I couldn't wait until Wednesday for this one. We had a genetics appointment yesterday and they want to do a whole genome sequence on our daughter. Not sure how I feel about that, so I will do a post later.
I do have to give myself a big bravo! Genetics wants to consult with a doctor in Seattle that is apparently "one of two" experts in the world on muscle, eye, brain "stuff" and see if he will consult with DD's case. (This also was a little bit of a kick in the gut AND a confirmation that I was looking for...)
Anyway, I had found a research group about 6 weeks ago that happened to be in...wait for it...Seattle! The doctor I was corresponding with was different, but after e-mailing the woman I was corresponding with we found out that both doctors work with the research group THAT I FOUND!
Unfortunately, it's taking longer for them to get the MRI from Children's and Genetics would have been able to send it quicker. I still feel pretty good about my find, even if we would have ended up there eventually!
Re: Genetics-Bravo to myself