New Photo Album September 25
There are some great photos in a new “Baby Grace” album in thefacofgrace.com photo gallery, check them out here!
Rett Syndrome 1986 September 15
A fascinating article back from 1986 when Rett Syndrome first hit to US medical books so to speak. (each page will open in a new window using Acrobat Reader, you may need to zoom or magnify to make the articles readable)
Grace of course! September 11
I know it’s been quite a while since I’ve written. That’s not because things haven’t been happening, on the contrary, life just keeps pounding away at us so finding time has become increasingly difficult. Grace is holding her own. She continues to have mysterious “episodes” of what appears to be extreme pain. We have list of theories that we keep chipping away at but so far, no answers. All the Reddington children except for little Lily are in school now. Grace is in a small classroom with four other children who have exceptional needs. Grace’s teacher is fantastic and dedicated and the school staff, particularly Grace’s one on one aide, Beth, are all heaven sent.Â
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Grace’s first day was sort of a disaster. I wasn’t ready to go on the bus with her when it arrived early at my house, so I buckled her into the seat and off went the little yellow school bus with my Grace on it! When I saw the look on Ben’s face who was standing on the front lawn as the bus pulled away and he said he felt bad for her, I couldn’t get ready fast enough and ended up at the school waiting over 30 minutes for the bus to arrive as the tears just kept on flowing. When the bus finally arrived and I saw her face, I couldn’t get her into my arms fast enough and likewise for her. I will be driving her to school from now on.  Â
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I spoke with “Kathy” last night, a seasoned mother of a daughter with Rett Syndrome. Our (more…)