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Umma | March 9, 2010
This search string comes up in my stats over and over again.
For me, life with Fragile X is full of worry, uncertainty, anger, exhaustion and grief. It is also full of laughter, amazement, joy, gratitude, wonder and, most of all, incalculable love.
Umma | March 9, 2010
Monkey has been saying “shoe-ah-nee” for a while. He uses it very purposefully. He will repeat it for us several times when we tell him we don’t understand and then he’ll give up. Tonight, I FINALLY figured out what he is saying!!!!!
Any guesses what “shoe-ah-nee” means? I’ll put it below the cut.
Umma | March 8, 2010
The trains were running way off schedule. They were crowded to the point that my toes were stepped on repeatedly. Someone was leaning really hard into my back, my purse was in the way no matter where I put it and then one of my fellow passengers began hallucinating. Whatever it was that he was battling required [...]
Umma | March 7, 2010
For most of Monkey’s life I could tell you at any given time how many signs or word approximations that he knew. Once in a while he would surprise us by showing off a bunch of new signs all at once but, in general, the words and signs came on so slowly that we were [...]
Umma | March 5, 2010
We’ve been using the loaner air cushion since last Friday and we’ve definitely seen some improvement in the eating situation! He really enjoys sitting on it, which is great, and we’ve noticed that we’re having to intervene much less often.
He will still overstuff but it’s not every single bite, it’s every 2 or 3 bites. And [...]
