Monday, March 23, 2009

VX-770 clinical study

Here is a link to the study done on Gavin's mutation of CF. I noticed today that they now have an entire page dedicated to this study with all sorts of FAQs. The mutation he has is called G551D (that is just one of his mutated genes but thats all he needs for this potential med to hopefully work!) As I stated before, he has the 2nd most common type of CF but that is still only 3-4 percent of the entire CF population. So as much of a bummer it is that Gavin has this yucky disease, we are SO lucky to be in this small category that has so much research going on!

Another happy note...we got to see the Stanley Cup today. Casey's family friend Sean Podein played for the Colorado Avalanche (a NHL team for all of you that don't follow hockey) when they won the Stanley Cup Finals and he brought the trophy to the St. Louis Park Rec Center. It was pretty cool to see! We thought about kissing the cup, but then I saw about a dozen other people kiss it before me, and the idea didn't sound so appealing anymore, gross! We ended up putting Gavin IN the cup! It was so funny!

We will be visiting our CF center again on Thursday. Hopefully it is uneventful because that means things are still going well! Cross your fingers that Gavin has been gaining enough weight! He is already wearing 3 month sized clothes (sigh) and he doesn't look like a newborn anymore.

Keep praying for us!!!

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