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 get that up to three times a week on average. Unfortunately, with everything still pretty busy, I have been forgetting to give him his tincture, and I suspect that’s part of why the last few visits have ended badly. When we were further from him, but remembering the tincture every visit, it seemed to be doing a great job of turning around bad visits within thirty minutes or so. Continue reading “Some Alex updates finally”

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 too far to visit more than once a week. Yesterday was one of those visits, and Alex was just amazing. Continue reading “Yesterday was really nice”

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 order to get Alex to be stable for a four-hour visit: we dissolved it into olive oil. Continue reading “Thanksgiving update, rapamune success maybe”

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 pharmaceuticals that can do some amazing good for the kid. We’ve been wanting to try it a while, and the growth in his brain is enough to justify it finally — either we try this medication or we get started down the road of brain surgery. Continue reading “The new medication”