Here is a picture of Jordyn's actual chromosomes. I thought it was pretty interesting to see. We have received all the results of Jordyn's recent testing... including the final two tests for Rett Syndrome. All of the tests were normal!
I was not really surprised at all since that is the only results we have ever heard. The doctors keep telling us that she probably has a syndrome or genetic disease that they just don't know how to test for yet. I was thinking the other day that it would be pretty interesting if Jordyn was one of the first kids to ever have a "certain" disease or syndrome. And then I thought, they usually name the disease after the first person to have it, or the person who discovers it. So maybe Jordyn could have a sydrome/disease named after her. Tom and I were thinking of possible names and we came up with: Cute-itis, Cutest girl in the world Syndrome, or Cutie Pie Syndrome.
We also went to the neurologist on Friday for a check-up and to hopefully find a cause for Jordyn's recent irritability. It worked out well because Jordyn got very angry while we were there... so at least the doc. could see what we were talking about! I had to laugh because he said,"She is definately on the "high" end of irritibility!" I never thought I would be HAPPY that my child threw a fit at the doctor's office. Anyways, he wants to try an acid reflux medication first. And if that doesn't work then he said we could change her dose of medication or even try a new kind. We are anxious to see if any of these solutions will work.
We were at the mall the other day and we saw another young girl in a wheelchair. It's funny how excited we can get when we see other kids in wheelchairs... it really doesn't happen that often. I always want to run over and talk to them and ask them all sorts of questions. But, I usually never do! They are probably wanting to do the same to us. I actually like it when people stop and ask us questions. While we were at the mall, a lady stopped and talked to us for while... she said her neice or nephew had Cerebral Palsy. And the other day a lady stopped me in Walmart and said her 11 yr. old. daughter had the same wheelchair and asked me a few other questions. It's always good to hear that there are other people with disabled kids out there... even if you don't see them very often.
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I vote for Cutie Pie Syndrome. Most health problems that have names have rather severe-sounding ones. I watched a Discovery Health program about children that have a disease called Harlequin Ichthyosis, or Harlequin Disease. Their bodies produce too much skin and they look (and apparently feel) like persons who have had severe burns. There are so very many strange-sounding things that can afflict children and adults. I greatly respect and admire those who deal with these challenges. You and Tom and Jordyn and real troopers. And Evan will be too when he figures this all out.
What a fun post. Jordyn is definitely a cutie pie, alright!
Love the picture of Jordyn's chromosomes! We are very glad she doesn't have Rett's Syndrome, but as with alot of neurological disorders, we all would like there to be a solution to Jordyn's problems. In this realm of the medical world there is still so much research left to be done and answers to be found. We love you, Jordyn, and pray for you each day.
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