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, Canada.I was almost ready to explode by the end of the first day of the conference because I did not get to speak until the next day.The Doctors were saying the same things your trading one medical problem for another. When it was my turn to get up and tell my story,I mentioned that one of them should take a Urea cycle kid home for a week and then come back and tell me if this was fair to ask anyone to live like that for years,its not, its cruel to the whole family.The day these kids are born you become a nurse,a chemist,a dietician and a number of other professions that you never trained for. I was only supposed to speak for 20 minutes and I ended up being up there for 2 hours,I hope I made a difference in the professionals opinions,They were from all over North America.I do have to say though that McKaylas metabolic docs were amazing, and thats who asked me to speak at the conference,they were always there for us and felt many of the pains we felt.
All the kids in Edmonton have now been transplanted well there were only 4 but that makes my heart soar.McKayla was a non-verbal 6 year old who had seizures,high ammonias, ataxia.Her hair fell out every couple of months her balance was awful she was in perpetual motion always,she never slept. Since transplant,McKayla's seizures stopped,she never stops talking ha ha ever she is talking right now as I am typing.Her hair is beautiful and long and thick.Her balance is great and I have a funny ,beautiful daughter.I look back at our life with the Urea cycle disorder and all I can say is hell on earth.As your going through it you don't realise how awful it is until its over.Life is beautiful, McKayla is thriving although she has delays(big deal compared to the alternative).
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
Good Joe cause this site changed our life! 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... more
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
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
Life After Transplant Jodi Phelan,Fri Oct 29 9:42pm
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