History

Saturday, February 28, 2009 12:16 AM CST

I had been told that I haven't updated in a while, but WOW I didn't realize just how long it has been. Things have been wonderful. Madison continues to grow, change, and simply amaze us.

We recently got a dog for Madison. It is a boxer, which she named Lady. She really likes her. Madison will finish Preschool in May and will start Kindergarten in the fall. It is hard to believe. Time goes by so quickly.

I have added pictures and will get some new videos up soon.

Thanks for checking in on Madison.
God Bless.

Friday, September 12, 2008 7:45 PM CDT

I just want to send out a Happy Birthday to Grace. On September 14th she would have turned 8 years old. We miss her greatly, but know she is in a much better place.

The summer has ended and yes I haven't updated since May. I guess this goes along with life returning to normal. We have had a wonderful summer. Madison is such a delight and joy. She has a very strong personality which has it's advantages as well as disadvantages. We have to remind her that she is the child and we are the adults.

This summer we took Madison to Kennywood Park. She rode her first roller coaster - the Jack Rabbit. After riding it 5 times we realized she loved it. No fear. We also went to visit my brother in PA. We took Madison to Sesame Place and Adventure Aquarium. She had a blast.

She has continued with gymnastics and will be starting back to swimming lessons next week. She started back to preschool as well. Madison of course swam all summer long. She can now swim across the pool above water. It is amazing how strong she has become.

We also took Madison to Duke in July for her yearly checkup. It went extremely well. We got to spend time with the Kristoff's (Alyssa's family). Madison loves spending time with Katie, Ryan and Alyssa. Madison's result all came back normal. It is absolutely miraculous.
Just the other day Madison decided to cut her hair again. This time however was a bit more drastic. She cut about eight inches off. So the beautiful curls are gone. However, we trimmed it up and fixed it, and it does look cute. She looks so grown up.

Thanks to all who continue to check in on Madison. Hope you enjoy the new videos and pictures.

Remember to thank God for the blessings in your life each day. We have been blessed so much. As life continues to normalize for us it is easy to take things for granted. Madison is such a miracle. We are so thankful.

God Bless.

KENNYWOOD:

Sesame Place:

Swimming across the pool and swimmng to the bottom:

Climbing on her Jungle Gym:

Thursday, May 29, 2008 8:25 PM CDT

5-31-08:
HAPPY 4TH BIRTHDAY MADISON!!!! You are such a blessing!

As always I am apologizing for not updating. Things are great with Madison. It is amazing how strong she is getting. The one video is Madison at gymnastics and the other is at her cousin's birthday party. Enjoy the new photos and videos.

God Bless.

Saturday, April 5, 2008 2:23 PM CDT

I finally put some new pictures on the website. I hope to get some new videos up soon. We are doing great. Thanks for checking in.

God Bless.

Monday, February 4, 2008 5:11 PM CST

FEBRUARY 11, 2008 PICTURES AND VIDEOS FINALLY UPDATED. I'll work on more video updates this week.

Where does the time go? I guess my definition of "soon" is a month and a half. Christmas was wonderful. Madison really got Santa this year. It was sooooo much fun. Needless to say she got half of Santa's workshop. Her favorite thing was a "hoppy" ball. I hope to get some video of her with this ball uploaded asap.

We moved to our new house just after New Year's. Even though we only moved a few miles away, it was still quite an ordeal. We are settling in fine. Madison loves all the room she has to play. As always, she continues to amaze us everyday. We have been working on teaching her not to say "hate" that you should say things like "don't like", "dislike", etc. Well I didn't realize how much I say the word hate. She is quick to correct me. One day I said that I disliked something and she told me, "Good job mommy, you didn't say hate". She is so funny.

Madison still loves school. She missed last week due to a really bad cold which she and I keep exchanging. It is really the first time Madison has been sick, normal sick that is. Pretty amazing to be 3 1/2 before getting your first cold. She has now received all of her dead vaccines and we are waiting for the lab results of how her body responded. If it responded appropriately we go to the live ones, and then we are done--total normal life. Wow, just to think about that is miraculous. Madison also loves her gymnastics and once she is over this cold, she will start up swimming again. She says she wants to swim just not on her back. She did agree to try it 3 times at each lesson. Madison is a great negotiator.

Hope all is well with everyone. Thanks for continuing to check in on Madison. Videos and pictures will be added in the next couple of days.

God Bless.

Thursday, December 20, 2007 6:32 PM CST

We would like to wish everyone a very, Merry Christmas!!

Things around here have been very busy, but very good.

Enjoy the holidays. I will do a full update soon. Here are some new videos for Christmas.

Sunday, October 28, 2007 8:07 PM CDT

Just added another video. After attending Madison's Fall Festival at her preschool we discovered she can recite the Pledge of Allegiance. So I have added it to her other videos. Hope you enjoy.

Saturday, October 13, 2007 4:18 PM CDT

Just a quick update. Everything is wonderful. Madison is loving preschool. I took a halfday from work and took her on her first field trip. They went to a local flowershop/greenhouse. She is still doing her swimming and gymnastics each week. I realized when I went to update pictures that I have slacked with regards to picture taking. We have been a little busy. We are in the process of buying a new house. It is currently under construction and should be finished toward the end of December. What a Christmas present?!

Hope all is well with everyone.
Enjoy the videos and pictures.
God Bless.

Saturday, September 22, 2007 3:26 PM CDT

The time continues to fly by so quickly. Madison started preschool at the beginning of September. She absolutely loves it. She goes on Tuesdays and Thursdays for 2 hours. It is going to be so great for her to finally socialize with kids her age.

She is tolerating her new glasses quite well. It's like she has been wearing them forever. In addition to her gymnastics class, Madison is taking swimming this fall. It is something she loves and great PT at the same time. Since she is in both gymnastics and swimming, we get to reduce PT to once a month.

Madison continues to amaze us. She is now spelling her first name. She loves to "read" books. She has several of them memorized, so that if you didn't know better, you would think she was actually reading the book. Madison is continuing her singing "career". I think a karoke machine will be on her list for Christmas.

Any time that Madison has to be in "timeout" afterwards we always have a "talk". This consists of a discussion about why the timeout was necessary. Well, the other day after a talk, Madison got off the chair and said,"Mommy, we just had a conversation." It was so funny. We don't know where she picks this up. But is just cracks you up when you hear a word like "conversation" come out of such a little person. She has definately been around adults too much.

All things medically speaking have been good. She goes for her second set of vaccines the end of October. Her coombs came back negative again, so hopefully we are done with the AIHI (anemia) issue for good.

Thanks for checking in. I will work on getting new pictures and video up soon.

Good Bless.

Saturday, August 18, 2007 3:27 PM CDT

UPDATE August 21, 2007: Thanks Amy and Jason for sharing about Photobucket. I was able to add video!! How cool!! I wish I had mentioned it sooner. Anyway enjoy the videos!!

Where has the summer gone? We have been so busy. Madison is going to continue to do gymnastics through the fall. I am looking at swimming lessons again through the winter. Madison is now jumping in the pool without floaties and swimming underwater about 8ft to a ladder and then she swims back to the side and climbs out by herself. I wish there was a way to add video to this site. We also took Madison to Kennywood Park. It is an amusement park about 2 hours from where we live. She rode all the kiddie rides, and she also road the turtles, kangaroo, paratroopers, and the log jammer. She was about 2" to short for these rides, but they weren't checking height. Of course she rode these bigger rides with us.

Madison received her first set of vaccinations Thursday. She has been very sore, so we have been doing Motrin and Tylenol. Madison also got her glasses this past week. She has a lazy eye plus she is farsighted. The doctor believes that the glasses will correct the lazy and surgery will not be necessary. Only time will tell. She doesn't seem to mind them at all. And she looks so cute.

Hope everyone enjoys the last of their summer.
God Bless.

Friday, July 20, 2007 9:07 PM CDT

Our summer is continuing to be fabulous. We attended the Hunter's Hope Symposium. It was wonderful to meet everyone I have been in touch with or read about on the internet over the past several years. Madison and I also got to spend several days with the Kristoff's (Alyssa's family)(caringbridge.org/ct/oursonryan) We had a terrific time. We're ready to go back for another visit.

Madison is still enjoying her gymnastics and is swimming up a storm. We just got another underwater camera, so hopefully I can get those pictures up soon. She loves her new swingset she got for her birthday. She calls it her "playground".

Hope everyone is enjoying the summer. Thanks for checking in on Madison. Enjoy the new pictures.

God Bless.

Friday, June 22, 2007 1:20 PM CDT

Well, I am updating finally. As I have said before, I really don't know where the time goes.

On Memorial Day weekend we went to Hilton Head Island for 4 days for my brother's wedding. Needless to say we made it to the beach. Madison loves the ocean. She would stay there for hours if we let her. She looked for seashells, played in the sand, went in the water, and ran on the beach.

We had her 3rd birthday party the 2nd week in June(after I was out of school for the summer). She had a great time. She got to swim with the kids. She kept saying,"look at all these people". I still can't believe she is three. With turning three, she is old enough to sign up for gymnastics, so we did. She is taking gymnastics with 3 other girls (2 of them we know). She had no problem joining the other kids and leaving mom behind. This is good and bad in my eyes. She doesn't realize it, but gymnastics and swimming are great physical therapy for her.

It is very strange to be doing so many "normal" things. To be able to pretty much go when and where you want at anytime is a luxury we often take for granted. We are very blessed to be able to do all these things.

This past week we went to Duke for Madison's 3 year post-transplant studies. Let me just say WOW! We have the privilege to look at a miracle everyday. All of Madison's tests came back completely normal!!!! -- EEG, VEP, BER, Nerve Conduction, MRI, CVC, Echo, Chest xray, everything! We sat down with Dr. K and Sue, and there was very little to talk about as far as treatment or schedules. Our next step is vaccinations, which we will start in about a month. We also discussed preschool. Since Madison doesn't qualify for Public school services, we are looking to start her in a private preschool. The reason for starting her at 3 is for the social aspect. She has been isolated for so long that she needs time with kids her age. She interacts great with any adult, but it is time for her to get to be just a kid. It is going to be very difficult for me because Chad and my mom are the only two that have watched her for any significant lengths of time. Madison will be fine, but it will be a major adjustment for me.

Madison and I are going to visit our friend Alyssa and her family next week. Then we are going to the Hunter's Hope Symposium this year. I have read and talked to others about it, but have never been able to attend. We are looking forward to meeting all the people we have read about. I am also taking an online class this summer. It would be nice to finally get my master's degree.

Hope everyone is having a great summer. Thanks for checking in on Madison.

God Bless.

Thursday, May 31, 2007 7:18 AM CDT

This is so hard to be believe but...

HAPPY 3RD BIRTHDAY MADISON!!!!!!!

How the time has flown by. Madison you are such a joy! Words can't express how magnificent we think you are. We love you!!!!

Monday, May 7, 2007 8:21 PM CDT

I hope everyone enjoys these pictures. As you can see things are really going well for Madison. She is a joy that I can't even begin to put into words! All I can do is thank God everyday for such a beautiful miracle and blessing.

Keep checking back for more pictures.

God Bless.

Wednesday, April 25, 2007 8:50 PM CDT

Where does the time go?!?!? Madison is doing fabulous!!! She is completely off all oral meds, and she only has to get her IV meds one more time in May. If her bloodwork remains stable through June when we return to Duke, we will begin doing immunizations.

It is really impossible to put into words how amazing Madison is to us. So many things that she does are just ordinary, but to us each one is a miracle. Children are such a blessing. Madison will be turning three in May. It is sooooo hard to believe. She is quite a character and explodes with personality. She also has a tremendous sense of humor.

Thanks for continuing to check in on Madison and for the messages.

God Bless.

Monday, April 2, 2007 7:58 PM CDT

Enjoy the pictures! My update will follow soon.

Sunday, February 4, 2007 11:48 AM CST

Wow! Where to begin?!? Let me start out with how fast kids grow up. When I think about Madison turning three this coming May, I am just in awe. She has changed from a baby to a toddler and heading on to be a little girl. She is beyond amazing to us. Madison is extremely independent. Everything is "me, me, me" and "all by myself!" Each evening at bath time, I sit on the couch and tell Madison to get her stuff ready for a bath. She goes to her room, gets her pajamas, and takes them to the bathroom. Then she gets out her towel, washcloth, and pullup. Finally, she undresses her self and runs into the living giggling ready for her "blue water"(crayola makes tablets that change the color of the water and blue is her favorite).

We finally have gotten snow here, and Madison loves it. She goes on her sled by herself and just squeals and laughs the whole way down the hill. She has crashed a couple of times, and again she laughs. One time she went right in to a shrub and was covered in snow. It was quite funny.

Another one of her favorite things to do is play with water in the sink. This can be 30 minutes worth of entertainment. She always asks for a "little bit soap" and "little bit water"(running water). Madison is on the go from the time she wakes up until we put her to bed at night. She takes a nap everyday. At bedtime Madison must have all of her critters: 2 kitties, otter, teadybear, ducky, piggy, Wilber, Big Baby, and about 10 others. We rock for a few minutes with her blanket and one animal, and she insists that mommy sings "Bad Day"(by Daniel Powter). It is her favorite song. She tries singing it all the time. We have to listen to it over and over in the car.

Madison still loves to sit and have books read to her. Many them she has memorized and she finishes the sentence. She is reciting the whole alphabet now and can count to twenty. She goes around saying "d - daddy" and "m - mommy" She can tell you what letter most hard consonant words begin with. She really blows us away.
Madison is now saying 3-6 word sentences, and her speech has become so much clearer. We are getting ready to transition her from the birth to three program to the school system, and her therapist are all telling me that she will qualify for minimal or no services with the progress she has made. It will be very strange not to have therapy appointments. Also we are finally beginning to wean the last medicine. We will do this over the next 7 weeks. If her bloodwork continues to be stable we will stop the medicine all together at that time. Again if over the next three months from the time we stop that med things remain stable, we will begin doing her vaccinations.

We are in the process of getting SMO's for Madison. They are similar to AFO's but not as constrictive. Due to weakness her ankles slightly roll in therefore causing her knees to almost touch when she walks. Fortunately it is very minor. The SMO's will just give her some support until the muscles completely strengthen. With her beginning to grow a bit faster now, we don't want any abnormal bone growth just because of ankle weakness.

Well I believe that about covers it for now. We are so very blessed to be living a more "normalized" life. It is so nice to just get in the car and go whenever I want. I pray I never take that for granted. Thank you for continuing to follow Madison's progress.

God Bless.

Monday, January 1, 2007 1:29 PM CST

HAPPY NEW YEAR!!

We are really looking forward to what this year will bring. Madison had a wonderful Christmas. As you can see from the pictures, she didn't get much (haha). She did get her stuffed kitty--maybe a real one next year!?!

Enjoy the new pictures. I will update again soon.

God Bless.

Friday, December 15, 2006 9:04 PM CST

I am updating at the "request" of several people. Now that Madison is only getting her IV meds every two months, there is not much to report medically. She is continuing to grow. We have finally had to buy 24 month tops and 18 month pants. She has no waist, so she goes around yanking up her pants up until we get them taken in. She is talking up a storm. Her words continue to get more and more clear. When I've been out shopping with Madison, I have had several people comment on how well she speaks. This is always so reassuring to us.

Madison is learning to sing the alphabet. She can get to the letter g by herself and then fills in letters as we sing. She is getting excited for Christmas. She keeps saying that santa is going to bring her a kitty. Little does she know this will be a stuffed kitty, but she won't complain. Madison continues to go nonstop through the day. We bought her a "big girl" bed this week. She transitioned with no problems. After one night, we took down her crib. She absolutely love her "big bed". She actually stays in it until we come and get her in the morning. During the day she loves to climb up and down from her bed. Her potty training is going very well. She seldom has an accident during the day. She can now walk down our stairs by herself while holding the railing. As exciting as these things are, it is hard because she is growing up so quickly.

Madison is sooooo amazing to us. What a gift and a blessing she is to us. We are truly looking forward to Christmas.
I have posted Madison's Christmas pictures we had taken a few weeks ago.

We hope everyone has a safe and happy Christmas!

God Bless.

Tuesday, November 7, 2006 12:16 AM CST

I know it has been over a month since I have updated. It�s amazing how busy we get with �stuff�. Even though things are busy, they are good. Madison continues to grow and change everyday. She is no longer a baby, but instead a little girl. She is two going on twenty. Madison is very independent. She loves to clean and do laundry with me. She puts her own clothes away. I am enjoying this now because I know it won�t last. Madison got to trick or treat the other night. Madison and I went with a friend of mine and her two kids. Madison had a blast. It took her about two houses to figure out what trick or treat was all about. She kept saying, �more house� and �more candy�.

Madison continues to be very active. Her walking has greatly improved. She can almost run now. Her balance is still a bit of an issue, but that will improve as her trunk muscles continue to strengthen. She climbs everywhere now. She can even push the kitchen chair over to the sink to play in the water. She has a little stroller that she piles all her animals in and pushes them all over the house. Madison still loves to read books. She can count to 10 by herself, and when we say the alphabet, we stop at certain spots and she can tell us the next letter. Her speech has also improved. She is so much easier to understand. She is putting more and more words together too. Her favorite things to say are pepperoni, okey-dokey, oh no, and big doggie. She talks all the time. It is absolutely fabulous. Madison started her swimming lessons last week and she loves it. We go again today. It is just so hard to believe that she is growing up this fast.

We did go to Duke yesterday for her MRI that we were unable to get done back in July. The results were as we expected. It showed continued progression of mylin and her hips were normal as well. Her labs were good. The antibodies screen finally came back negative, so in three months we will begin weaning the last immune suppressing medication. It did take them almost 10 sticks to get the IV and labs drawn. Since this has been the case the last few times and Madison is doing so well, we get to do her IV meds every two months instead of every month. Hopefully this will mean that by summer she will be off of all medications. When we looked at her growth chart, her height has continued to be on her own curve, but still remains below the 3le. However, her weight for the first time has hit the 5le. She finally made it on the chart. I have noticed that her clothes have begun to get smaller. We might have to buy 24 month size stuff for Christmas.

I just read our friend Alyssa�s webpage, and she has remained out of the hospital for a full two weeks. She is on several antibiotics, so please continue to keep her in your prayers.

Thanks for continuing to check on Madison.
God Bless.

Tuesday, November 7, 2006 10:58 AM CST

Enjoy the new pictures. I will update the journal soon. Sorry it's been soooooo long.

Sunday, September 17, 2006 7:13 PM CDT

Hello to everyone. We are finally getting back into our routine with me being back to work. Madison has adjusted well as usual. Medically speaking there is not much to report, which is good. Medicines remain the same for now. We are hoping to make some changes in the next two months. We are getting closer and closer to being of all meds. Her weight and height have remained the same unfortunately, so we must wait patiently. She will grow it will just take some time.

Madison is a very busy little girl. She just never seems to run out of energy. It is absolutely wonderful. We marvel over what a "normal" 2 year old she is. To think about all she has been through, we just stand in awe of her everyday. What a truly, magnificent miracle she is! Each day her speech is improving. People who just see her on occasion are beginning to understand her. This past week she has learned two new words: pepperoni and okey-dokey. She is beginning to put 2 and 3 words together forming sentences. One of her favorite words is big. She is also counting up to 10 without any help. Madison, I must say, has developed the appropriate 2 year old attitude as well. She wants to be totally independent, and she can be quite stubborn. This too is wonderful!
We took her to her first highschool football game this weekend. She loved it. She was completely fascinated with the band and the cheerleaders. We bought Madison her first pair of pom-poms. She didn't seem to need us to show her what to do.

We have been greatly blessed. We look forward to what each and everyday will bring with Madison. Thanks for continuing to look in on Madison and to those who leave messages in her guestbook.

God Bless.

Sunday, August 20, 2006 7:27 AM CDT

Hello everyone. The summer is almost over. As I said before, we have had a wonderful summer. Madison continues to be very active. She starts around 7:30am and doesn't stop until about 7:30pm, except for a short midday nap. A few of the things Madison is into these days are reading books, looking at photo albums, playing in her playhouse, puzzles, basketball, swinging, and of course swimming. She will start swimming lessons in September. We don't want her to lose her fearlessness of the water over the winter. There is also a possibility that she will also get to start horseback riding. This will be theraputic as well as fun for her. It will get her out of the house during cold and flu season. Right now we are able to go just about anywhere, but as the winter comes we will have to be a little more careful.

Madison went for her monthly medicines on Friday. Her weight and height both slightly increased. She is now 21 lbs. 7 1/2 oz and 31 in. long. 12 month clothes are just now beginning to be too small, but 18 months are just a bit too big. She is eating very well. There are just a hand full of things that she won't eat. Our girl loves food! Her labs were all good. We checked her cortisol level and it was actually in the normal range. So we are going to try reducing her hydrocortisone from 3x/day to 2x/day. We will check it again in a month. We just have to watch that her enery level and appetite don't decrease.

Please continue to pray for our friend Alyssa. She was finally released from the PICU after more than 10 weeks. She was home for about a week and a half, but was readmitted yesterday.

God Bless.

Saturday, July 29, 2006 6:25 PM CDT

Wow, what a busy summer! It is hard to believe it is almost over and school will be starting soon.

We went to Duke for Madison's 2 year post-transplant testing. Madison is doing extremely well. All of her tests came back normal --EEG, VEP, BAER, Nerve conduction, pulmonary, chest xray, and echo. We were unable to do the MRI because they tried an oral sedation, and it wasn't enough to keep her under. The one thing that showed up which we weren't expecting is her coombs test came back postive (3+). This means that the antibodies that were attacking her red cells are back. The good thing is that it is NOT requiring her to need blood transfusions. Dr. K says that this is not something to worry much about. The antibodies may come and go and not cause her any problems. The one thing that it does mean is that we can't wean her last immunosuppressing medication. We will go back in about 4 months to try the MRI again and check her blood. Her immune studies did show, however, that her immune system is recovering nicely despite the one medication. Developmentally everyone was very impressed with her. I will get the official report in a couple of weeks.

After our week at Duke we headed to the beach. It was so nice to finally go on a "normal" vaction again. Madison loved the ocean. We spent time on the beach and at the pool everyday. We even got pictures of Madison underwater in the pool. Unfortunately it wasn't with a digital camera so I will have to work on getting some of these on her website. I hope everyone is having a great summer.

Thanks for the prayers for our friend Alyssa. She is improving each day. There is a possiblity that she will finally be discharged next week. Please pray that she does.

God Bless.

Monday, June 26, 2006 1:11 PM CDT

Madison went for her monthly meds, and she has gained 9 ounces and grew an inch. This is the first time in a while where she gained weight and height. Hopefully this is the start of a good growth spurt. We had Madison�s birthday party last weekend. She had a blast. I think we are going to need to add a room to our house for her toys!!

Our lives continue to become more �normal� everyday. We head to Duke for Madison�s 2 year post-transplant check-up in a couple weeks. After that she will only have to return once every year. When we finish our week at Duke, we are planning on heading to the beach for several days. We recently put sand in Madison�s sandbox, and she loves it. So she is all ready for the beach. Madison loves to swim. She goes all the way under the water in the pool. Bubbles are still one of her favorites as well as riding her little bike. One of her new favorites is basketball. She got a Little Tikes basketball hoop, and she is just tall enough to make a basket. We are still working on the potty training. She is continuing to do well even though we are still using pull-ups. Her two-year old attitude is inhibiting our progress. When I ask Madison, �What does mommy think of your attitude?�, she pinches her nose and says, �PU�. Of course, then she laughs. Madison is my little helper. She wants to do everything such as unloading the dishwasher, laundry, and picking up her toys. I give her PJ�s to her and tell her to take them to her room and put them in the Pajama drawer�and she does!! She hands me each dish out of the dishwasher to put away. And as long as we sing the Barney clean up song, she will put her toys away. She is so amazing. I am enjoying this helpfulness while it lasts. She now knows all of her Capital letters and their sounds, so we have begun working on lower case letters. Madison will point to items as you count, so I want to start working with her on identifying numbers next. She continues to learn new signs, and we are beginning to us picture-word cards as well. She is still difficult for most people to understand, but continues to make progress. Her lower back muscles are still weak and this affects speech. They are continuing to get stronger everyday, so we must be patient and give her time to recoup from the long-term steroid use. It is amazing what an impact steroids can have on the body. Madison�s walking is slowly turning into running. She loves to be chased down the hall. Most of the time she ends up going too fast, falls, and then laughs. Of course she wants to do it again and again.
We have been very fortunate that Madison loves to eat. She will eat just about anything, and she eats well. As you can tell Madison is a busy little girl. She doesn�t stop and it is wonderful. She continues to do new and amazing things everyday. Thanks for checking in on her. We hope everyone is having a great summer!!

Please continue to pray for our friend Alyssa. She has remained stable, but is still sedated and intebated. It is going to take time for her lungs and diaphragm to strengthen.

I will update while we are at Duke.

God Bless.

Wednesday, May 31, 2006 5:26 PM CDT

June 8, 2006
PICTURES HAVE BEEN UPDATED!! Sorry it took so long!

HAPPY 2ND BIRTHDAY MADISON!!!!

Wow! I just can't believe Madison is two years old today. How time flies!!! I know it has been over a month since my last update. My apologies. We have been quite busy. I finished up my last of five classes today, and Friday is my last day of work until August. I love being a teacher. Madison is going to continue to keep us very busy. She is walking everywhere and never stops. It is fabulous. We are hoping to take several little trips this summer and one trip to the beach. At the beginning of May we took Madison to Minneapolis where I had the opportunity to speak to nurses, casemanagers, doctors, etc. about Grace's and Madison's stories. It was a wonderful experience and I hope to have more opportunities to do this.

Ok, about Madison. She continues to amaze us as always. She can now identify all her letters of the alphabet and can say the sounds of about 21 of them. Madison's speech is beginning to become more clear. Others are beginning to understand some of what she says, and her signing helps as well. We are working on potty training now. She went two days with dry clean pullups. I bought "big girl" underwear for her and I hope to start that next week when I am out of school for the summer. She gets M&M's each time she goes, and it seems to be working. A couple weeks ago we took her to my niece's birthday party where they had a horse and a pony, which I let her ride. She loved it. I am going to try to sign her up for theraputic horseback riding this summer. It is a good way to strengthen lower back muscles, which for her are still a little weak. I took her to the dentist this week, and he was pleased with her teeth. They are strong and healthy which is wonderful considering all the treatments and medications Madison has had endure.

I will try to update pictures this weekend. Thanks for continuing to check in on Madison.

I would like to ask that everyone keep our friend Alyssa in your prayers. She is having severe breathing issues. They have had to sedate and intebate her this week, and they are not sure what is going on. So please pray for her and their family. Thanks!

God Bless.

Saturday, April 22, 2006 11:19 AM CDT

FUN, EXCITING, JOYFUL!!! That only begins to tell you how much we are enjoying spring so far. Madison is walking all over the place. She can walk from the living room, down the hall, and into her room or whatever room she wants. She talks(babbles) constently. I can understand alot of what she says, but it is still not real clear to others. She does continue to make good progress with her speech. There doesn't seem to be much she doesn't understand. We have had to continue to spell things around her so she doesn't know what we are talking about. She is such a character. Madison can now identify about 14 letters and tell us what sound each makes. It is so amazing. Her developmental specialist and physical therapist are searching for things to try with her because usually she has the new task(s) mastered by or before the next session(1x/week). Madison continues to love to ride her bike. She loves walking around the yard picking all the dandelions. Madison is definitely an "ousid" (outside)girl. She has finally learned how to climb up her slide, but is still leary of sliding down by herself. When inside she still loves reading books. Her favorites include Dr. Suess' Foot Book, Nose Book, Hands,Hands,Fingers, Thumb, Jamberry, The Going to Bed Book, and Belly Button Book. These are just a few. Madison doesn't stop all day except for her nap and bedtime. She still loves her bath. She has absolutely no fear of water. She dunks her head under the water for 3-4 seconds at a time and then comes up just laughing. We can't wait to see her in the pool this summer.
Madison has begun to tell me she needs to go to the potty, but usually by the time she gets there it is too late. I am going to let her continue this until I am out of school for the summer and then we will make more of an effort to get her potty trained. She will also be walking even better which will help. Wow there is just so much to share.

Easter was a real joy. She loved it. It was a beautiful weekend and we got to spend it outside. A couple weekends prior to that we got to take her bike riding on the railtrail, and then play at a local park. No one was there and I just wiped everything down with germ wipes. She had a blast swinging and sliding.

I could go on and on. We are so very, very blessed. Hopefully we will get to let Madison finally meet some people this summer. Her restrictions are getting less, and we can be outside with people as long as they aren't touching and holding her and of course as no one is sick.

Medically, she is doing terrific. We are down to labs once a month and only doing a CBC. At the same time she gets her monthly IVIG and Pentamadine. Her weight was up to 19lbs. 13 oz., and she grew a 1/4 of an inch since last month. She is growing, but still quite the little peanut. Dr. K says it will still be awhile before she hits any major growth spurt.

Check out the new pictures. She is growing and changing so very much. Please keep posting and sending messages we love hearing from everyone.

God Bless.

Friday, March 24, 2006 9:48 PM CST

Believe it or not we haven't fallen off the face of the earth. We have just been soooo busy. I only have until the first week in May, and I will be done with my four online classes. I will be off for the summer the first week of June. Chad will be doing some traveling over the next few weeks as well. We are, however, really looking forward to this summer. We are hoping finally to be able to go some places and do some normal things.

Madison continues to do extremely well. She had her labs drawn and got her IV meds today. Her weight is the same as last month (19lbs), but she did grow an inch. Her bloodwork was fabulous.

Have I mentioned how amazing she is?!?!? She is now standing and taking 10 to 12 steps, climbing on and off the couch, crawling everywhere, and all by herself. She has gotten really good at feeding herself as well. She knows eight colors, can identify 4 letters of the alphabet, and can tell what sound 9 of them make. Madison loves to draw and watch her baby Eistein video - Head to Toes. She likes to watch it "again" "again". She still loves to read books. She knows which is her left foot and which is her right foot thanks to Dr. Suess The Foot Book.
She is riding her little "bike" up and down the hall, which she loves going backwards on. Madison is doing so much it is hard to get it all typed. How truly, truly blessed we are!!! Words can not express the joy she brings to us every minute of everyday.

Thanks to all who continue to keep Madison in your prayers and follow Madison's progress. Also to those who leave messages on the guestbook and send emails. It is so nice hearing from you.

God Bless.

Monday, February 13, 2006 8:49 PM CST

Hello everyone. Just wanted to update. Everything around here has been uneventful medically speaking. We don't do any med changes for a couple of months, and that will be stopping the antibiotic and the antifungal med. We do labs every two weeks now, and during one of those times she continues to get her two IV meds.

Now as far as our "normalizing" everyday life, it is extremely eventful. As I have said before, I am taking 4 online classes while teaching. Chad is very busy with work. And, well, Madison just never stops except maybe while she is sleeping. However, she is a tosser and turner. She is continuing to grow and gain weight, but she is still in 12 month clothes(our little peanut). If she continues at this rate, she may reach 18 month clothes by April. As with her toys, she has just as many outfits. But this is what girls are supposed to have--right?!? Madison is working on getting 6 teeth to come in. Once these are in she will have a total of nine.

Madison is beginning to become more verbal. She tries to say everything you ask, but she is still difficult to understand unless you're around her on a regular basis. Words that most people would be able to understand are hotdog, help, moma, dad, banana, pooh, ball, and Elmo. There are many more that we can understand. She continues to learn signs as well. We encourage her to say the words as she signs. She is starting to put two words together. Madison is not only crawling everywhere, but now learning to climb. She can stand independently for about 5 seconds at a time. She is still taking 4-5 steps by herself, however her confidence is building so we are expecting this to improve soon.

Madison just continues to amaze us. Her evaluation by the developmental pediatrician confirmed that she is quite bright. This was done when she was 19 months old. Her Visual reception was ranked at 20 months, Fine Motor at 21 months, Expressive language at 15 months, and Receptive language 28 months!!! Yes, 28 months. She is our bright, shining star!!! Her expressive is delayed, but only by 4 months. She is continuing to make remarkable progress in this area as well as in her gross motor. Both of these areas were affected by long term steroid use. She is still weak in her trunk and hips again because of steriods. We will just continue to watch these areas, but aren't major concerns since we continue to see such progress. As I have said before and will say again and again, Madison is amazing, perfect gift from God. Each day is a joy and a blessing. She has the sweetest, loving personality.

We want to thank everyone who continues to follow Madison's progress. We also appreciate the messages and emails.

God Bless.

Thursday, January 26, 2006 8:43 PM CST

Wow, it has been a long week. Everything is great, though. Madison's tests so far have all come back normal!!! We are sooooo very fortunate and blessed. Everyone was impressed by her at Duke. She received raved reviews!! We were able to stop some more meds. She will remain on the last immue suppressing med for at least 6 more months, however we will have a little freedom. So spring/early summer is still looking good for us to bring Madison out to atleast meet some people. We are starting out of the woods, but not quite there yet. If things continue on the current path, we will be there soon. Things are just going so smoothly at this point we don't want to mess anything up by doing something too quickly.

Thanks for continuing to follow Madison's progress, and for all the emails and messages. We appreciate you taking the time to write.

God Bless.

Friday, January 20, 2006 9:53 PM CST

Hi everyone. I am posting from Durham. Madison is here at Duke for her 18 months posttransplant studies. She had her EEG, VEP, and BAER this morning. We will most likely have the results on Monday. Please keep her in your prayers as she goes through her tests. After this visit we will come one time in the summer, and then only 1 time each year after that. I will be updating the site more often this coming week as we get results.

Also last week Madison took her first independent steps. She loves walking. She will take 2-3 steps and then sign walk again and then again and again and again. It is wonderful even though it wears us out.

I'll keep everyone posted.
God Bless.

Friday, December 30, 2005 6:07 PM CST

It has been a month since I updated, I know, but our everyday lives are becoming more and more normal. We are only doing lab work every two weeks. So there is not a lot to report on a weekly basis. All has remained stable. Her labs have been wonderful, and she continues to get her monthly IV meds. Madison has gained about 10 ounces since last month and grown a 1/2 inch. She is still petite, but heading in the right direction. On Tuesday we got to stop the steroid for the first time since November of last year. As long as we don't see any change in the slight rash she gets off and on, we will be done with it for good. We have also weaned the FK, which is another immune suppressing med. Spring is looking good for being off most meds. With these weans, her BP has been very good so Madison is only taking one BP med 1x/day.

I hope everyone had a wonderful Christmas. Ours was fabulous. Madison was a bit overwhelmed and got worn out, but had a good time. She loved everything she got (which wasn't much --haha)

Madison is crawling everywhere, and she is getting very close to take her first independent steps. Chad built her a set of parallel bars to practice on. It took her about a day to master them. She is soooo amazing. She got an Elmo couch for Christmas, which she can climb up on and sit all by herself. Madison is everywhere now. You can't take your eyes off of her for a minute. She is really catching up in the area of gross motors skills. To see and watch Madison you would never know she has Krabbe or that she has been through so much. She is so "normal".

As I have said before I will probably only update once or twice a month now. However, I will try to update pictures on a more regular basis. Please take a minute to sign Madison's guestbook or send us an email so that we know who has been checking in. Thanks.

Have a Happy New Year!!
God Bless.

Wednesday, November 30, 2005 9:13 PM CST

I hope everyone had a wonderful Thanksgiving. We were able to go to both Chad's parent's and my parent's house. It was nice getting out together as a family.

I took Madison Tuesday for her monthly meds and labs. It unfortunately took several (about 7) sticks to get the IV. If all we needed was blood, we would have had it with the first stick. But we needed the IV for the meds. However, afterwards, Madison was waving and playing with the nurses. Her levels were all good. Her hgb climbed again. It was 14.8 and her magnesium was 2.6, which it good especially since she is off the supplement now. Madison also gained 5 1/2 ounces this week. So if all remains well, we will wean meds again next week.

Madison has been crawling on her belly for a couple of months now. Today for the first time she crawled on her hands and knees. She has some perfecting to do, but she is definitely getting it. She is also cruising up and down the couch, and she loves walking behind her leapfrog walker. We went this past weekend to get a Christmas tree. Madison got to go with us, and she loved it. I will put some pictures up of her picking out the tree and decorating it. She had a great time. Christmas will be extra special this year.

Thanks for the continued support. We appreciate the emails and messages.

God Bless.

Wednesday, November 23, 2005 3:12 PM CST

I just wanted to take minute to wish everyone a very Happy Thanksgiving. We have so much for which to be thankful. Madison has done so well. We are so blessed to have such a precious miracle. Everyday she does something that amazes us. Many of these accomplishments are expected things that most babies/toddlers do. For us, each new accomplishment is truly miraculous. It is surprising how much of life we take for granted.

HAPPY THANKSGIVING TO ALL!!
CHAD, WENDY, & MADISON

Saturday, November 19, 2005 12:51 AM CST

Madison went Tuesday for her now bimonthly labs. Her hgb hit 14.2, which is the highest ever. (Normal range being 11.5 - 16.5) Her labs look great. We got to stop the magnesium supplement. Her pinkness on her legs looks better, but her arms are still about the same. We are going to continue the creams, and wait about 3 weeks before doing any med changes. She gained some weight again. She was 16 1bs. 7oz.(7.46kg), and she grew a 1/2 inch. We will take whatever we can get. She is such a little peanut.

Madison continues to crawl everywhere. So far she doesn't get into things she's not supposed to, but I know it won't be long. Nothing stops her. She moves things out of her way or crawls over them. The gate is now closed at all times that Madison is awake. As I have said numerous times before, she is soooo truly amazing and such a miracle. This week she started walking behind her LeapFrog Walker independently. We have to stay close still because it sometimes gets away from her. She pushes it and walks from one end of our living room to the other!! Chad and I took her to Sears this morning to have Christmas pictures done. We took the first appointment, and they had us in and out quickly. We used her blankets, so she touched nothing. Their next appt. showed up just as we were finishing, so Chad took her to the car while I placed the order. I will post these in a couple of weeks. Meanwhile I will get some new pictures up this weekend. I am going to try to capture the walking.

Our friend Aylssa got to go home from the hospital on Wednesday. Please continue to pray for her as she has a bit of journey left ahead.

God Bless.

Sunday, November 13, 2005 11:16 AM CST

Wow, I am really starting to get bad with my updates. There isn't as much to report on a weekly basis now that we go every two weeks for labs. Madison did get her IVIG and Pentamidine on Tuesday the 4th. It took three sticks, but the third IV held for the two meds. She doesn't need those again until the 29th. She does extremely well with being stuck, and she doesn't hold anything against the nurses. Her labs continue to be really good. We are weaning the magnesium and she will probably be off of it on Tuesday. We did make a "quick" over night trip to Duke this past Thursday. Madison's skin has been extremely pink which we were contributing to her good hgb of 13.5. However, her doctor here was becoming concerned. After several emails to Dr. K, we decided to just go down and let her see it for herself. She feels that part of it is a slight case of Graft vs. Host. She is not concerned, but it just tells us that we need to slow the wean of FK and steroid. Madison is on very, very small doses of each so no real side effects. So we are not going to make any med changes for 4 weeks unless something changes. We are starting to use protopic cream on her skin. The pinkness is mainly on her arms to her fingers, thighs to toes and on her face. It looks like a pink sunburn. The other part is just photosensitivity. Basically, her skin is very sensitive to light because of the meds she has been on for so long. We will also have to use a cream that has UVA/UVB protection. We are sitting tight on the meds, and as long has her skin doesn't get worse we will continue to wean the FK and steroid in 4 weeks. We go to clinic on Tuesday for labs.

Madison continues to keep us very, very busy. She crawls everywhere. She went from the living room through the kitchen and started down the hall yesterday. She has sitting up mastered. She is up and down all the time. She is still working on walking. She is doing really well when she holds are fingers. She "cruised" down the love seat this past week for the PT. It took several minutes, but she did it by herself. I think independent walking is just a few months away. Another really fabulous thing happened this weekend. Chad went to get her out of bed, and she was standing up in her crib holding onto the rail. Yes! She can pull herself to a standing position(at least in her bed because she can get a good hold on the rail). We have been working on her pulling to stand in other situations and she is close, but not quite there yet. She is continuing to amaze us.

I will keep trying to do better at updating. Please drop us a note too so we know who is stopping in to check on Madison.

Also Please keep our friend Alyssa and her family in your prayers. Alyssa is battling several issues.

God Bless.

Sunday, November 13, 2005 11:16 AM CST

Monday, October 31, 2005 3:22 PM CST

Here is the update I promised. As I said before we made it two weeks without a doctor visit. On Tuesday Madison went for her regular labs. They were able to stick her hand and draw enough blood for all her labs. This shows us her veins are improving now that she is on a lower steroid dose. We are still continuing to wean the steroid, and if all continues on the right path, she will be off of it in about 2 weeks. We are also weaning her FK506. This is the 2nd of 3 immune suppressing meds. We are hoping she will be off of it in about 8 weeks. Her blood pressure has continued to stay stable, so we have stopped one of two blood pressure meds. Her magnesium level has also improved with the FK wean and she is now down to 1/2 pill again. As we have weaned the meds, we have seen great changes in Madison. She seems like she feels better, and she has much more energy. She gained 3 1/2 ounces, so she is up to 16 lbs. 2.5 oz. We go this Tuesday because she is due for her IVIG and Pentamedine, which she gets monthly. Please pray they can get a good IV. If this is successful, we are most likely not going to put back any type of line.

We have recently been working on teaching Madison signs. She can do more, help, and thank you. She doesn't quite understand thank you yet, but she is ready for when she does. Our most exciting news is that Madison can finally go from lying down to sitting up all by herself. Chad went in the other morning to get her out of bed, and there she was--sitting up. How amazing is this!?!?! We are thrilled. I did get a gate this week. Madison now follows us into the kitchen and dining room if we leave her in our living room.
Her new game is patting her knees, then clap her hands, and finally snap her fingers. She can't really snap, but boy does she try!! Madison just keeps learning new things everyday. She never ceases to amaze us or make us laugh. God has really given us a special gift!!

God Bless.

Thursday, October 27, 2005 3:25 PM CDT

I apologize. I think this is the longest I have ever gone without updating. With being really back to work and having an active little girl, who only continues to become more and more active, well let's just say it is getting harder to find the time. We went two weeks without a doctor's appt. It was quite strange. We went Tuesday for her labs which were great. I will give a more detail update this weekend. I just wanted everyone to know we are doing well. I will also get some new pictures up too.

God Bless.

Wednesday, October 12, 2005 8:49 PM CDT

Madison received an awesome report on Tuesday. Her hemoglobin went up on it's own again. She was 9.6 last week and 12.0 this week. All her other levels were great. Her blood pressure has been very good lately, so we are weaning one of the two blood pressure meds. She should be off of it in about two weeks. We are also going to wean the steroid again this week. Since Madison's labs were so good this week, we don't have to do labs for two weeks!! If her labs remain stable in two weeks, we will wean the FK506 again. The next steroid wean will be to stop the steroid. This will hopefully be in about 4 weeks. Once she is off the steroid and FK many of her medications will stop as well. This will leave her on only on immune suppressing med. I am not sure at this point when she will get off the imuran, but hopefully soon too.

Madison gained about 15 ounces this week. She is now 15 lbs. 15 oz.(7.23kg). She is feeling great. Her official MRI and EEG report were normal. Her last culture didn't grow any bacteria. So we are continuing down a positive path. Please continue to pray for Madison. We are starting into the cold and flu season. Also as you pray don't forget to thank Him for all the wonderful things He does.

God Bless.

Wednesday, October 5, 2005 5:59 PM CDT

Madison did fine through her MRI and EEG on Monday. They were supposed to put a PICC line in while she was sedated for the MRI. They didn't get the whole thing coordinated, so it didn't get done(this ends up being a good thing). In the meantime the sensitivies came back on the infection and the oral antibiotics we started a week or so ago should have cleared the infection. So basically this confirmed the line definitely needed to come out. The bad thing about putting a PICC line in is that it could become infected also. After several emails and phone discussions, Dr. K came up with a new plan. We took the line out, but didn't put a new one back in. So for the first time Madison is without a line. The only thing we are using her line for is monthly IVIG and pentamidine as well as weekly blood draws. Her hemolytic anemia is no longer an issue, so the transfusion she required a month ago was due to the use of antibiotics and/or this infection. Her hemoglobin has remained stable this past weekend. We have begun to wean her FK506. If she has no rashes or other signs of GVH, we will wean again in 3-4 weeks. If at the end of this week she is still acting well, we will wean the steroid again. In 4-6 weeks we will decide on whether to do a line, a port, or nothing at all. Until that time we will have to do a couple of hand sticks to check her FK level until she is mostly off of it. Also we have to check her hgb and this can be done with just a heal stick. Once the FK and steroids are gone, that will leave her on only one immune suppressing medication. Also as she comes off the steroid and FK we will start weaning her blood pressure meds. Most of the meds she takes are due to the immune suppressing ones. So as they go so will the others. It is kind of like a domino effect. So at this point we are heading in a very positive direction. Please pray it continues.

Now the new things Madison has been doing. She can now walk with us holding her hands. She can hold up one finger when you ask her how old she is. She tries pulling herself up on her pooh chair, but still needs some help. When these steroids are gone, it will be just a matter of time and she will be everywhere climbing everything!!! Madison is babbling more and more. She is really learning how to communicate things verbally. She continues to pick up new animals sounds, and she tries to snap her fingers when we do. She will pat her chest when we tell her to "show us me". She loves portraits. I have pictures up all over the house including on the refridgerator. She waves at them all the time and then squeezes her chest because she wants to hug them. She also loves to give kisses. Madison is truly amazing to us. She is such a precious, precious gift. Please continue to keep her in your prayers.

God Bless.

Tuesday, October 4, 2005 9:50 PM CDT

Just a quick update. Thanks for all the prayers and messages. We got discharged this evening. Madison has continued to do well. We didn't pinpoint the cause of the seizure, but she hasn't had anymore. EEG, LP, and MRI were normal. Even though we had to stay in the hospital for several days, a few good things have come from it. We are going to get to take a few steps forward. I will give details tomorrow. I am tired and need to get some sleep. You don't get much in the hospital.

God is continuing to bless us over and over again. Prayer is a very powerful thing. Thanks for continuing to pray.

God Bless.

Sunday, October 2, 2005 8:26 PM CDT

Madison is still in the hospital. She had a CT scan which didn't show any infection in the brain. Also her LP didn't show any elevation in the white blood count. These are both good things. We are going to do a MRI tomorrow to make sure no infection has deposited in her brain. While she is still sedated from the MRI we are going to attempt to place a pic line. Because of the medications she is on her veins are very fragile. However, if that goes well and it is functioning properly, we will remove her central line. The pic line will be her temporary access. She is also scheduled for an EEG after the MRI. This just to be sure she isn't having any other seizure activity. If both MRI and EEG are fine there will be no need to start any seizure medication.

Hopefully once her line is removed we can get this infection under control. The rest of the plan will be determined once we have results back tomorrow. Madison is acting fine. She hasn't had another seizure since the one on Friday. She is eating, playing, and ready to go home.

Please keep her in your prayers tomorrow. She is going to have a long day. She will be sedated for most everything, but it is still alot to have to go through.
Thanks and God Bless.
Wendy

Friday, September 30, 2005 10:17 PM CDT

I know I promised my weekly update, but when you hear what has been going on you will understand the delay. Madison got a temp on Monday. I took her to Morgantown to culture her line. After some Tylenol she perked up. The doctor agreed to let me take her home as long as I would return if her fever returned. I put her to bed and an hour later her temp spiked again, so off to Morgantown to be admitted. They started her on two IV antibiotic after reculturing her line. By Tuesday afternoon, no fever and she was still a little peaked but feeling better. We stayed through Wednesday afternoon and still nothing grew in the cultures. We were discharged and things seemed to improve. Today after I got home from work, I took her to her weekly doctor's appt. He commented on her paleness, but otherwise thought she looked good. We decided to do a CBC. As I was fushing her line, she started waving her hands a little and leaned forward. At first I thought she was playing, but when I tilted her back, I saw her eyes rolling and pupils dialated. She then began to shake. She was having a seizure. It lasted a couple of minutes. When she came out of it she was fussy, but saying "ma,ma,ma....". So her doctor requested an ambulance and off to Morgantown again. She has been fine all evening. They have scheduled an MRI, LumbarPuncture, and EEG for tomorrow. Just a little bit ago we found that the cultures did start growing the gram positive again. So it is possible the infection has gotten in the spinal fluid and possible in the brain. So we will treat with a new IV antibiotic until we find out for sure tomorrow. That basically sums it up. Please keep Madison in your prayers. This stuff is very serious, but treatable.
God Bless.

Tuesday, September 20, 2005 8:35 PM CDT

I know I haven't been as good with the updates. I will try to get back to once a week. Well Madison finished one IV antibiotic for her gram negative infection on Friday. We had to stop the antibiotic for the gram positive infection once we found out the specific bacteria. The bacteria that is growing is found in the air we breath everyday. However when someone is immunocompromised they have difficulty handling it. So Madison is now on two oral antibiotics which she will have to take until her immune system recovers (April/May). So just a bump in the road. On a good note Madison's hgb went back up on it's own!!! So thanks for the prayers. This means the anemia is not an issue at this point. We get to continue to wean the steroid now. All her other levels have been good. She has to have a CT scan done on Thursday to see if any of this AFB infection shows up in her lungs, liver or speen. Even if something shows up we will still treat it the same. Also if something shows up we will do another scan in a few weeks to make sure it clears up. If nothing shows up then we know we caught it very early. Dr. K is not overly concerned. With treatment, Madison should have no trouble.

Madison is really back to her old self. She is very content. Her appetite is increasing. She loves hotdogs and chicken nuggets as well as anything we are eating. Madison is now drinking 12-14 ounces of pediasure in a 24 hour period on a regular basis. Her weight is hanging around 15 pounds 5 ounces (6.85kg). She has conquered two big milestones this past week. She can say "bye-bye" quite clearly, and she is now belly (commando) crawling all by herself. She goes about 4-5 feet in a matter of seconds. It is awesome and amazing. I am going to buy a gate very soon. At this rate she will find the steps before we know it. Even with the double infection and the long term antibiotics and other meds, Madison continues to do tremendously well. God has blessed us over and over. We appreciate the continued prayers.
Please take a minute and sign her guestbook. We really enjoy seeing who has stopped by to check on Madison's progress.

ENJOY THE NEW PICTURES!!!
God Bless.

Wednesday, September 14, 2005 7:10 PM CDT

Wow! It has been very busy around here. Before I go into all that I must take a minute to say Happy Birthday to Grace. She would have turned five years old today. We greatly miss her even though we know she is in a much better place. I know she continues to smile down on us. HAPPY BIRTHDAY !!!

Well Madison has now come down with a second infection. This one a gram positive. We don't know a specific bug yet, so until we do we are doing a second IV antibiotic. It gets a little crazy because it takes two hours for it to run and she gets it 3 times a day. So I am up late and up early. She finishes the first antibiotic on Friday and the other next Thursday. Other than this "bump" she is acting fine. She is still very happy and content.

To be very honest, I am a bit tired today so you only get a short update. I will try to update this weekend as well as add pictures. Please keep praying for Madison. Thanks.
God Bless.

Saturday, September 10, 2005 3:42 PM CDT

On Tuesday Madison got her monthly meds. Her labs all looked good. She had gained weight and grew. I was able to go to work on Wednesday and Thursday. Things seemed to be going well. Then Friday morning she developed a fever. Other than having the fever and her crankiness, there wasn't anything apparently wrong. We had to go to morgantown to culture her line. So far nothing has grown. Her hgb is trending down a little, but it doesn't seem to be the anemia this time. We really won't know for sure for a couple weeks. At this point is continues to be a waiting game. On a good note she is back to herself today. No fever and she is happy.

She has definitely grown. We had a walker we got out for her a couple months ago and her feet were about an inch from the floor. Today I tried it again and not only can she touch the floor, but she can push herself backwards. She goes backward from one end of the kitchen to the other. She is quite proud of herself. Madison is also trying to stack blocks now. And she can finally say "BABABA..." I think because of the steroids, she had a hard time with this sound. But since she is now on such a low dose, she is getting stronger. Plus she is losing the steroid face. I think with her face slimming down it is easier for her to make sounds.
Thank you all for the continued prayers. Please pray this antibiotic clears up the infection and that the anemia doesn't come back. Also be sure to sign Madison's guestbook. We love hearing from everybody.

Friday, September 2, 2005 7:30 PM CDT

We have made it home from the hospital. Madison is on an IV antibiotic three times a day for 2 weeks. We will take her back on Tuesday for labs, another culture, and her monthly meds. Everything is well overall. You wouldn't know Madison even has anything. So hopefully after Tuesday, I will be able to finish out the week at work.

I hope everyone has a great weekend. Please keep praying for Madison - specifically that the infection clears up quickly and that the anemia is not back.

Thanks and God Bless.

Thursday, September 1, 2005 8:56 PM CDT

Well we are in the hospital. Her culture grew both gram positive and gram negative rods. The gram negative is an automatic hospital stay at Ruby. Dr K said she wouldn't have admitted her but we aren't able to play by her rules here in WV. They have started antibiotics, and I am hoping to be out of here tomorrow evening. I can do IV antibiotics at home. You would never know she has an infection. She isn't symtomatic. We also gave her a blood transfusion. It is possible that the infection brought her hgb down. Let's pray that this is the explanation and that the anemia isn't back. Sorry for such a short update, but I am a little tired.

I'll keep posting updates as things change. Thanks for all your continued prayers. I just have to keep reminding myself that God is in control. We just have to give everything over to Him, and He will take care of it all!

God Bless.

Wednesday, August 31, 2005 5:18 PM CDT

Well, so far nothing has grown in Madison's culture. Her hemoglobin dropped again today. It was 8.4, so it looks like we will be transfusing tomorrow. This is the first one since May. We are not increasing the steroids yet. Dr. K says that a mild virus could have triggered this and that we just need to wait and watch. (Another lesson in patience) Overall Madison is doing ok. She is a little cranky and just not quite herself, but not very symptomatic. I'll keep everyone posted. Please keep praying for Madison to get over this soon.

God Bless.

Tuesday, August 30, 2005 6:34 PM CDT

Well last week was uneventful. Madison's labs were all great. I started back to work, and Madison knows it. She decided the best way to object was to have a fever. On Thursday, she developed a low grade temp. She just didn't feel very good the whole day. We checked her levels again, but all was still fine. We just watched her and her temp broke that evening. She acted fine over the weekend, but Sunday night and Monday night she was very restless. She was up almost every hour. One good thing is she is still eating very well. We took her this morning for her weekly levels. When they took her temp it was 99.5. Her hgb dropped from 11.6 last week to 9 today. So, we cultured her line and gave her an antibiotic. We know just have to wait to see if anything grows. We are taking her back tomorrow to recheck her hemoglobin, and for her to get second dose of antibiotics. We are praying the drop in her hgb is due to a "bug" and that it is not the anemia issue returning.

On a good note, Madison is now 25 3/4 inches and she gained 6 ounces this week. We are finally back at 15 pounds!!!

Please pray this is just a little virus or bug and not the hemolytic anemia. I will update tomorrow when I know something.
God Bless.

Wednesday, August 17, 2005 7:24 PM CDT

Madison went yesterday for her weekly labs, weight, and height. All her levels have remained stable, except her FK level. This is one of the immune supressing meds. We have to keep it at a theraputic level. It was a little high, but all we do is reduce the dose and check it again next week. This happens periodically with no explaination. That is why we must check it weekly. Her hgb was 11.6, so still stable from last week. Madison lost 2 ounces this week, but it appears she has grown 1/2 inch. Like I said before, we will check again next week before I completely believe it. I had the nurse measure her twice. Her head circumference is increasing too. This means her brain is also growing. Madison's eating is beginning to increase. She is finally drinking some Pediasure during the day. She drinks about 10 - 12 ounces in a 24 hour period. Our goal right now is about 18 ounces. She still continues to eat everything we do, but there just aren't alot of calories in it. The only things I have found she doesn't like are applesauce, apple juice, and baked/mashed potatoes. However she likes potato chips, french fries, and granny smith apples. I think it is a texture thing. She never really liked baby food. She wants things she has to chew.

She still only has the two bottom front teeth. Hopefully as soon as she is off the steroids, the others will pop through quickly. Madison's personality is really developing. She has started into the "stranger anxiety" phase. It's not too bad so far. It is a very "normal" stage. She is doing so many new things. I can't always remember what I have posted, so I apologize if I repeat myself. Madison loves singing "Itsy-bitsy Spider". As we sing it she brings her hands together for the spider part and then waves her open hands for the down came the rain. It is so wonderful to watch. She can now press "Baby Tad's" hand until she gets the "Itsy-Bitsy Spider" song to play. She loves music. She also likes the Baby Einstein videos. She gets so excited when the puppets are on the t.v. Madison's favorite thing still is reading books. This of course makes us very happy. She has many animal books. She is doing more animal sounds. She is also saying duck. The d isn't always there, but you know what she wants. We started working on her pointing instead of using her whole hand to touch something about two weeks ago, and she is really getting it. She loves to point at our noses. She is also starting to point at the pictures we ask her to. Madison has begun bringing her hand to her mouth when she blows kisses. Now we just have to get her to "throw" them.

We are still working on mobility. She is still trying to belly crawl, and we are trying to continue to encourage her to roll multiple times to get things she wants. She is so used to having everything handed to her that she now expects it. So we are having to teach her she can get things all by herself. We know she can do this because I have caught her doing it when she thinks I'm not watching. We are still working on sitting to stand and standing. Again, until she is completely off the steroids, she won't have the strength to take off on her own. So we are working on the skills she will need, so as soon as the strength is there, she will be on the go!!

I know this is a long entry, but it is just so exciting to us to see her doing all these things. These are all "normal" things. Each thing is a blessing and a miracle from God. She is the joy of our lives. She makes us smile all the time. We love to listen to her in her room of a morning playing in her crib. She babbles, plays her music toys, and kicks her legs. She is always pleasant when she wakes in the morning. She loves her bath time at night. She can really splash. I poured a cup of water over her head the other night. It went down her face and in her mouth. She got the most startled look on her face and then she looked at me. I just started to laugh, ant then so did she. Needless to say I started something. Now she wants water poured on her head all the time. She gets excited and just splashes like crazy.

I have enjoyed my summer so much. This is precious time that I get to spend with her. I go back to work next week. It is hard to believe the summer is gone. Chad and my mom will be watching her like before, so she will be in great hands. Who knows, Madison may be ready for a break from me!Poor thing, she has been stuck with me all summer(haha).

Please continue to keep Madison in your prayers. She has been doing extremely well. We appreciated everyone following her progress. Also thanks for signing her guestbook.

God Bless.

Friday, August 12, 2005 9:40 AM CDT

Good Morning! Here is a quick update. Not too much is going on, which is wonderful. All Madison's labs were good this week. Her hgb was 11.7. We started the next wean of steroids. We will do this new dose for a month before weaning again. Madison did gain an ounce this week, but her height is still 25 inches. The extra 1/4 of an inch last week wasn't accurate. That is why I don't believe it until I see it a couple weeks in a row.

We go back to the doctor on Tuesday for labs. I hope everyone has a great weekend. Thanks for leaving us messages. We enjoy reading them.

God Bless.

Tuesday, August 2, 2005 9:01 AM CDT

Wow, two weeks since my last update. My apologies. Everything is still going very well. Madison's hgb last week was 12.3 and 12.7 today. It appears we are getting past the anemia issue. I spoke with Dr. K last week to go over all of Madison's 1 year studies. She is very pleased with the results. Everything is normal basically. For those who want numbers: her potein was 74, donor cells greater than 98%, and enzyme level 5.3. Dr. K at this point wants us to slow the steroid wean a little more. If we stick to schedule, she will be off the steroids the first week of October. Once she is off steroids we will wait about three months, then if all is still stable we can begin weaning the other two immune suppressing meds. So at this point we are looking to be off all meds sometime around April.

Madison's actually gained weight this week. She had been trending down slowly, but today she was up three ounces. (14lbs. 10.5 oz.) We also measured her at 25 1/4 inches, which means she grew 1/4 inch, but I will have them check again next week. Sometimes if she is not in the right spot it can be slightly off.

Madison is doing great developmentally also. She is still working on the crawl, and she is standing for longer periods of time. Her wave is changing. She used to wave by opening and closing her fingers, but now she is starting to wave with an open hand. It is fascinating to us. She is identifying more objects. When you ask where a certain thing is, she can usually find it. Or when you ask her if she wants her bear and that isn't it, she keeps reaching until you get what she does want. She still loves her books. When her developmentalist comes we fill out a checklist on her development and except for the fact she isn't crawling (YET) right now she is right on target. There are even a few things where she falls above level.
She is still sleeping in her room, in her own bed. She wakes up three to four times a night. I just have to give her her bottle, and she falls back to sleep. She takes two - three short naps through the day. I have been taking her everyday to the local park and we walk a mile. She likes it and it does me good. I am quite out of shape.

Well Madison is calling. Her short nap is over. Thanks again for following Madison's progress. Please sign her guestbook to let us know you stopped by. God Bless.

Friday, July 22, 2005 3:30 PM CDT

Just a quick update. Madison's hgb was down a bit but still good (12.0). Her weight was also down. We will just keep an eye on it. All her other levels are good. She goes back next Tuesday for her labs and weight check.

Madison for the first time this past week is starting to try to pull herself forward when on her tummy with her head up. We let her push against us with her foot. She watched her first baby Einstein video. It kept her attention much longer than I thought it would. When certain music would play, she clicked her tongue and bounces herself. When she sees flowers or hears the word flower she makes a sniffing sound. She has a first words book. When she sees the bear, she growls. When she sees the duck, she quacks and so on. It is amazing. She continues to do new things all the time.

Thank you for all the continued prayers and messages.
God Bless.

Saturday, July 16, 2005 11:58 AM CDT

Just a quick update to Wednesday's entry. Madison had her MRI and lumbar puncture Thursday morning. All went smoothly. Her MRI results were normal!! And her protein level was stable (74). We are still waiting for her BAER results. We are so thankful for such good results. God continues to bless us. We will continue to do labs once a week as well as monitor her weight. At this point we will be happy if she maintains her current weight. Again thanks for the continued prayers. God Bless.

WEDNESDAY, JULY 13, 2005

We arrived here at Duke on Sunday evening. On Monday Madison had her Echocardiogram and Pulmonary Function. The Echo showed that her heart is normal. There is a little thickening from long term use of steroids, but this will go away. The Pulmonary showed her lungs are functioning normally also. Later in the afternoon she went to the eye doctor. The optic nerve is wonderful and normal. He said it could look better.

Tuesday morning Madison had her EEG, VEP, and BAER. The EEG last time showed a little slowing but was normal this time. We are waiting for the other results. We then went to clinic, and Madison got her monthly IVIG and Pentamidine. She also had to get a dose of Magnesium since she was a little low. Her hemoglobin was 13.3, which is spectacular. We met with her primary doctor around 7pm. She is extremely pleased with Madison's progress. We are still going to wean the steroid, but at a slow rate. Even though she is on a low dose, if we wean too fast we could be right back where we were with the anemia issue. So it looks like two months to come completely off the steroids, then we can begin to wean the other two immue suppressing meds. So unfortunately the earliest Madison will be off the immune suppressing meds will be about 8 months. This is not uncommon. So we will still have to be extremely careful and contiune to keep her isolated. This is a little disappointing, but we must keep looking at the bigger picture. The meds will go away, and so far all her test results are normal. And that is what is important. Everyone will have to continue to be patient. Trust me, we want to get out and let Madison to met everyone too.
Today we went to see the pediatric developmentalist. She is also thrilled with Madison's progress. She is on target in most areas. As I have said before, her gross motor is delayed. She is getting stronger, and she gave us suggestions on how to help make her even stronger. Her speech is also slightly behind. Nothing to be overly concerned about, but we need to stay on top of it. Her height and weight are still issues, but that is steroid related. She will catch up, but it just takes time. Other than these few things, she is doing great.

This afternoon we had the nerve conduction study. Last time there was slowing in one area, but still in the normal range. This time that has improved. However another area showed a little slowing, but is still within the normal range. It is not uncommon for these results to fluctuate. The overall results are in normal ranges.

As you can tell we have had a busy three days. Madison has handled it all very well. God has truly given us a miracle girl (I can't really call her a baby anymore, she is becoming so grown up.) Thank you for all your continued prayers. We have the MRI and Lumbar Puncture tomorrow morning and then we head home. I will update when I get home the remainder of the test results. I apologize for any typos. The days have been long.
God Bless.

Wednesday, July 13, 2005 1:39 PM CDT

We arrived here at Duke on Sunday evening. On Monday Madison had her Echocardiogram and Pulmonary Function. The Echo showed that her heart is normal. There is a little thickening from long term use of steroids, but this will go away. The Pulmonary showed her lungs are functioning normally also. Later in the afternoon she went to the eye doctor. The optic nerve is wonderful and normal. He said it could look better.

Tuesday morning Madison had her EEG, VEP, and BAER. The EEG last time showed a little slowing but was normal this time. We are waiting for the other results. We then went to clinic, and Madison got her monthly IVIG and Pentamidine. She also had to get a dose of Magnesium since she was a little low. Her hemoglobin was 13.3, which is spectacular. We met with her primary doctor around 7pm. She is extremely pleased with Madison's progress. We are still going to wean the steroid, but at a slow rate. Even though she is on a low dose, if we wean too fast we could be right back where we were with the anemia issue. So it looks like two months to come completely off the steroids, then we can begin to wean the other two immue suppressing meds. So unfortunately the earliest Madison will be off the immune suppressing meds will be about 8 months. This is not uncommon. So we will still have to be extremely careful and contiune to keep her isolated. This is a little disappointing, but we must keep looking at the bigger picture. The meds will go away, and so far all her test results are normal. And that is what is important. Everyone will have to continue to be patient. Trust me, we want to get out and let Madison to met everyone too.
Today we went to see the pediatric developmentalist. She is also thrilled with Madison's progress. She is on target in most areas. As I have said before, her gross motor is delayed. She is getting stronger, and she gave us suggestions on how to help make her even stronger. Her speech is also slightly behind. Nothing to be overly concerned about, but we need to stay on top of it. Her height and weight are still issues, but that is steroid related. She will catch up, but it just takes time. Other than these few things, she is doing great.

This afternoon we had the nerve conduction study. Last time there was slowing in one area, but still in the normal range. This time that has improved. However another area showed a little slowing, but is still within the normal range. It is not uncommon for these results to fluctuate. The overall results are in normal ranges.

As you can tell we have had a busy three days. Madison has handled it all very well. God has truly given us a miracle girl (I can't really call her a baby anymore, she is becoming so grown up.) Thank you for all your continued prayers. We have the MRI and Lumbar Puncture tomorrow morning and then we head home. I will update when I get home the remainder of the test results. I apologize for any typos. The days have been long.
God Bless.

Wednesday, July 6, 2005 8:54 AM CDT

Good morning! Madison continues to amaze us. Her hgb was 13.1 yesterday, and all her other levels are great. She is over her ear infection/stuffy nose. Chad and I are almost over ours too. Madison has basically maintained her weight again for the 4th week in a row. She only lost a 1/2 ounce, which is wonderful. She was 15lbs. 1 ounce. We are continuing to follow our steroid weaning schedule. We reduce it again next week. Her appetite the last few days has increased some. She is eating more solids, but now I need her to drink more pediasure. It has more calories than the solid food. Another good thing is that for the first time in several months, it appears she has grown a 1/4 inch. She is now 24 3/4 inches(62.9cm). She is a little peanut, but that again is due to the long term steroid use. So she is still wearing 6 - 9 month clothes.

Please keep Madison in your prayers next week. We head back to Duke for her 1 year studies. Even though Madison's tests have basically all been normal so far, it is hard not to worry. If these studies are fine, we don't have to go back for 6 months. We will also get a better idea of when she will begin coming off the other two immune suppressing meds.

Thanks again for all the prayers. Please sign in to let us know your checking in.

God Bless.

Thursday, June 30, 2005 12:33 AM CDT

Please accept my apology for not updating sooner. Madison went for her weekly check up last Wednesday. Her allergies started acting up. By Friday, she was quite stuffy and had a cough. I took her back to the doctor, and it had turned into the start of ear infections. We started an antibiotic and decongestant. We caught it early. She never even developed a fever. However, she thought that if she was going to be sick, mom and dad needed to be sick too. So Chad and I got to do antibiotics also. We are all getting better. We all are still coughing a bit, and just a little stuffy.

Despite all this, Madison's counts are still great. Her hemoglobin was 13. This is the highest she has ever been on her own. We are still weaning the steroid. Even with the wean, she has maintained her weight for the 3rd week in a row.

Madison continues to learn new things every week. She is now growling like a bear, and will shake hands. I will get a picture of her doing her bear imitation soon. She is also getting stronger. Her standing has greatly improved. She can stand for several minutes with minimal support. She is also pushing more with her arms when on her belly. Also, Madison is rolling all over the floor. I am anticipating that she will be on the move in the matter of a few months.

Thanks for continuing to follow Madison's progress. She is such a miracle. Please be sure to sign her guestbook. We still enjoy reading the messages.

God Bless.

Tuesday, June 21, 2005 9:22 AM CDT

Madsion is so amazing. The way the body works is fascinating. Madison's hgb was 12.2 today!! Her retic count has gone back down, and is almost in the normal range. Hopefully the antibodies are mostly gone. We will do a blood test next week to see. Madison did maintain her weight this week. She is 6.88kg(15lbs. 2.5 oz.).

On Saturday, we finally got to celebrate Madison's birthday. We had it at my parent's house outside. Madison had a blast. She loved all the attention. We did the party in Elmo, which she loves. E-L-M-O (YMCA) Elmo is her favorite. She gets excited when we get him out and push his hand to sing. We let her do the "smash cake". Now some kids don't like to get messy, but Madison put the smash in smash cake. She loved the cards as much as the presents. See, she really likes books and she must have thought the cards were books. I will get some birthday pictures posted soon for all to enjoy.

Thank you all for your continued prayers. God has been so good to us. Madsion is a precious blessing. Please continue to pray for our friend Alyssa. She is having to deal with several issues right now. Thanks.

God Bless.

Tuesday, June 14, 2005 1:34 PM CDT

Well, Madison has done it again. Her hemoglobin has gone up on it's own again. She was 11.3 today. Needless to say she is very pink. It looks like she has laid out in the sun. Dr. K is very pleased with this number. We are weaning the steroid again but very, very slowly. And with that Madison is losing weight. She lost about 6.5 ounces from last Monday. So she is now 6.88kg (15 lbs. 2 1/2 oz.) This is expected because of weaning the steroid. She is now on pediasure instead of formula because it has more calories per ounce. She just doesn't have a big appetite. She loves to eat what we are eating, but she doesn't get enough calories from it. Dr. K says she has some steroid weight to loose, and not to worry at this point. But please pray she doesn't loose a lot of weight.

Madison continues to learn new things each week. She can show you her teeth and her hair. She can say "yuck" sounds like "uckkk". We are working on duck and quack. She tries but isn't quite there yet. She reaches her arm out for what she wants and grunts. I say "tell me what you want", and she babbles. Her developmentalist doesn't want her grunting for things. She will grunt for me to pick her up, but I tell her to say "up, mommy". She says, "mum,mum". So she is learning. It is quite fascinating how quickly she picks up on things.

She is spending more time on her belly, and getting better at scooting. She is holding her head up longer, but still doesn't have the endurance needed to crawl. Hopefully we will continue to wean the steroid. Once she is off of it and gains strength, Watch Out! She will be on the move. I am so thankful that developmentally her gross motor is her only delayed area at this time, and we know it is caused by long term steroid use.

Finally, I took Madison out to my parent's house to go "swimming". We got a baby pool and put it on the deck beside their pool, filled it with a couple inches of water, and put her in it. She loved it. She splashed, squealed, laughed, and just got plain excited. I will get some pictures posted soon. For those wondering how I did this with a central line, Glad Press-n-Seal and Co-flex. It kept her cap, line, and dressing completely dry. I can email a picture if someone wants to see how I did it.
Again thanks to everyone for your continued prayers, emails, and messages.

God Bless.

Monday, June 6, 2005 7:42 PM CDT

Just a quick update. Good news! Not only did Madison NOT need blood again today, but her hgb went up on it's own. She went from 9.0 to 9.5. This is the first time since Christmas. We may be getting to the end part of the anemia problem. Let's pray she stays stable or continues to go up. Also her weight has stayed the same.

Thanks for all the continued prayers. They are working.
God Bless.

Saturday, June 4, 2005 4:44 PM CDT

Well, Madison's hgb has continued to trend down, but we still haven't had to transfuse. If she makes it to Wednesday, it will be three weeks since her last transfusion. At this point the anemia is our main issue. The other issue is her appetite. She isn't eating very well, so we have switched from formula to pediasure. She had lost 6.5 ounces, but on Tuesday she had stablized. She is now at 15 pounds 10 ounces (7.02kg). The pediasure has more calories per ounce so she is taking the same amount just getting more from it. She continues to try new food all the time. She wants "big people" food, not baby food. Unfortunately there aren't many calories in what she eats. We will check her levels and weight again on Monday.

Madison now calls our dog by smacking her lips and says "dah". She loves dogs. Unfortunately she can't get close, but she still enjoys watching them. She is really starting to make connections between words and objects. If you ask her where Elmo is she looks until she spots him and then grunts and reaches for him. She knows her stuffed chicken, abc ball, and several other things. She can roll a ball back and forth with us now and just loves it. She gets quite excited and is very proud of herself. Madison is always clapping for herself.

We are still working with Madison going from a sitting position down to her belly and then crawl to a toy. She isn't "nose-diving" as much and she gets her legs scooting. Her biggest problem is realizing she has to keep her head up while scooting, but we are getting there. Her crawling skills are there just emerging slow, but this again is due to the long term use of steroids.

She discovers and learns new things every week. Madison, as I have said numerous times, amazes us everyday. Thanks for all the continued prayers, emails, and messages. Also Madison was part of the study that came out in a recent issue the New England Journal of Medicine. I called and they mailed me copy to include in her scrapbook.

God Bless.

Monday, May 30, 2005 9:39 PM CDT

Tuesday, May 31, 2005

HAPPY BIRTHDAY MADISON!!!!

It's soooo hard to believe that it is May 31. Madison has had a long first year, but has faced it with great strength. Despite the roller coaster ride we have been on, we have been tremendously blessed. We thank God for our little miracle. Madison is a miracle everyday. We also want to thank everyone for their continued prayers and support.

I will post again on Wednesday. I am anticipating that Madison will get blood today, so it will be a long day. Please pray she continues to hold her blood longer and longer, and also that she maintains or gains some weight.

THANKS.
God Bless.

Tuesday, May 24, 2005 4:16 PM CDT

Good News!! It has been six days since Madison's last transfusion and today her hgb was 12.3!!! We haven't seen it stay this high for this long in a while. We don't have to check levels again until Tuesday. This will be the 2nd week we get to go a whole week without checking her hgb. I believe this is an indication the new medicine is working, and we get to continue to wean the steroid. Her white count is still in the normal range (6.8)so no more infection. All her other labs are remaining stable.

Madison's newest "tricks": When you ask her what a cow says, she says "MMMMMM". She hasn't got the "ooooo" part yet but is getting there. Also when you ask her what a pig does, she wrinkles up her nose and squints her eyes and blows air in and out of her nose. How I wish I could put video on her web page. I will try to get a good snap shot of her doing this.

Madison did lose 6.5 ounces this week. (7.25kg down to 7.02kg) This is due to weaning the steroid. To try and compensate for the weight loss, we are going to try her on pediasure. Pediasure has more calories per ounce than her formula. Also once she is off the steroid, she will have an increase in both muscle and bone. The only thing with Pediasure is that it is milkbased. Her current formula is lactose free, so pray her belly will deal with it fine. She eats ice cream, yogart, and Mac and Cheese with no problems, so it should be fine if I introduce it a little at a time. We have anticipated this weight loss, and actually it came later than expected(which is a good thing).

Please continue to pray for Madison as well as all of Duke's children. So many of them are dealing with serious issues. We have been so very fortunate that Madison's issues have been mild overall.
God Bless.

Wednesday, May 18, 2005 6:49 PM CDT

Well, Madison did need blood today. Her hgb was 8.3. Her wbc was 10.4 which is normal, and nothing has grown in her culture. So we don't go back until next Tuesday!! All her other labs continue to be stable.

Guess what?!? They're finally coming!!!! Her first two teeth are just about to pop through. Since Madison and I were in the clinic from 8:30 to 3:30, I got a little bored. I had been feeling for them over the last couple of weeks, but really didn't feel anything. But when I looked today, there they were. It is soooo exciting because they told us it may take longer for her teeth to come in because of some of the meds.I will try for a picture as soon as they are all the way in.

I will post again after her Tuesday visit unless something pops up before then. Have a great rest of the week and weekend.
God Bless.

Tuesday, May 17, 2005 7:24 PM CDT

Madison has gone over a week without needing blood. She is trending down, but much slower rate. We will check her hgb in the morning again. She will most likely get a transfusion then. She is maintaining her weight even with weaning the steroid. We will also know tomorrow if her "bug" is gone. We cultured her line on Monday.

Other than the anemia, Madison is doing well. She is waving bye-bye and blowing kisses. She wants to eat everything we are eat. She loves Cheerios now. It is hard to believe she will be a year old at the end of the month.

I will post more after tomorrow's visit.

God Bless

Monday, May 9, 2005 8:37 PM CDT

It's amazing how time goes by so quickly. I didn't realize it had been almost a week since my last update. Between work and doctor appts. it gets a little crazy sometimes. Madison is doing well. She is still on her antibiotic through her line twice a day. I give it to her before I leave for work in the morning and then again in the evening. She got blood on Friday. She made it a whole week!! We will go tomorrow to check all levels. I don't think she will need blood until the end of this week or the beginning of next.

We are continuing to introduce more table foods. She wants to eat everything we do. Some of the things she has had are chicken with rice, meatballs, and yogart. I can't remember if I mentioned she loves strawberry ice cream. Today she learned how to drink from a straw. We bought her the Juicy Juice box drinks. She loves them and is so proud of herself when she sucks the juice through the straw. She claps after each drink. Also Today she began push up on her arms while on her belly. This is the first time we have really seen this. I hope this means she is getting stronger because she is feeling better. She also tries scooting towards toys, however she has also figured out that she can pull the blanket towards her to get the toy and therefore not have to work as hard. She babbles constantly now with her dada's, mama's, squeals, and laughs. Madison continues to amaze us everyday.

I hope all moms had a wonderful Mother's Day. Thanks to everyone for your continued prayers, emails, and messages.

God Bless.

Tuesday, May 3, 2005 8:27 PM CDT

Just a quick update. Madison's hgb dropped from 12 on Saturday to 10.2 today. So she is going a little longer than before. It is too soon to determine what this means. We will check her levels again on Friday. It would be great if she goes more than a week without needing blood. She's still getting her IV antibiotic twice a day. Madison is really acting like herself now. She is smiling and playing all the time. She is starting to show her temper when she doesn't get her way. Tonight she ate baked steak and mashed potatoes with us. She loved it. I will try to add pictures over the weekend. I am going to attempt to go back to work tomorrow.
Thanks for all the continued prayers.

Saturday, April 30, 2005 7:56 PM CDT

We are home from the hospital. Madison is on an IV antibiotic here at the house. I give it to her 2x/day. She is really acting like herself now. We will continue to watch her hgb closely. I can now tell by how she acts and physical changes when she is dropping. We are hoping she goes at least three days without needing blood. On Tuesday she will get the fourth dose of a new med, and we will check all her levels. Of course if her hgb is down she will get blood also.

Well I have unpacking and house cleaning to do. With abruptly leaving and being gone for two weeks the house looks like ... well you can imagine. I will update Tuesday unless changes occur before then. Thanks again for your continued prayers, email, and messages.

God Bless.

Thursday, April 28, 2005 5:14 PM CDT

Madison received her blood overnight. She perked up a little, but something was still not quite right. We had already started an antibiotic, then this afternoon we found out she has a little bug. So we have started a second antibiotic. They are still watching the culture. Hopefully by tomorrow evening we will know the exact bug so we can use an antibiotic that is more specific. She seems to be feeling better than yesterday, but she has the "I don't feel good, but want to look". We will probably be here through Saturday. We are going to watch her levels and make the appropriate med adjustments.

Thanks for your continued prayers, emails and messages.

God Bless.

Wednesday, April 27, 2005 11:07 PM CDT

Let's start with the good news. We made it home to Fairmont around 4:30 today. It goes downhill from there. I'll try to make this a shortened version. Madison's hgb on Tuesday had dropped to 8.2 so we transfused. She was acting good that evening and Dr. K gave us the ok to come home. On the way home Madison started getting very fussy. She became a little sick at her stomach, and then I noticed her seeming a bit pale. Before heading to the house I went to her doctor's office in Fairmont to check her hgb. It wasn't as high as we thought it should be so we went home, unpacked and repacked a few things, and headed to Morgantown. Her hgb is down and her white count is up. So we are waiting for blood right now. It takes several hours to find a match for her since she has some many antibodies. We have started an antibiotic just in case her cultures come back positive. She has finally settled down and went to sleep. Hopefully she will sleep until the blood arrives. Usually after the first hour of the four it takes to administer it, she starts feeling better. I hope this all makes a little bit of since. It is late and has been a long day. Please continue to keep Madison in your prayers.

God Bless.

Monday, April 25, 2005 10:58 AM CDT

The weekend has been quiet. Madison's hgb dropped from 12.5 on Thursday to 11.5 on Saturday. This isn't a major drop, so we get to wait until tomorrow to check her level. If she continues to drop at this rate, she may not need blood until the weekend. The new med we started can take up to 4 weeks before we see the affects of it. So the longer she goes without needing blood the better. Overall she is continuing to do well. Her nine month studies are continuing to come back normal. We did her nerve conduction this morning and should have results this afternoon. I will keep the updates coming. Please continue to keep Madison in your prayers.

Friday, April 22, 2005 3:01 PM CDT

Madison's EEG, VER, and BAER came back normal. We are so very grateful. It is a true miracle to see normal test results. She has two more tests -- nerve conduction and echocardiogram. We will do these on Monday. She will get one more dose of the new med Tuesday. Dr. K wants to make sure she has no bad reaction to the med, and then we will hopefully be heading home Wednesday.

Madison has been doing better the yesterday and today. Her cold/allergies are still annoying her, but she is dealing better with it. We will check her HGB tomorrow, and make decisions for the weekend based on the results. Hopefully she won't need blood for a while. The longer she goes without needing transfused the better. Madison's weight is staying stable. She only lost about 10 ounces despite the events of this last week.

Please continue to pray for Madison. Also for our friend Alyssa. She still needs to gain weight!
Thanks.

Thursday, April 21, 2005 7:50 PM CDT

Everything seems to be settling down. Madison's hgb was 12.5 which is really great. We will check it again Saturday. It would be amazing if we didn't need blood over the weekend. We go to clinic tomorrow for another dose of her new med. It takes 3 hours to administer it.

Madison's MRI continues to be normal. Her protein level went up a little, but nothing to be concerned with. They say it will fluctuate. We are still waiting for EEG, VEP, and BAER results.

We think that Madison is dealing with allergies rather than a cold. The pollen is very thick down here, and benedryl is working well. Her voice is still hoarse from being intubated during her surgery, but she is acting more and more like herself.

Thanks for the continued prayers, emails, and messages.

Tuesday, April 19, 2005 8:34 PM CDT

Just a quick update. We are continuing Madison's 9month studies this week. We went to the eye doctor and her optic nerve is still normal. The developmentalist says she is doing great. Her gross motor delays are steroid related.

We met with Dr. K today. We are weaning the steroid and starting two knew meds for the anemia. It will take a few weeks for it to take affect, so she will most likely need transfusions over the next several weeks. She got transfused today and Dr. K says she will probably need another by the weekend. At this point we are most likely looking at being here at Duke until next Tuesday.

I will try to update again on Thurs. She has MRI, lumbar puncture, pulmonary functions tomorrow. On Thurs. she has EEG, VAR and BAER. Please continue to keep Madison in your prayers. She is recovering well from surgery, but is suffering from her first cold. She is not a happy camper being on steroids and having a stuffy nose at the same time.

Thanks for the messages and emails.
God Bless.

Sunday, April 17, 2005 4:09 PM CDT

We started on a roller coaster ride Friday morning. We went in to check Madison's hgb. For the second time we could not access her port, so we had to stick her hand again. We decided to leave and get her counts in the afternoon. Before we arrived home the nurse called to tell me her hgb was down to 6.9 and that she would have to be admitted. We ran dye through her port to see why we couldn't get blood return. We found that she basically as she has grown, the tubing became to short and slipped out. After being admitted we had to stick her numerous times so that we could cross match her blood. We tried an IV and started her transfusion, which blew the vein and we didn't know it for 20 minutes. Of course her arm was swollen and bruised. We next had to decide what to do since her hgb was dropping and an IV wasn't going to work. We discussed several options and a 11pm Friday we gave Madison a large dose of steroid to stop her hgb from dropping. We went home, packed and were on the road to Duke at 3am.

We arrived at clinic around 9am and after more sticks we finally go enough blood to recheck hgb and to do a type and screen. They admitted us to 5200 around 4pm and scheduled her surgery for this morning at 8am. We used large doses of steroids to keep her hgb stable until that time. Our concern was putting her through surgery with such a low red count. Fortunately after being put under they were able to get a good IV and transfuse before the surgery started. She went through with no complications. Unfortunately we had to put in a central line instead of a port for various reasons. With pain meds Madison is currently resting. We are hoping to start a new med tonight to finally get the anemia under control. I hope this journal doesn't have a lot of typos and that it makes some since. My brain isn't functioning at full capacity just yet. We hope to be discharged tomorrow or Tuesday. The plan for the rest of the week is uncertain at this point. Please keep Madison in your prayers. She is doing well, but will be sore for a few days.

On a good note, Madison did learn to wave bye-bye a couple of days ago.
God Bless.

Wednesday, April 13, 2005 3:50 PM CDT

Wow!! How time flies!! I didn't realize I hadn't updated since the 3rd. Anyway, the Tuesday after the transfusion, Madison's hgb was 10.1 and this past Tuesday(4/12) it dropped to 9.2. We are still weaning the steroid, and time will tell what is happening. We have to just be patient and see if the new medicine is starting to take effect. We will recheck her blood Friday morning. We will also have to check weight she lost 6 oz. Her appetite has really decreased due to the weaning of the steriod.

We go to Duke next week for Madison's 9 months post-transplant studies. It will be a full week so please keep us in your prayers. I will try to update as we get test result.

Madison can now roll all the way over and is starting to bear weight on her elbows when on her stomach. She has been saying mama for about a month, but now has dada down pat. Chad is very proud!!! She continues to learn new things every week. She is soooo amazing.

Please continue to pray for Madison.
God Bless.

Sunday, April 3, 2005 1:21 PM CDT

Just a quick update. Madison's hgb dropped again, and so we had to transfuse on Thursday. Fortunately we are still weaning the steroid. Her weight increased an ounce. She is 16 lbs. 3.5 ounces. Since we are weaning the steroid a little bit faster there is a good possibility her appetite will decrease. So we will have to watch her weight, but as chunky as she is right now a little weight loss wouldn't be too terrible. Continued weight gain, of course, would be best.

I put her bouncy seat back in her room this weekend. We are not using it very often since she is sitting by herself most of the time. We still use her swing for naps during the day, and she loves her Johnny Jump Up as well as her ExerSaucer. She is tolerating her belly a little better, but we still have some work to do. We are working on her going from a sitting position down to her belly. We put something she wants just out of reach so when she goes for it, we let her wiggle herself onto her belly. We are trying to give her a purpose for being on her belly.

We go back for blood work and weight on Tuesday. We will probably wean the steroid again. Please continue to pray for Madison and our friend Alyssa. Thanks to everyone who continues to leave messages and emails. We enjoy reading them.

God Bless.

Tuesday, March 29, 2005 8:37 PM CST

I hope everyone had a wonderful Easter. I enjoyed the days off from work!! (even if we spent them getting lab work done) On Monday her hgb basically stayed stable. So we increased the new med (FK506) and decreased the steroid (yeah!!) We will go again on Thursday to check her hgb again. Please pray it goes up.

Madison's weight has stayed at 16 pounds 2.5 ounces. We anticipate she will lose some as we begin weaning the steroids again.

Madison enjoyed her Easter. We tried not to spoil her, but it didn't work as you can see in the new pictures. What can I say--we just can't help ourselves. Besides at this point she hasn't figured it out that she is spoiled.

It is amazing, though, to realize in two months she will be a year old. The time goes by so quickly.
Again please pray that Madison's hgb goes up and this anemia goes away. Also our friend Alyssa still needs to gain weight. So keep her in your prayers also.

God Bless.

Friday, March 25, 2005 3:27 PM CST

Thanks for all the continued prayers. Madison's hgb finally went up. This is the first time since Christmas. We will check Monday to make sure it is still going up. This is a good indication that the new med is working. For those familiar with the coombs(sp??) test, Madison went from a +4 down to a +2. For those of you not familiar with this, it is a trend we want to see.

Madison is learning how to patty-cake. We say do patty-cake and she brings her hands together and lightly claps her hands once or twice. I will try to get a picture of this on soon.

Please continue to pray. Thanks.
God Bless

Wednesday, March 23, 2005 4:22 PM CST

Madison went Tuesday for her weekly bloodwork. Unfortunately her hgb dropped again. She was 7.7, but we didn't transfuse. We did switch from cyclosporine to FK506(Prograf), and we will recheck counts on Friday. So over the next couple of months Madison will begin losing her fussiness including the unibrow and sideburns. Please pray this new med with clear up the anemia problem. As soon as it goes away, so do all the meds. At this point she will have her immune system suppressed through the summer. She will be allowed to be outside, but still not around a lot of people. She will also be allowed to swim in the pool since the water is treated with clorine. She loves her bath so I am hoping the pool will be a hit. All other labs continue to be stable. Once this new med begins to work, the steroid will be weaned and the big, chuncky cheeks will decrease too. As I have said before, it will also allow her to get stronger.

Madison finally fits in her exersaucer. Chad bought it for her several months ago and her feet were 4 inches from the bottom. She loves it. She can turn all around in it, bounce, and play with the toys.

She is babbling more and more everyday. She is really getting the ga, dah, and mah. She also figured out this week how to smack her lips. She does it constantly. We are starting to hear s and th sounds too. She is so amazing, and everything she does is miraculous. It is hard to believe that with everything she has been through, she is still developmentally on target.

Please continue to pray for this hemolytic anemia to stop. We want to bring Madison out to meet everyone.
God Bless

Tuesday, March 15, 2005 5:16 PM CST

Greetings all! Well, Madison's hgb is still trending down. However, Dr. K is telling us to sit tight. She is not quite ready to switch meds yet. If she is lower on Tuesday then we will have to swich. There are advantages as well as disadvantages to going with a new med. By coming off the clyclosporine the hairy look will go away. Also coming off the steroid the moon face will disappear and she will begin to get more strength in her shoulders, arms, and upper body. The new med has the potential to be hard on the heart and pancreas. I will have to talk to Dr. K to get the specifics. There is always the chance that her hgb will go up or at least stay the same. If that is the case we won't make changes just yet. Despite the side effects of the steroids, the best thing would be for her hgb to go up and just continue to wean the steroid slowly. So please pray these antibodies go away and that her hgb increases.

On a good note, Madison's weight has increased again!! She is now 16 pounds 2.5 ounces(7.33kg). All other labs are good.

Please continue to pray for Madison. Overall she is doing tremendous. We would just like this hemolytic anemia to go away.
God Bless.
Wendy

Friday, March 11, 2005 6:17 PM CST

I apologize for the delayed update. Everything has been going well. We are still watching Madison's hemoglobin. We are continuing to wean the steroid, just very slow. We do blood checks on Tuesdays and Fridays.

Madison is also continuing to gain weight. She is now 15 pounds 11.5 ounces(7.13kg) She is 24.5 inches. We are getting a lot of wear out of her 3-6 month clothes. If she gets a little bit longer we may be able to move up to 6-9 month clothes.

She is continuing to stay on target developmentally. Her only issue is still upper body strength. She fights to get off her belly any time we put her on her tummy. However I have gotten her to tolerate tummy time for about 5 -7 minutes once a day. Once she comes off the steroid and gets strong enough to do things on her belly, I think she will like it. Right now it is easier for her to do things on her back. She is sitting extremely well and we are continuing to work on standing. Her legs no longer buckle when she is standing. Instead she has figured out how to go into a sitting position. Feeding is still going well. She is still not wanting anything other than her sweet potatoes, peaches, and oatmeal flavored with peaches. We are trying mix different things trying to trick her, but Madison is not falling for it.

One new thing that Madison is doing now is she reaches to be picked up. She raises her arms and leans toward the person she wants.

I will try to get some new pictures up soon. Thanks for continued prayers, emails, and messages. Thanks for the prayers for our friend Alyssa. She and her family finally got to go back home!! Please continue to prayer that she gains weight.

Thanks. God Bless.

Saturday, March 5, 2005 6:44 AM CST

Just a quick update. Madison hemoglobin has been flucuating a little bit. We are continuing to reduce the steroid slowly. If Madison's hgb level drops we will be switching to another med; however if it stays stable we will just continue to slowly wean the steroid. Her magnesium level has stayed stable even with being off the supplement. All other levels remain stable.

Madison was evaluated by a speech therapist yesterday. I just wanted to make sure she is staying on target with her speech and feeding development. The therapist was extremely pleased with where Madison is at this point. She sees nothing right now that sets off any red flags. She gave us some things to do with her to help keep her on target and things to watch for. The therapist doesn't feel she needs to see her on a regular basis. She will reevaluate her in a couple of months.

Madison is starting to master the sippy cup. She is really starting to express her likes and dislikes. It is wonderful to see her personality change and develop everyday.

Thanks for all the continued prayers, emails, and messages.
God Bless

Thursday, February 24, 2005 12:18 AM CST

I have some extra time to update since we had a snowday today. Madison's hemoglobin went down a little since last week. It is 10.5, which isn't a big drop, but her retic. count was up from 86 to 161. This means her body is having to work to make red cells. This indicates that she still has antibodies attacking her red cells. We are continuing to wean the steroid, but at a slower rate. All her other labs including chemistries, CBC, and cyclosporine have remained normal and stable. Her Magnesium has been so stable that we were able to stop the magnesium supplement completely!! This is the crushed pill, so Madison too is happy. Actually, she has gotten used to it and she didn't really mind taking it. She takes all her meds wonderfully. So other than the continued anemia problem, Madison is doing great.

Her weight went up more. She is now at 15 lbs. 6.5 oz. I have noticed her appetite slightly decreasing, but that is because we are weaning the steroid. She is still eating like crazy, especially at night. It is like have a newborn again. She eats every 1 1/2 to 2 hrs at night. It's not bad on weekends, but it's just a tad bit hard when you have to get up a 6 am to go to work. :)

We are trying to do more belly time so she can work on strengthening her arms and shoulders, but she doesn't like it. Madison is also working on her sitting and standing, which she does like and is getting better at it everyday. We are going to try some new foods this week. I'll let everyone know how she does. We have to get her to eat something other than just peaches and sweet potatoes. Of course Madison is content with these as long as she gets to eat her puffs.

Thank you for your continued support and prayers. Please remember our friend Alyssa in your prayers too. She had a G-tube placed this week, and hopefully they will get to go home-home soon. Overall she is doing great, just having trouble gaining weight. This is something most transplant babies battle. Thanks!

Tuesday, February 15, 2005 5:39 PM CST

Madison's hemoglobin went from 7.0 to 11.0 with her transfusion. We are going to start weaning the steroid today and see if she can hold onto her blood this time. If she starts trending down we will start a new medicine and continue to wean the steroid. This new med would suppress her immune system a little more than the steroid, but doesn't have the bad side effects the steroid does. As I think I said before, with this all happening it will be longer than we expected before she will be able to meet everyone. I will keep posting updated pictures so everyone can continue to watch her grow and see her learning so many new things.

All her other labs have remained good. The steroid has increased her appetite so much that she went from 13 lbs. 12.5oz. up to 14 lbs. 10.5 oz. in just a week. Once we really wean the steroid she will drop some, but until then she will really be packing on the weight. Her diet now includes peaches, sweet potatoes, green beans, prunes, GoldFish, and Gerber fruit puffs. She doesn't like applesauce, rice cereal, or oatmeal. Peaches continue to be her favorite. Also the fruit puffs. Just today she took one from my fingers and put it in her mouth. She is definitely on the way to feeding herself. She needs to develop just a little more coordination, but she is trying hard.It is so amazing watch her trying to figure out how to chew the puffs. I don't even have to break them into smaller pieces.
We don't go back until next Tuesday as long as nothing changes. Please continue to pray for Madison to get over this anemia soon.

Tuesday, February 8, 2005 2:54 PM CST

My apologies for not updating yesterday, but it got a little hectic. Madison's hemoglobin dropped back down yesterday and again today so she had to get a transfusion. It is still caused by antibodies that her body has produced and they are attacking her red cells. Her body is responding but not fast enough, so we had to help her out a little. Dr. K has seen this and treated many times. It may take a few weeks to get through this or a few months, but she reassures me that it won't be a long term problem. This also means her immune system will be low for longer than we expected.

All of Madison's other labs are good. She is still doing well despite this issue. She is sitting better each day. The steroids may cause some delays in her gross motor skills temporarily. She figured out yesterday how to pull of her sock. And she now loves playing peek-a-boo with her blanket.
Also she has a love of Gold Fish Crackers and sweet potatoes. I fear she will be turning orange soon since this is the color of all her favorite foods.

Please pray that this anemia problem goes away soon. Even though it is a small issue, it is just one more thing to worry about. Thanks.

God Bless.

Saturday, February 5, 2005 1:26 PM CST

Just a quick update. Madison's counts are continuing to go back up. Today she was at 7.9. We had to increase the steroid yesterday, but she has not had to have a transfusion. With the increase of the steroid comes the fussiness. However, if her counts have gone up again on Monday, we will be able to start reducing the steroids again. I will update again Monday.

God Bless.

Thursday, February 3, 2005 5:17 PM CST

Well Madison has decided that things have been too calm. Her red blood count has begun to drop again. She was 8 on Monday, so we increased the steroid again. When we went today she dropped again. She went to 7.4. Usually she would get a transfusion at this point, but they want to see if another increase in steroids will be enough for her to fix it herself. I hate the fact that she will be on the steroid longer, but it will only be temporary. Overall Madison is still doing extremely well. She isn't even acting like her count is low.

We go tomorrow morning to check her level. If she is lower than 7 we will transfuse. However if she is above 7 we will wait it out because this would be a sign that her body is responding to the steroid. This just a small hurdle, but please pray it ends soon.

Thanks!

Friday, January 28, 2005 3:41 PM CST

Wow!! What a week. I survived a full week of work. We did have two 2 hour delays, which helped. I will still try to update once a week for now, and do pictures a couple times.

Madison's lab work has continued to remain stable. Her weight stayed about the same as last week. She isn't eating constantly anymore because we are weaning the steroid. She still loves peaches, but only tolerates prunes and pears. The physical therapist thinks her arms, back and legs are getting stronger. I really, really can't wait until she is off the steroids. We saw her make so much progress when she was off of them before. She is holding herself much better when she sits. Another month or so with getting off the steroids, I think she will be sitting on her own.

She is beginning to show her personality. She lets us know things she likes to do as well as things she doesn't. We have no visible signs of teeth yet, but she is still chewing on anything she can get in her mouth. We are having a hard time doing tummy time because she doesn't want to be on her belly. We put her on her belly and two seconds later -- over she goes. Madison continues to amaze us everyday. It is so wonderful to have such a miracle in our lives.

God Bless.

Sunday, January 23, 2005 9:15 AM CST

On Friday Madison's hemoglobin went back up. She went to 10.8, which is the highest she has ever been on her own. We will wean her steroid more on Tuesday. I forgot to mention that her magnesium level has been on the high end of normal, so we reduced her to 1/2 pill once a day. Madison likes this since crushed pills aren't the most tasty things in the world.

We have now moved from peaches to prunes. She likes the prunes, which is good for an obvious reason. She is really getting the hang of eating from a spoon. She is starting to open her mouth as the spoon gets close. Madison also sucks on her lower lip which make kissing sounds. She is growing and changing so quickly. We haven't seen any signs of teeth yet, but she is chewing on toys and her fingers all the time.

I am going to try to upload some pictures today. Don't forget on Sunday the 23rd on ABC at 8pm a seventeen year old girl, Jhyrve',will be on Extreme Makeover Home Edition. This young lady was diagnosed with late onset Krabbe. Dr. K, Madison's primary doctor, will also be on the show.

God Bless.

Friday, January 21, 2005 8:50 AM CST

ADDED SATURDAY JAN. 22, 2005: Just wanted to add that on Sunday the 23rd on ABC at 8pm a seventeen year old girl, Jhyrve',will be on Extreme Makeover Home Edition. This young lady has late onset Krabbe. Dr. K, Madison's primary doctor, will also be on the show.

Madison is continuing to do well. All her labs on Tuesday were good. Her hemoglobin was 9.6 so we are going to double check it today to make sure it didn't drop anymore. We had taken a good amount of blood last Friday, so it could be down because of that.

Her weight was up again. Tuesday she weighed in at 13 lbs. 14 ounces!!!!! She at a whole container of peaches in one sitting yesterday. And this is with weaning the steroid more. She is really starting to chunk up. Her 3-6 months clothes are beginning to fit her well.

We have been working on her arm and shoulder strength. She has started to bear some weight on her arms while on her belly with just a little help. We are also having her do this while in a sitting position. She held herself a couple of times for a few seconds. So she is getting there. Once she is back off the steroid I think she will make more leaps and bounds.

I survived going back to work this week. It really wasn't too bad, especially since we had and early dismissal on Wed., a two hour delay on Thurs., and school was cancelled today. And if we get the amount of snow over the weekend that they are calling for, we may have Monday off as well. What a job to have.

Thank you for all the prayers, emails, and messages.
God Bless

Monday, January 17, 2005 11:24 AM CST

Good Morning. We met with Dr. K and Sue Friday afternoon and to say the least they are extremely pleased with Madison. All her tests came back normal. There are some blood tests that take a few weeks for the results, but we anticipate them to be normal except of course her immune study. We know she has a low immune system because of the medications. At this point it is unclear when Madison will be able to meet everyone. We will know more when we take her back in April. This is when they will reduce the cyclosporine. This is the other med that suppresses the immune system and makes her so hairy. We are continuing to wean the steroid, and we will have to continue to do labs once a week for a few more weeks. Then we hope to do labs just every other week. It seems that the anemia episode may have been a one time thing. It can occur at anytime over the next several months, but then again it may not happen at all. This is just something that can occur post transplant.

Madison is gaining weight very well. Since she has been on the steroid her appetite has increased tremedously. Yesterday in addition to her formula every couple hours, she ate a jar and a half of peaches yesterday. This was over the course of the day, but she is starting to figure out what to do. I will add a picture later showing what a good job she did. Her weight on Friday was 13 lbs. 3 1/2 oz.

I will take her in the morning for labs, blood pressure check, and weight. I am anticipating her weight has gone up even more. Also since we have been weaning the steroid, she hasn't been near a fussy. She is really getting back to her sweet, content self. And she is jabbering constantly. I will post tomorrow after I get home from work. I am unofficially working tomorrow afternoon to get things ready, and going back officially on Wednesday. I think I am ready to go back. It will be an adjustment, but I think it will be good for me. I think Madison will be glad to get away for mommy for a little while each day. As I have said before, between her daddy and Grandma Betty, she will be in good hands while I'm at work.

Thanks for all the prayers, emails and messages.
God Bless.

Friday, January 14, 2005 8:59 AM CST

I just have a minute to update. We are trying to pack so we can leave as soon as we met with Dr. K and Sue. Madison's protein level is normal. And her enzyme level has remained normal also. Madison's MRI is normal too. Her mylin is normal for her age. It showed a little atrophy but all kids, no matter what the disease, have this. It will go away once she is off the steroids.

Well got to go. I will post this weekend about what Dr. K has to say.

God Bless.

Thursday, January 13, 2005 2:15 PM CST

We continue to get good news!!! Madison's BAER and VEP both came back normal. So ALL the tests so far are NORMAL, NORMAL, NORMAL!! This is truly a miracle. We are so very, very blessed.

Madison had her MRI and Lumbar puncture today, and it went very well. The results will be back tomorrow. We meet with Dr. K and Sue tomorrow afternoon, then we will be heading back home. It has been a very good week. Thank you for all your prayers, emails, and messages.

We also saw the developmentalist today. She said Madison is doing very well. She is developmentally on target for her age in every area except gross motor. Her speech, cognitive, fine motor, etc are normal. The gross motor is delayed but she said only by about 3-4 weeks!!! This is due to the steroids. Again once she is completely off she should catch up quickly. So we will continue to work on strengthening her shoulder, arm, and back muscles. Her neck muscles are much stronger.

Again thank you for all of your prayers. I will update when I get more results.

Check out the new pictures. I was able to post using another computer.

God Bless.

Wednesday, January 12, 2005 2:31 PM CST

GOOD NEWS!!! Madison's nerve conduction test is still normal!!! This test checks the nerve pathways to the brain. This is one of the more important tests.

Today she had the EEG, BAER(hearing), and VEP(vision). We will get those results tomorrow. We go to the developmentalist tomorrow, then go for her MRI and Lumbar Puncture. The MRI is really the most important test. These were all normal at her 100 days, so please pray they again come back normal.

Madison is doing so well with all these people poking and proding her. We think she is learning that she doesn't like people in white coats. Thank goodness her primary doctors don't wear them.

She has really started "talking". Before she would talk to you when you were talking to her. Now she just babbles to entertain herself. Her fine motor skills are really developing. She manipulates her toys very well. And she almost always has one of her feet in her hands. The other is usually kicking to bounce the bouncey seat or in her mouth. She is rolling over from her belly to her back all the time.
And she loves to be in a sitting position. We are working on her bearing weight on her arms. Once she strengthens her arms there will be no stopping her. Madison is facinating with the tiniest details. She always finds the zipper on a jacket or the ear of a stuffed animal. And of course she loves tags.

It is so amazing to watch her reaching all these new milestones. We are so thankful for each little thing she does. Thanks for everyone's continued prayers for Madison. God is good and has blessed us so much.

I will post tomorrow as soon as I get more results! Also I am going to try to get some pictures on with Chad's computer since my isn't fixed yet.

God Bless.

PS Just as I was posting another result came back. Madison's EEG is NORMAL!!

Tuesday, January 11, 2005 5:28 PM CST

We arrived in Durham Sunday evening and checked into our apartment. We are staying in the same complex as before. They rent some of the places for a week at a time. It is much better than staying in a hotel. A hotel has too many people and germs.

On Monday we had her echocardiogram, pulmonary function, and nerve conduction. Her lung functions were fine and her heart which was thick due to the steroids is now back to NORMAL. These are all the results we have so far. The nerve conduction should be back tomorrow.

Today Madison saw the eye doctor. He took a picture of her optic nerve. Madison hated it because we had to keep her eye opened. But it was worth it. This is one of things that is affected by Krabbe, but Madison shows no signs of it. Her optic nerve is healthy and normal.

Finally we saw Dr. Kurtzberg and Sue today. They are very pleased with her progress. We are continuing to wean the steroid but at a little slower rate. She doesn't want this anemia to flare up again. She told us she doesn't expect this to be an ongoing problem since she responded so well to the steroid. Also she is decreasing her magnesium supplement to once a day. Madison will be happy because it is a crushed pill. It is very yucky. Because of the anemia and having to go back on the steroid, we won't get to wean the cyclosporine until April. So her immune system won't be up as much as we were hoping. This means Madison will be isolated for a little longer than planned. So everyone will have to remain patient.

Madison has done very well through all of her tests so far. It hasn't seemed to stress her out. We should have more test results back tomorrow so I will try to update as soon as I get them.

Thank you for all your prayers. Things are going quite smoothly for us.

Friday, January 7, 2005 5:56 PM CST

I took Madison this morning for her labs. Her hemoglobin went to 10.1. That is only a slight increase, but her reticulocyte count dropped. This means her body isn't having to work as hard to maintain her red cells. Dr. Kurtzberg is weaning the steroid again. I wasn't expecting this, but am thrilled. The sooner she is back off the steroid the better.

Please keep us in your prayers as we head to Duke this week. I will try to post as we get the test results back. Thanks for all the messages and emails.

God Bless.

Tuesday, January 4, 2005 1:25 PM CST

Madison's hemoglobin was 10 today!!! She is doing really well. The doctor is very pleased with her progress. We started weaning her steroid today. She is still quite fussy, so I will be glad when she is off of it completely. I want my content baby back. I really can't complain, it could be a lot worse. Because of the steroid she is eating like crazy, and her weight proves it. She was 12 lbs. 3 1/2 ounces today. This is one benefit of the steroid.

All of her other labs continue to be stable. We will check her red count on Friday. Then we leave Sunday for Duke. It will be a long week, but should go by fast. After we return from Duke, I return to work. It is going to be a big adjustment to make. I am looking forward to getting back into a "normal" way of life. It will be hard leaving Madison but I know she will be in good hands. Chad will watch her on Mondays and Tuesdays and my mom will watch her the rest of the week.

I am unable to download pictures from my camera to my laptop right now. The USB ports aren't working so I am in the process of trying to get that fixed. So if I don't update pictures for a couple of weeks that is why. I apologize for this, but will make up for it as soon as my computer is fixed.

Please keep us in your prayers especially next week. It can be a long, stressful week.

God Bless.

Saturday, January 1, 2005 9:08 PM CST

HAPPY NEW YEAR!!!

We took Madison to Ruby this morning to check her counts. She stayed at 9.0, but her reticulocyte count was less. Basically this means her body isn't having to work as hard to produce red cells because the antibodies aren't attacking them as much. So the steroid is working. If her counts(hemoglobin) remain the same or increase we will get to start weaning the steroid on Tuesday. We don't have to have blood drawn until then either.

Madison has been quite fussy, but Dr. K says that is because of the steroid. One benefit to the steroid is that it increases appetite. Madison has been eating a good bit more. I can't wait until Tuesday to see what if her weight has increased. I am also anxious to try her on baby food. I should get some good pictures when we do.
Thanks for continued prayers.
God Bless

Thursday, December 30, 2004 1:32 PM CST

Good news!! Madison's hemoglobin went up from 8.3 to 9.0 today. I went expecting she would get a blood transfusion. This means her body is working really, really hard. If this continues to rise, we are still looking to wean the steroids on Tuesday. We go Saturday for labs again and if her count is still increasing we won't do labs until Tuesday.

Madison is acting more like herself today. She hasn't needed to be held constantly. She is also eating a little better. Because of all that has happened I haven't started baby food, but hopefully next week things will have settled down enough.

I even got her on her belly today, and of course over she went. She is still rolling well. We haven't been able to do much this past week because she either didn't feel well or was just too tired. As her hemoglobin increases she will have more energy.

Please keep her in your prayers.
God Bless.

Wednesday, December 29, 2004 12:05 AM CST

After talking to Dr. K yesterday, we ended up doing labs this morning. Madison's hemoglobin dropped again and is now 8.3. Dr. K says this is not too bad. Sometimes kids need transfused everyday. Her reticulocyte (SP??) percent is up and this indicates that her marrow is really producing red cells to try and compensate for the ones the antibodies are attacking. So her body is responding well. Hopefully in a couple weeks we will have a better idea if this is going to be a short thing or more long term. By long term I mean possibly several months.

Yesterday Madison got her monthly IVIG and Pentamodine. She had the worst reaction to the Pentamodine. She always get stuffy and a little upset stomach. But yesterday, she wouldn't eat or even take her binki. Plus I think she was just tired from all she has been through this week. Today she is still a little tired, but much more like herself.

Please continue to keep her in your prayers.
God Bless

Tuesday, December 28, 2004 1:41 PM CST

Madison's red count dropped a little today. She was 8.8, but all her other levels indicate that her blood marrow is producing in response appropriately. We get to skip blood tomorrow, and will check it Thursday morning. Sorry for such a short update, but Madison is calling. I will update after Thursdays appt, unless things change between now and then.

God bless.

Monday, December 27, 2004 1:22 PM CST

Well I think God was checking to see that I wasn't getting to relaxed and that I was still on my toes. Good news, Madison's red count went up from 8.6 Sunday morning to 9.1 this morning. Her doctor is pleased with this. We will go every day this week for blood checks, and if she doesn't require a transfusion this week, we will begin to wean the steroid slowly. Madison is really back to herself today.

Also her weight is increasing slowly, but is increasing. She was 11pounds 10 1/2 ounces.

We got to finally have our Christmas Sunday night. And around 8:00 it began snowing. So we got to have a white Christmas. Of course it has all melted today.

Please continue to pray for Madison. We are hoping that this is a short term problem. Thanks for all your thoughts and prayers.

God Bless.

Sunday, December 26, 2004 2:54 PM CST

Hello! I hope everyone had a wonderful Christmas!! Ours was quite eventful to say the least.

Christmas eve day started out "normal". Madison was a little fussy. By the time we got home from Chad's parent's house, she was fussing almost constantly. I notice her color was strange. She looked a little yellow. After consulting with Sue (nurse practioner at Duke) we decided to take her to the ER for some lab work. We went to our local ER thinking since it was closer we could get the labs draw and go home. Big mistake, We will never,ever return there. We waited 4 hours to see the doctor. When he came in, before I could stop him he handled Madison without washing his hands!!! He wanted to run more tests than necessary so we had get "stern" with him. We told him what Duke wanted and he still didn't do anything until he spoke with them. After a few minutes we convinced him we knew what we were talking about, but when they tried to access the port, no blood would draw. We made arrangements to go to Morgantown. So at 5 am we were heading to Ruby's ER.

I was very pleased with our treatment there. They had to stick her foot to get blood until we got someone to get the clot out of her port. The results came back that her hemoglobin was 5.5. I told them I didn't think that was right because Tuesday she was at 10.1. So they wanted to repeat it. They admitted us around 8 am and got her port unclotted (so no more sticks) When these results came back she had dropped to 4.6. To make a long story short, she has a type of GVHD (graft vs. host) in her blood. Antibodies attack her red blood cells. The doctor at Duke has seen this before and we treat it with steroids. Yes, we have to go back on steroids. This can be a short term problem or can go on for many months. Thankfully it is treatable. We just have to watch her hemoglobin more closely and she will need to get more transfusions since it depletes her red cells. It is also harder to match blood for her because of these antibodies. We had to wait over 4 hours for them to find a close match.

Anyway, we are now home. Madison is still doing great. In the big picture this is just a small issue. Serious, but controlable. We will have to do daily lab draws for a few weeks to see what pattern develops. Hopefully we will be able to wean the steroids quickly. Please keep praying for Madison and her friend Alyssa who is battling the same problem.

God Bless

Thursday, December 23, 2004 4:29 PM CST

Madison is getting ready for Christmas. I think Santa might need two sleighs to deliver her presents. Her stocking is hung and ready to be filled.

She was very fussy Sunday and Monday, which is very unusual for her. When we took her to her weekly visit on Tuesday her doctor said she may have a little belly bug. She wanted to be held constantly. However, it seems now that it is gone. She was really more like herself today. I think she learned over the last few days how to get held too. Please continue to pray Madison stays healthy over the next few months, especially when I return to work in January.

We go back to Duke in January. They will repeat all of the studies that were done at 100 days. These 6 month post-transplant studies are the most critical. They did tell us that since her tests were all normal at 100 days that they don't anticipate that to change. So again we would appreciate the prayers while we are down there for a week. It will be a long, busy week.

Also please keep our friend Alyssa in your prayers. She was put back in the hospital to have her central lines replaced and she is battling some GVHD (graft vs. host disease) therefore needing blood transfusions.

We hope everyone has a very Merry Christmas. Thanks for you prayers, messages, and emails.

God Bless.

Sunday, December 19, 2004 3:48 PM CST

Hello!!

I apologize for being late on my weekly update. I have had a few opportunities to get out of the house to do my Christmas shopping, and I took them.

Madison is still doing fabulous!! I am having one problem with her now. I can't keep her on her tummy!! I put her on her belly and over she rolls. What a wonderful "problem". We are now working on her bearing weight on her arms and on getting her to roll from her back to her belly. She continues to get stronger every week.

Some new things she is doing are passing a toy from one hand to the other, reaching across her body (past midline), and sitting with better control in her Bumbo seat. She has also really figured out how to get the attention she wants. We just act like we are going to put her down and she will fuss. She has realized that mommy doesn't give in as easy as daddy. Unfortunately I can't hold her 24/7. (maybe 20/7!!!) She is still a very content baby. She only cries when she is hungry.

She is continuing to do well with the bottle. If her weight is still increasing next week, I am going to introduce her to baby food. I think she is ready for it.

Her blood levels have remained normal and stable. For the first time her red count (hemoglobin) went from 9.4 last week to 9.8 this week. She has always trended down and then needed a transfusion. Hopefully this means no more blood transfusions. Her body is really starting to keep up with all the blood we take each week. The fact that she is getting bigger is helping. She is finally getting out of 0-3month clothes. Her 3-6 clothes are baggy on her, but in another month I think they will fit well. She was 24 inches long when we measured her two weeks ago.

Thanks for all the continued prayers, messages, and emails.

God Bless.

Wednesday, December 8, 2004 9:27 PM CST

Hello everyone. We have had a very exciting week, especially today. Madison is not only holding her toys now, but she can move and manipulate them. She will get a hold of her toy and move it to her face then move it all the way out. She will raise it to her forehead and then down again. Today while her PT was here she rolled from her belly to her back all by herself for the first time. NO help!!! She did it three times. Before we know it she will be rolling all over the place. I am really hoping now that she will be able to roll from back to belly soon especially since she seems to be getting much stronger. I bought her a Bumbo babysitter seat to encourage her to sit and play. This will also help with her strength. She appears to like it so far.

We decorated the Christmas tree and Madison loves the flashing lights. There are two toys that top her favorite toy list, and those are the Hallmark singing snowmen (from last year) and this year's the singing snowman and his dog. She just loves things that move, make noise, and light up. We haven't done our Christmas shopping, but hope to do it next week. I have a funny feeling she is going to continue to be quite spoiled.

Madison is doing quite well on formula. She is now on it all through the day, and she is nursing through the night. Her doctor continues to be very pleased with her progress. It is hard to believe we go back to Duke in January for her 6 month post transplant visit. She will have all the tests that were done at 100 days repeated. This will all happen in a week's time. So it will be a long week.

Thanks for all the prayers, emails and messages. It can get lonely living in a world of isolation. Also please keep the other Krabbe kids in your prayers.

God Bless.

Wednesday, December 1, 2004 6:20 PM CST

Madison turned 6 months old yesterday. It is so hard to believe so much time has past. She is playing with her feet all of the time now. We are still working on rolling over and her neck strength. She is adjusting to the bottle ok. So hopefully by January we will have completed the transition.

Madison had her check up on Tuesday. We did her weekly labs and she got her monthly IVIG and Pantamodine. Her labs were good. She has been having a little bit of an upset stomach, but we believe it is because her Cyclosporine level drop. When it drops is causes her to have a sour stomach. We up her dose and in a day or two she is fine.

Her weight was up. YEAH!!!!! Her blood pressure has stayed stable so she gets to go off one of the three blood pressure meds.

Thanks for the continued prayers, emails, and messages.

Thursday, November 25, 2004 9:52 AM CST

HAPPY THANKSGIVING!!!

Madison continues to do well. She gained an ounce since last week. YEAH!!!! I started giving her a bottle last week, and so far she is doing fine with it. I am hoping to switch to some formula this week. Please pray she transitions well.

Madison has found her feet. She isn't always sure of how to bring them where she wants, but it won't be long before she has it down. When I get a picture of it I'll post it. Her neck strength is also continuing to improve. She can now hold it at a 90 degree angle for longer periods of time while turning it from side to side. I have also noticed that her hands stay open almost all of the time. As I have said before, it is so wonderful to see her doing normal things.

Let me say again how thankful we are. We continue to be blessed everyday. Please continue to pray for Madison as well as the other krabbe kids and their families.

THANK YOU & GOD BLESS

Friday, November 19, 2004 8:46 AM CST

Good morning all. Madison continues to have great check-ups. She is getting stronger everyday. Her labs have also been very stable. God blesses us each minute of everyday. I can't say it enough, so I will say it again. Madison is such a miracle. To know where she would be and what she would be going through at this time had she not been able to go through transplant. Every time she grabs a toy, smiles at us, coos, or puts her binki in her mouth is a miracle. She is such a precious gift from God.

Madison's weight has gone up slightly. Yeah!! Any increase is terrific. So please continue to pray for weight increase for Madison and for our friend Alyssa.

Thanks for the continued prayers, emails, and messages. Hope everyone is enjoying the pictures.

Thursday, November 11, 2004 8:43 AM CST

Madison had her weekly checkup on Tuesday. She got her monthly IVIG (antibodies). Her blood pressure has been really good, so we are weaning one of the three blood pressure meds again. Hopefully she will go completely off of it soon.

We are going to have to watch Madison's weight. She has been around 11 pounds for about 3 weeks. They are not extremely concerned at this point because her head circumference has increased. This basically means her brain is growing even though she is just maintaining her weight. However we need to see some increase in the next couple weeks.

Madison has now been completely of the steroid since yesterday. She received her last dose Tuesday morning. So far no rash!!!! Yeah!!! Now that she is off of that, we really hope to see her gain strength back in her muscles. We have been trying to do lots of tummy time. It really seems to wear her out. So I try to do it right after a nap when she has lots of energy.

She is really becoming quite curious about things. If there is a toy out of reach, she tries hard to get to it. She is able to roll to her side now without any trouble. Once her neck muscles get a little stronger, she will be making it all the way to her tummy. When I roll her to her tummy, she is starting to pick her head up as she goes from her side to her tummy. So she knows what to do, she just needs to get stronger to do it all on her own.
As I have said before, Madison amazes us everyday. To see all of her movements and to hear all of her noises is miraculous. It is hard to believe that had she not gotten this transplant she wouldn't be where she is today. I am to soooo very thankful. God has blessed us with such a precious gift.
Thanks again for all the messages and emails. Please pray Madison's weight goes up. Thanks for keeping all the Krabbe kids in your prayers too.

Thursday, November 4, 2004 8:52 PM CST

HELLO.

Madison had a good check up. She has had no rash, so we should be able to take her OFF the steriod on Tuesday. Her weight has stayed the same now for about 3 weeks. This most likely because of weaning the steroid as well as her red blood count has been trending down. She was 7.9 this morning so she had to get a transfusion. It has been over a month since her last one which is great. Hopefully this was her last time.

We are also getting to wean one of the three blood pressure meds. Her levels were all good. Even her magnesium was up to 1.8, which is the best we have seen in a while. If she continues to go up we can reduce her supplement. That would make Madison happy. The mag supplement is a crushed pill and tastes nasty. She does so well considering all the yucky things she has to take several times a day.

She continues to amaze us everyday. She is so curious about everything. She can now roll completely to her side and stay for a while. She lifts her legs so high her bottom comes completely off the floor. She loves her binki. It is her favorite toy. She puts it in upside down, sideways, backwards and every once in a while she manages to get it in the right way. She loves to chew on it,too.

Madison started physical therapy this week. We are focusing on head control and neck/shoulder strength. The main reason for physical therapy at this point is to prevent problems. Again, except for some weakening of her neck muscles she is on target for a 5 month old.

Thank you for all your continued prayers. God is so good. He continues bless us everyday. Also thanks for the messages and emails. Please pray for all the Krabbe kids. Even though they say it is a rare disease, there seems like alot of kids are being diagnosed. You can look at other Krabbe kids' webpages at www.krabbes.com.

Finally, I will try to get new pictures up over the weekend.

Thursday, October 28, 2004 1:30 PM CDT

Hello everyone. It is great to be home. Madison is still doing tremendous. She is maintaining her weight and blood pressure is stable. We weaned her steroid Tuesday. She is only getting it once a day for two weeks. Then if there is no rash, she will come off of it completely!!! YEAH!!!

Now that her port is in we have been able to do more tummy time. This will help strengthen her neck muscles so that she can continue to progress developmentally. She held her head up (90%) for more than 20 seconds. It was amazing. She is trying still to roll over. Once she gets her neck muscles strengthened she will be able to roll over. My understanding is that head control is an important part of rolling over. The more time she can spend on her tummy lifting her head the stronger it will become.

Madison levels have also remained stable. We are still adjusting the one med, but it is getting back in a normal range. Her red blood count is trending down, but that is due to blood draws. Please pray she makes lots of red cells so she doesn't have to be transfused. We will do labs again next week.

I will try to catch Madison raising her head on camera. As soon as I do I will post them. Thanks for all the messages and emails. It is nice staying in contact with everyone.

Saturday, October 23, 2004 8:50 AM CDT

We are getting settled in. It is wonderful being back in my own house. Madison is still doing great. We had trouble accessing the port on Wednesday, but on Friday after a couple of tries we got blood return. It seems that her port is very positional. All her levels were fine except for her cyclosporine. It was a high 375. We try to keep it in the 150-250 range. This is the medicine that suppresses her immune system as well as gives her the "lovely" unibrow and fuzzy forehead. So we reduced the dose. She typically spikes for some reason every 4 -5 weeks. But nothing to worry about. All we have to do is adjust the med.

Her blood pressure has stayed stable and her weight is now hanging around 11 lbs. 1 oz. She has really become vocal as of yesterday. She is making all kinds of vowel sounds. She is reaching for everything and of course it all goes to her mouth. She is really facinated with our faces. It is so wonderful to watch every little thing she does. This could explain why I am still unpacking and not getting too much done around the house. The time I am getting to spend with her is such a blessing. I thank God many times a day for everything He has blessed us with. She is a true miracle.

Please pray for our friend Alyssa. She had to go back on TPN (IV nutrients) because of not gaining enough weight. Other than that she is doing very well. But as I mentioned before with Madison, weight gain is very, very important.

We appreciate all the messages. Please take a minute to sign Madison's guestbook, even if it is a "HI, just checking in" or email me. Remember I am mostly hanging out by myself, so it is nice having contact with the outside world.

Finally enjoy the new pictures.

Saturday, October 16, 2004 9:46 PM CDT

WE ARE HOME!!!! It is soooo good to be back. It will be hard not to take Madison everywhere and not have people over to see her. But the next several months should go fast and then everyone will get to meet her. It is amazing how much stuff you can accumulate over 4 1/2 months. We had the van and my car packed full. We have more unpacking to do, but it will have to wait until tomorrow because we are a bit tired.

Madison likes being home. She has many new things to look at and toys to play with. She doesn't seem to feel out of place. She has been so strong through this whole process. She still has a long road ahead, but I know she will breeze through.

Thank you to everyone for their kindness and generosity. Please continue to pray for Madison. Your prayers are working. We were so blessed while at Duke. The doctors, Nurse practioners, nurses, and staff were wonderful.

I will try to update at least twice a week now that we are back home. Also I will keep posting new pictures. I would appreciate messages and emails. We enjoy reading them.
THANKS THANKS THANKS!!!

Thursday, October 14, 2004 11:43 AM CDT

ONE DAY TO GO!!!! We go to clinic tomorrow morning for a final visit. They will do weight, blood pressure, and blood work. We have to make sure her levels are fine before we leave. They have been so stable that we only do blood draws once a week now. Also they will draw the blood from her port to make sure it is working before we come home.

Madison has mostly recovered from her surgery. She slept most of Monday, but was more awake Tues. She still needed Motrin. Yesterday she was basically back to herself.

We are planning on heading home Saturday morning. It will be soooo good to be home. The doctor wants Chad and I to get the flu shot. We have to get the shot version of it because Madison can catch the flu from the nasal vaccine. Since she hasn't received her immunizations, she can also catch diseases from children who have recently received live vaccines such as chicken pox, MMR, etc. All of which can be fatal for her. This is another reason she must stay isolated for awhile. The best protection comes down to hand washing. We have antibacterial gel and alcohol foam sitting all over the place. We will have to continue this until her immune systems comes back. I have become germaphobic. In addition to washing hands constantly, we wipe things down and clean a lot. We have an air purifier and will change the filters in our cooling/heating system quite often. I am allowed to keep the couple of house plants that I have but can't buy anymore right now. It is amazing the things we take for granted. We live day to day and never think of things like this.

Again we appreciate everyone's patience. I know everyone is anxious to meet Madison. I hope everyone understands how important it is that she not be exposed to anymore sickness than necessary. She still has to go to the doctor once a week. Of course she will have to wear her mask. We will continue to do bloodwork once a week as well.

On Tuesday we got to wean her steroid again. If no rash appears we will wean again in two weeks. I can't wait until she is off the steroid. This is what weakens her muscles. That is why most of the babies are delayed a few months. The doctor said that by the time they are two they have caught back up. As of right now Madison's neck/shoulder muscles and leg muscles are the only areas we are seeing issues. I am anxious to get her PT started.

Thanks for all of the prayers, messages, and emails. It has been a wonderful way of staying in touch. Please keep them coming. Even though I will be back in Fairmont, I too will still be a bit isolated. Obviously I don't want to catch something and take the chance of being separated from Madison. Please pray I don't get sick. THANKS.

Monday, October 11, 2004 4:01 PM CDT

Big Sigh!!! Surgery went fine. The actual surgery only took 30 minutes. She was back in the OR for about an hour and a half. She woke up fine and was ready to eat. She is of course really sore. Tylenol seems to be helping right now. We were able to bring her "home" after about 2 hours in the recovery room. She has been asleep all afternoon. She wakes long enough to eat, and I wake her up to give her meds.

We go to clinic tomorrow and she sees her primary doctor. This is mainly to check weight, blood pressure, and her incision. So hopefully it will be a shorter visit.

We should be coming HOME this weekend. It will be soooo nice to be in my own house again.

Sorry for the short update. To be honest, I am tired today. Can't imagine why!?!? (haha) Thanks again for the continued prayers and messages. We really enjoy reading the messages. They are very encouraging to us.

Friday, October 8, 2004 12:11 AM CDT

Good afternoon everyone. First of all I don't know why the question marks appeared where apostrophes were supposed to be in my last entry. Technology isn't always great.

Madison got more great test results back. Her EEG was normal. So no seizure activity. Also the BAER was normal. This tests her hearing, not whether or not she hears, but rather does she process what she hears. It tracks the waves to her brainstem and back. Finally the VER, again NORMAL. It tests vision. Again not whether she can see or not, but is she processing what she sees. It is so overwhelming to see all of these tests are all coming back normal. God has truly blessed us.

Madison goes to clinic Sunday to get two meds through her line. One of these she will continue to get at home once a month, and the other will switch to an oral med. On Monday she has her surgery. They will remove the last central line and put in a port. The port will allow us to draw blood and give meds. Also there is less risk of infection because it is under the skin. So please remember her in prayer on Monday. We should be able to take her "home" right after the surgery. On Tuesday, we go to clinic just to have her port sight checked and to get her weighed. If all goes smooth we should be heading home Sat. Oct. 16th.

Our friend Alyssa is doing very well. She has started making her white cells, platelets and blood. She also smiled for the first time yesterday!! Her older brother also smiled for the first time in three years. He was transplant almost 3 years ago. You can check out their web page at www.caringbridge/ct/oursonryan. Please continue to pray for them also.

We had our meeting with Dr. Kurtzberg and Sue last night. I think we have everything squared away. As I mentioned before Madison will have to continue to be very isolated. We are hoping the weather stays nice for a few weeks after we get home so at least I can take her outside for some walks. After that we will pretty much be confined to the house. But at least it will be my OWN house!!!

Thanks for the continued prayers and messages. We really appreciate them.

Wednesday, October 6, 2004 11:28 AM CDT

Hallelujah!!! The tests are done!!!!! I apologize for not updating yesterday, but we started at 7 am and didn?t get home from clinic until 8 pm. Madison had her EEG, VER, and BAER this morning at 8:30. We will most likely have these results tomorrow. The enzyme level as well as the donor cells test should be back next week.

Madison?s primary doctor and NP are very pleased with her progress and the test results. We have begun to make arrangements to come home. There is a possibility that she won?t be getting her port until we come back in three months. Her doctor is going to discuss it with the surgeon. The surgeon is saying she is too small for the port, but her primary said she thought they had done it before. We will know tomorrow for sure.

Her primary went ahead and pulled out one of the two central lines yesterday. Basically she just pulled it out. No numbing or stitches. The vein and skin just close and heal on their own. It is so amazing how God has created our bodies.

We also met with the developmentalist yesterday. She was also pleased with Madison. Overall she is where most 4 month old babies are. The thing we will have to work on, which I figured, is her shoulder and head strength. The weakness could be a result of the steroids. Only time will really tell. This is the same with her legs. She will bear weight but only for a few seconds. They gave us different exercises to work on that will strengthen these muscles. I am also arranging to have PT (physical therapy) when we get home.

Thursday evening we met with Madison?s NP and primary doctor to discuss coming home. We will get our list of do?s and don?ts for home. Since Madison barely has any immune system she will have to continue to be EXTREMELY isolated. A common cold can be life threatening to her since her body doesn?t have the complete ability to fight it. We hope that her immune system will be up to 80% by January. So even though we will be home, we won?t be able to have Madison around people, especially children until she builds her immune sys. back. So everyone will have to continue to be patient. I know everyone is anxious to meet her, but she isn?t out of the woods yet. And as you know we are entering into cold and flu season.

It is so nice to have my internet back. Thanks for the prayers, messages, and emails. Home is just around the corner.

Friday, October 1, 2004 2:12 PM CDT

God is good!! We have more good news to report. Madison's Echocardiogram came back all normal except for a little thickening of the heart muscle. This is caused by the medication. Once she is off the steroid and one other med,
this will normalize. She also had a lumbar puncture done. This checks for pressure and a protein level. Her pressure was normal. The protein level when she was a week old was abnormal. Usually this doesn't ever go back to normal.
However, Madison's did!!! Her protein level is now in the middle normal range. When the level is high, which is typical in Krabbe, it indicates inflamation in the brain. Again Madison's is NORMAL.

We were so thrilled with this, then her MRI came back. NORMAL, NORMAL, NORMAL!!!! Even the abnormality that was detected when she was a week old is no longer evident. This is such a miracle!!! To be very honest we were not
expecting reports like this. God is blessing us soooo much.

We meet with her doctor on Tuesday. We can't wait to hear what she has to say. We also meet with a developmentalist on Tues. morning. She has a hearing & vision test along with an EEG on Weds. Then on Thurs. her Pre-op screening.
So one more busy, busy week. It is all going so extremely well. THANKS for the prayers. Please continue pray. God is answering them. I will update after our Tuesday meeting. My internet is down right now, so I will have to update pictures when it is up and running again. Hopefully I will get it back
by Tuesday.

Tuesday, September 28, 2004 6:06 PM CDT

Good news, good news!! Thanks for the prayers and please keep them going.
First of all, Madison didn't need blood over the weekend and didn't need it
today!! She is a little low, but holding her own. She will need it in the
next
couple of days. Monday she had her nerve condution study done, and the
results came back NORMAL. It is such a thrill to see the word normal. The
doctor
says this is a good sign when it comes back normal this early. This is one of
the tests we thought would be abnormal. Also her pulmonary function is fine,
which we know she has strong lungs. We are waiting for the Echocardiogram
results. We should have them tomorrow.

Madison's weight was down a tad today, but nothing to worry about. Blood
pressure is still stable. They switch her from the IV steroid today to oral.
She is no longer getting any meds through her central lines now at home. She
still gets two IV meds once a month in clinic and will continue with these once
we are home.

God is blessing us everyday. Madison has her MRI on Thrus. Please keep her
in your prayers. This is one of the most important tests.

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Friday, September 24, 2004 10:58 AM CDT

Good Morning!! Madison is continuing to do well. She GAINED weight!! She is 10lbs. 7.9oz. This is the highest ever. Her blood pressure is stable with the medication. All of her levels are good. Her red blood is starting to trend down. She will have a big blood draw Tuesday, so I know she will get a transfusion. I am hoping that she doesn't have to get it until Tues., but with the other blood we are having to draw, she may need it Sunday. When her count gets below 9.0 she gets sick. It makes her stomach quesy. She is at 9.0 today. They typically don't give a transfusion until the count hits 8.0, but if she isn't feeling well she can have it sooner.

This Monday starts our busy week. I know it will go fast, but I still can't wait until it is behind us. About 20 days until we come home!!!!! I am getting just a bit anxious.

We do labs on Sunday, but hopefully we won't have to go to clinic until Tuesday.

Thanks for all the prayers, messages, and emails.

Tuesday, September 21, 2004 3:04 PM CDT

Clinic was a little longer today. Once a month she gets two IV meds at clinic and today she was due for them. She will continue to get these after we are home. She will get them through the port that will be placed in a couple of weeks. We go to clinic on Friday to check blood pressure and weight.

All of Madison's labs were great. For our medical friends out there: her platelets are now 322 and white count 11.8 all on her own. Red blood still fluctuates because we take so much blood from her little body. Chemistry levels are all in normal ranges except one and that is because of her medications. Magnesium finally hit in the low normal range, which is the first time since we started the supplement. Madison's weight is staying steady along with her blood pressure. Also her rash has gone away, so we may get to wean steroids next Tuesday.

We start her 100th day studies next week. She has a nerve conduction test on Monday. Her Echocardiogram and Plumonary functions are Tuesday. They will also draw labs to send away for her immue system study. It will take 3-4 weeks for the immune system results. We know of course, that this will be very low. It also requires alot of blood, so we are expecting to get a blood transfusion on that Tuesday also. So Tuesday will be a rather long day. Wednesday is a day off. YEAH!!! But Thursday is her MRI. She will have to be sudated for that. I don't like that but she just moves too much(which, of course, I really am happy about). Then Friday will be a regular clinic day. So this will be a long week, but it will go fast and we will be that much closer to coming home.

Please keep Madison in your prayers the next couple of weeks, she will be going through alot!!

Friday, September 17, 2004 9:57 AM CDT

Clinic was quick today!! Madison's chemistry levels (potassium, sodium, etc.) were great. All in the normal range. Her weight was slightly down (by one ounce) so nothing to worry about. Her rash is almost gone too.

Madison is becoming quite active. Her little arms and legs are always moving. She is trying to roll over. I give her about another three weeks and she will have it. She is discovering that "if I cry, mom will pick me up". It is that cry where you know nothing is wrong, she just wants to be held. Of course, she gets held. Also she is starting to reach forward for toys, and everything goes to her mouth.
And of course the smiles and cooing keep coming.

I need to address the eyebrows. I knew it was becoming more noticeable. Her thick, dark eyebrows are from the immue suppressing medication. It is one of the side effects. She will be on it for a few more months, and then we will begin to wean her off of it. Once she is off of it the facial hair goes away. Just like the steroid, soon after we wean her off of it, her blood pressure will normalize. It is nice to know that all of these side effects are temporary.

Thanks again for the continued prayers. Our friend Alyssa is out of the hospital and doing well. Thanks for praying for her too. We don't have to go to clinic until our "big" Tuesday visit. So I will update after that visit. Mid-October is still looking promising. Please remember that in your prayers, too. THANKS!!!!

Tuesday, September 14, 2004 3:37 PM CDT

Madison received another good report today. Since she is doing so well, we aren't going to change anything this week. She gained more weight and her blood pressure is still stable. She will go to clinic only on Tuesdays and Fridays. The doctor is still overly pleased with her progress. Also all but a couple her levels are within normal ranges. The ones that aren't "normal" are because of the meds she takes.

They have scheduled all of her 100 day tests for the week of the 26th and the week of the 5th. We will have most of the results before we come home, which hopefully will be the week of the 11th. She is going to have her central lines taken out and a port put in on the 11th. We meet with a developmentalist on the 5th. Madison's doctor is anticipating an overall positive report from the developmentalist. There are several tests including MRI, EEG, Nerve conduction, etc. that will be done. Also many labs will be done. These require a large amount of blood so she may require one more blood transfusion before we leave. These weeks will be busy, but when those two weeks are done we should be on our way home. About 1 month to go!!

HAPPY BIRTHDAY GRACE!!! We miss you!! It's so hard to believe it has been almost 6 months since she passed away. I like to think that Madison's guardian angel is her big sister.

Thanks for all the prayers!!!

Saturday, September 11, 2004 10:04 AM CDT

We went to clinic yesterday. Madison's weight stayed the same as Tuesday, which is good. Her blood pressure is still stable. Her rash is clearing up, so there is a possiblity that we will reduce the steroid again this Tuesday. It will be a smaller decrease this time, but at least it is a decrease.

Madison has been smiling away!! She has started really cooing too. She lets us know she doesn't want to be ignored. She is also grasping at toys and putting them in her mouth.

We go to clinic Tuesday. They will go over when and where to go for the 100 day studies. These will begin the last week in September. Please pray for positive results. They expect some tests to be abnormal at this point. As we get farther out of transplant these begin to normalize.

I will update again after our Tuesday visit since we don't go back to clinic until then. Thanks for continued prayers.

Tuesday, September 7, 2004 12:02 AM CDT

Madison got another good report today. She still has the rash so we won't reduce the steroid again for a week or two. This is typical of all transplant patients. Her belly is feeling much better. She is eating well and GAINING WEIGHT!!! All levels are still in normal ranges except the magnesium which fluctuates. We just keep adjusting the oral supplement. Again this is very common. Madison's blood pressure has remained stable with the meds, so we aren't going to make any changes until we wean the steroid again.

They are beginning to schedule her 100 day tests. It is hard to believe that is a month away. They want the tests done as close to the 100th day as possible. The doctor doesn't want them done too early. So, it is very possible for us to be home around the middle of October. She will also be getting her central lines taken out and will have a port put in before we come home. This is the plan as long as she continues to do as well as she has been.

Thanks for all the prayers!!! Thanks also for the messages; it is so nice hearing from everyone.

Sunday, September 5, 2004 1:43 PM CDT

Well, we are having a better day! Madison's labs are where we want them. She gained some weight and most important she is back to her pleasant self!! She still has a little rash, but they say it is very minimal. So increasing the steroid a bit helped. We will just have to wean her at a slower rate. Her magnesium is back to where she has been hanging. Her belly doesn't seem to be bothering her anymore so the increase of the steroid helped that. The prayers of course helped too.

The prayers for Alyssa are working too. Her count has been rising, and they are looking to get out of the hospital next week!! Thanks for praying for her too.

If everything remains calm, I will update on Tuesday. As you know Tuesday's are Madison's "big" days at clinic.

Friday, September 3, 2004 9:24 PM CDT

We hit a little bump in our smooth road. Madison ended up needing blood Thursday and her magnesium level dropped. She had to get an IV dose to bring it up. So we have increased her oral supplement. Also her rash flared up so we had to go back to the previous dose of steroids. We will have to do a slower wean of these now. This is common when weaning the steroid. Of course, we were just hoping it didn't happen.

She has been fussy for two days which very unsual. Her belly seems to be bothering her. It could be from the magnesium supplement or from coming off the steriod. Hopefully with being back on the slightly higher steroid dose will fix the problem. If not we may have to adjust the mag. supp. which isn't as easy. Because she doesn't feel good she hasn't been eating as much. Please pray we figure out what is upsetting her stomach.

All other levels are good. Our friend Alyssa's white count went up some, but needs to be higher. Thanks for your continued prayers.

Tuesday, August 31, 2004 6:34 PM CDT

Clinic went well again today. Madison is doing so wonderful. Her blood pressure is staying stable so it looks like we are going to keep all three meds. Since it is so stable there is no reason to make changes. If it were to go lower, then they would reduce the meds.

Weight stayed stable today, which they were pleased with. However a slight increase would really be great to see. All her levels were good. All but two were in the normal range and these two are typically low in all transplant kids. White cell count has remained in the normal range and her platelets are now in the normal range. Her body is doing both on its own. Red blood count is trending down, but we have had to draw extra blood to regulate the level of her immune suppressing med. So we are taking it out faster than her little body can make it. However it will be over three weeks since her last transfusion. So it is looking like she will get blood when we go to clinic on Friday. TWO days off!!!

Her primary doctor says that at this point she sees NO signs or symptoms of Krabbe disease. She is doing things ahead of schedule with regards to meds. So we are now down to only one med through her central lines. They switch one of the last two meds from IV to oral. And this IV med could be dropped next Tuesday.

We are still getting great news. Please continue to pray.
Our little friend Alyssa's count has increased for the last couple of days, so please continue to keep her in your prayers too. THANKS!!!!!!

Sunday, August 29, 2004 8:44 PM CDT

Clinic was short today. Madison's levels were great!! Her blood pressure is staying down where we want it.

Weight was slighly down again. She is still eating well, but not gaining weight. As long as on Tuesday she is the same or her weight increases, they won't put her back on the TPN. So please continue to pray for weight gain.

Everything else is wonderful. Madison is really doing well. She is smiling all the time, but it is getting hard to get them on camera. She is fascinated with the camera and so it is hard to distract her. She is reaching more for her toys, and she tries pulling them to her mouth.

Tuesday is our "big" day for clinic. So I will update after we get back. Thanks for the continued prayers for Madison and for our little friend Alyssa. Alyssa needs her white cell count to go up.

Friday, August 27, 2004 8:06 PM CDT

Madison is still doing great!!! All of her levels were good today. She is remaining stable where she is expected to and increasing where she should. Her blood pressure is still down so we decreased one of the 3 meds today. If she is still down on Sunday she comes completely off of it.

Her weight was down slightly today, but they will only get concerned if it would continue to trend down. So please pray her weight remains stable or goes up. Also keep our friend Alyssa in your prayers. She needs her white cell count to go up up up!! Her mucositis is getting better and she is eating much more.

Madison made it through her first bath without screaming. We are going to try again tonight to see if that was just luck. We have tomorrow off from Clinic but have to go Sunday, mainly to check weight. They want to get to the point where we only have to go on Tuesdays and Fridays.

Thanks again for all the prayers and messages!!

Tuesday, August 24, 2004 12:59 AM CDT

Praise the Lord! Madison got an A+ from her primary doctor today. She said Madison couldn't be doing better.

Madison gained weight since Sunday. Her blood pressure was still good, so we got to reduce one of the three BP meds. Next week she might get to go off of it completely.

We reduced the steroid again. And we switched one of her IV meds that prevents fungal infections to an oral med. She is now on only two IV medications.

If she continues to do this well, around her 100 day point, she may get to have her central lines removed and a port put in. A port is under the skin, so there is less chance of infection. Also she can be in water and we don't have to worry about her grabbing it and accidentally pulling it out like the lines.

I am always updating the medical stuff and I slack on what Madison is doing. She is growing and changing so much. She is starting to reach and try to grab toys. She twists her head and upper body trying to roll over. When we lay her on her belly for tummy time, she is starting to lift her head and hold it. Of course as you can see from the pictures, she smiles all the time. She is starting to coo more and more as well as give us a little giggle with the smile.

Thanks for the continued prayers and all the messages and emails. We have two days off from clinic so I will update after Friday's visit. I will try to get new pictures up today or tomorrow.

Sunday, August 22, 2004 1:38 PM CDT

Hello everyone. We have another good report. Madison maintained her weight from Friday, along with her magnesium level. Her blood pressure is still stable, so they will most likely take her off one of the three BP meds on Tuesday.

Please continue to pray that her weight continues to remain stable and to gradually increase. Right now that is one of our biggest concerns. Eating issues and poor weight gain is something that keeps patients down here past the 100 days.

Also as we continue to wean her off the steroids, her blood pressure will normalize on it's own. So she will eventually come off the BP meds altogether. As I have stated before, they will continue to wean the steroid as long as the rash doesn't flare up.

It is hard to believe school is starting back this week. I am going to miss not being there in the beginning.

I will update Tuesday, since we have a day off tomorrow. Tuesday we met with her primary doctor who has been out of the office for a couple of weeks. I am anxious to get her opinion of Madison's progress.

Talk to you Tuesday.

Friday, August 20, 2004 11:11 AM CDT

Good news again. Madison's weight was slightly UP today. She has been off TPN now for 3 days. As long as she continues to maintain or gain weight we stay off of TPN. Blood pressure was also down where we want it. All her other labs were fine except the magnesium. So today we will give her an oral supplement.

We get tomorrow off and will run all labs Sunday. And of course check weight and BP.

I tried putting new pictures on last night but had some trouble with it. So I will try again today.

Thursday, August 19, 2004 3:49 PM CDT

We got another good report at clinic. We didn't have to do the labs that give white count, red count, or platelets because she has been so stable. We will do this set of labs on Tuesday.

Her chemistry labs, which show us potassium, sodium, magnesium, etc. along with liver, kidney, and other functions, were all where they needed to be with the exception of her Magnesium. It is a little low, but that is expected because she is now off the TPN. If it goes any lower tomorrow, we will give her a supplement by mouth.

Madison's weight was down slightly, but they are going to give a few more days off of TPN to see what she can do on her own. So please pray she gains or at least maintains her weight. Her blood pressure was still down. If it remains down the next couple of days, they will lower that 3rd med again, or possibly take her off of it.

We have to go to clinic tomorrow just for weight and blood pressure. So it should be a short visit. If everything is stable we will get Saturday or Sunday off.

Tuesday, August 17, 2004 3:39 PM CDT

Another good day at clinic. Her weight is slightly up and therefore we go off TPN (IV nutrients) as of tonight. As long as she continues to maintain her weight, she will stay off of it. We were able to decrease the steroid again. Again as long as her rash doesn't pop up, we will continue to wean her off.

Blood pressure was wonderful today, so we are backing of one of the three meds. The newest med is working. We get tomorrow off from clinic, and we will see Thurs. if her weight, BP, and labs are still good. If they are we might even get two days off from clinic.

I believe the saying goes that miracles don't happen everyday. I must disagree. I AM seeing miracles everyday. Madison is doing so remarkable and that is not just by chance. Prayer is powerful.

I would like to ask for prayer for our friend Alyssa. She is 1 month old and just went through transplant like Madison last Weds. She is now starting to deal with the mucositis (mouth/stomach sores). She also has a long road ahead of her, just like Madison. It is amazing how many children are suffering from one disease or another, and have been through transplant. Please keep all of these children in your prayers as you continue to pray for Madison.

Monday, August 16, 2004 8:40 AM CDT

Well another day of no labs and no clinic!! Yesterday Madison's lab reports were still great. Her platelets that we thought she would need today or tomorrow came up on their own!! I can't wait to see her primary NP tomorrow. The platelets are the last thing to come back.

We do go to clinic tomorrow. Tuesdays are her "big" day. She gets her IVIG (antibodies), which she gets every Tuesday. This is also the day they decide on major changes. They will most likely reduce the steroid again and we will discuss whether or not to take her off the TPN. This will of course depend on her weight.

Again she is doing spectacular!!! Please keep praying. Oh, BP was down yesterday. Hopefully the new med is working.

Saturday, August 14, 2004 8:51 AM CDT

YEAH!! We get to stay home today. No clinic and no labs!! Our first full day off. We are going to sit back and relax. At least we are going to try. Madison may have other ideas. She'll want to play. She loves the attention.

We go to clinic tomorrow and if all is still stable we will have Monday off too.

Time down here has gone relatively quick. Today is DAY 50 past transplant. We are halfway. With everything going so smoothly, it is looking promising to leave around Madison's 100th day. Many families don't get to leave at 100 days because of different issues. Madison at this point doesn't have any "issues" that would keep us here.

Please pray for her BP to come down, her weight to go up, and that all else remains stable. Thanks for the prayers and to all that leave messages and emails. We enjoy reading them and they continue to encourage us.

Thursday, August 12, 2004 4:47 PM CDT

What a long day!! Madison got a blood transfusion today and that takes over three hours. We are still dealing with her high blood pressure. Good news is that they think this will be the last blood transfusion she will need. We are going to be drawing blood every two to three days now and with her making her own, it won't get depleted. The only other reason she would need one is at the 100 day mark, when they repeat tests it requires a lot of blood. They are going to try to space them out, hopefully that will give her body time to replenish it. Therefore not needing the transfusion.

She is holding steady with her platelets too. So it may still be 2 or 3 days before she needs platelets. White cells are remaining stable on their own.

We have to go to clinic for the next several days just long enough to check blood pressure and weight. These should be quick visits. The blood pressure is coming down, but slowly. Her weight is staying stable, but we need it to increase in order to get off the TPN (IV nutrients).

Madison is smiling a little more each day and cooing a lot.
She is growing and changing so much. They are still very pleased with her progress.

Thanks for the continued prayers.

Monday, August 9, 2004 3:21 PM CDT

Well, everything is still going quite well. Madison has continued to maintain her white cell count without any medication. She has gone two weeks without needing a blood transfusion, but will probably need one in the next couple days. This is great!! Also she has gone over a week without platelets. This is really good because the platelets are the last to start coming back. This means her body is starting to make them.

Blood pressure is still not under control. Those awful steroids. If it is not down tomorrow with the increased med we are giving today, they are thinking of trying another med. Also they will probably reduced the steroid again since her rash is still very mild. Reducing the steroid will also help bring down her blood pressure. It is the reason her blood pressure is high.

Madison is still on TPN(IV nutrients). Her weight is staying stable. She is eating well, but with everything her body is having to do - heal from chemo, make red cells, white cells, platelets, and just normal baby growth, she is burning a lot of calories. If by next Tuesday she has gained weight, they are will take her off to see what she does. We can always put her back on it if necessary. She is doing so well, we don't want to mess anything up.

After tomorrow, we won't need to go to clinic everyday. Her levels have all been quite stable, so we can go a day or two between visits. We may only have to do blood draws every other day also. This will allow her to go even longer between blood transfusions.

Hope everyone is enjoying the pictures. She is growing and changing so much and so fast.

Keep the prayers going. Madison is truly an example of the power of prayer.

Friday, August 6, 2004 1:37 PM CDT

Well we made it out for our first walk last night and went again today. It was refreshing to go outside. Madison feel asleep after about five minutes. We are getting our first smiles too!!!

Madison's white cell count went from 4.7 to 5.3 on it's own. No med to increase it!!! Her red cell count is stablizing. The main reason it drops is because we have to draw so much blood each day. But even with the daily draws it is quit stable. Her little body is manufactoring all these cells very nicely.

We are still trying to get the blood pressure down. We keep increasing the meds, but it hasn't come down yet. They say it just takes time to get the right dose, and they don't want to increase to much and make her BP dropped too much.

Thanks for the continued prayers, messages, and emails. All are encouraging to us.

Tuesday, August 3, 2004 2:23 PM CDT

We met with Madison's primary doctor today. She is very pleased with Madison's progress. We get to cut TPN (IV nutrients) in half and possibly take her off of it Friday or Saturday. They are reducing the steroid again this week, and she no longer will get the med that causes white cells to grow unless her count falls below 3. It was 9.6 this morning.

We had to increase her blood pressure medication though. This is high because of the steroids. It should begin to regulate as we continue to reduce the steroid.

Good news! We get to go outside without a mask. As long as there isn't anyone nearby and no construction or landscaping type things happening, Madison can be outside and not have to wear her mask. We are hoping it is cool enough later tonight to go for a walk around the apartment complex lots.

Thanks for all the prayers, they are still working. We appreciate the messages that are being left for us.

Monday, August 2, 2004 3:45 PM CDT

Things are continuing to go well. We meet with Madison's primary doctor tommorow. They are not giving her the medicine that makes her white cells grow now unless her level hits 3.0 or lower. This should encourage her body to make the white cells on it's own. She did get her platelets this morning, but red blood is still good. She shouldn't need a transfusion for several days.

She is gaining weight, so hopefully tomorrow they will wean the TPN (nutrients)or completely take her off. Also I am hoping that they will wean the steroid more.

Madison is growing and changing. She is starting to develop a personality. She can be little miss attitude. She hates getting a bath. She screams until you lay her on the towel and wrap her up. She immediately stops and just looks as if to say "I knew I would get my way". Other than that she is still the most content baby. She still only gets up once or twice at night and that is to eat.

Thanks again for all the prayers. Thanks also for all the kind messages.

Friday, July 30, 2004 2:28 PM CDT

All is still well! We have been going to clinic each day. The last several days have been uneventful, which is good. All of Madison's levels are doing what is expected. We are continuing to reduce med doses.

We did get the results of the donor cell test. GOOD NEWS!! Donor cells are present!!! This is the first big step. The next "BIG" test will be done closer to 100 days past transplant. It is an enzyme test. This one is very important!

Madison will probably receive platelets over the weekend. She won't likely need a blood transfusion for a week. She is really do great. Keep the prayers going.

Tuesday, July 27, 2004 6:18 PM CDT

HELLO ALL! Madison is still doing well. She got another good report today from her primary doctor, who we see every Tuesday. Madison is doing what they expect as far a levels. They are going start the weaning process of the med that causes white cells to grow since her count is now at 20.1. The have also lowered the steroid more(this is what suppresses the immune system). In addition, they are cutting back on her TPN (nutrients) since she seems to be eating well. As long as she continues to gain appropriate weight, the will continue back off of this.

These are all good things. She did receive blood today, but it has been over a week since her last transfusion. The longer she goes without transfusions the better. She got platelets yesterday. She is getting these about every 4 days. Platelets one of the last things to come back, so this is expected.

Since Madison has the rash, this is a good indication that the donor cells are growing. Her body wouldn't react to her own cells this way. However, we sent blood samples away to be tested to verify that they are indeed donor cells. We should have those results anyday. Hopefully tomorrow.

Good things are still happening. Thank God for all He has done and continues to do.

Friday, July 23, 2004 12:41 AM CDT

With a few more days under our belt, we are adjusting well. It is so great being out of the hospital. Madison got more platelets yesterday. She will get a blood transfusion in the next couple of days. There is more time between platelet and blood transfusions which is good. Her white cell count was 7.9 today. Once she hits 10.0 or more they will wean her off of the med which increases cell growth. This will let us know if she is starting to make them on her own.

Also if her rash doesn't get worse, she will continue to be weaned off of the steroids. She got another good report today at clinic. They are still very pleased with her progress.

I thank God that the road so far has been smooth. Thank you to everyone who is praying for Madison. Please continue to pray.

Friday, July 23, 2004 12:41 AM CDT

With a few more days under our belt, we are adjusting well. It is so great being out of the hospital. Madison got more platelets yesterday. She will get a blood transfusion in the next couple of days. There is more time between platelet and blood transfusions which is good. Her white cell count was 7.9 today. Once she hits 10.0 or more they will wean her off of the med which increases cell growth.

Also if her rash doesn't get worse, she will continue to be weaned off of the steroids. She got another good report today at clinic. They are still very pleased with her progress.

I thank God that the road so far has been smooth. Thank you to everyone who is praying for Madison. Please continue to pray.

Wednesday, July 21, 2004 12:50 AM CDT

Things are beginning to settle down. Clinic was only about 2 1/2 hours today. Everything is still as they expect it to be. Her cell count jumped to 4.9. They want it to get to about 10 and stablize on it's own. Right now she is receiving a medication that helps white cells to grow. She had to get a blood pressure med, which has been a daily thing and will probably continue to be until she is off steroids.

She is doing remarkably well. She doesn't seem to like most of the oral meds, but she does well taking them.

She is a getting more curious about things around her. You can keep her attention when you talk to her. She has continued to keep a good sleep schedule, which I am thankful for.

I got the pictures updated! ENJOY!

Please continue to pray.

Tuesday, July 20, 2004 7:16 PM CDT

It is really great being out of the hospital. I am having to learn even more than I ever wanted. I am getting it. Madison is still on several IV and oral medications, which I have the honor of giving. I think I truly could be a nurse now.

We attended our first clinic today. We were there about 6 hours. This isn't too bad, but with administering meds, drawing labs, and doing normal baby care the days are going too be long for a little while. Anyway, Madison is still doing well her cell count was 3.3 today. All her other levels are where they expect them to be.

Madison has to wear a mask while out of the house at all times. She doesn't seem to mind it too much.

Thanks again for all the prayers. They are indeed working. We still have a lot ahead of us, so please continue to pray.

I hope to find time to update pictures this week.

Monday, July 19, 2004 7:43 PM CDT

WE ARE "HOME"!!!!!! They discharged Madison today. We start going to clinic everyday. Things are going well. I am a bit overwhelmed today trying get settled and organized. I will give a more detail update tomorrow or Wednesday.

Saturday, July 17, 2004 4:17 PM CDT

Good News!!! Madison's cell count went from 1.5 to 1.9 today. She still has not needed pain meds. So early next week for discharge is looking promising. She is continuing to eat well, so hopefully she will be off TPN soon.

We are all looking forward to be out of the hospital. We will go to clinic each day, but at least we can be at "home" during the evenings and fix homecooked meals.

Keep the prayers going. Thanks!

Friday, July 16, 2004 6:17 AM CDT

Good news! Madison's counts seem to be climbing again. She was 1.4 yesterday and 1.5 today. The doctors want to see a continuing increase of the white cell count before discharging her. Also she has gone two days without the pain med. We have only had to give her tylenol, which can be done outpatient. We think the mucositis is healing, and that it is bone pain. Her blood pressure tends to start going up in the afternoon, and she becomes restless and uncomfortable. If we start the tylenol just as she begins acting this way, it seems to help.

Thanks for continuing to follow Madison's progress and for keeping her in your prayers.

Please be sure to sign her guestbook. We look forward to reading them, and they are encouraging to us.

Wednesday, July 14, 2004 10:35 AM CDT

Madison is still doing very well overall. The doctors are very pleased with her progress. However we had to do pain meds again last night. It is sometimes hard to tell whether the pain is mucositis or bone pain. I really wish babies could tell you what is wrong.

We are still looking to be discharged late this week or early next. Again, she has to be off the pain meds. One good thing about being in here is that it gives me more time to practice cap and dressing changes, along with blood draws before I'm on my own.

Madison will be getting another blood transfusion today. They are weaning her off of TPN (IV nutrients). It is possible she could be off of it by the time we are discharged. As long as she continues to eat well and gain weight.

Please pray she doesn't need pain meds and that she continues to eat well. Remember also to thank Him for letting her do so well overall.

Tuesday, July 13, 2004 9:56 AM CDT

It's looking like it will be the end of this week or the beginning of next before we are out of the hospital. Madison has had to have pain meds for a couple days. However she went all day yesterday without and seems fine again today. She can't go outpatient on this pain med and it is the only med that helps pain caused by mucositis. So hopefully, we will still be out of here by the end of the week. We obviously don't want to take her home too soon.

Her cell count stayed at 1.5 yesterday, and dropped to 1.2 today. This is all expected by the doctors, just not what we wanted. Her ANC is still over 500 which we want. We will continue to watch her cell count. Hopefully these will go up and she won't need any more pain med.

Madison will be getting platelets today, and probably get another blood transfusion in a day or two.

She now weighs between 9 1/2 - 10 lbs. It fluctuates because of fluids. She is growing and changing everyday.

Please continue the prayers for Madison. They are working, she has, overall, had a smooth journey so far. We want it to continue this well.

Sunday, July 11, 2004 9:45 AM CDT

God is good. Madison's white count went to 1.5 today. The ANC which needs to be 500 or more was over 900. She is heading in the right direction. So it still looks promising that we will be out of here this coming week.

We had to give her a small dose of pain medicine yesterday. She didn't want to eat. Now that the white cells are coming back, they are fighting off the mucositis, which can inflame it. After the med she began eating again. She seems a little better today.

The power of prayer is great. Please keep praying, we still have a long road ahead.

THANKS

Saturday, July 10, 2004 9:17 AM CDT

Madison's cell count continues to climb. Yesterday she was .9 and today 1.0. There is a formula they use to calculate her ANC. The ANC needs to be 500 or more for three days in a row. Yesterday the ANC was 531, but she dropped today to 460. We are hoping this will go back up tomorrow. It is common for this number to fluctuate also.

Madison received another blood transfusion this morning, and she will probably get platlets later today or tomorrow.

Madison is continuing to grow and develop. She weighed a little over 10lbs. this morning. She is constantly looking around. She is still sleeping through the night. I have to wake her up to feed her. God has blessed us with a very content baby. The only time she cries is when she is hungry or when she is being changed. She loves to be held, which is no problem.

Please pray her numbers continue to increase so that we can be out of the hospital next week. Again we thank everyone for all the prayers, messages, and emails. The prayers are working and the messages and emails are encouraging.

Thursday, July 8, 2004 4:40 PM CDT

Madison is doing great!!! Her white cell count went to .8 today. They are starting to adjust meds so that will be ready if we go home early next week. Her steroids were increased to clear up her rash. It is less red today.

We are anticipating that her cell count will continue to increase and not fluctuate now. With such a fast increase in the white cells, it causes pain and achiness in the bones. Madison has tolerated it well. For the first time in several days we had to give her some Tylenol. It did the trick.

When we get out of the hospital, in addition to going to clinic each day, we will be doing IV meds through her central lines at "home". Also each morning we will do blood draws before going to clinic. Clinic days I heard can be long days. But as I said before, we will atleast be out of the hospital!!!

Wednesday, July 7, 2004 1:10 PM CDT

GOOD NEWS!!! Madison's cell count is still going up. She went from .2 to .5 this morning. The doctor believes at this point she should continue to go up and not teeter back and forth now. If she continues at this rate and she doesn't get any infection, we MIGHT be getting out of the hospital some time next week!

If we get out next week, we will still need to bring her to clinic here at the hospital everyday. She will continue to get transfusions of blood and platelets. But we will at least be out!!!! She will still need to be quite isolated and will wear a mask whenever she is out.

Madison doesn't seem to be losing anymore hair. It looks like is just naturally thinned out.

She is still doing great. They are really pleased with her progress. Keep the prayers going. They ARE working.

Tuesday, July 6, 2004 1:13 PM CDT

CELLS ARE GROWING!!!! Yesterday Madison's count was .1 and we are told that this will fluctuate. So today we were expecting it to drop back down. Instead she hit .2. Again it could drop tomorrow and be back up the next day. She has also developed a rash, which usually indicates that cells are growing. In a few weeks we will test to make sure it is the donor cells growing and not her own. The rash usually indicates that it is donors cells because her body shouldn't react to her own cells growing. So over the next few weeks we will be watching the level fluctuate, but ultimately increasing.

She is continuing to do well. She has been a little drowsy, but today she has been awake and sqirming. Still no more pain meds have been needed. Continue to pray the cell grow quickly!!!

Thanks for all the thoughts, prayers, and emails.

Saturday, July 3, 2004 10:45 AM CDT

Madison is still doing well. She is still eating some and she just started taking her pacifier again. The mucositis doesn't appear to be getting any worse. She is now on blood pressure meds because of the steriods and some fluid retention. We started noticing that she is losing her hair, which is the side effect of the chemo.

She received platelets yesterday and her second transfusion this morning. She handled both well without tylenol or benedryl. She had a slight fever for about 30 minutes after the blood transfusion, but it went down on it's own.
We haven't had to give her anymore pain medication. She is content almost all of the time. She sleeps at night and has playtime in the day. She is growing and becoming chunky.

We hope everyone has a great 4th of July!!!!

Wednesday, June 30, 2004 12:33 AM CDT

Well, I am finally getting a chance to update. Monday was quite an eventful day. Madison had quit nursing and was sleeping a lot. All of a sudden her oxygen level dropped and she turned blue. We had to suction her several times. Because she has such a small airway and the mucositis causes it to swell we thought that was the problem. However, the problem was the pain medication. It was knocking her out and she was too out of it to keep her throat clear. We took her off of the pain meds and each hour we saw her improve.

So we are now off pain meds and other than being a little irratible, she seems to be doing very well. She was just really sensitive to the pain meds, so we will have to watch her. Mucositis usually peaks at day 7 after transplant and we are at day 5 today. So hopefully this is the worst of the mucositis. The pictures I am putting on were taken today.

Please continue to pray for those white cells to grow quickly. The prays are working, the doctors are real pleased with her progress. Even what happened on Monday was not unusual for transplant patients.

Keep the emails and messages coming, we love reading reading them. It is very encouraging to us.

Monday, June 28, 2004 11:45 AM CDT

Madison has been doing quite well. However, we are now beginning to see the side effects of the chemo. She has developed mucositis. This is when sores line the mouth down through the stomach. It also becomes inflamed. Unfortunately, it is painful. She is on pain meds, which seem to be helping. However because her mouth is sore, she doesn't want to eat. This, I'm told, is very typical. Mucositis will continue until her white cell count increases. So please pray these cells grow back quickly.

Madison is receiving her 2nd blood transfusion today due to her low red cell count. Again this is typical post transplant. Some receive transfusions several times a day and others every few days. It varies for each person.

Thanks for all the continued prayers. Also thanks for the emails and cards. We appreciate and enjoy hearing from everyone.

Saturday, June 26, 2004 10:44 AM CDT

MADISON HAS RECEIVED HER TRANSPLANT!!!!! Everything went pretty smoothly. We hit a little bump, but all is fine. It only took an hour. Her blood pressure went up which was expected, but came down on it's own. She didn't need any extra meds. It was a big day, but again not too eventful.
To see Madison, you would never know she has gone through anything.

The next few days should be quiet. The side effects from the chemo and other meds typically begin to show a few days after transplant. Some of these include mouth & stomach sores, achiness in the bones, high blood pressure, and some irratibility.

We will now closely watch her counts: white cell, red cell, and platlets. She will be give transfusions as needed based on these levels. The transfusions will be given through her central lines. We pray now that the donor cells grow quickly.

Each day Madison is becoming more and more active. She tracks her toys and is constantly squirming. She is such a precious blessing.

Wednesday, June 23, 2004 7:53 AM CDT

We want to thank everyone for their prayers and support. Madison made it through the immune suppressing med with no apparent side effects, no fever, no rash, and no hives!!! She has two more of these treatments, but the side effects decrease with each treatment. So she will most likely do just as well through these. Today is also her last chemo treatment. All her labs are either normal or dropping the way we were told they would.

She is now off the seizure med (use to prevent seizures which was a possible side effect of the first chemo treatment). This caused her to be a little drowsy. Now that she is off of it, yesterday was actually a good day rather than the worst day we expected.

Thanks for all the messages and emails. It's nice to hear from everyone. The prayers are being answered, so please keep praying. Everything so far is going smoothly.

Monday, June 21, 2004 10:12 AM CDT

Madison started the next set of chemo meds last night. So far it has not bothered her. She is getting an anti-nausea med along with an antibiotic just as a preventative measure. She will start the "nasty" med tomorrow. This typically causes the high fever, rash, and hives. During this they will give her tylenol as needed as well as benedryl. Hopefully this will make her somewhat drowsy, so she won't feel completely miserable. They say her fever can go very high the first day, but it tends to get less over the next two days. The anticipation of what could or might happen is one of the more difficult things to deal with. Madison is doing really well. She is an amazing baby and still very content.

Yesterday, she spent about 3 hours awake and looking at her toys. She is beginning to coo more and more. Madison is still eating well also. I hope over the next couple weeks she continues eating well, because of the possible side effects some kids don't feel like eating much.

We are just taking one day at a time. The doctors and nurses have all been wonderful. I have dealt with alot of people in the medical field and it takes a lot to impress me and they have down here.

Other than the fact that this is a devastating situation, God has allowed things to fall into place. We must remember He is in control. Things have to happen in His time and by His plan. We just have to continue to look to Him for our strength.

Saturday, June 19, 2004 11:45 AM CDT

Madison has another day under her belt. She was more alert yesterday and today. She is adjusting to this set of meds. She begins the next set of chemo tomorrow evening. So far things are going smooth. The major side effects typically don't show up until about a week after transplant. This will be after the 25th. We do hope her side effects will be minimal. We have been told that the infants usually deal well with the side effects.

Madison's jaundice level is almost down to where they want it. She should be able to lose the biliblanket tomorrow. Also the NG tube comes out tomorrow evening. All meds starting tomorrow night will go through her central line.

Madison is a strong baby. She is also very content. I usually have to wake her at night to eat. Right now she only cries when she is hungry or we are bothering her to get vitals. She is such a blessing.

Thursday, June 17, 2004 11:07 AM CDT

Madison started her chemo early this morning. We had an NG tube put in so that taking oral meds will be easier on her. The meds have made her a little sick, but mostly sleepy. She will have the NG tube until Sunday, then the next chemo med will be given through her central line. Transplant will be on Friday the 25th. By that time her cell counts will be dropping, which will cause her to be highly susceptible to infections. We will keep her quite isolated. Even after she is out of the hospital, it will take several months for her immune system to build back.

The side effects vary from mild to severe. Most side effects show up after the chemo treatments are done. She will receive a med Tues. through Thurs. that usually causes a high fever. This is a drug that suppresses the immune system. It will help keep her body from rejecting the transplant.

She is now starting down her long road. Please pray that it is as smooth as possible.

Tuesday, June 15, 2004 2:27 PM CDT

WE'VE CHANGED ROOMS!!! We are now in room #5213.

Madison made it through surgery yesterday with no problems. They placed two central lines, which will allow for blood draws, meds, transplant, and transfusions. She didn't even need pain meds afterwards. Her jaundice level is still a little elevated, but we are looking at Thurs. to start chemo. If we start Thurs., transplant day will be Fri. 25. Please pray that her jaundice level continues to drop.

Sunday, June 13, 2004 3:34 PM CDT

We met with the surgeon and anesthesiologist today. Madison is scheduled for tomorrow morning to have her two central lines placed. Her jaundice level is normal for a 2 week old, but in order to begin transplant, it must be lower. At the rate the level is coming down with the use of the biliblanket (a special light), the chemo treatments should begin on Wednesday. She will receive eight days of chemo and on day ten she will receive the transplant. In addition to the chemo, she will receive immune suppressing drugs which will keep her from rejecting the transplant. We just ask that everyone continues to pray for Madison as she goes through all of this.

Thursday, June 10, 2004 1:04 PM CDT

We arrived at Duke University Sunday, June 6. Madison was admitted and began pre-transplant work-up. All tests results so far are coming back in Madison's favor, so we will be going into the transplant on a positive note.
She is growing and gaining weight. This morning she her weight was 7lbs. 2oz. Madison is scheduled to have a central line placed on Monday, June 14, 2004. Once that is in place, the chemo should begin the next day. We want to thank everyone for their extreme generosity. Please keep Madison in your prayers as she begins this long journey. The address for the hospital is:
Duke Hospital
Madison Tierney
Room# 5209
Durham, NC 27710

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