So Ian's PELD is a 12. It is labor day weekend. Holidays always make me nervous as they are big transplant times--more people travel=more accidents=more donor organs. I never thought of it that way until our coordinator told us.
This time of year (in about 2 days) will mark the three year anniversary of Ian's liver disease diagnosis. I will NEVER forget the phone call telling us to go to the ER immediately, etc. I will NEVER forget just breaking down and crying helplessly with Brett in the hospital bridge after the offical diagnosis and outlook was described to us. That day has been the absolute lowest of all my days and I hope I never have to relive anything like it and never would wish anything like that on anyone.
Ian continues to grow and develop wonderfully. He is into Thomas the Train right now and just earned Herold the Helicopter for making good choices for a week. He is working on earning another engine, likely Henry, for another week of good choices.
We meet with our new specialist on Tuesday and hope that he is as caring and concerned about Ian as our former specialist, Dr. Cordle in Roanoke. We have been really blessed with a great medical team that help Ian to be so stable.
Sunday, August 31, 2008
Friday, August 15, 2008
Ian's Update
So this blog is planned to be all about Ian and his health updates. Ian is currently awaiting liver transplant as he has biliary atresia. He is doing so well and continues to defy the odds. We have been waiting since November of 2005 at this point. The transplant team at CHOA have joked with us asking if he has had a secret transplant that they don't know about.
Ian had labs today and was an absolute champ! He held out his arm, didn't flinch or even cry during hte whole thing. It was the first time we had them done here in South Carolina and we went to MUSC at the pediatric laboratory. We will find out results soon.
He is still on seven medications which is down from previous numbers so we are thrilled. He is able to take a chewable multivitamin now. We recently changed the formulation of one of his meds and that is not going so well--I'm hiding it in his yogurt now and it is better. What would I do without yogurt. He now gets all but 2 meds in morning yogurt. Yogurt is loaded with protein and has good calories behind it. We go through about 3 jumbo tubs (with just ian eating it) a week.
Ian is potty trained now and likes to sport his Thomas the Train undies. He got a train table as his big potty training reward :) His favorite engine changes around but usuals in the listing are Thomas, Gordon, Toby and Percy. He likes to quote lines from the two Thomas DVDs that we have and is very excited if the library has a new one for us to check out.
Ian will be a big brother in about 8 weeks and is my helper getting hte nursery ready. He has discovered his old baby toys and books and is actually playing with them for extended periods of time while I sort clothes, etc. He is a great helper.
Someone today in Publix stopped me and asked if Ian was juandiced and I replied that he was and was awaiting a liver transplant. This was the first inquiry in South Carolina. I had lots of that in Virginia when he was just a small baby asking me if he wore make-up, why he was so yellow, etc. It always amazes me what people will ask or say and has really taught me to be much more aware of issues.
We head to CHOA in September to the wonderful land of "the butterfly hospital". Ian loves the butterfly decor in CHOA and is especially fond of Dr. Romero there, the head pediatric gastroenterologist. Dr. Romero is wonderful--caring and on top of Ian's health needs.
My goal is to try to update this page bi-weekly at least so check back often with the latest news on Ian.
Ian had labs today and was an absolute champ! He held out his arm, didn't flinch or even cry during hte whole thing. It was the first time we had them done here in South Carolina and we went to MUSC at the pediatric laboratory. We will find out results soon.
He is still on seven medications which is down from previous numbers so we are thrilled. He is able to take a chewable multivitamin now. We recently changed the formulation of one of his meds and that is not going so well--I'm hiding it in his yogurt now and it is better. What would I do without yogurt. He now gets all but 2 meds in morning yogurt. Yogurt is loaded with protein and has good calories behind it. We go through about 3 jumbo tubs (with just ian eating it) a week.
Ian is potty trained now and likes to sport his Thomas the Train undies. He got a train table as his big potty training reward :) His favorite engine changes around but usuals in the listing are Thomas, Gordon, Toby and Percy. He likes to quote lines from the two Thomas DVDs that we have and is very excited if the library has a new one for us to check out.
Ian will be a big brother in about 8 weeks and is my helper getting hte nursery ready. He has discovered his old baby toys and books and is actually playing with them for extended periods of time while I sort clothes, etc. He is a great helper.
Someone today in Publix stopped me and asked if Ian was juandiced and I replied that he was and was awaiting a liver transplant. This was the first inquiry in South Carolina. I had lots of that in Virginia when he was just a small baby asking me if he wore make-up, why he was so yellow, etc. It always amazes me what people will ask or say and has really taught me to be much more aware of issues.
We head to CHOA in September to the wonderful land of "the butterfly hospital". Ian loves the butterfly decor in CHOA and is especially fond of Dr. Romero there, the head pediatric gastroenterologist. Dr. Romero is wonderful--caring and on top of Ian's health needs.
My goal is to try to update this page bi-weekly at least so check back often with the latest news on Ian.
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