It took us along time to decide to have another baby. We felt very lucky to have Amanda. But there had always been that aching feeling of wanting another baby so Amanda would have a brother or sister.
Well the summer of 96 came around and we finally decided to take the chance and get pregnant. We had such high hopes that everything would be OK.
Well I had lots of sonograms and also had linkage Analysis testing done at the Univ. of Alabama to find out if she had ARPKD. I had an amnio around 16weeks and they called us around 5 to 6 weeks later telling us that she had ARPKD. The ultrasounds were still not showing any cysts and it gave us hope that maybe the genetic studies were wrong. They were not wrong though. Around 33 weeks the doctor started noticing that my amniotic fluid was lower than normal and at 35 weeks he saw the cysts on her kidneys.
They sent us to Stanford for a second opinion the next day and they confirmed the diagnosis. We were obviously very upset at this point. We just figured she would die like Lil Paul, because we did not know that some children do survive this horrible disease.
It came time to deliver her and she came out crying it was music to our ears. I can’t even tell you the shock we were both in. Well she did have trouble breathing so the had to put her on the breathing machine but only for 24 hours. She was a very strong little one and still is. Alyssa was hospitalized for nine days after her birth just to stabilize her and make sure she was eating enough.
The time came to bring her home oh the feeling of joy we had because we did not ever expect to be able to keep her and bring her home and raise her like a normal child. And this is what we were told to take her home and treat her like you would any other child.
Alyssa does suffer from high blood pressure, and she will be facing a kidney transplant in about one to two years but overall she is a happy two year old running around the house throwing fits and getting in to everything she can.
Alyssa just got a G-tube on April 16, 1999. She is adjusting very well to it. We have an appointment on May 14 to see the transplant team to start the process of seeing if we can donate one of our kidneys to her. We are nervous about it. But I know things will work out.
Update October 1st, 1999
Alyssa did get her G-tube and it has really been great. She has gained some weight, but being that her kidneys are just getting worse all the time she is just not growing like she should no matter how many extra calories we get her to take in.
We have finished the Transplant testing and I am going to give her one of my kidneys. We are looking at doing the Transplant before the end of the year. I will keep you updated as soon as I know more. Thanks.
mail to Smallchief@prodigy.net
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