CrystalSnow
Earning My Ears
- Joined
- Aug 7, 2009
- Messages
- 46
When the Make A Wish volunteers came (about six months ago), Melia wished to go to Disneyworld...kind of. They actually asked her what she wanted, and she said she wanted to see Pooh. So they tried to prompt her a little and asked where Pooh lives. She looked at them and said, "At Owl's house." So they tried again and asked where Owl's house is. She looked at them like they were dumb and said, "In a tree." Basically, it was like herding cats (she was only 2 1/2), but it was finally decided and the trip was planned for October since we had a new baby coming in April and we wanted her to be a bit older before dragging her across the country. Oh, they also asked her what her favorite color was...she said black. Only my daughter.
Melia was born with a very rare metabolic disorder called Ornithine Transcarbamylase Deficiency. It's a mouthful. And it's an awful disease. Basically, her liver was missing a key enzyme needed to break down protein. Without it the byproducts turn into ammonia, which floods the body and brain and causes lethargy, stupor, seizures, brain damage, and finally coma and death. We were extremely fortunate that we were still in the hospital after her birth when things started downhill. On her third day she was flight-for-lifed to the Children's Hospital where we were very fortunate to have skilled metabolic doctors who started the appropriate treatments quickly. We were able to bring her home after about three weeks. She had special formulas and medications that they hoped would be enough to control it. For some kids (with milder forms of the disease) it can be enough, but it wasn't for Melia. We started out with blood draws every other day to check her ammonia levels, feedings using gram scales and on exact schedules, charts of everything, weight checks, alarms, liver biopsy and endless doctor's appointments, finally getting a mediport, keeping her away from illness, and essentially staring and staring at her, in the hopes that we would see the signs of an episode before it was too late--but it wasn't enough. Her body couldn't do it and she ended up hospitalized several times in her first few months.
That's when we had to come to terms that she would need a liver transplant. We ended up moving temporarily out to the Ronald McDonald House in California while she waited on the list. After three months she received a new liver, and after five months there we were able to come home. Obviously, the story goes on...but this is probably a long enough introduction.
It has been great to read through the boards, get so much info, and follow so many touching stories. Hugs to all of you and your little ones.
Melia was born with a very rare metabolic disorder called Ornithine Transcarbamylase Deficiency. It's a mouthful. And it's an awful disease. Basically, her liver was missing a key enzyme needed to break down protein. Without it the byproducts turn into ammonia, which floods the body and brain and causes lethargy, stupor, seizures, brain damage, and finally coma and death. We were extremely fortunate that we were still in the hospital after her birth when things started downhill. On her third day she was flight-for-lifed to the Children's Hospital where we were very fortunate to have skilled metabolic doctors who started the appropriate treatments quickly. We were able to bring her home after about three weeks. She had special formulas and medications that they hoped would be enough to control it. For some kids (with milder forms of the disease) it can be enough, but it wasn't for Melia. We started out with blood draws every other day to check her ammonia levels, feedings using gram scales and on exact schedules, charts of everything, weight checks, alarms, liver biopsy and endless doctor's appointments, finally getting a mediport, keeping her away from illness, and essentially staring and staring at her, in the hopes that we would see the signs of an episode before it was too late--but it wasn't enough. Her body couldn't do it and she ended up hospitalized several times in her first few months.
That's when we had to come to terms that she would need a liver transplant. We ended up moving temporarily out to the Ronald McDonald House in California while she waited on the list. After three months she received a new liver, and after five months there we were able to come home. Obviously, the story goes on...but this is probably a long enough introduction.
It has been great to read through the boards, get so much info, and follow so many touching stories. Hugs to all of you and your little ones.
Your kids are adorable. I just love their original names. I tried to give my kids original names but suddenly I am seeing lots of boys with the name liam and girls named Mia. As for Aidan, it was the top boy name for the year he was born.
