HALLELUJAH for KUVAN

Today we had a quarterly visit at Texas Children's Hospital. And the doctors gave us VERY exciting news. After studying Sophie's food journals which, gets turned in every week and monitoring Sophie's blood levels the past 3 months they told us today that she is a candidate for KUVAN.

They are going to start her on a two week trial run, of 2 pills a day and then see her again and run some test. The goal is to have her in a negative number. Right now we keep her levels between 2 - 6 so it can not cause brain damage... numbers over 6 she is at risk for mental retardation. Negative numbers are what "normal" people are.

So while Kuvan is not a cure all, it would make Sophie able to eat a more "normal" diet and open up her possibilities as far as diet is concerned. One baby in the study even got to eat chicken and responded good while taking the drug.

Dustin and I are ECSTATIC. Up until this point the doctors were telling us Sophie was not a candidate for the program, which was heartbreaking to us. But I think they just don't want to tell you anything to get your hopes up until they are 100% sure.

I will keep you posted on if she is responsive to the drug. Keep your fingers crossed!! KUVAN is what we want!!

Here is a photo of her being such a big girl while she gets her blood pressure taken. OH, Sophie Stats : Height 32" Weight 29 lbs = 100% ADORABLE!