Sunday, May 16, 2010
Genetics Testing is in
Sorry the blog is not updated as well anymore. I have to say it was a lot easier to update while we were still in the hospital. Although we are very busy and much more worry now...we love having our little boy home. The genetics tests came back this week. Good news first...he does not have Costello's syndrome which cardiology was thinking that the most likely cause of his cardiomyopathy. We are so excited to not have that syndrome. And the not as good news...he does have a syndrome. It is a very rare syndrome called Leopard's Syndrome. There is not a whole lot know about this syndrome because it is so rare. We will be meeting with cardiology next week and genetics next month to find out more information. The syndrome itself is not life threatening, but his cardiomyopathy is our biggest worry. We know he is a fighter and he can make it through this. Brayden got these new books for Easter and one is "Who would win: Lion vs. Tiger," well, of course, the Lion was victorious over the tiger and Brayden says that a Lion can also beat a Leopard because a Leopard is a lot like a tiger. So we know our Lion can beat this...he is amazing.