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”
Tag: Alex
Fewer visits means better visits?
Ever since Alex stopped seeming comfortable with visits to our home, we’ve just taken to visiting him. But as much as we need to see him, we can’t see him as often as we have been. We’re down to twice a week now, and while I don’t like seeing him so little, I can tell I’m a lot less stressed out because of it. Trying for 3-4 visits a week was taking a lot out of me, I guess, especially since most of the in-home visits were so awful. Continue reading “Fewer visits means better visits?”
For Alex, the fight is over
I don’t believe marijuana reform will happen in time to benefit Alex. Prop 19 was an amazing initiative that proved that the country is ready to take cannabis a whole lot more seriously, but without the “yes” votes this year, I don’t imagine the fight will go very far for a while. The U.S. government is already adding to the lies, Continue reading “For Alex, the fight is over”
Our home is no longer Alex’s
This is mostly just me whining tonight. No agenda, no real updates to speak of. Alex’s situation is more or less the same as it’s been for a while now, and I’m mostly just waiting to see how prop 19 does before I’ll have much else to say about the bigger picture. Continue reading “Our home is no longer Alex’s”
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”
The hash and the fat
Well, we processed the harvest and ended up with a surprisingly small amount of hash. It’s enough to give Alex probably 100 doses, so I can’t really complain, but it was a lot less than I expected, considering how much bud and really good shake we started with. Turns out I probably made the hash incorrectly. Continue reading “The hash and the fat”
Mid-September Update
A lot has been going on lately and not much time to write. Alex’s mood has been very erratic, and we can’t really figure out how to explain it, so it’s just another mystery. He’s on allergy meds now, so we can’t blame seasonal allergies this time (though maybe he has extreme allergies, who knows). His list of medications is pretty long now — we requested a print-out of it just Sunday — and we don’t really like the idea, but we’re considering trying Haldol again. We’re also going to have to push hard on Rapamycin when we see his neurologist in a couple weeks or so. We hate all the medicating, but there doesn’t seem to be any option for getting hash. We will keep giving it as we can, but until we can get real legal help, we’re just stuck. Continue reading “Mid-September Update”
At least we know the hash isn’t hurting him….
We hadn’t been able to give Alex hash (we can’t do it on the premises of the facility, so it’s a tricky problem when he’s too angry to take anywhere), and his mood was improving. We’re not the kind of people to say it’s a miracle cure-all medicine, so naturally we had to consider the possibility that the cannabis was in fact making Alex agitated somehow, even though past experience showed otherwise. People change, reactions to different drugs change, etc. But after this past week, we saw some things that convinced us it wasn’t the hash. Continue reading “At least we know the hash isn’t hurting him….”
Wow, what a visit!
Today’s visit was far better than usual. In fact, it was one of the happiest for him since he’s left home. He was running around and smiling and giggly and I have no pictures or videos to show for it! Continue reading “Wow, what a visit!”
It’s a roller coaster still
Tuesday was good for Alex, it seems. We didn’t try to take him anywhere, just visited his home and spent time walking around outside with him. He had a few episodes where he hit himself or rubbed really hard at his head, but overall he was content. Not as happy as I’d like, but significantly better than Sunday. Continue reading “It’s a roller coaster still”