Wednesday, October 24, 2012


I found out tonight that Bryce's entire genome, which has been sequenced, was one of the 10 that were picked up from San Diego this week and brought here to TGen in Phoenix to be analyzed.  What that means is that within 6 months, we could have some answers!  This is what we have been waiting for!

I have been asked to be on the parent advisory committee for the new Center for Rare Childhood Disorders.  Tonight Denise Hauer and I attended the first meeting. Here I met and talked with the scientists who will be doing the analyzing.  I'll keep you posted!

Watch this amazing video to see what our wonderful neurologist, Dr. Narayanan, and TGen are doing to help children with rare diseases.  I am so excited to be a part of this team.

Today when Annalise was eating her lunch, I handed her cup of milk to her and ask if she wanted a drink.  She instantly lifted her dress, stuck the straw to her belly, and said, "I'm drinking it from the tube in my tummy."

She then gave her butterfly a drink through his tummy as well. 

We are working hard to keep Annalise from needing a tube in her tummy, but if she ever does need one, she will know exactly how to use it!  

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