Sunday, March 13, 2011

MIND Institute

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Friday night, we had an interesting late-night call! Around 10:30 PM, my phone rang with an out-of-state number. I assumed it was a wrong number given the time of night, but turns out Louise from the MIND Institute was returning my email with a call.

I was able to call her right back, and we talked for about a half hour. It essentially boiled down to a couple things. First, they definitely would like to see not just Ayden, but also myself and Issac. Second, they are very interested in seeing us because of the 'family pedigree' as she called it. Studying how FXS moves through families is of a great deal of importance to them.

The end result, we put ourselves on the waiting list. (It's pretty long of course) We need to contact them again in three weeks to find out who our scheduler/coordinator will be, and then take it from there. In my head, I'm thinking at least fall before we would go if we do end up going. They are really interested in children around the age of 2 that are carriers (and control subjects), so Issac may get us in a bit more quickly than 'normal'. We would have to have him tested first, but we figure we'll talk about it when we know more and decide then. Issac is not yet showing any signs of having FXS at all at 23 months.

I'm very happy things seem to be falling into place for us. I feel a bit overwhelmed right now with all the "new" things we can do for Ayden and am SO excited to move forward getting him all the help we can.

1 comment:

  1. Yay! I knew you would...they are, by all accounts, amazing, wonderful, awesome people to work with. I hope you are able to get in sooner than normal :-)