found this. forgot I'd started a blog over 7, SEVEN, years ago mainly to do with Emily and rett syndrome....obviously blogging is not something I'm particularly good at...ahem
Lot of things have happened in those years, Emily was joined by her Brother Oscar...who will be 7 in a few weeks.
We still live with rett, obviously, no signs of cure or improvements yet, though some research is heading in the right direction.
Emily is still mobile, which is great. She still can't speak but we have a eyegaze computer that she is learning to use.
Health wise she is doing great. Recent ecg,eeg have all been ok. She eats well and is still a cheeky bugger at times.
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