This has been a pretty awful month. It started with a really great trip to Disneyland with our youngest – the first real family vacation we’ve ever had. It’s hard to call it a “family” vacation without Alex being a part of it, but even so, it was a really wonderful trip. I just wish that enjoying the trip didn’t make me feel so guilty.
After the trip, though, things went downhill for Alex. He’s had two extremely rough visits in a row. Of the three hours we were there last Saturday, he was happy for maybe twenty minutes, and raging for at least 45 minutes total. His arms were rough and bruised from biting himself so much, and he’s just looking miserable. To top it all off, we can’t get him to eat the hash anymore. The one time during his week when he could get some relief, and now he won’t take it. I don’t know what to try, but I feel like once again better information would help. There are so many things you can do with cannabis, there must be something else we can try.
It’s been tough to get around to writing here lately. With this new facility, Alex’s behaviors seem to have gotten worse. He’s about as bruised as he was when we had to get the state to intervene, and from the reports we’re reading, it sounds like he has some incredibly bad days still.
I was really hoping the Sirolimus would help his behavior, but so far this doesn’t seem to be the case. It’s hard to hold out much hope for anything anymore, which makes it very hard to write.
Here’s hoping this Saturday goes a bit better.