, all of Jordan's tests and cultures came back negative for infection. The doctors believe that the skin may have had a small infection, but the line itself is ok. They are keeping Jordan on antibiotics for 10 days just to be safe. They believe that his line site was so red and inflamed because the double line is so big and he is so small. They had a terrible time trying to fit that line in him. Poor Guy! He does so well with all the stuff he has been through. The only time he fusses is when he is really hurting. He must think this world sucks. All he has known is pokeing and proding from day one. Hopefully all of this will be worth it, and he will never again know what that is like. It sure beats the alternative with him in and out of the hospital his entire life. The doctors told us that Jordan's name is up on the board in the transplant unit, which means they are all ready for him. Hopefully we will hear something, and he will be admitted to the transplant unit on Monday or Tuesday. We still have to go to clinic everyday until he is admitted. He has to have his dressing changed and lines flushed. I really don't like that because Jordan's skin gets so irritated from them taking the tape off everyday. Also, there is more risk of infection the more the line is exposed. I am so paranoid, that I kind of ticked off one of the doctors today. When the nurses change the dressing, everyone in the room must wear a surgical mask to cut down on germs. When the nurse started to change his bandage today, one of the doctors didn't have a mask on, and I asked him to put one on. I think he was insulted, but he put on the mask. The other doctors just said, "We have mom trained already." June told me not to be afraid to make sure everyone does what is needed so that he is safe and that is just what I intend to do, even if I tick off a doctor or two in the process. I almost forgot to tell you how much mr. piggy weighs. 11 lbs. 14 ozs. I can't believe it. Well, I am going to go for now. Mom should be here soon, and I can't wait to see her. Everyone take care.
Love,
Carrie

Friday, November 29, 2002 at 08:22 PM (CST)

Hi all. Well it has been a rough day. About 10:30 last night we couldn't get Jordan to quit screaming, and he was crying real tears which is very unusual, so we called the on call doctor at the Pediatric bone marrow transplant unit. She had us come up to the ward, and they decided that he may have an infection around his central line. So they decided to admit him last night, and start him on antibiotics. He should be out tomorrow. DO NOT worry, he is ok. He is happy and comfortable. If there is anything wrong with him the antibiotics will take care of it. We got to meet Alicia Bennett today. Her, and her husband have three kids with San Fillipo syndrome, which is similar to Hunters syndrome. Only one of them has met the criteria for a transplant, and he already had his, and is in the process of recovery, and growing cells. Carrie and I have E-mailed back and forth with them, and they are great people. We are looking forward to meeting the rest of the family. My friend Clint Bundy called today to tell me that my bearded dragon(Big Lizard) is doing well. Clint is a wizard with reptiles, and I couldn't imagine anyone else taking care of him. Thanks Clint. As a matter of fact, my dogs and cat are also doing great. We sure miss them though. Anyway I will let you guys know how things go tomorrow.
Patrick

Thursday, November 28, 2002 at 06:44 PM (CST)

Happy Thanksgiving to everyone! I hope you all enjoyed your day and ate tons of food like we did. We have so much to be thankful for. Jordan is doing great and hopefully will be on the transplant unit soon. I talked to all my family back in Illinois this afternoon, and I realized how much I miss being with them. It is hard during the holidays, but Mom will be here Saturday (hurry Mom). Everyone sounded like they were having such a great time. I miss you guys!
Today we had to take Jordan into the clinic to get his lines flushed. They also changed the dressing because the tape had come loose and the lines were everywhere. It's so hard to keep so much hardware under control on such a little body. Although he is not so little anymore (11 lbs. 7 ozs.). He is now wearing 3-6 month clothing. I can't believe how fast he is growing! Before long he will be up running around driving us crazy (I can't wait). We were a little concerned because Jordan has sounded rattly today, and I kept suctioning his poor little nose. We had him checked while we were at clinic, and his ears and chest are fine, so they are not too worried about it. They may do a nasal viral battery test tomorrow if he is still snotting (for lack of a better term). If it comes back positive for infection, it will delay Jordan's treatment another week. Let's pray that it is just a runny nose and nothing more. We want this boy to get in and get treated ASAP. I can't believe how busy the pediatric unit is right now. We will know a date (hopefully) for admission on Monday. We will let you know.
Until then, everyone take care and enjoy the holidays with family & especially your little people. I have also put a new picture on the photo album. Patrick & his dad were making fun of Jordan's outfit, but I love it. They believe he looks like he broke out of jail. Check it out.
Love,
Carrie

Wednesday, November 27, 2002 at 06:43 PM (CST)

Well, today was fairly uneventful too. Jordan went in and had his central lines flushed. He does so well in clinic; all the nurses just fall all over him. He has had a little bit of a belly ache the last few days, probably from the anestesia from the surgery on Monday. The nurse practicioner told us to use some drops for gas. They seem to be helping.
We met Laney Biggs & her family in clinic today. She is the youngest to ever be transplanted for Hurler's Syndrome. She was 6 weeks old (probably about what Jordan will be) when she was transplanted. She is 42 days post transplant and is doing really well. She was out of the hospital 22 days after transplant, which is promising for us. Seeing her today gave me even more hope for Jordan. What a cutie she is. We will be praying for her and her family.
That's about it for now. We wish everyone a very happy Thanksgiving. We will be enjoying some turkey and pumpkin pie here. MMMMMMMMMMM!
Love,
Carrie

Tuesday, November 26, 2002 at 11:31 PM (CST)

Hi all. Well there isn't much to tell today. Jordan seems to be feeling a lot better, and my cousin's husband JT from Indianapolis who coincidintally got a new job about ten minutes from us came by and asked Carrie and I to go have a few drinks with him. We went to the chillis, which is about 200 yards from our apartment, and drank a few drinks. It was really nice to get out of the apartment, and not be going to the hospital. Anyway, mom babysitted. After that JT and I sat around the apartment and talked about sports. Well he talked sports, and I kept talking about how much I hate Warren Sapp, and how Reggie White is the greatest football player of all time. I hope there is someone reading this that understood that. Well that is about all for tonight.

Patrick

Monday, November 25, 2002 at 05:40 PM (CST)

Hello all-
Today has been a very difficult day. Jordan went to get his central lines put in today and it was really hard on mom & dad. They had trouble putting his lines in because he is so small and actually had to place one of his lines through a vein in his neck after trying unsuccessfully to place it in the vein under his collar bone. Needless to say it was a long and painful day for all of us. Jordan did great during the surgery, but is really sore from all the work they did to him. We are trying to keep his as comfortable as possible, but the simple task of burping him has become quite a challenge. It pulls on the incision i'm sure. Anyway, he handled everything (the lines, spinal tap, & skin biopsy) like a trooper. June & Dr. K. are right: this is much harder on us than on him. He is sleeping peacefully right now, and I keep standing over him waiting to comfort him from any sign of pain. It's hard because he is so small and can't tell me if he hurts. It is only going to get tougher from here. I hope I can handle it. After Jordan's surgery, the nurse practicioner told us that Jordan was going to have to be kept over night for observations because he was so young, but that turned out to be incorrect, and we were able to bring him home. They can't admit him into the hospital and start his chemo. tomorrow like we orginally planned because the unit is completely full. We have been told that a bed should open up this week, and they will more than likely admit him the first part of next week. Until then, we have to take Jordan into the hospital everyday to have his dressing changed and his lines flushed. This waiting is killing us. We want them to start the process so that he can start healing. I guess everything will work out the way it is supposed to in God's time. I just wish he would give me a little patience.
On a sad note, I would like to send my thoughts and prayers to the St. Teresa community and the family of one of our students. A senior boy committed suicide last night and everyone is really shaken up by it. It feels like deja vu because we had a senior boy commit suicide my first year there too. I still miss Jared & Chris will be greatly missed as well. I send my love & prayers to his family. I hate to end on a sad note, but it seems that today has just been one of those days. Take care. More later.
Love,
Carrie

Sunday, November 24, 2002 at 06:49 AM (CST)

Well it is sunday morning. I have got a head cold, and Carrie is still pretty sick. I think her antibiotics are making her sick to her stomach. We didn't get a lot of sleep last night. Carrie got less than me though. Jordan has been a little cranky. I hope he is feeling ok. They are actually televising the Green Bay game here today. Usually I get to watch the Panthers, and or the Redskins. Carrie is going to dress Jordan up in his favorite Packer outfit.( I will post a picture of it this afternoon) I read Stephanie Potter's article in the Herald & Review this morning. The picture wasn't on the website, but I understand that somehow they used the picture of Jordan with my friend Robert, and has a caption of something like Jordan and his proud Daddy. I am hoping this is a mistake. If not he has got some explaining to do. Never the less Stephanie is a very gifted writer. Thank you Stephanie. I want to welcome everyone to the website who has never been here before, and encourage everyone to sign our guest book. I want to remind everyone who doesn't know that Jordan is going in for surgery at 6:00 tomorrow morning to put in his central lines. For those who understand such things he is getting a double, and a single lumen. That means he will have a tube going into each side of his chest. This will be for administering medications, and drawing blood. If they don't admit him tomorrow, we will have to go in to clinic every day to get his tubes cleaned out. They can only start his chemo on Monday, Tuesday, or Wednesday. So if we don't get him in by wednesday we will have to wait another week.
We sure miss everyone back home. We apologize for not keping in touch with a lot of people we would like to, but things are just so stressful, and hectic here it is very hard to. Anyone who wants to can E-mail me to say hello, or anyone who has any questions about Jordan's treatment, feel free to. I hope everyone has a great sunday, and I sure could use a Packer win today.

Patrick

Friday, November 22, 2002 at 04:30 PM (CST)

Well It is about 5:30 pm Carrie is sleeping on the pullout couch. Mom is taking care of Jordan. Dad brought her home, and headed back to the mountains. He has a cold, and trying to stay out of the apartment. Carrie is on antibiotics. I don't know how long it will take for her to get better, but I hope she hurries up. Everything is still set for monday. Jordan is going in for surgery for his central line at 6 am monday. Jayne Cash just called while I was writing this. She is a nurse coordinator for the pediatric bone marrow transplant team. She called to see how Carrie was. Dr. Kurtzberg has said that if Carrie was still sick that they were going to wait to admit him. So the plan is to still have his surgery on monday. Then I am under the impression that they will admit him next monday December 2nd, but of course we really don't know. I guess the doctor knows best. I am having very mixed feelings about it. Everybody wants Carrie to get better before all of this, but this is what we have been waiting all this time for. Anyway, as soon as Carrie feels better I will let everyone know. Nothing like a good setback to make things interesting. I'll let you guys know as soon as Carrie feels better.
Patrick

Friday, November 22, 2002 at 12:35 AM (CST)