Tag Archives: rapamune

Some Alex updates finally

Alex is up and down, as usual, though he had been doing really well from mid-June until about last week. We’re starting to get settled in, and finding time to visit him at least twice a week. Hopefully we can … Continue reading

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Yesterday was really nice

We visited Alex yesterday. Since we know our days our numbered, we figure we can afford the extra gas that comes with visiting a lot again, so we’re going to try to get in a lot of visiting before he’s … Continue reading

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Thanksgiving update, rapamune success maybe

Alex had an incredible Thanksgiving. My whole family came up to visit for part of the weekend, and it was really nice to see everybody, but the real reward was when we tried a new trick with the hash in … Continue reading

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The new medication

Last Monday, Alex started on Rapamune finally. It’s a wonderful but horrible medication for Alex. In terms of risks and side-effects, it scares the hell out of me, but for Alex’s situation (TSC and autism), it’s one of the few … Continue reading

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