I am glad it is true I remember the very day I found this site. I said I am thinking about transplant,and I got the response whats to think about and at that very minute I knew it was going to happen.I still get calls from all over and I have spoke to Kelly many times and other parents and the first place I direct them to is here where all the experts are! Yes it would be good to have a presence on facebook for sure.I think the first time I posted here was 8 years ago!!
Hello! It's been a long time since I've posted out here. Life always gets the better of us! I've had 4 children born with citrullinemia. We lost one, the other 3 have all had liver transplants. yes,... more
Oh Amy,I am praying that things will improve. That statement speaks volumes to any parent considering it after all you have had to deal with.If it was not for this web site I dont think McKayla would ... more
Jodi. . .you made my day! I keep wondering if I should migrate this 10 year old site over to Facebook - but I sure like the discussion board here. Maybe I should create a presence over there but... more
Absolutely go to Facebook!! I think you may be able to reach more people there! I agree with Jodi, this site has made a difference - I may not always respond to posts, but I read them all and have... more
Re: Life after transplant — Jodi Phelan,Fri Oct 29 9:28pm
Amy, I'm hoping that your little boy gets better, alot of prayers and support help! I have talked to or gi dr in Philadelphia she told me to talk to my daughters metabolic drs about my decision of a... more
Kelly, Pub Med has lots of good research. Also, you can befriend the ASA Kids group on facebook and ask parents questions. I'm assuming you've already been to nucdf.org - thank God for them! - Joe
I have contacted NUCDF since Alysa was born they have been so helpful, now facebook is hard bc I don't know where to look for parents, I found a few from other parents but if you know any please let... more
God Bless you Amy. Losing a child and another stuck in the ICU after his transplant. My son Justin has had his fair share of complications - including time in critical care (the only place where care ... more
My daughter Katy is the exception to the rule on transplantation. She is 14 and 1/2 years post liver transplant and has never had a rejection episode nor has she ever been in the hospital since she... more
McKayla as well she is 13 and Transplanted January 5,2004 and has never returned to the hospital she only spent 12 days in and I spent 7. I was asked to go and speak at a conference in Vancouver,... more
I love reading these stories about Katy and McKayla. I know Justin has had an infinitely better life than the trajectory he was on before his transplant. Before TRUE Kids existed - the Ping and... more