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Tuesday, September 13, 2005 1:52 PM CDT I am working on a new webpage. Please check it out @ www.themartingirls.blogspot.com. Its a work-in-progress so please be patient. Come back often and check it out! Please leave a comment so I know you were visiting! Thanks - Jenn
Wednesday, August 24, 2005 10:51 AM CDT Wow, I can't believe its been so long since I've posted - that's good news! Shelby continues to grow, grow, grow and thrive, thrive, thrive! We couldn't be happier about her energy level and her ambition! Yes, it is exhausting being around her all day, but so worth it! She is such a joy!
Today is Riley's first day of Kindergarten. Nothing too new for her, though, as she goes to a Montessori school. They start at age 4 so she is doing the same thing as last year, except she gets to do "kindergarten" stuff now. Shelby is o.k. with her sister leaving today, but she knows she'll be home soon. We'll see how tomorrow goes...
Next week Shelby starts CDO (Children's Day Out) 2 days a week. Right now I'll be the teacher's aide in her classroom, but as soon as more kids enroll I'll be the teacher in the younger classroom.
Shelby received a good report from Dr. Langman (Nephrologist who diagnosed and is managing her treatment for Osteoporosis) last week. He is very pleased that she has not had any broken bones since June of 2004 and that she is growing really well. We go back to see him in 6 months. Next month she sees Dr. Deutsch (her local GI) and then in December she sees her transplant team again. We pray that she continues to do well for many, many years.
Thanks for checking in...
Love,
Jenn
Wednesday, July 27, 2005 3:00 PM CDT Hello All!
Summer sure is flyin' by, isn't it? It is for us! We are enjoying the beautiful, cooler weather here in northern Illinois. The girls attended vacation bible school at Brooke Road UMC last week and just loved it! I was a "tribe leader" and had quite a bit of fun, too. I can't believe that Riley starts Kindergarten August 23rd - seems too soon! We are still keeping ourselves way too busy.
Check out the new pictures! Last thursday night we were at the Rockford Riverhawk's game to present the Gift of Hope with the money raised by Shelby's commercial. I think the total ended up being around $4200, but the check says $3800. Then, last saturday at RibFest we had several volunteers work the beer tents to raise money for Shelby. Last year we received $2000 for her COTA fund for those efforts, so let's see what happens this year. Watch for details coming soon for the next fundraising event August 14th at Dalton's Saloon in Rockford.
By the way, Shelby is feeling great! Yahoo!!!! We are very blessed by everyone's continuing prayers for her. Let's pray that her transplant doesn't have to take place for 5, 10, or even 20 years from now. Just think of how far the medical field and technology will have advanced by then! Maybe by then they'll have developed new ways to help her sick liver without a transplant - who knows?!?!? Wouldn't that be awesome?!?!? Keep the prayers comin'....
Love,
Jenn
Monday, June 13, 2005 4:44 PM CDT I have GREAT news!!!! Shelby is doing well enough to be removed from the waiting list!!!!!!! She had clinic in Chicago last tuesday and checked out super. As long as she stays healthy we don't have to see a liver-related doctor for 3 months (here in Rockford) and then in 6 months (in Chicago). Thank you everyone for your continued prayers for her!!! That is what is making her do so well!!!
Her doctors agree that a liver transplant is still in her future, but are not planning on her needing one anytime soon. There is too much damage to her liver causing her other organs to suffer a bit, too, BUT her body is compensating extremely well for having such a rotten liver. She still has Biliary Atresia - it doesn't "go away" until she has a transplant - and it will continue to take a toll on her body as she grows.
She is enjoying the warm weather with her sis and is still as energetic as ever! See you all Saturday night!
Love,
Jenn
Monday, May 9, 2005 4:15 PM CDT O.k., Scott has been wanting me to update this page with new pics and stuff, so here it is. Actually, its been nice to not have to post anything "new" going on with Shelby. She (and we) is enjoying having NO food allergies and is slowly expanding her food selection.
Last week she had her first "liver" labs in 2 months and they looked great. Not normal, mind you, but very good for her. Despite that, she is still on the waiting list. She has been on there now for 1 year and 7 months...
I hope you enjoy the new pictures! Take care and we hope to see you at the Pirates Over 40 event!
Love,
Jenn
Saturday, April 16, 2005 9:48 PM CDT Well, the night went fine and so did the next day. We took her out for cheese pizza (at her request) the next day. She didn't eat much, but its all new tastes for her. She loves cheese nips and goldfish crackers - we think she's amazed that crackers can have taste to them. She's doing super, super, super!!!! Today we had 2 birthday parties to go to and she could eat whatever she wanted and I didn't have to take "special" food for her - hooray!!!!!
Love,
Jenn
Wednesday, April 13, 2005 10:08 PM CDT About a month ago Shelby had the RAST testing done on tomato, eggs, and dairy. All her numbers were down significantly from the previous year! We've been giving her ketchup for about 2 months now with absolutely no problems, and for quite some time we've given her baked goods made with eggs and she hasn't had a problem with that either.
Well...today we had an allergist appointment and it was decided that we would challenge the dairy. I have to tell you I held my breath more than a few times while she gulped down 8 oz. of cow's milk (flavored with Hershey's syrup, of course, so she would like the taste). Actually, they did the skin prick test first and that came back negative, so I wasn't as worried as I had been before that...Anyway, she did great! Not 1 hive!!!!!!!!!!!!!! We did have to stay at the doctor's from 1 p.m. - about 4:15 p.m., but I took along my bag of super-duper doctor's-visit-only toys and we survived. As long as she makes it through until morning o.k. and tolerates another cup of milk for breakfast we are home-free with the dairy. Pretty unbelievable if you ask me! We are thrilled for our little peanut that she is on the road to adding "normal" eating/foods to her line-up. Her big sister is very, very happy that she can soon share her favorite foods with her little sis.
I'll let you know how tomorrow goes!!!!!
Love,
Jenn
Wednesday, April 6, 2005 9:53 PM CDT Just a quick update. Nothing much going on here. Shelby had a "normal" kid ear infection last week, but a 10-day run of pink medicine seems to have cleared it up. She is enjoying being outside with the nice weather we have had and has perfected annoying her big sister! Keep the prayers coming...
Love,
Jenn
Tuesday, March 22, 2005 8:13 PM CST Drum roll please...Shelby DOES NOT have Pulmonary Hypertension. Yea! Yippee!! Yahoo!!!
It was a long, long day of testing and lots of stethescopes were involved, but she made it through because she's a brave and tough little girl. I won't go in to alot of detail, but we did leave at 6:30 a.m. for a 8:30 echo that didn't get done until about Noon. We were supposed to see the cardiologist at 9:30, but because her echo took so long (let's just say Shelby was her "normal" 3-year-old, not-so-cooperative self) we had to wait until the doctor came back from a meeting after 1 p.m. We finally arrived home about 5 p.m.! Luckily, Shelby did sleep the entire 2 hours home and, boy, did she need it. Oh yeah, Mommy slept most of the way, too.
Thank you everyone for the prayers for Shelby. We know that is what gets her through (and us!) day-to-day. Please keep them coming. She doesn't need to go back to Chicago (as long as all goes well) until June. She can see her local GI between now and then for a check-up. Thanks again everyone!
Love,
Jenn
Monday, March 21, 2005 2:25 PM CST Happy Birthday peanut! She really, really enjoyed Dora Live on Saturday and had a great time at her party yesterday. Please keep her in your prayers as she has her test tomorrow morning. I will post tomorrow evening to give an update from that.
Happy 1st day of Spring!
Love,
Jenn
Thursday, March 17, 2005 12:12 AM CST This Monday we will celebrate Shelby's 3rd birthday! What a joy! I will post pics of her party early next week! She doesn't know it yet, but Grammie got her tickets to see Dora Live at the Rosemont Theater in Chicago on Saturday. She will love it!
This Tuesday she will be meeting with a cardiologist at Children's and having the saline bubble echo. The test involves an I.V. and her holding still - neither of which she does or tolerates well. I have already enlisted the help of Ann & Heidi, the wonderful child life specialists, who helped Shelby so very well get through her 2nd part of her skeletal survey. We have also bought a special video for her to watch during the test.
I don't know how much we'll find out Tuesday, and I'm not sure what I want to hear. On the one hand, if she does have pulmonary hypertension, then her PELD will be raised and the possibly of transplant is much more likely than it is right now. But...I'm scared to have her go down that road. Are more complications likely with the addition of lung/heart issues? You betcha! So, we'll see what we find out....
Please pray for Shelby that she may tolerate the test well, for her doctors that they may make the best decisions possible for her, for the nurses and child life specialist that they help Shelby's test go as smooth as possible, for Scott and I that we may have the wisdom to make the best choices for her and patience to wait to find out the result of this test, and for Riley as she knows more about what is going on than a 5-year-old needs to be burdened with. At the same time, please remember to thank God for the wonderful family we have and for giving Scott and I our 2 special, wonderful gifts.
I'll update more on Monday with birthday party pics. That's all for now - Jenn
Wednesday, March 2, 2005 11:08 PM CST O.k., today Shelby met with her cardiologist. He did not see (hear) any obvious signs of Pulmonary hypertension and her peripheral pulmonary stenosis has improved a bit, but she does have a PFO (Patent foramen ovale) which "is a persistent opening in the wall of the heart which did not close completely after birth (opening required before birth for transfer of oxygenated blood via the umbilical cord). This opening can cause a shunt of blood from right to left , but more often there is a movement of blood from the left side of the heart (high pressure) to the right side of the heart (low pressure)." This wasn't discovered today, but a year ago - I just didn't remember the technical term for it. So...long story short (this will probably get long anyway), her EKG looked fine, but he did defer us to Chicago (her transplant center) to have their cardiologists do the saline bubble echo. His practice stopped doing them and cardiac caths 2 years ago because the malpractice insurance was sky-high (welcome to Illinois!). He didn't even do a regular echo today because he didn't see the need when she was going to be having one with the bubble echo. But, because she has this PFO, her bubble echo will more than likely come back positive, leading to a cardiac cath to see how much shunting is due to the PFO or to possible pulmonary hypertension.
I am frustrated about this whole thing! I was hoping to have some sort of answers today (or at least a test scheduled) and I don't. Now I need to get in touch with Shelby's team, relay this information to them, and get the test scheduled in Chicago. I also now need to address our team's complacency in dealing with this issue. I don't feel you can throw out a complication like, say, "Pulmonary hypertension," to a family (knowing its a serious issue) and then say "but you can get it tested in 4 months." That doesn't fly with me.
O.k., griping session done - I just get tired sometimes of being the middle-man, but I know that if I'm not, things won't get done to my satisfaction. I'll let you all know what I find out about scheduling the test. Thanks for listening!
Love,
Jenn
Monday, February 28, 2005 9:49 AM CST Did you see us on TV last night? WTVO (channel 17) did a SUPER story on Shelby. We were also on (live) Thursday morning with Margaret Shannon from the Secretary of State's office to help promote the Lightning game that focused on organ donation.
Today I'm taking Shelby to her local GI because she threw-up a bit this morning and on and off has been telling us that her belly button hurts. She's acting fine, but this could be her reflux acting up. I'll update later on that.
Also, Wednesday is a BIG day for us as Shelby's cardiologist appointment has been moved to then rather than Thursday. We go there at 8:30 a.m. (in Rockford) and she will be evaluated for pulmonary hypertension as well as checking out her other heart issues. She won't have the saline bubble echo that day, but I'm not leaving there without it scheduled UNLESS her cardiologist is sure that she doesn't have it. We need that specific test done to get the increase in her PELD if she does have pulmonary hypertensioin. Then at noon I will be speaking for the Lions club about Shelby's story and organ donation. ALSO, its my birthday :-).
Please pray for Shelby as she has a big day Wednesday. Our little friend Natalie is doing better. She's still on the vent, but they are hoping to get her off it SOON. Thanks so much everyone!
Love,
Jenn
Sunday, February 20, 2005 10:56 PM CST Oh how things can change...I received a call from one of Shelby's transplant team nurses Thursday afternoon saying that they dicussed her case in clinic that morning and decided that she needed to be tested for the pulmonary hypertension. They want her to have a saline bubble echo test in which saline with tiny, microscopic bubbles in it, is injected through an IV and then watched where it goes via ultrasound. How fun...Anyway, if she does have pulmonary hypertension then that would be an indication for transplant much sooner than later. Her team would appeal her PELD score and most likely she would get the exception points and be moved up on the list. Not exactly what we wanted to hear. I guess she can have pulmonary hypertension and not exhibit any obvious symptoms like shortness of breath, feeling faint, etc. so it is a tricky disease to diagnose.
The confusing about this, though, is that her team was content with having this test done in 4 months when we bring her back to Chicago for liver clinic. We are not comfortable with that at all! She already has a 1 year check-up with her cardiologist because of her murmur and peripheral pulmonary stenosis, so we will have him check out and test her for the pulmonary hypertension. This appointment is set for March 3rd. I'll have more details then.
Please continue to pray for Natalie. Things are starting to look up for her - yea! Also, please pray for Haley & Roger as they are still having a rough time. Also, special prayers for baby Gracie. She lost her fight to this awful disease Friday morning in Texas after receiving 2 transplants this week. Please hold her family in your prayers.
Love,
Jenn
Wednesday, February 16, 2005 10:09 PM CST Hello all!
Thought I'd give you an update on our 2 days in Chicago. First of all, I got to see Natalie's eyes. They fluttered open briefly as she is still heavily sedated, but none-the-less it was great to see her. Becca and Jason seem to be holding up fine, but prayers for Natalie's and Becca's healing are still very, very welcome.
Now on to Miss Shelby. She had the remainder of her skeletal survey scheduled for Tuesday. I arranged it so that she could be sedated as the first part (done on January 10th) was no walk in the park. Well, we were met in the Radiology lobby by Heidi and Ann, who both work in child-life. Heidi had a stuffed bear for Shelby and started talking to her about the test that the bear needed. From there she and Ann kept working with Shelby and to my amazement they were able to get Shelby through the test with NO sedation!!!!! We were so thrilled! Next, Shelby needed labs and they worked with her on that, too. That didn't go as well, but she had to be poked 3 times to get enough blood and 2 of those places weren't numb.
After that she had clinic and another miracle happened. Ann worked with Shelby and they were finally able to get a blood pressure reading on her!!!! Shelby DOES NOT like having her blood pressure taken at all, in fact, this is the first time in 3 years they've been able to get a reading on her. THANK YOU, THANK YOU, THANK YOU Ann! Clinic went well. Her liver and spleen continue to grow and get harder and she hasn't grown since last clinic, but nothing to be alarmed about right now. Dr. Alonso did note that it looks like Shelby is beginning to have pulmonary hypertension (I'd tell you more about it, but I haven't had a chance to research it yet). Dr. HuYoung (her Cardiologist) will check into that more on March 3rd when we see him again. Her labs look stable (for her). One liver number is a bit crazy, but is most likely indicating growth in her body.
Today we met with Shelby's Nephrologist and found out that her skeletal survey looked pretty good, at least better than the previous one. He will most likely keep her on the Fosamax for a total of 2 1/2 years. She sees him again in 6 months and will have a (routine) kidney ultrasound then, too.
So...we were very happy with our visit. Scott was nice enough to let us stop at IKEA on the way home so I was a very happy camper.
Thanks for stopping in - Jenn
Saturday, February 12, 2005 3:23 PM CST Natalie needs prayers! She's hit a bump. Please go to the journal history to link to her webpage. Pray, pray, pray please!
Thursday, February 10, 2005 9:14 AM CST Just wanted to let you all know that Natalie's and Becca's surguries took place yesterday. I don't know too much except that as of 7 p.m. last night they were both doing fine. Becca was resting and Natalie was just coming out of surgery. I pray that their nights went well and their recoveries are smooth. No updates have been done on Natalie's caringbridge site, but I don't expect any until Becca is up and going again. Here is a link to Natalie's Nataliebear page, though, because you might want to write a message in their guestbook or read on her history. Please keep praying. Hopefully I'll have an update later today.
Roger's condition is optimistic now. They think his seizures were caused by a high level of medication in his system. The problems should hopefully resolve on their own over time. Prayers are definitely welcome for him.
Haley (our liver/lupus friend who had the bleed in her brain) is back in the hospital with a high fever. Prayers, prayers, prayers for her...
Shelby had labs on Tuesday because the results take a while to get in. We need the results for next weeks appointments. More about those later...Anyway she was none-too-thrilled about the labs. Mommy was exhausted afterwards (emotionally and physically). Poor kid! I hate it that she has to go through those things...
More later - Jenn
Monday, February 7, 2005 11:17 PM CST We need more prayers. This time its for our little liver friend, Natalie, and her mom, Becca. Natalie is getting a "new" liver Wednesday thanks to her mom, Becca, the liver-giver! The surgeries will be taking place at Northwestern University and Children's Memorial Hospital. Here is a link to Natalie's webpage. Please sign in their guestbook and let them know you are praying for them.
Nataliebear
Roger's recovery is still going slow and they don't know if he's suffered any neurological damage from everything he's been through. Please continue the prayers for him. Also, Haley is having a rough time emotionally (and who wouldn't) dealing with her recent brain bleed. Her and her mom will need to live apart from the rest of the family in order to stay close to the hospital until she gets her new liver. They are such a close-knit family. This will definitely be a trial for them. They need strength now more than ever. Keep the prayers going up!
News on Shelby...next Tuesday we head in to Chicago for a few more x-rays for the skeletal survey. Scott and I have said that we won't consent to the test without sedation for her so that is what she is getting. (It helps to be stubborn and put my foot down. Maybe my Mom or husband won't agree on that....) After she recovers from that she will have liver clinic. We aren't expecting any big news there...we hope. We will be staying overnight in Chicago and then will have clinic with her nephrologist to find out the results of her skeletal survey. We are praying for there to only be the fractures that we know about. No surprises....but, this IS Shelby, so you never know. If Natalie is recovering "on track" then we will be able to visit her when we're there.
Thank you everyone for your prayers!
Love,
Jenn
Tuesday, February 1, 2005 2:45 PM CST Please keep the prayers coming, but Haley and Roger are both doing much better. Haley is almost back to her fiesty and sassy self and is improving miraculously. Roger still has a long way to go, but made it through surgery and the night o.k. Please continue to pray for his father, too, as he recovers from donating.
Now for some fundraising talk. We have the opportunity, with COTA's help, to sell green wristbands that say "Donate Life" (like the yellow "livestrong" ones) and also green magnetic car ribbons (like the "Support our troops" ones). All the proceeds would go into Shelby's COTA fund. Anyone interested in heading this up? Contact me please....
Love,
Jenn
Monday, January 31, 2005 8:04 AM CST Thank you all for your prayers for our two little friends. Roger's father is a match and is in surgery as we speak. Haley is off the ventilator, but the neurologists are saying that she had a huge bleed in her brain and they just don't know what lies ahead for her. Keep the prayers coming!
Love,
Jenn
(P.S. Go to "journal history" to get a link to Haley's website.)
Sunday, January 30, 2005 7:53 AM CST Dear friends,
We need URGENT prayers for some of our "liver" friends. The first is for Little Miss Haley. Click here for Haley's caringbridge page. She is waiting on a liver transplant, but had a bleed in her brain last night. This amazing girl has been through so, so much in the past 4 years since her diagnosis. Please, please pray for her. The second is for a 3-year-old boy named Roger. He went into transplant on Friday doing quite well, but the new liver is failing and he needs a 2nd transplant ASAP. I will keep you updated on both of them.
Thanks so much for your prayer help. Hug your loved ones extra tight today!
Love,
Jenn
Saturday, January 29, 2005 0:59 AM CST Tonight's update being brought to you by...Scott and his quick thinking to check to see if my computer was delivered...and Chris for getting us up and running...
If you couldn't tell already by that intro and the new pictures we have a new computer!!!!! Yippeeeeeee!!!! Can you tell I'm just a bit excited?!?!?!
Things are going well here. I'm picking up quite a few hours at the Y so that's keeping us busy. Shelby is a bit stuffed up tonight so there might be a cold for her in the next day or so. Otherwise she's doing great. Still no decision yet on the skeletal survey...grrrrrrr! Riley is wonderful and gorgeous. All is well and uneventful (and we like it that way!).
Love,
Jenn
Wednesday, January 19, 2005 10:29 PM CST Miss Shelby is doing GREAT! Still no word on the rescheduling of the test...grrrrrr. She is now 1 whole week into potty training. It is going much, much better than I expected. She is already staying dry at night and having very few accidents, if any, during the day. Yippee! Now what we will do with ALL that money we save on diapers and wipes?!?!?!?
Riley is enjoying school and teaching herself how to read. She likes to ask us for help in spelling words and comes up with some pretty interesting sentences. Saturday we will be taking the girls and 2 of Riley's friends (twins) to see Beauty and the Beast Disney on Ice. They are all VERY excited!
I've killed my computer. Yes, last Thursday I think I downloaded a virus - oops! Chris (my brother) came over Saturday night and pronounced it dead with a capital D. So...now the search goes on for a new one. I have to "borrow" computers to do these updates and read my e-mail and its killing me. Yes, I know, I'm so spoiled. Anyway, wish me luck with my new computer search.
Take care and stay warm!
Love,
Jenn
(P.S. Watch for upcoming fundraisers...and if you have any ideas for an event and would like to head it up drop me an e-mail.)
Tuesday, January 11, 2005 10:52 PM CST Yesterday morning SUCKED! Sorry to be so blunt, but there's no other way to put it. Shelby had her "skeletal survey" which is a fancy word for about 45 minutes of x-rays of her entire body. This test is necessary to check her bone status, especially now that she's been on the Fosamax (medicine to help strengthen her bones) for about 6 months now. She had the same test back in November of 2003 when she was about 19 months old. Anyway...the test went horrible. Of course, Shelby is terrified of x-rays because she's had so many of them. No matter how much we reassure and show her that they're not going to hurt, she just can't process that in her little brain right now. Don't get me wrong, she is smart, smart, smart...but she just can't quite put these scary medical things together right now. We (me and poor Grandma Cori got dragged along for this one) tried to get her to sit still and put out her arm for the first x-ray. Well, she was darn near hysterical. It just got worse from there. I told the tech, even though I hate to see her in such a thing, that she needed to be put in the papoose. That device is a board that you are velcro-strapped to. Shelby hated it and it took 3 of us (while she was restrained in that) to hold her "still" for the x-rays. About 7 or so pictures were taken and we were given a break. Shelby was soaking wet with sweat and Grandma and I were emotionally and physically drained from holding her "still." I keep using that term in quotes because there is no way to hold that strong-willed little girl perfectly "still." The catch is...that is what is needed for this test. Shelby was fine playing hide-and-seek with me and Grandma during the break thank God! We went back to continue the test and due to her movement, the fact that we had to hold her so forcefully, and because the computer wasn't reading the pictures well with the papoose board it was decided by the Radiologist and the doctor's office who ordered the test that we had to stop and the test had to be rescheduled so that Shelby could be sedated. Well no s**t!!!! I'm sorry, but this whole situation makes me very angry. I knew she would be like this for the test and asked if she could be sedated and was told "no" several times. Now....I find out they can!!!! ARGH!!! Can you sense some frustration here?!?!? If "they" had listened to me, the mother of the chronically ill child who has been through SEVERAL tests and procedures with her, then Shelby wouldn't have to been put through all that! She is fine now, in fact she was fine as soon as we told her "no more x-rays," but the next time I have to take her in for a procedure or test (which will be soon) she will remember yesterday.
The latest I've heard in the scheduling process is that this isn't "normal" to have to sedate children for this so special arrangements have to be made. I'd better get a call tomorrow with someone ready to set this up for us or I'll be even more of an unhappy Mommy.
Like this kid hasn't already been through enough...thanks for letting me vent. I'll update you when we hear more.
Love,
Jenn
Monday, January 3, 2005 10:05 PM CST Sorry this update is so overdue! Shelby's labs last week looked much better so her PICC line was pulled Friday morning. We took her and Riley swimming at the Y that afternoon and they both LOVED it! The plan now is that Shelby won't have to go back to Chicago for 2 months to see her transplant team as long as she stays healthy.
Speaking of her staying healthy...tomorrow I start working at Brooke Road UMC in their Children's Day Out (CDO) program. I will be the teacher's aide for the 4 & 5 year old classroom and Shelby will be right across the hall in the 2 & 3 year old classroom. It is on Tuesdays and Fridays. So...let's hope and pray that she is able to fight off and tolerate illness like "healthy" kids do.
Please just assume no news updates is good news. Please check back mid-week for new photos, though. Take care everyone!
Love,
Jenn
Saturday, December 25, 2004 2:27 AM CST MERRY CHRISTMAS!!!! Everything is going well here in the Martin house. Shelby and Riley are both feeling great! Shelby has 1 more week for sure with the PICC line - who knows after that! Please check out the new pictures I have posted from Christmas Eve. I have more cute ones, but for some annoying reason they won't upload for me. I'll keep working on them.
Love,
Jenn
Wednesday, December 22, 2004 9:46 PM CST Shelby's liver clinic visit yesterday was o.k. Some of her numbers are rising (which we don't want to happen), but Chicago doesn't seem too concerned. They did NOT remove her PICC line, though. They want to do more labs around New Year's Eve and see how those are before the line is pulled. Thank goodness Shelby is very good about the line. She really could care less that its still in. She is very helpful when we have to flush it twice a day and is feeling really good despite having a bit of a stuffy nose today.
The turnout at the Visit with Santa event was great! Everyone had a wonderful time! About $500 will be added to Shelby's COTA fund from that event. THANK YOU!!!!
Merry Christmas everyone! May the peace and joy of the season touch your heart and bless your family!
Love,
Jenn
Saturday, December 18, 2004 9:53 PM CST Sorry I haven't updated, but I've been busy organizing this Visit with Santa fundraiser. Shelby's labs took a slight turn for the worse, so her PICC line was not removed on Friday. She's feeling great and we might even try to take her to church tomorrow. We'll know more about her status on Tuesday as labs will be re-drawn and we go into Chicago for clinic. Merry Christmas to all! Hope to see you Sunday night!
Love,
Jenn
Friday, December 10, 2004 2:02 PM CST Shelby's visit with her local GI went well today. Here are her latest labs. The first number is the day she came down with the high fever and the second is yesterday's draw.
total bili 1.9, 0.7
AST 104, 64
ALT 72, 57
Alk Phos 669, 482
Albumin 2.9, 2.2
Her hematocrit is 26.9 and her hemoglobin is 9.3. Those are the lowest they've been all year. She's been anemic forever, but never this low. She takes 1.2 ml daily of Iron. We need to push the Neocate One+ to get her albumin up. Her GI said if it stays low like that it can affect her PT. Her WBC is low, low at 3.6 so we were instructed to keep her at home for a while longer. Also, her weight is down about 1 1/2 lbs from when she was admitted, but she did have diarrhea something fierce. Shelby hasn't had trouble with weight gain, so she's not missing that pound-and-a-half.
Her last day of IV zosyn is Sunday, and then she starts Bactrim orally. Her GI and I agreed to leave the PICC line in for 4-5 days after the oral antibiotics are started to see how things go.
She is almost back to 100% now. Let's hope it stays that way. Riley was home sick from school yesterday, so I'm praying that they did not share germs. I hope to see alot of you at the Visit with Santa event. Thanks!
Love,
Jenn
Monday, December 6, 2004 10:25 PM CST Sorry its taken me so long to do a new update. We are surviving home IV antiobiotics just fine. We are having trouble, though, with bloody discharge from Shelby's PICC line. She was to have the dressing changed on Friday and then not again until this coming Thursday. Well...tonight was the 3rd dressing change already! The little stinker is ssssooo active that she keeps bumping it and moving her arm so much that it gets irritated! Argh! Well, I'm glad she's feeling good enough at least to be running around.
Her sleep schedule is all off whack from being in the hospital. Its about 10:40 p.m. and she's only been in bed for about 15 min. Hey, its better than the 11 p.m. of last night. We'll eventually get her back on track (I hope!).
She gets labs on Thursday and then sees her local GI, Dr. Deutsch, on Friday. Please keep your fingers crossed and pray hard that things look good.
Thanks so much everyone for your support and well-wishes. Enjoy the new pictures!
Love,
Jenn
Thursday, December 2, 2004 9:31 PM CST Sorry for no update yesterday. I came down with a stomach bug and was in bed ALL DAY long! It killed me to not be with Shelby at the hospital. Thank God my Mom and Scott were able to split the day and be with her.
So the fever is gone now and the PICC (Peripherally Inserted Central Catheter) line was put in this morning without a hitch. We had one of our favorite anesthesiologists and were very comforted by that. The Radiologist was great, too! They gave Shelby some Versed in her IV and a minute later she gave out a long, hearty laugh - that girl loves her Versed! They said she was given just enough general to be out, but not so much that recovery would be tough. She came out very agitated (like usual), but it didn't last long, and an hour after she came out from the procedure was her normal fiesty and sweet (do those 2 go together?!) self.
She was discharged about 3 p.m. Home health has been here and at 10 p.m. she's due for her 1st dose of Zosyn. She'll be getting it at 10 p.m., 6 a.m., and 2 p.m. Wish us luck! Scott seems comfortable with it and I feel like I will be, too, but its a bit unnerving shooting stuff into your own kid's veins. I know we'll be fine, though.
Here's her labs from 11/1(clinic visit), to 11/27 (day of fever onset), 11/28, 11/29, and today 12/2. They didn't make THAT much of a jump, but enough, along with the high fever, to make the doctors feel that its the big "C" that she's dealing with.
Direct bili 0.6, n/a, 1.3, n/a, n/a
AST 87, 104, 92, 65, 69
ALT 42, 72, 62, 53, 56
GGT n/a, n/a, 160, n/a 175 (in June of 2004 it was 94)
Alk Phos 463, 669, 586, 473, 510
Just thought I'd share those numbers. Most of you won't know what they mean, but some of you will Her albumin is down to 2.1 from her diarrhea, so let's pray she starts eating better SOON. We're going to try to pump her up with Neocate One (yes, she'll still drink that crap).
Thanks for all the prayers and good wishes. I'll try to update in a couple of days.
Love,
Jenn
Tuesday, November 30, 2004 10:59 AM CST Well it was decided that she does have cholangitis. Thursday morning they will be putting in a picc line and sending her home for 2 weeks on zosyn. Chicago initially wanted to use roceferin (sp?) but its in the cephlosporin family, which she is allergic to. Her appetite is picking up slowly, but she is drinking some. They are going to discontinue the IV fluids hoping that that helps her feel a bit more thirsty and hungry. Her temp is down to the 99 range (thank goodness), but she is still quiet sleepy at times. Her little botton started to get red yesterday from all the diarrhea, but I think we have it under control...still...diaper changes are NOT something Shelby (or I) look forward to!
Riley spent the night with her Daddy at home and woke up in a wonderful mood! My Mom actually had an easy time getting her ready and off to school. For those of you who don't know Miss Riley that well she is slow as molasses. She always likes to pretend she's Disney "princesses" and will declare that she is the character Pochahontas. I agree with her whole-heartedly and say "Yes, you ARE!" Maybe someday she'll realize that I'm saying she's slow....
Hopefully tonight my Mom will be spending the night at the hospital with Shelby so I'll get my time with Riley. I think she's going to be cuddling me to sleep as I could use some Riley-snuggles.
I'll try to update again tomorrow.
Love,
Jenn
Monday, November 29, 2004 10:44 AM CST Shelby's local GI came in this a.m. and was pleased that her LFT's have improved even more and that her temp (with Motrin still) is down to 100.5. She has her moments still of feeling good, then absolutely rotten, but she's a trooper. We had some major diaper blow-outs last night (insert "sponge bath at midnight!"), but the diarrhea seems to have slowed down this morning. My mom is up at the hospital with her now so I can be home to shower and collect myself. Today we'll hear from her transplant team on the game plan for her. Thanks everyone for your prayers.
Love,
Jenn
Sunday, November 28, 2004 5:55 PM CST Thanks to all who checked up on Shelby and signed her guestbook! Its so nice to read those entries and know that so many good thoughts and prayers are out there for her.
Today was a day of ups and downs for her. When the Motrin would kick in she would be pretty good, but otherwise she's pretty miserable. Its either great or horrible with her - no in-between! We were told today by her GI that she would probably be in until Wednesday (at least)! We just continue to wait and see if her fever goes away on its own, but so far no such luck. Her LFT's (liver function tests) have shown some slight improvement except for her biliruben which has risen. She has terrible diarrhea from the 2 antibiotics she's on so they have put her on IV fluids to keep her hydrated. She's only eaten about 5 Fruitloops today, but supper arrived as I was leaving and she told her Daddy she was hungry. We'll see how that went...
I'll try to update more tomorrow. Keep the prayers going up!
Love,
Jenn
Saturday, November 27, 2004 6:29 PM CST Hello all! Wish I had better news to share, but Shelby was admitted to Rockford Memorial this afternoon with a suspected case of cholangitis (liver infection). She is on 2 IV antibiotics and feeling pretty crummy as her temp got as high as 104.5 today. Please keep her in your prayers and I'll try to update more tomorrow. She'll probably be in the hospital for at least 3 days.
Love,
Jenn
Monday, November 1, 2004 7:45 PM CST Good news today!!! Shelby still only has the one small varice that she's had since April of 2003!!!!! We are so thankful that she is continuing to do so well! I'm trying out the computers at the hospital so this update will be short, but I just wanted to let everyone know things went really well today.
We have friends whose daughter is inpatient at Children's, too. Her name is Natalie and she is being listed this week for a liver transplant. Please keep Natalie in your prayers as well as Shelby. Click here to follow Natalie's story.
That's all for now! Please wish Shelby luck tomorrow during her sedation for her nutritional study. I'll try to update more tomorrow.
Love,
Jenn
Tuesday, October 26, 2004 11:32 PM CDT O.k….I’m finally caught up with all my e-mails and have settled in nicely with my cable modem. Sure is nice having a husband that works for the cable company….
So let’s get everyone up to speed on little Miss Shelby. The current issue she is dealing with is recurring UTI’s (Urinary Tract Infections). She has now had 3 since May and I’m almost positive she already is working on #4. In a couple days we’ll know on that. She was scheduled to see a Urologist on November 17th, but I am pushing to get her seen when we are in Chicago next Monday and Tuesday. Why will we be in Chicago for 2 days you say? Shelby needs to complete the 2nd part of the nutritional study we entered her in and she will also have an upper endoscopy (or scope) (#3) and celiac biopsy (#3). She will have general anesthesia for the scope and biopsy and mild sedation for the nutritional study. Needless-to-say, Shelby will not be a happy camper the beginning of next week, but we hope to make it a bit better by showering her with toys we’ve been stocking up on for an occasion just like this.
Please say prayers for our Shelby (I know that many of you already do, but please add a few extra):
(1) That the doctors don’t find any more varices during her scope than the 1 small one that we already know about. Varices are complication of portal hypertension, which we know Shelby has as a complication of her Biliary Atresia. If you’ve seen her tummy (naked) or her cheeks, you know what I’m talking about. Those little veins that are apparent on the outside are also stressed on the inside (varices). Those can burst and bleed spontaneously. That would be a life-threatening situation for Shelby. Therefore, her doctors must keep a close eye on them.
(2) That the Urologist can see her next week and we can begin testing on her kidneys. Her Nephrologist (Kidney doctor who sees her for her bones…yes, confusing, I know) suspects she has reflux of the kidneys causing these recurring UTI’s. That is not something we want Shelby to have to deal with, but it would be nice to know why she keeps getting these infections. This problem needs to be treated aggressively because if her liver begins to fail, which we know can happen at any time, it really stresses other organs. So, all the other organs must be in top-notch shape or we’ll have some HUGE problems on our hands. We don’t want that for our sweet Shelby.
Other than for those issues, Shelby is doing great. She is mostly her usual bundle of energy and trouble, except for when she’s feeling crummy (read crabby) from her UTI’s. She can now have peanut butter again and is VERY happy about that! Riley is still enjoying school and will soon be turning 5. I can’t believe I just typed that! Wow! Doesn’t seem possible…
We are settled into our new home and are enjoying having our own space quite a bit. I’m SURE my parents are loving having their peace and quiet again!!! The girls seem to be adjusting to their new home just fine. They share a bedroom and have a “playroom” just like their friend Annika. I love being able to shut the door on the toy mess! They are looking forward to Halloween – I’ll post pics as soon as I have some.
Well, that’s about all my fingers can type tonight. Take care everyone and I’ll update when we get her urine culture results.
Love,
Jenn
Sunday, October 17, 2004 12:32 AM CDT O.k....this update is LONG overdue, I know! Shelby did NOT have a broken ankle or anything (thank you GOD and Fosamax!). We have moved into our own house recently and have been VERY busy getting settled. Hopefully I'll have my cable modem hooked up by the end of this week and I'll do a longer update. Take care - Jenn
Monday, September 6, 2004 1:33 PM CDT First of all, I am so thankful that I have a child who is waiting for a liver transplant and doing so well (as far as energy and zest for life is concerned!). Saturday morning was Shelby's Fosamax day, as she gets it just once a week. She has to stay upright for 30 minutes after she takes it, so we hop in the van, throw in our TV, and the girls watch a video while I drive around and we wait for the 30 minutes to pass. I had a errand to run after that so we stopped at McDonald's for breakfast. That went well, but when I got her out of the highchair to leave she twisted her left foot "funny." She cried out and immediately I picked her up and we left. I examined when we got to the van and her ankle was swollen and red. We were very close to where my husband was working so we drove there quickly so he could take a look. We decided x-rays were in order so I called our Pediatrician (who normally keeps Saturday hours) and he had taken the day off. The on-call Ped was booked and told me to go to Immediate Care after I informed them I wasn't going through the ER run-around. Long story short, x-rays didn't show a break, but that's nothing new for Shelby. I will be taking her for follow-up x-rays in a couple of weeks and then we'll have our final answer. True-to-form, Miss Shelby is not phased by this and is walking and jumping well. Please send prayers her way that I'm wrong and there is no fracture. Thanks everyone!
Tuesday, August 31, 2004 2:17 PM CDT I thought I'd do a new update on Miss Shelby. Her celiac panel came back the same as February so they will be re-scoping her sometime in October to do another biopsy. At the same time they will check out if she has any more varices, too. She also has her 2nd UTI - yuk! She started Augmentin (antibiotic) on Saturday, but has already had to cut back the dose due to diarrhea. Let's hope she doesn't become allergic to this med, too, as she did when she had her last UTI. That's all for now. I'll update when there's more news.
Love,
Jenn
Friday, August 6, 2004 6:41 AM CDT All's well here! Shelby had clinic on Tuesday and checked out pretty good. Her liver and spleen have grown since last clinic, but she is growing great! She is about 33 lbs. and 34". If all continues to go well, she doesn't have to return to clinic for...drum roll please...3 MONTHS!!!!!
Some blood tests are still pending and we'll have those results next week so I'll post more then. Today and tomorrow we are having a garage sale. My Grandma's items in the sale are going towards Shelby's COTA fund. Thanks Grandma! We will also be selling candy and the proceeds will benefit Shelby's fund, too.
Have a great weekend everyone!
Love,
Jenn
Sunday, July 4, 2004 9:24 AM CDT HAPPY 4th of JULY
O.k...sorry I didn't update this week. I did take Shelby into the Ped's office on Monday and had x-rays done on her foot and...guess what? She broke another bone!!!!!!! She told us her ankle hurt and the little stinker was just about right. She broke her fibula (small bone, lower leg) just above her ankle. Its not a "bad" fracture (thank God!) so she doesn't need a cast (sigh of relief from Mommy). We'll take her back in a few weeks for more x-rays to make sure its healing well.
This is fracture #6 with #5 just happening a month ago. Her transplant team will be re-evaluating her status this week in light of these non-stop fractures. That, of course, makes us very nervous to wait and see what they decide. Is this enough to push ahead with transplant? We'll soon find out. Please send extra prayers Shelby's way and her team's way so that the best decision is made concerning her health.
In a few weeks she'll have a repeat renal (kidney) ultrasound here in Rockford as the one in Chicago showed that her kidneys were enlarged. They could have been that way from her UTI but they want to look at them again to make sure they're back to normal size. If they're not....well, I don't quite know what that means.
Shelby and Riley have really enjoyed this week swimming in their pool in the backyard. They are slowly getting cute little tan lines. Hopefully this afternoon we'll go swimming at their Grandma and Grandpa Martin's pool and then enjoy the fireworks this evening.
Take care everyone!
Love,
Jenn
Sunday, June 27, 2004 9:56 PM CDT WOW! We had our Kids’ Fun Day event on Saturday and it was great!!!!!! The weather was perfect, everything went as planned, Jim Gill was FANTASTIC…I just wish there had been a few more people – oh well! It was definitely worth the effort. I had AWESOME volunteers that made the day spectacular. I posted some pictures from the event, but I can only do 3 -4 at a time so you’ll have to wait a few more days for some more.
Shelby should be starting her Fosamax this week to start strengthening her bones. Of course, she was an absolute dare-devil at the event yesterday and wowed everyone by climbing the 2-story tall inflatable slide and going down it several, several (did I say several?!) times! She would get to the top and then flop her little legs out in front of her and bounce and tumble her way down. I didn’t see it, but I heard that she went down on her tummy once – yikes! I’m praying that I don’t have to take her in for x-rays tomorrow on her ankle. When my Mom got the girls home last night Shelby cried out that her ankle hurt and since then has been walking funny on it off and on. We’ll see what the morning brings….everyone have a great week!
Love,
Jenn
Wednesday, June 9, 2004 1:47 PM CDT We had a GREAT time in Green Bay this weekend at a Transplant family picnic. It was held at Bay Beach Amusement park and the girls had a BLAST! Our friends Moreena, Annika, and Frankie went with us and fun was had by all. Of course, the mommies (Me and Moreena) were quite exhausted, but very happy to see our little ones having so much fun.
Also, on Saturday, was Shelby’s 2-year anniversary since her Kasai procedure/operation. WAY TO GO SHELBY! It’s quite an accomplishment to make it that long after your Kasai without having a transplant yet.
Yesterday Shelby had clinic in Chicago so we took Riley along, left a bit early, and enjoyed the Lincoln Park Zoo. It was HOT, but it was a really cool zoo to check out. We’ll definitely go back again. Clinic went well – they are impressed with her good growth (32 lbs and 33 ľ in) and how active she is. In fact she looked so good we don’t have to take her back for 8 weeks – Yippee, we were on a every 6-week schedule so we’re very excited about this. Her liver and spleen are still huge and hard, but no more than last time. Her LFT’s looked good and her platelets are the highest they’ve been in 6 months (yea!) – we’re still waiting on results from pending kidney tests, but we aren’t too worried about those. Her renal ultrasound went fine, too. Her albumin was still a bit low, but that’s most likely from her poor eating/picky food choices. We took our time coming home and stopped to eat at the Lonestar where our friend, Steve, works – thanks Steve! We got home around 10 p.m. and put our 2 beautiful sleeping girls in their beds, unpacked, and CRASHED.
All’s well here…take care everyone - Jenn
Tuesday, June 1, 2004 11:21 PM CDT We had a great time Saturday night!!!!!!!!! Thank you to everyone who volunteered and made this event such a success and thank you to everyone who came to this event to help make it so wonderful. We had news coverage on all 3 local stations - what a super way to spread Shelby's story and message of organ donation awareness! We were so thrilled with how this event turned out. Thank you, thank you, thank you!
Tuesday, June 1, 2004 11:21 PM CDT We had a great time Saturday night!!!!!!!!! Thank you to everyone who volunteered and made this event such a success and thank you to everyone who came to this event to help make it so wonderful. We had news coverage on all 3 local stations - what a super way to spread Shelby's story and message of organ donation awareness! We were so thrilled with how this event turned out. Thank you, thank you, thank you!
Friday, May 28, 2004 7:26 PM CDT Thank you everyone for your prayers and words of encouragement. The hives are almost completely gone, in fact she made it all day without Benadryl! The urine culture came back fine, so the little bit of antibiotic that made it into her system killed off that nasty bacteria. What a relief!!!!!!!!! No more antibiotics (for now!).
Today we had a phone conference with Shelby’s nephrologist, Dr. Langman. He has decided to put Shelby on Fosamax to try to build her bones up. She will take it once a week so let’s hope that she won’t be stubborn and refuse it. If she does, then the alternative is I.V. infusions every 3 months in Chicago – yuk! She will have a renal (kidney) ultrasound June 8th when we are at Children’s for liver clinic due to her recent UIT. Dr. Langman wants to be sure there are no abnormalities with her kidneys because Fosamax is processed in the kidneys.
Last night Shelby fell out of our living room bay window while she was playing with her Little People. I found her behind the recliner on her right side. I checked her thoroughly to make sure nothing was broken and she calmed down. She didn’t seem to be in any pain, but was very shaken up. Well….today Scott and I both noticed when we picked her up that her right shoulder is “slipping” like it did when she broke her left collarbone. Off to the Pediatrician’s we went where no fracture was detected on the x-ray. As you know, that’s no uncommon for Shelby’s fractures not to show up initially, but as they start to heal they can see the new bone growing. In 3 weeks when I have them re-check her then I’ll believe its not broken….but right now I think it is. She is not in any pain (which is usual for her), but picking her up is very strange. Oh Shelby!!!!
We can’t wait to see you all tomorrow night! Riley is very excited about dancing. Please come and take your turn dancing with her. Take care and have a great weekend - Jenn
Wednesday, May 26, 2004 9:01 PM CDT As you can see by the new photo, Shelby is having an allergic reaction. This time it is to some antibiotics that we were giving her for a Urinary Tract Infection. She started having a UTI after we came home from the nutritional study. She was given Bactrim (an antibiotic) to treat it for 10 days and then we re-checked her urine. This time, a new bacteria showed up, from the citrobacter family of bacterias. Very specific antibiotics must be used to kill off this nasty bacteria and unfortunately Shelby has reacted to both of the oral kinds that can be given to her. So…we are waiting on new urine cultures to see if the brief stint of antibiotics might have killed it off. If not, then she must be treated with I.V. meds – yuk! I’ll keep you all posted on this as we should have at least preliminary test results by tomorrow. Please check out the photo album to see more pics of her hives.
We hope to see everyone Saturday night at the fundraiser!
Take care - Jenn
Wednesday, April 28, 2004 2:33 PM CDT We arrived home from Chicago yesterday afternoon as planned. Her doctors still think that she is doing too well to proceed with transplant right now. They feel that something will happen and we’ll all know that its time. We are o.k. with their decision to wait as we know she is relatively “healthy” right now, even with her newest diagnosis of osteoporosis. All the doctors agree that treating the bones is the way to go. The type of treatment still has not been decided yet. Hopefully we’ll know more in the near future…Dr. Langman will call us when the hard copies of her bone biopsy arrive.
The Biliary Atresia nutrional study went so-so. The first day (Monday) everything was great. We checked in, she got friendly with all the nurses, we put EMLA on her hand, we took her into the procedure room fo the IV, we had great IV nurses that listened to how we like to do things when needle pokes are involved (thank you Dhy), Daddy did a GREAT job blowing bubbles to distract her during the IV process and she NEVER got upset, the urine collections went fine, etc. The only thing was we had roommates who had the TV on way late and she couldn’t sleep. When the other parent left the room (and was gone for a while) Scott turned off her TV and boy was she mad when she returned. The nurses ended up moving them to another room and Shelby could fall asleep after they left. Unfortunately by then it was already 11:15 p.m.! Yikes! During the night her nurse was very respectful of her sleeping and took vitals and flushed her IV very quietly (thank you Leah!). Around 4 a.m. she did wake, but then she slept with me on the fold-out chair and didn’t wake until close to 7 a.m.
Now to day 2 (Tuesday)….well...we took her down to the MRI suite and she drank the sedative (chloral hydrate) very well. We had one of her videos on and she laid on the cot. We thought she was almost asleep when she began violently thrashing around and crying and screaming. We had to hold her, although it was extremely hard, so that she wouldn’t hurt herself. I mostly held her because she would cry for me when I gave her to Scott, but I needed a break once-in-a while because this lasted for just under an HOUR! Luckily her IV was in and they hooked her up and gave her some fluids to push the medication through her system. After she had the fluids for about 10 minutes I was able to get her calm enough to nurse and she did that for about a minute and then fell instantly asleep. We were able to continue the study at that point. She slept for about an hour and then woke up as happy as can be. We (the nurses and us) were EXHUASTED! Shelby and I both have scratches from her moving so violently. She had a “paradoxical paranoid reaction” to this medication and we now know to NEVER give it to her in the future. It is commonly used in tests when a child needs to be sedated (like an MRI or CT scan).
A bit later we were discharged and stopped by Whole Foods to find some things for Shelby to eat with all her food allergies. Stores like that make it less scary when you have child with food allergies. I sure wish we had one here in Rockford!
We still haven’t heard her lab results from yesterday, but we did have the Vitamin A level run last week and it dropped from 14 to 13. That’s not the direction it should be going! Her team will discuss it and find out if we will need to start combining the injections with the ADEK vitamins. I’ll let you all know more about the treatment for her bones when we hear something. Thank you for all your prayers.
Love,
Jenn
Friday, April 23, 2004 2:50 PM CDT I know its been a while since I’ve updated, but, trust me, that’s a GOOD thing! Yesterday I called Dr. Langman’s nurse (Dr. Langman is the Nephrologist who is seeing Shelby for her bones) to let them know we will be in Chicago next Monday and Tuesday for the nutritional study. I was hoping that if they knew Shelby’s bone biopsy results were coming in then we could get together with them on this trip. It turns out that they received a verbal report about a week ago and were waiting to contact us until the actual hard copy of the slides came in. But since I was on the phone they let me know that the verbal report indicates she has OSTEOPOROSIS - yup, the same disease that older women get.
My understanding is that the Osteoporosis is secondary to the liver disease, meaning it is caused by the liver disease. So, if that’s true then the way to treat the Osteoporosis is to treat the primary disease. In Shelby’s case that would mean transplant. I don’t know if that is going to be the recommendation by her doctors because she is so stable right now. We’ll see on Monday when we meet up with everyone. There are some drug treatments that can be given to her to strengthen her bones, but if the liver isn’t already doing what its supposed to do to make and maintain her bones correctly then I don’t know if any medication is going to help until she has a healthy liver in her. I will update more after we get home on Tuesday.
Riley is doing great! She is sad that in a couple months pre-school will be all done for this year. We went to visit her Montessori school that she’ll be attending next fall on Tuesday. She seemed pretty excited about it after the tour and being in the classroom. She is now taking Gym’n’Swim and Karate at the YMCA and loves it! Her swimming skills have improved since last fall and we (Mom and Dad) are loving that!
Please check out the new pictures in the photo album and write a message in the guestbook so we know that you
visited. Have a great weekend!
Love,
Jenn
***FUNDRAISING INFORMATION***
Next Saturday, May 1st 10 a.m.
Aldersgate United Methodist Church meeting room
Volunteer meeting for anyone who wants to help with the Kids’ Carnival
Call 815.222.0467 for more information
##If you are member of the Shelby’s Friends Yahoo! Group, please check that often as new information will be posted soon##
Monday, April 5, 2004 7:32 PM CDT Last week Shelby had RAST (blood) food allergy testing done due to face and bottom rashes that kept appearing. Unfortunately, she is now allergic to many more foods! We knew of the dairy allergy, but now she is faced with dairy, egg white, tomato, peanut, wheat, and soy allergies. She also showed antibodies to malt, beef, and oat, but for now she doesn't have to avoid them. Of course, we are really bummed about this. We just want this kid to be able to eat "normal" with all her other things going on. We know things could be alot worse for her, but we are still having a bit of a pity party about it all right now. Finding food for her to eat that she'll accept is not easy!
Please continue to pray for her as she encounters this new hurdle...
Sunday, March 21, 2004 8:13 PM CST HAPPY 2ND BIRTHDAY SWEET SHELBY!!!!!! WE LOVE YOU!
Mommy, Daddy, & Riley
Wednesday, March 17, 2004 7:13 PM CST I can’t believe on Sunday Shelby will be 2!!!!! It feels like she’s turning 14 with all that she’s been through in the past 2 years. What a joy to be celebrating her birthday with her feeling so well!
Monday she was scheduled to be admitted at Children’s for a nutritional study we entered her in. Well, plans changed as she had a terrible diaper rash from our little “dairy” experiment (see last journal entry). Let's just say that she still has her allergy. Ugh! The study would have required for her to have several urine samples taken over a 4-day period. Those little urine bags they put on girls to collect samples are not pleasant especially when your little bottom is as raw as can be. We’ll be rescheduling that study.
Clinic went well. Last week’s lab draw did not go well so we asked for a prescription of EMLA cream. It numbs the skin so that she doesn’t feel the “poke.” WHAT A LIFE SAVER! Trying a new way to hold her, using the EMLA, and an elephant bubble blower did the trick to make labs go oh so smooth! We’ll definitely be using the EMLA for every poke from here on out.
Shelby is still growing well and, drum roll please…her Vitamin A level is up to 14!!!! 20 is normal, but 14 is better than 11. Maybe her new vitamin is doing the trick. Only time will tell. Her liver is still big and hard and her spleen is huge, but she amazingly is feeling and doing well. It was a little disappointing to hear, though, that her doing so good at this point is pure luck. They said that kids with complications like Shelby usually start to decompensate (get worse) between the age of 2 and 3. That is a bummer to hear, but its also a good reality check. We’ll take all the good luck we can get.
Only 4–8 more weeks to wait on her bone biopsy results. I can’t believe I’m so calm. The waiting usually drives me nuts! I think when we hit the 7 week mark I’ll start to get antsy.
We got to see our little friend Marek when we were in Chicago. He looked great and is off the vent. He was still in the ICU, but I got a message from his mom today that he is now in a regular room. Thank you God!
That’s all for now. Please check out the new pictures. Thanks! -Jenn
Sunday, March 7, 2004 5:08 PM CST I just realized that its been quite a while since I did an update on Miss Shelby. Well…things are going quite well. Her pain from her bone biopsy site started to lessen and about at the 1 week point she was hardly limping. Getting the steri-strips off helped quite a bit as they were rubbing up against her diaper. Still 6-10 weeks for those results, though…yuk!
She is still such a spit-fire! She managed recently to break through one of the ends on her crib tent so Grandma did a bit of a repair job on that. She is so stubborn and we are having quite a time expanding her food selections. I’m sure a large part of that is “normal” toddler, but none-the-less frustrating. (Now she has joined me on my lap and I am having to type with my arms around her.) Last Monday I had a appointment so Scott met up with us to take the girls over his lunch break. He took them to the mall for a bit of playing and McDonald’s. He must have had a “blonde” moment and gave Shelby a chicken nugget Happy Meal. He proudly reported to me that she ate the entire thing! The only problem with that is chicken mcnuggets have milk in them and, as many of you know, Shelby has a dairy allergy. Of course, I flipped out and watched her like a hawk that evening, but all was well. Thank you Scott for your mistake. We are hoping that this will open the door to her having dairy again. For the past 3 days I have been giving her 1 thing that has a dairy ingredient. So far, so good. I’ll be calling her team tomorrow to see if they are comfortable with us running with this. If they are o.k. with it, then we’ll probably give her a little cup of milk and hold our breath. We are very anxious for her to be done with this allergy as she is such a picky little eater and we would like to broaden the foods we can offer to her. Also, dairy foods are a GREAT way to get calcium in a little girl with “undermineralized” bones. Keep your fingers crossed.
Next week she has clinic in Chicago. We will be able to visit with our little friend, Marek, and his parents. We last saw them the day before his transplant (February 17th). His “new” liver is doing great, but he is still on the ventilator. Tomorrow they will be doing tests on his lungs to try to find out what the problem is. Please keep the Werda family in your prayers. Also, our little friend, Annika, is dealing with PTLD and rejection. She is currently in Children’s Memorial undergoing treatment and will have testing tomorrow, too.
Miss Riley is still her wonderful dramatic self. She is very interested in writing tons of letters on a piece of paper and then asking us if she made any words. I’ve suggested to her to copy words that she sees around the house, but I guess that’s not in her plans. She continues to LOVE pre-school and going to church and Sunday school. My birthday was last Tuesday and she crawled in bed with me in the morning and told me “Happy Birthday!” She then said “Mommy, I forgot how old you are.” I said “28.” She then, very matter-of-factly, stated “You know if you were 100 you would die soon!” Oh, out of the mouths of babes! Gotta love her! She has taken a big growth spurt since Christmas. She’s gained about 3 pounds and grown out of most of her 4T pants. I can’t believe how big she is…
Speaking of getting bigger, Shelby turns 2 on March 21st. Whoohoo! Yippee! Of course, she could care less, but we’ll torture her with a party with all the works. What a lllloooonnnnggg 2 years it has been, but we wouldn’t trade it for ANYTHING!
I guess that’s it for now. Thanks for taking the time to stop by. Please sign in our guestbook to let us know you were here for a visit and be sure to check out the new pictures in the photo album.
Take care,
Jenn
Friday, February 20, 2004 2:09 PM CST Yesterday we heard GREAT news about Shelby’s duodenum biopsy – NO CELIAC’S DISEASE!!! We are very happy for those results because if she had CD it would require a strict diet the rest of her life. We already have our hands full with her dairy allergy so we are thankful that that is the only diet restriction she has now. Two of the 3 antibodies for CD did come back strongly positive so she needs to have a Celiac panel (blood work) done every 6 months to see if that 3rd antibody will convert to positive, too. If it does then she will have to be biopsied again. I guess it could convert and there still could be the chance she has it, but that’s down the road so we’ll enjoy things for now.
The only bad thing about those results is that we still have no explanation for her low Vitamin A level. The other 2 possibilities thrown out to us were Cystic Fibrosis and pancreatic insufficiency. The current game plan is to see if her new vitamins help bring up her Vitamin A level. In about 3 weeks that will be checked and then we’ll go from there.
She is a bit sore from her bone biopsy. We are giving her Motrin 2 times a day and that seems to help a bit. She has a small limp, but its really not slowing her down at all. She only had to keep the bandages for 48 hours so last night Mom and I (Scott lucked out, he was at work) held her down and took them off. She was none thrilled to be held down. She starts screaming when we hold her down for anything – even before we start doing what we need to be doing. She (and her sister who watched the whole thing) were treated with chocolate fudge (Rice Dream) “ice cream” cones. They thoroughly enjoyed them. I’ll try to post the pictures of them eating the cones this weekend. Now we just wait for the steri-strips to schrivel up and fall off and for the dissolvable stitches to go away.
Shelby does not have to go back to Chicago until March 15th. We’ve entered her in a nutritional study for children with Biliary Atresia. She’ll be admitted to Children’s on the 15th at about 1 p.m., will have some labs, and then has to drink a special “marker” that is just like water. The next morning she will be sedated and they will take metabolic measurements by measuring her breath(?, I think). She will have a hood-like thingy over her head and they will take measurement from there. Once she is completely awake she’ll be released. For the next 3 days after that we have to take careful measurements of her input and output. In 6 months she’ll do the same thing all over again. We feel that it is totally worth it to put her through this because she has such nutritional issues. For all of you that know her, she looks like a average toddler and is growing great. But, despite outward appearances, she is having a tough time with malabsorption issues. Hopefully, the research doctors at Children’s can learn a lot from her to help other kids in the future. Also, we might come away with some answers about Shelby’s own nutrition issues. The day she is released she has liver clinic in the afternoon. We’re happy that it worked out that we could combine these 2 things into 1 trip in to Chicago. Let’s pray that she doesn’t need to see her doctors any sooner than this…
I would like to ask for prayers for our little friend, Marek. He was transplanted at Children’s Memorial on Wednesday with part of his uncle’s liver. They are both recovering well, but in much pain.
For you Durand people we’ll see you tomorrow at the Bake Sale at the bank!
Love,
Jenn
Tuesday, February 17, 2004 6:33 PM CST Shelby was able to have her tests done today despite still feeling under the weather. She had her "happy" shot of versed and cracked us up to no end jabbering away in her drunken state. They let me go in the OR and hold her on my lap while she was put out. The procedures took about an hour-and-a-half and then they came to get us in the waiting area saying that our little girl was not too happy. When we got there she was sitting on the nurse's lap just about inhaling a bottle of apple juice. She hardly acknowledged us until her juice was all gone. After that I nursed her and she fell back asleep. After about an hour they said she was o.k. enough to go home.
She has taken 2 other long naps today and by now her pain meds for her bone biopsy have worn off. She is quite sore and limping, but still insists on walking. Hopefully Motrin will do the trick for her pain management.
The results of her endoscopy are...drum roll, please...1 small varice!!! That is about the same as last April! We are sooooo happy! They said she is at little risk for a bleed right now, but the slight possibility is there. These results will put transplant on hold for now. It will take 2-3 days for her Celiac Disease biopsy results.
Thanks so much everyone for your prayers and kind thoughts. Scott and I are very exhausted because we finished packing for our trip around 11:15 p.m. last night and then both girls were up at 1 a.m.! Riley came down with the diarrhea that Shelby had and Shelby's temp was up to 103! Needless to say, we are exhausted. Riley is already feeling better and Shelby's temp is down to 100. Let's hope for good sleep tonight.
Love,
Jenn
Monday, February 16, 2004 7:43 PM CST Well tomorrow is Shelby’s big day of procedures. I hope she’s able to go through with them. She came down with a nasty case of diarrhea today and then began running a fever of just about 102. While I was reading to Riley tonight, Shelby fell asleep on the couch. That is so not her! This is the first time I’ve seen her actually act sick. I must have changed close to 20 diapers today, but she was eating and drinking well all day. Actually, she acted just fine until this fever crept in. I already put in 1 call to pre-op asking if they would still be able to do her procedures and they checked with the Ortho. Doctor. Because of her having to take meds to “prep” for the bone biopsy, he wants to try to do it unless she is really, really sick. I don’t know if they’ll be able to do her endoscopy, though. Tomorrow we’ll know. We’ll be leaving about 4:30 a.m. as we need to check her in by 6 a.m. and her procedure is scheduled for 7:30 a.m. I hate the thought of getting up that early, but am very thankful that Shelby won’t have to go very long at all being NPO (nothing by mouth).
I’ll try to do an update on here tomorrow night, even if she does end up needing to stay overnight at Children’s. They have a computer lab for parents so I’ll try to sneak off to tell the day’s news.
Please hold Shelby in your prayers that she feels well enough to tolerate the procedures tomorrow and that she recovers well. Also Scott and I could use prayers for a safe trip in and home and patience while she is having her tests. The results we find out may be great news or…not so great news. Miss Riley could use some prayers also as it is hard on her to be left at home even though she will have Grandma and Papa waiting on her hand and foot. She feels a bit left out. Its hard for a 4-year-old to understand that its not all fun and games for Shelby on these outings. Pray for her to have some understanding.
Thanks everyone!
Love,
Jenn
Tuesday, February 10, 2004 11:33 PM CST Today’s clinic was long (as usual) but we got our chance to talk with everyone that we had questions for (Child Life, Social Worker, Nurse-Practitioner, and doctors). Shelby is continuing to grow well. She is about 32 ˝ inches and 28 pounds. We did get to ask our questions about her tests next week and they added another one…a biopsy of her small intestine. As some of you may remember, last April she had the same type of biopsy to check for Celiac Disease. That turned up negative, but guess what this biopsy is for? You guessed it! Celiac Disease. Let’s see…how to explain. I’ll do the “long-story-short-version” and explain more later. Its already 11:24 p.m…
Shelby has been struggling with a Vitamin A deficiency for about a year now. Her doctors’ latest attempt to treat it was with Vitamin A injections. Well, those bombed and made her levels drop even more. Scott and I have really pressed this issue with her transplant team and local GI because no one knew what to do with this deficiency and we were not taking that for an answer! So, today we made some progress. Dr. Whitington (the top liver doc) talked with us and it was decided to start her on ADEK oral vitamins. They have a large concentration of Vitamin A and also contain the other fat-soluble vitamins that Shelby needs. The immediate concern right now is to get her levels up in the normal range, so she’ll have this new vitamin for a month and then her levels will be re-checked.
But…Vitamin A is the most easily absorbed vitamin of the ones she needs to be supplemented with so it doesn’t make sense that she is having such trouble absorbing this. Some “ideas” were thrown out today suggesting that maybe Shelby is dealing with some other disease (in addition to Biliary Atresia) or condition that could be causing these “atypical” complications from her liver disease. Cystic Fibrosis, Celiac Disease, and pancreatic insufficiency were all talked about. Her doctors are taking the “easiest-to-rule-out-or-diagnosis” diseases first into consideration and then they’ll go from there. Shelby is in great need of your prayers especially since she already is suspected of having an additional bone disease. Is everything related? That’s the puzzle her doctors are trying to put together.
My emotional and brain power has just run out tonight. I just wanted to give everyone a brief update on today’s news. Please check back in the next couple days as I will go into more detail.
This Saturday is National Donor Day at your local Saturn dealer. Here in Rockford it’s at Saturn on Perryville from 8 a.m. – 2 p.m. Please take the time to stop by.
Love,
Jenn
Friday, February 6, 2004 4:22 PM CST We just received a call this afternoon from Shelby’s transplant nurse saying that our volunteer living donor, Michele Wirtz, our friend from church, has been accepted by Shelby’s surgeon. This is the final o.k. that we were waiting for. Thrilled, joyous, nervous, scared….we’re feeling all that and then some on hearing that news. No date is being set yet for the transplant. Shelby’s scope on Feb. 17th will give us a better idea of when that might be scheduled.
Shelby is still acting more tired than usual and that concerns us because it can be a sign of progressing liver disease. Please continue to pray for her…Also please pray for Michele. This act of donation truly shows her courage, generousity, and willingness to give of herself (literally) to help someone else. THANK YOU MICHELE! We also have a little friend, Annika, who needs your prayers. She is 3 years old and 2 years out from her 2nd liver transplant and is experiencing some post-transplant complications. She is fighting RSV, EBV, and PTLD and has to stop taking her anti-rejection medication to attempt to treat the PTLD. The fear is that stopping her anti-rejection meds could lead to rejection. It can be a vicious cycle to treat PTLD. Click here to read up on PTLD. Hopefully we can visit with her and her family when we are in Chicago on Tuesday.
Take care everyone and have a great weekend!
I’ll give another update after Tuesday’s clinic.
Love,
Jenn
Wednesday, January 28, 2004 10:17 AM CST Hooray!!!!!!!!!!! Shelby’s x-ray of her wrist looked fine! Finally I was wrong about suspecting a break. Thank Goodness! Her CBC’s looked fine, too. Some numbers were not as great as they previously were, but still barely in the normal range. She is still acting more tired than usual and cranky – could possibly be a growth spurt or maybe her ammonia levels are rising. We’ll watch her and as long as she doesn’t start acting lethargic, they’ll run her ammonia level when we are in Chicago on the 10th of February.
We now have the date for her bone biopsy and upper endoscopy. February 17th she’ll have both those procedures done at Children’s. As long as there are no complications (we aren’t expecting any) she will be home either the day of or the next day. The bone biopsy results will take 8 – 12 weeks, but we’ll know immediately after the procedure about the endoscopy results. She’s having the endoscopy done to check for varices. Click here to read a definition of varices.
UPCOMING FUNDRAISING EVENTS
Bake Sale - Saturday, February 21st
at Durand State Bank in Durand, IL
8 a.m. – Noon
More events are being scheduled including a Krispy Cremes fundraiser, a game against the Ice Hogs (March 13th, I think), and much more.
Take care everyone and STAY WARM!!!
Love,
Jenn
Monday, January 19, 2004 9:06 PM CST Hello all! I was just updating the page tonight so I thought I’d give a small update. Shelby fell again on the 9th so the next day I took her in for x-rays on her wrist. No break shows now, but Friday I’ll take her back for a follow-up x-ray. Let’s pray that this one doesn’t show a healing bone. We’re a little confused now, though, because she alternates limping between the foot she broke her toe on and her “good” leg. Maybe she’ll be having x-rays of both legs, too…YIKES!
She has been dealing with some intestinal stuff since last Friday and I think I’m going to have to give the doctor a call tomorrow about it. She is having blood in her stool in small amounts, but we don’t want any at all! Please pray that it is just some viral bug she’s dealing with. Her tummy also seems a little bigger and she is bruising a bit more. We’ll see what the doctor says.
Riley is doing good. She has 2 days off of pre-school this week. She is still in love with Disney Princesses, but has been enjoying watching “Toy Story” and “Finding Nemo” lately. She and Shelby get along great – I wish it would last. I know, I know…dream on.
Please check out the photo album and see the new pictures. Also we’d love it if you sign the guestbook to let us know you were here for a visit.
Take care everyone!
Love,
Jenn
Wednesday, January 7, 2004 8:47 PM CST Today we heard on Shelby’s labs and x-rays. Her liver numbers are o.k. Some have improved, some have remained the same, and a couple look a little worse. Overall, they’re pretty good. But…this is the kicker…she DID break her big toe when she tripped and fell the Friday before Christmas! Yes, the new x—rays showed her bone healing (just like the last break was discovered). AAARRRRGGGHHH! This is very frustrating! Now her liver doctor is even more anxious to talk with the Nephrologist about her case. (They have not spoken yet since we saw the Nephrologist in December.) A 4th fracture is not good. Thank God her breaks have not put her out too much. They have been relatively minor, but way too frequent. I’m guessing tomorrow someone will call us about this and let us know what the next step is.
Please continue to pray for our little Shelby.
Love,
Jenn
Tuesday, January 6, 2004 10:15 PM CST We just got home a while ago from Shelby’s clinic visit today. We were there for 5 hours! She had a “follow-up” x-ray on her foot from her fall before Christmas and labs in addition to seeing the doctor, social worker, and nutritionist. We found out that her liver disease is progressing (bad!) as her liver and spleen have grown another 2 cm in 6 weeks. This tells her doctor that her portal hypertension is getting worse. Complications that can arise from portal hypertension are ascites (fluid build-up in abdomen) and GI bleeding from varices. We do not want Shelby’s liver disease to progress to those complications! We (us and her doctors) would much rather her be transplanted before she gets in such bad shape. The plan is (for now) that if a suitable living donor is found to “scope” Shelby to see exactly what condition her varices are in. If they find they are terrible then she will be transplanted; if they are so-so, they we will wait for other/further complications. We are still waiting to hear on the date for her bone biopsy. I will be doing some phone calls about that tomorrow. We go back to see her Hepatologist (the doctor she saw today) in 5 weeks.
We stopped on the way home in Hoffman Estates to eat at the Lonestar that our friend Steve manages at. We had a wonderful supper and Shelby was on her best behavior. THANKS STEVE!!! Shelby promptly fell asleep after we left there as she had no nap the entire day!
Our new person being tested to be Shelby’s living donor had safe trip in to Chicago and a positive experience today with the testing. In 2 weeks they will know the results.
Please continue to keep everyone involved with Shelby’s care in your prayers.
Love,
Jenn
(P.S. Sorry this rambles on, but I’m beat…)
Sunday, January 4, 2004 6:58 PM CST Hi all! HAPPY NEW YEAR! I just wanted to let you know that Shelby is walking much better. I can still tell she’s limping, but that’s just because I’m her Mommy! Tuesday we head in to Chicago to see her Hepatologist, Dr. Alonso. Also on Tuesday there is a new person who will start their testing to see if they are a “match” to be Shelby’s living donor. Please keep this person and their family in your prayers as they go through this testing phase and for their safe travel to and from Chicago.
Nothing much new going on around here – we like it that way! I’m just trying to figure out where to put all of the girls’ new Christmas toys. I’m sure that will keep me busy for a while because I have so much time on my hands…yea, right.
My brother and his wife gave us a digital camera for Christmas so hopefully I will post new pictures often. (Thanks Chris & Heather!)
I’ll let you know how Tuesday goes.
Love,
Jenn
Thursday, December 25, 2003 0:36 AM CST Monday the Orthopedic doctor said he sees no break in Shelby's leg or foot. He really didn't have any explanation for why she is limping so much. He said kids (as young as Shelby) really don't get sprains. He said if there was a fracture in her foot, there is nothing he would do for it right now. We are just to watch her. I sure hope it doesn't show up later that there really was a fracture! In a month when a lump doesn't form indicating a healed fracture - then I'll be reassured that nothing is broken. That is what happened with the last break. Thanks everyone for your well-wishes!
Merry Christmas!
Love,
Jenn
Saturday, December 20, 2003 4:55 PM CST Shelby must have thought things were too dull around here so last night she decided to bang herself up a bit. Let me explainÂ…around 5 p.m. I got a call from one of her nurses at ChildrenÂ’s so I went in the girlsÂ’ room so I could hear. My Dad was reading to Riley, my Mom was cooking supper, and Shelby was playing in the living room. It was one of those times where everything was happening at once and weÂ’re not quite sure how she did it, but she fell (we think she tripped over a toy or stepped on it) and fell into the recliner. My Mom got to her first and she had a rug burn on her forehead and was quite upset. She was sort-of doing her broken bone cry (trust me, I know what that sounds like!). I took her and calmed her down and then went to put her down on the floor. ThatÂ’s when we noticed the trouble. She tried to walk but cried out when she used her left leg. We observed her for a little bit to confirm that that was actually the problem and then I headed off to the ER with her. After 3 hours and 8 rays we were back home with no broken bones!
This morning, though, she was still having quite a bit of trouble walking on it and even resigned to crawling. For those of you who know Shelby well, something has to be pretty wrong for her to do that! Her 3 previous broken bones did not slow her down at all. I called her Pediatrician and they called the hospital to have them put a rush on the Radiologist reading her x-rays. He did not see any breaks so we are treating her with Motrin and an Ace wrap. She is using it more and can walk now, but still is gingerly stepping on that leg. We think she hurt her foot somewhere. I think she’s already sick of us asking “Where does your leg hurt Shelby?”
If she’s still having trouble on Monday we’ll be calling her Orthopedic doctor so he can take a look at her. There’s no bruise or mark to indicate what or where she hit. As I sat in the ER last night I thought “I wonder if they can do a red and white cast so it looks like a candy cane” – I was so sure she broke it. Just because the x-rays didn’t show a break doesn’t mean it isn’t broken, though. Remember, when she broke her collar bone that fracture did not show until it had healed.
Please pray that our little froggy doesnÂ’t have fracture #4. Her doctors will be none too pleased about that.
Please check out the new pictures of the girls. I just posted them today.
Happy Holidays
Love,
Jenn
Wednesday, December 17, 2003 7:36 PM CST Yesterday we took Shelby to see Dr. Langman, Pediatric Nephrologist at Children’s Memorial. He ruled out many possible diseases from the tests that he ordered prior to our visit, but still needs to probe further because he knows there is something not right with Shelby’s bones. He says they are under-mineralized and suspects some type of metabolic bone disease. It could be in relationship to her liver disease or a whole separate issue. So…in early January Shelby will be having a bone biopsy at Children’s Memorial. It will be “outpatient,” but require an overnight stay for observation afterwards. They call it a “23-hour stay.” Just like with her liver biopsies, she will need to be monitored closely after the procedure. They will do it in the OR with her under general anesthesia because she is so young. Her Orthopedic doctor, Dr. Grayhack, will be doing the procedure. We need to clarify what they told us yesterday about getting the results, though. Scott and I could swear the nurse told us it takes 8 – 12 WEEKS for the results!!!! That seems a bit ridiculous. We will be following up on that.
Dr. Langman is one of 4 or 5 doctors in the country that treats these type of issues. He only has to refer 3 or 4 kids a year for bone biopsies, so, from our understanding, they are not very common. Shelby never likes to do anything by the book! We should have taught her to read when she was a newborn so her body knew how to behave - ha, ha! If it were only that easy…
Its been over a year now since Shelby has had an overnight stay at the hospital so we are concerned about that. She will be in pain at the biopsy site (the hip) and while we certainly don’t want her in any discomfort, we know how important it is for Dr. Langman to be able to diagnose her correctly so an appropriate treatment (if any) can be put into place. A concern about treatment is side effects from the medication (could be very tough on her liver) and a concern about bone disease is that transplant may not “cure” it and the medications Shelby will have to be on after transplant could aggrevate it (the bone disease) – UGH!!!
Please say some extra prayers for our little “froggy.” (She thinks she’s a frog most of the day and hops around and “ribbits” like one. Wonder if Santa will bring her one for Christmas? Wink, wink!) This is all she needs is a second disease on top of the first one. More waiting (for Mom and Dad) is hard, too. She’s a little mystery! Thank God she is feeling well and full of energy.
I hope everyone saw our interview on WREX – channel 13. We were very pleased with the way they presented Shelby’s story. Let’s hope it generates some awareness of the need for organ donation…
HAPPY HOLIDAYS EVERYONE!
Love,
Jenn
Friday, December 12, 2003 8:44 PM CST A huge THANK YOU to everyone who bowled at the Cosmic Bowl or made donations to Shelby's fund. Over $3800.00 was raised. So that leaves roughly $96,200.00 to go...but who's counting?!?!?!
Dr. Grayhack (Ped. Ortho.) confirmed Shelby's weak bones by the results of her hand x-ray. Her vitamin A level has dropped even lower despite an injection last month so on Monday I had to take her in for 2 injections! We can't wait to meet with Dr. Langman on Tuesday. I hope we get some answers to these crazy vitamin levels and weak bones!
This morning channel 13 interviewed us on Shelby's story. The story will air Tuesday night on their 6 o'clock broadcast. Should be good...everyone tune in.
Shelby is doing well despite what the inside of her body is doing. She now LOVES to eat frozen french fries (yuk) and Rice Dream chocolate "ice cream." So far, she isn't too tempted by the Christmas tree, but its only been up for a day.
I'll update after Tuesday's appointment.
Love,
Jenn
Wednesday, November 26, 2003 10:20 PM CST Today we had our trip into Glenview (no thanks to Yahoo! Maps, but more on that later…). The blood draw was o.k., although I think they repeated some labs that were just done last week. I’m bummed that I wasn’t more on top of things to notice that before it happened. Especially with a kid who already needs to take iron supplements – she needs all the blood she can get/keep. Before that they put a urine bag on her because she gets mad when they draw her blood and then sometimes she pees. For those of you who have no experience with urine bags on infant/toddler girls, I’m not going to get into an explanation, but trust me in saying they need to come up with something better! We went on to have her Skeletal Study after that and, while it went better than we expected, it was a bit of a rude awakening to Shelby because she had to be strapped (Velcro, really) to a board the whole time. They strapped her head, abdomen, and legs. Thank goodness, just before we left this morning, I grabbed a little bottle of bubbles and she was thrilled with Scott blowing them at her. It worked for most of the time, but by the end she was pretty annoyed. When she had to be tipped on her side for skull x-rays she was pretty freaked out. I’m sure it was a weird feeling to be strapped to that board and then flipped on her side. She kept saying “Help me, help me.” It broke our hearts, but we knew these tests had to be done. We just kept reassuring her that Daddy and Mommy were there and that she would be done soon. The hardest part was waiting for the x-rays to be developed so the technician could look at them before we could move on. Shelby had to stay strapped to the board because otherwise they have an awful time getting them back in. I did manage to pick her up while strapped to the board (with Scott’s help) and nurse her to calm her down. It wasn’t easy, but well worth it! (How do you like that my fellow breastfeeding friends?! If there’s will, there’s a way – AMEN!) She did manage to get some leverage and pull the head strap off twice – tough little girl! Gotta love that fighter spirit!
While we were done with her x-rays before 10:30 a.m. we were stuck there until about 1 p.m. waiting for her to pee in that stupid bag! We must have had to put 5 different bags on her because they wouldn’t stick or she’d pee and it wouldn’t go in the bag. We even tried to sit her on the potty and catch a sample that way, but that was a no-go. We were giving her juice, pop, water, rice milk – just trying to get the kid to pee. How frustrating for her! Finally she peed and some went in the bag, but the lab tech was telling us that we needed 1 oz. and it was just under ˝ an ounce. We had to do the urine samples there (as opposed to Rockford) because there were special tests that Chicago had to run. I was trying to ask the tech to find out if that was enough urine for the “special” tests and if we could just do the other “regular” tests back in Rockford. I have urine bags at home so when we need a sample in Rockford I just try my best to get the sample here and then I run it down to the clinic. Well, it was obvious that the tech was not understanding what I was getting at so I called Dr. Langman’s office (the Dr. who ordered these tests) and they checked it all out for me and said ˝ oz. was o.k…so we hit the road! You really have to be an advocate for your kid. I mean, had I not questioned the amount of urine needed, then we could have been there all day!
December 16th we will find out those test results. That is the date we meet with Dr. Langman at Children’s in Chicago.
My little comment about the Yahoo! Map was because I always print out one of those for directions when we go someplace new. So far, all the directions have been reliable…until today. Thank goodness we were WAY ahead of schedule because we ended up in the wrong lane for our exit off I-90 and starting going south when we should have been going north. Oh well, we made it!
Everyone have a wonderful and HAPPY THANKSGIVING!
From our family to yours
Love,
Scott, Jennifer, Riley and Shelby
Thursday, November 20, 2003 11:40 PM CST As usual, Shelby’s appointments in Chicago were exhausting and long. Her Hepatologist was satisfied with how her liver and spleen felt (about the same as last time; they both measured @ 8). Her weight and height, though, have leveled off a bit so she isn’t following her growth curve anymore. This can be a sign that her liver can no longer support her growth, or maybe she’ll have a growth spurt before her next appointment and get back on track. We’ll see how it goes…Her labs from Tuesday were excellent! Most of her numbers were normal, even for healthy people, not just Shelby. We did get to meet another family while waiting in the lab whose 3 ˝ month old son, Marek, has an undefined liver disease and is being listed for transplant. Please keep little Marek in your prayers.
Children’s put us up at the Marriott Residence Inn downtown and we were kitty-corner from the Hancock building. Downtown is nice, but not with a 20-month-old when its raining!
Tuesday we met with Dr. Grayhack, Pediatric Orthopedic doctor. That appointment took FOREVER!!! He thought that Shelby’s breaks weren’t too unusual except for the broken leg. He doesn’t think that she has any type of bone disease, just malabsorption issues…which leads us to Dr. Langman, Pediatric Nephrologist. Dr. Langman is an expert in Vitamin D (or so we’re told) and might be able to give us some insight as to why Shelby has some of her vitamin deficiencies. Next Wednesday, we take her to Glenbrook Hospital in Glenview for a Skeletal Study (45 minutes of x-rays –she’ll love that – NOT!) and blood and urine tests. This doctor likes all the tests to be done before he even sees you. On December 16th we will get to meet with him @ Children’s Memorial. We think either he’ll say let’s try to treat her with X medication or her liver is in rotten shape and it can’t do what it needs to with vitamins and nutrients. The latter answer would lead us down the transplant path.
For now, there’s not much more to relay. Shelby is dealing with a yucky cold – actually we think she caught another one when she was just getting better from the first. We need to really watch where and who we have her around because when her immune system is working overtime, she seems to be very susceptible to picking “bugs” up.
One more prayer request. Our little friend, Marisa (8 months old), from Michigan had a big bleed last week and is now on the waiting list. Please pray that her new liver comes soon before she has any other complications.
Love,
Jenn
Friday, November 14, 2003 11:42 AM CST Well...I spoke with the Social Worker for Children's and Shelby's Hepatologist, Dr. Alonso, called me to talk about this big "goof-up." They both apologized and said that they would definitely bring this to everyone's attention, but the problem is that the living donor coordinator works for Northwestern so Scott and I will need to file a complaint with that hospital.
I'm glad Dr. Alonso called us, not only to let us know that she was sorry this happened, but also because it gave me a chance to ask her some (o.k., quite a few!) questions. Basically, they want Shelby to see the Nephrologist because he is an expert at Vitamin levels, namely Vitamin D. He will be able to analyze her Vitamin A defiencency better. Obviously, she is seeing the Orthopedic doctor because of the broken bones. With her seeing both these new doctors they hope (I don't know if that's good or bad) that possibly she might have some underlying disease that while coupled with the BA is causing her bones to be weak. They haven't seen another child at their center with such weak bones and great LFT's. Really, though, Dr. Alonso does not think that's its anything but the BA causing her weak bones. And...if it is just the liver disease and nothing else causing these breaks then they will want to proceed with transplant. Now whether that means early next year or when she gets her 4th break (do we really want to have that happen!?) I don't know yet. Dr. Alonso strongly feels that we need to get our ducks in row because her PELD score most likely will not go up at all.
Tuesday and Wednesday Shelby has her 3 appointments in Chicago so we will be staying overnight in the "BIG" city. I hope that she does not have to endure too many new tests, but I understand that they might be necessary to rule things out. I will update when we return home.
Thank you everyone for your support!
-Jenn
Friday, November 7, 2003 10:53 PM CST Today we got some bad news that the surgeon does not want to use part of Scott’s liver. Let me explain...today I called Shelby's transplant team to see what they discussed about her situation in their meeting yesterday. They now want her to see a Pediatric Nephrologist (Kidney) and Pediatric Orthopedist (Bones) to rule out that nothing else is causing her bones to be weak. Apparently her Hepatologist (who we just started seeing in July) was under the assumption that she had already seen these type of doctors when her bones were being "investigated" in the late spring. They don't think its anything but her liver disease that is deteriorating her bones, but before they pursue transplanting her, they want to know for certain (we'd like that, too). So then they also tell me that her surgeon, Dr. Superina, is supposed to call us. Finally at 4:50 p.m. he gives us a call and says that he does not want to use Scott's liver because he has 3 small arteries connected to his left lobe rather than just 1 big one. The concern is that once Shelby is transplanted the arteries will clot and she'll need to be re-transplanted ASAP. We knew that Scott had this strange anatomy from his MRI, but Northwestern told us that if they thought it was a problem, then they wouldn't have pursued doing his liver biopsy. When Scott got the call with his biopsy results the words "You're a match" were used and no further testing was talked about. Now the coordinator is saying that she told Scott he would probably need an arteriogram. We had already expressed our concern to Shelby's Hepatologist and Nurse-Practitioner about lack of communication from Northwestern about the whole process, but this takes the cake! I've already talked to the social worker and he is checking this all out for us. The recommendation from the surgeon is that we move on to testing a new living donor (me), rather than doing the arteriogram on Scott which would probably just show the same thing as the MRI.
Tonight we are crushed - not that Shelby is an urgent transplant, but having a living donor place was extremely reassuring. We know that we are very fortunate that both of us have compatible blood types to Shelby - many families don't have that at all. I have some concern about me being the living donor in that Shelby is still nursing and I am a huge comfort to her. Of course, some of you are saying "Forget the nursing, she needs your liver." It is something I need to ask many questions about and weigh the pros and cons.
We are also very angry tonight about the miscommunication that took place between the 2 hospitals and us. If Shelby hadn't broken her collar bone, how long would it have taken the surgeon to review Scott's records? How much longer could it have gone on with us thinking he was to be her donor? Scott is very upset tonight. You should have seen us when he got the phone call saying he was a match 2 weeks ago. We were jumping up and down and hugging one another - now this. I suppose this is part of the rollar coaster ride, too.
Please pray for us to have patience, wisdom, and faith in discussing what our next step is to be…
-Jenn
Thursday, November 6, 2003 10:08 AM CST I did get a call from the Pediatrician’s on Tuesday confirming that, yes, Shelby HAD broken her collar bone and now it has healed. Her transplant team was none too thrilled to hear about this latest break and said that 3 breaks in 8 months is reason enough to push ahead with transplant. They are making sure everything is in place for Scott to be her donor because broken bones (although a major indication that her nutritional status is extremely poor!) is not enough reason to get moved up in priority on the waiting list. I will know more after today, as this is the day her team meets and discusses her case. We are thinking that they will advise us to schedule her transplant sometime after the holidays. Please continue to keep her in your prayers that no more complications pop-up and that she does not break any more bones.
Check back in the next couple days as I should be posting new pictures of the girls. Thanks!
-Jenn
Saturday, November 1, 2003 8:59 PM CST Thank goodness I have been able to go this long without having to do an update! Of course, I knew something would eventually pop up and that was today…about 3 weeks ago Shelby fell off Riley’s bed onto her shoulder. She didn’t complain much, but every time we picked her up her shoulder sort-of went out of place. X-rays and exams by her Ortho. Doctor came back o.k. so we just watched her. Now today I notice this big lump along her collar bone so off to the Pediatrician’s we go. He thought for sure it was fractured until the x-ray came back fine. It was then decided that it was an old break (from 3 weeks ago) that had calcified. It probably didn’t show up on the x-ray then because her bones are so thin and they just couldn’t see it.
She is fine – not in any pain and still going 1,000 miles an hour. She jumps off anything she can and had a wonderful time trick-or-treating last night. She kept running behind her sister and cousins yelling “Kids – wait – I coming!” It was too cute! I’ll post Halloween pictures later this week.
Please pray that this 3rd break doesn’t lead to transplant, and, if it does, please pray that her doctors are taking the right route. On Monday we’ll know more…
Thanks - Jenn
Friday, October 17, 2003 3:03 PM CDT ***WONDERFUL NEWS***Scott is a match for Shelby!!!!!!!!!!!!!!!!! We just got called this morning with his biopsy results and they said the fat in his liver is minimal so it is not a problem. Now the results are sent over to Children’s where the surgeons will give it the final o.k. Her transplant is not scheduled any time soon, but it is so nice to know that we have a living donor all ready to go, if needed. Scott is so happy and honored to be able to do this for his daughter. I’m very proud of him - what a courageous guy!
Don’t forget about the Moonlight Bowl coming up Dec. 6th.
Have a great weekend!
Love,
Jenn
Tuesday, October 14, 2003 9:51 PM CDT Hello everyone! Scott had his biopsy today. It went well except they hit a nerve that made his shoulder hurt A LOT. They say that is a common complication, and, as of tonight, his shoulder is doing o.k. He’s been very good and has stayed on the couch like he’s supposed to (I’m sure its breaking his heart to have us waiting on him hand and foot – that’s o.k., he deserves it). His side is sore, but so-far, so-good. In a couple of days we should have his results.
Shelby is doing just fine. She caught her 1st cold (ever) from her big sister. She has a nasty cough and was up most of last night, but seems to be on the mend. I had to take her to her orthopedic doctor yesterday because last Thursday she fell and hurt her shoulder. We just weren’t sure if it was o.k. or not, but x-rays confirmed that it was alright.
I’m very HAPPY to report that Bruce, Scott’s brother, has volunteered to be our Media Coordinator for Shelby’s fundraising campaign. Now, only 1 spot to fill…Campaign Coordinator. Even though we aren’t officially up and running with COTA, Scott and I have decided to have a Moonlight Bowl at the CherryBowl Saturday, December 6th to get the fundraising going. We need 96 couples – I know we can do it!!! Cost is $25 per couple. Call us @ (815) 654-2249 to make your reservation.
Please continue to pray that Shelby’s heath continues as it is (or better!) and that Scott is the perfect match for her. THANK YOU!
-Jenn
Thursday, October 9, 2003 9:29 AM CDT Tuesday’s visit to Chicago was very llllloooonnnngggg, but it went really well. Her liver and spleen are still big but not any bigger than the last visit. Her tummy is huge. As her doctor put it “No ascites (fluid), but big organs.” She has grown in height and weight since her visit there in August – yea! Her labs from Tuesday looked the best they ever have. When they called with her lab results yesterday, I jokingly said “And why is she listed?” I got the same answer I always get “its her weak bones.” The complications Shelby has from Biliary Atresia are usually only seen in advanced liver disease. The confusing part about it is that usually your labs don’t look as good as Shelby’s do if you have advanced liver disease. We talked over the game plan and as of now it is to wait until she starts to decline in health and then transplant her right away (if we have a living donor). If we don’t have a living donor lined up, then her doctors will appeal her “score” to get her higher priority for a cadaveric liver.
Speaking of living donors…This Tuesday is Scott’s liver biopsy at Northwestern. His Dad will be taking him in as he will not be allowed to drive himself home. Shelby and I are not taking him in because 18-month-olds are not easy to entertain in hospitals (at least ours isn’t!) and I don’t do Chicago traffic (yuk – insane!!!). I will let you know how it goes for him.
Our fundraising campaign is not going anywhere as of right now. We still need a Campaign Coordinator and Media Coordinator to help out. Please contact us if you are interested in one of these positions. If we don’t get these roles filled soon we will have to rethink our game plan. There is still a need for funds, though…
Take care everyone!
Love,
Jenn
Friday, October 3, 2003 7:53 PM CDT O.k., this is what we’ve been waiting to hear – SHELBY IS NOW OFFICIALLY LISTED! She only has a PELD (scoring system used to rate priority on waiting list) of -8. That’s very low. As I’ve said before, the labs that her PELD is based on are very good. To learn more about the scoring system check out http://www.unos.org/resources/MeldPeldCalculator.asp?index=96. Its everything else that doesn’t look good. Shelby is very nutritionally compromised. Her body is having trouble maintaining adequate vitamin levels, resulting in weak bones and who knows what else. Her doctors feel that in the near future her poor nutrition will catch up with her (and it won’t be good). We will meet with her doctors in Chicago this Tuesday so that we can get the low-down on this whole being “listed” business.
The blood in her stool stopped on Monday so she was able to get out of being scoped. This week she has been feeling good and eating great! She has been in some major “NO” yelling battles with her big sister. I hate to say it, but Shelby won most of them. She sure has stamina!
Scott and I have chosen COTA (Children’s Organ Transplant Association) to use for Shelby’s fundraising. We still need people to volunteer for the Campaign Coordinator (or co-coordinators) and Media Coordinator positions for Shelby’s fundraising campaign before we can kick things off. Please think hard and prayerfully about taking on one of these roles. There are many people out there with great fundraising ideas just ready for them to be put into action. Call us 815-654-2249 to talk about helping out.
I’ll have more to update after Tuesday. Take care everyone and have a great weekend!
Love,
Jenn
Friday, September 26, 2003 10:05 PM CDT Tonight we heard on Scott's first phase of living donor testing. The MRI looked great (yea!), except that he will need a liver biopsy (due to fatty liver) and he has 2 extra arteries. They will do further testing to make sure the arteries won't be an issue. Now we wait to see when the biopsy is scheduled. It will be performed at Northwestern.
Last night was the first Fundraising Committee meeting. We had about 20 people attend. If you'd like to help, please contact us.
Shelby continues to have blood in her stool. If this continues on Monday, then she will have an upper and lower scope next Wednesday. Please pray that the blood ceases.
She continues to climb, climb, climb. Today she fell off our bed and Riley's desk chair. Thank God her bones didn't suffer any damage. Some of her vitamin level tests came back - her zinc is low again. Now we add yet another vitamin/mineral supplement to her daily med regime.
Please keep Shelby in your prayers!
Thanks - Jenn
Tuesday, September 23, 2003 8:49 PM CDT Well, things are looking better for Shelby – yea! Her WBC and platelets are in the normal range. Must have been something viral she was dealing with. Since last Thursday she has had blood in her stool. Dr. Deutsch is keeping a close eye on it. If her stool still tests positive for blood next Monday, he will scope her next week to see what could be causing it. It could be from the diarrhea she had last week or it could be from her portal hypertension. Blood could be seeping and coming out in her stool. Let’s hope and pray that it clears up on its own. She is acting great and today ate the best she ever has in her entire life (thanks to Daddy!). We can’t keep her off the kitchen chairs – she is such a climber! She is always climbing up on Riley’s desk and coloring and drawing. She exhausts us!!!
Riley is loving Preschool and was very excited yesterday to be the “line leader” for going to the bathroom. Mom and Dad are doing o.k. sending their first-born to school 4 days a week.
This Thursday night is our first Fundraising committee meeting. We hope to have a GREAT turnout! Thanks for your prayers for Shelby in the past couple of weeks. Still no word on her being officially listed – the hospital is still waiting for the go-ahead from the insurance company.
Take care everyone!
Love,
Jenn
Sunday, September 14, 2003 9:13 PM CDT I hope everyone received their fundraising committee letters in the mail this past week. We are still in the process of choosing which transplant fund to use, but will have a decision made by the 25th for sure, if not sooner. As soon as we pick one I will post it on here and the information on how to make donations to Shelby’s fund.
Shelby is feeling much better. Thursday’s labs looked good. Her WBC count is up to 3.8; her platelets have dropped to 55,000 but the Drs aren’t concerned because they said that will happen in children with large spleens. Tomorrow she has labs again and I expect (hope & pray) that they will continue to look good. She has lost most of the 2 lbs. she gained (that is good). We have been told that viruses can do all this to a “liver kid.”
We are very excited because tomorrow is Riley’s first day of Preschool. She is looking forward to it, as are we. I’ll have to post pictures (when I get them) of her all ready to go to school.
That’s about all for tonight. Please remember Scott and his living donor testing on Tuesday. Thanks everyone!
Love,
Jenn
Tuesday, September 9, 2003 2:19 PM CDT Hello all! Its time for a new update on Shelby.
Since Saturday she has been running a temp in the 101 -102 range. Saturday evening we took her to the ER to be checked out because she had no other symptoms of being sick other than the fever & crankiness. Everything was o.k. with her liver (according to her lab work), so we just had a fun 4 ˝ hours in the ER (NOT my idea of fun!!!). On Sunday the fever continued so Monday morning I took her to the Pediatrician’s. Her throat and ears still looked o.k. (we were hoping for an ear infection or something – anything but cholangitis). He ordered more labs and we found out that while her liver numbers still looked good, her WBC count was down to 1.9 and her platelets were 66,000. The range that they like children’s WBC count to be is 3.5 – 7.0 and they like their platelets to be above 150,000. As you can see, Shelby’s are a far cry from that! One possibility is that she is fighting something viral which has caused these numbers to drop. Another idea is that the antibiotic (Bactrim) she’s been on since after her Kasai surgery has caused this. The Drs recommended that we stop giving her the Bactrim and do frequently blood draws (yuk!) to monitor these numbers. Until her WBC count and platelets improve she is more susceptible to catching various “bugs.” So for now, Shelby will have to put up with hanging around home. Thursday is her next lab draw and then again on Monday.
On top of this we found out that Shelby has gained 2 lbs. in the past 3 weeks. This is not a good thing – that’s a lot of weight for such a short time period. The most likely culprit is fluid build-up (ascites) which is common in progressing liver disease.
On Tuesday the 16th of September Scott will undergo living donor testing at Northwestern Memorial Hospital in Chicago to see if it is possible for Shelby to have a portion of his liver when the time comes. Please pray that his testing goes well and that he will be a suitable match for her. It will take about a week for us to hear on the results.
Hopefully today I will get the fundraising committee letters mailed out to everyone. If you don’t get a letter, but are interested in helping out please contact me @ pnutsmom76@yahoo.com. Thanks everyone!
-Jenn
Tuesday, August 19, 2003 9:54 PM CDT Hello Everyone!
Shelby's appointment went GREAT today!!! She's gained about 1/2 a pound since her last visit in July and her liver and spleen, while still pretty big, have not gotten any bigger. Her check-up went so well that Dr. Alonso did not even order any labs today!!!!!!!!! AMAZING!!! We are to follow up with Shelby's local GI, Dr. Deutsch, in 1 month and they will run labs then. We are going to try decreasing her multivitamin from 1 1/2 Tbsp. down to 1 tsp. They'll check her vitamin levels in a month, too. Let's hope they stay normal because getting that vitamin down her is tough.
They are still in the process of listing her even though things looked good today. Dr. Alonso still feels that Shelby is at risk for things to go very wrong, very quickly. We have been informed by the Financial Coordinator at the hospital that our insurance coverage is very good for transplants, so I am going to hold off on kicking-off the fundraising for now. There will still be a need for funds for travel accomodations, food, gas, possible lost income for a living donor, and her meds, just to name a few. If you have ideas about fundraisers please keep them in mind. I would like to have maybe 1 before the year is over and then more in the spring.
We had a great visit with our friend, Pastor Doug, and his 3-year-old son, Evan, while in Chicago today. We were able to have lunch together and then take the kids down to Oz Park. Riley and Evan are now pretty good buddies. Thanks guys for meeting us!
Well...let's hope I have nothing new to post until Shelby's labs in 1 month. (Pray, pray, pray, cross your fingers and toes...whatever it takes to make our lives as uneventful as possible!) Check back often, though, as I will post new pictures of the girls frequently.
Take care Everyone!
Love,
Jenn
Wednesday, August 13, 2003 9:53 AM CDT Sorry its been so long since I've posted, but nothing much has been happening (that's a good thing!). Yesterday, though, did bring a little excitement. We were at the YMCA getting ready to swim and Shelby was being her usual self, falling and getting in to everything. We got in the pool and Scott went to hand Shelby to me when I noticed that half of one of her front teeth was missing! She never cried and so we have no idea when it happened. So...Shelby and I got right out of the pool and off to the dentist's we went. He had to file it down a bit because there was a very jagged edge. Of course that was absolutely terrifying for her. I got to be the lucky one (not!) and hold her down for it! Now one tooth is much shorter than the other. It isn't bothering her at all, but, of course, wouldn't you know it, we have our church directory pictures today. And I was worried about her having bruises on her head!!! We are very thankful she has only a broken tooth and not another broken bone, though.
This coming Tuesday, the 19th, we take her in for clinic at Children's Memorial. We will be talking with their financial coordinator about transplant costs, so expect a letter about Shelby's fundraising committee meeting in the next couple of weeks.
Take care everyone and enjoy the end of the summer!
Love,
Jenn
Friday, July 18, 2003 7:50 PM CDT O.k., yesterday we heard on Shelby’s labs and they are really pretty good.
Total bili 1.8
Direct bili* 0.1
Alk Phos. 734
AST 95
ALT 58
Albumin 3.5
*this is the biliruben that the doctors look at more than the total bili
For those of you who have no clue what those are, they are tests that show how Shelby’s liver is functioning. Overall, they are very good. All except one or two are in the normal range and the ones that are off aren’t that far from normal. Some of you may be asking “Well, then, why does she need to be listed for a transplant?” The best answer I can give you right now is that the liver affects so many bodily functions that things other than what is reflected by these tests are what are going haywire in Shelby’s body. If you would really like to try to understand some more, please feel free to e-mail me questions at pnutsmom76@yahoo.com, or check out these websites http://www.classkids.org/library/biliaryatresia.htm (make sure to go under the Our Kids section and check out Shelby’s picture and story) and http://www.childrensmemorial.org/depts/gastroenterology/liver/biliary.asp.
Shelby’s visit with Dr. Deutsch went well today. So…for now we just enjoy her feeling well and deal with things as they come along.
Transplants are covered to a certain extent by insurance, but there are many costs that come out of a family’s pocket. Please watch your mailboxes in the next month or so for information on Shelby’s fundraising campaign and how you can be a part of it.
Have a great weekend everyone!
Love,
Jenn
Wednesday, July 16, 2003 8:34 PM CDT Hallelujah! Riley’s MRI was normal!!!!! This is exactly what we wanted to hear today (especially in light of yesterday’s news). Since she has been complaining MUCH less of the pain, we aren’t going to do anything for now. IF her pain flares back up, then she will do a trial of migraine medication. THANK YOU everyone for your prayers!!! Riley came home from the doctor today to find Papa working outside. I said to her “Tell Papa what the doctor said.” She ran up to him and exclaimed “The doctor said I was normal!” It was too cute!
Nothing new today on Shelby. We are still waiting on her results from yesterday’s lab work. Friday she visits Dr. Deutsch, her local GI. We LOVE “Dr. D!” He is just a great guy all-around and a lot of fun to see. Hey, if you’re going to the doctor all the time, it might as well be someone you like hanging around! Anyway, we’ll just touch base with him on Friday.
I’ll post Shelby’s labs when we hear on them.
Thanks everyone!
Love,
Jenn
Tuesday, July 15, 2003 9:40 PM CDT Wow! Today was the longest day I’ve had in a while! It all began when Scott and I were awakened at 2 a.m. by Shelby. We grabbed her and threw her in our bed with us and we were off to sleep again until 3:30 a.m. when the alarm clock went off. We passed Shelby off to Grandma and got ready for our day. Shelby never went back to sleep for my Mom but she did manage to snooze for an hour on the way to Chicago. The construction was no fun, nor was the “rush hour” traffic. We finally made it to Children’s and had her ultrasound. It took a little over an hour and she was not thrilled one bit about it! We tried all our tricks (reading books, nursing, playing with keys & cell phones), but not much kept her happy. Once we were done there we took off to shop (thank you Scott!!!) and Shelby snuck another nap in. In the afternoon she had clinic. We met Dr. Alonso for the first time and a few student doctors. We also saw Dr. Superina (Kasai and Transplant surgeon), Joan (the Nurse-Practitioner), and Renee (the Nutritionist). At one point I think we had 4 doctors and a few nurses in the room at once. Well……………………..it was decided, based on Shelby’s numerous “issues,” to go ahead and put her on the transplant waiting list. Dr. Alonso feels that with Shelby’s portal hypertension, enlarged and hardened liver (cirrhosis), large spleen, dilated bile ducts, and weak bones (yes, it is from her liver disease that they are weak) that she will need to be transplanted within the next year. This is not at all what we wanted to hear. We knew that this day would come, but we were pretty comfortable with where she was at (not needing to be listed). Right now it’s a matter of working things out with insurance before she’s officially listed. Once insurance o.k.’s everything, we will probably go ahead and start having Scott tested to see if he can be her living donor. He’s first in line to be tested. If he won’t work, then we’ll test me.
There’s so much more I could write about this but now its 9:40 p.m. and I’ve been up since 3:30 a.m. Sorry if I’ve rambled but we have a lot to think about right now……
Remember tomorrow is Riley’s Neurologist appointment. Please say extra prayers for my girls tonight. Thanks everyone!
Love,
Jenn
Monday, July 14, 2003 8:33 PM CDT Hello everyone!
Today the girls and I had a wonderful time at Palmer Park in Janesville, WI. It is a gorgeous park with a large wading pool for small children and an awesome playground. We met up with some friends there and had a great time!
Tomorrow is our journey to Chicago. We will be leaving at 5 a.m. as Shelby’s ultrasound is at 8 a.m. We hope to avoid some construction zone traffic by leaving that early. We’ll see…Please pray that her ultrasound goes smoothly and quickly tomorrow. Her first one took 2 ˝ hours because the techs had trouble finding the things they were looking for. Shelby’s insides are “wired” a little different than ours because of her disease…so sometimes things a little hard to find. The last ultrasound only took 30-40 minutes (a huge improvement!). After that we will walk down to Oz Park for some playtime and a picnic. At 1 p.m. we have to be back at the hospital to meet with the Hepatologist, Dr. Alonso. After that, Shelby will have labs and hopefully we’ll be on our way home. I’ll post a message tomorrow night letting you know what we found out.
Riley’s appointment with the Neurologist to find out her MRI results is Wednesday afternoon. Please pray, pray, pray that it is good news.
Thanks for checking back on the girls!
Love, Jenn
Thursday, July 10, 2003 8:41 PM CDT Hello everyone! Thought I'd give you a new update...
Tuesday Riley had her MRI. We couldn't have asked for it to go better. She went to "school" like usual and we provided the snack of jello jigglers since this was a "clear liquid" that she could have. Scott picked her up right before lunch and they headed to the video store. They got a movie that filled the time before heading off to the hospital just perfect. Once at the hospital, she was in a great mood. She never once said she was thirsty or hungry so we didn't have to deal with that. While we waited I kept pulling new toys out for her to play with. The night before I went out and got some new coloring books, books, silly putty, and other little trinkets to keep her occupied. Right on time (3:30) the anesthesiologist (one of our favorites, as we had requested) came to get her. Riley told her she didn't want any sleep medicine to which the Dr. said o.k. The Dr. then asked her if she knew how to blow up a balloon because she had a blue balloon that needed to be blown up. Riley was very excited about that and had lots of fun riding down to the MRI room in her "crib." She was very playful and had no clue what was about to happen, thank God! We got to be with her as she fell asleep and she did great. She tried her hardest to blow up that "balloon" and out she went. About 50 minutes later they wheeled her out and we walked down with them to outpatient recovery. She was coughing quite a bit and had a tough time coming out of it for about 1/2 an hour. She had a I.V. in her foot which really pissed her off so the nurses removed it. That helped a bit. After a while she just rested quietly in my arms. We were home by 5:30 and she was running around singing by 6:00. She ate a wonderful supper and slept all night. She hasn't said a thing about it today...Now we wait...We are scheduled to meet with the Neurologist next Wednesday afternoon to get the results. I'll let you know more after that meeting.
Now for Shelby. She is on extra calcium right now and will be meeting with the Hepatologists (Liver Docs) at Children's Memorial this Tuesday and having an abdominal ultrasound. Hopefully we will find out what's up with her bones and see if her bile ducts are still dilated. We'll see what the game plan is.....
Thanks for your prayers. We could still use them. Especially while waiting for Riley's test results. Thanks everyone - Love, Jenn
Thursday, July 10, 2003 8:41 PM CDT Hello everyone! Thought I'd give you a new update...
Yesterday Riley had her MRI. We couldn't have asked for it to go better. She went to "school" like usual and we provided the snack of jello jigglers since this was a "clear liquid" that she could have. Scott picked her up right before lunch and they headed to the video store. They got a movie that filled the time before heading off to the hospital just perfect. Once at the hospital, she was in a great mood. She never once said she was thirsty or hungry so we didn't have to deal with that. While we waited I kept pulling new toys out for her to play with. The night before I went out and got some new coloring books, books, silly putty, and other little trinkets to keep her occupied. Right on time (3:30) the anesthesiologist (one of our favorites, as we had requested) came to get her. Riley told her she didn't want any sleep medicine to which the Dr. said o.k. The Dr. then asked her if she knew how to blow up a balloon because she had a blue balloon that needed to be blown up. Riley was very excited about that and had lots of fun riding down to the MRI room in her "crib." She was very playful and had no clue what was about to happen, thank God! We got to be with her as she fell asleep and she did great. She tried her hardest to blow up that "balloon" and out she went. About 50 minutes later they wheeled her out and we walked down with them to outpatient recovery. She was coughing quite a bit and had a tough time coming out of it for about 1/2 an hour. She had a I.V. in her foot which really pissed her off so the nurses removed it. That helped a bit. After a while she just rested quietly in my arms. We were home by 5:30 and she was running around singing by 6:00. She ate a wonderful supper and slept all night. She hasn't said a thing about it today...Now we wait...We are scheduled to meet with the Neurologist next Wednesday afternoon to get the results. I'll let you know more after that meeting.
Now for Shelby. She is on extra calcium right now and will be meeting with the Hepatologists (Liver Docs) at Children's Memorial this Tuesday and having an abdominal ultrasound. Hopefully we will find out what's up with her bones and see if her bile ducts are still dilated. We'll see what the game plan is.....
Thanks for your prayers. We could still use them. Especially while waiting for Riley's test results. Thanks everyone - Love, Jenn
Thursday, July 10, 2003 8:28 PM CDT This page has just been created. Please check back for additional updates.
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