Wednesday, May 3, 2017

summer 2017

Katie only has a few weeks of school left and usually I have a summer program for her to attend but not this year.  I am envisioning a summer of days without showers and make-up for me 😟.  I am going to work on things with her and be a "home-schooler" for the summer.  Ugh!  This does not make me happy. That's probably a terrible thing to say but she loves being with other kids so much she'll probably resent me! lol! We have a few vacations so that will break it up, but I foresee a looooooong summer.

I checked into a few summer camps but the few I thought might work don't have a good ratio of aides to kids, and they go to movies and one has a splash pad - Katie doesn't do well in movies (too loud and she gets scared easy) and needs constant supervision at a splash pad - plus those gross me out and when we go she gets a shower immediately.  I can't believe I see parents at those who are blabbing with their friends and don't watch their children and then the kid is drinking the water out of it. 😣

So, no segue here but on another note, the scientist at Northwestern University who is an expert on her rare mutation applied twice for grants from the NIH and got denied. I think one of the reasons was that Katie is so unique the $250,000 he applied for would only benefit her, for now anyway. Maybe they like to put the money towards helping bigger groups of people. So this just plain sucks. I know he may be able to get grants from other places but a lot of her stuff (like using her skin sample for different experiments) is put on hold for now.  And he is trying to get a mouse with her same mutation but that is not going well either.

She is doing well though. A joy as usual and growing a little bit taller this year. I'm sure it will be a good summer. The pool will probably get a lot of use!  Maybe I'll consider that my shower.

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