Recently, our visits have taken a slight turn for the better. On Saturday the 2nd, Alex was driven to our home and had a pretty awful day, but on the 3rd we visited him with his cousin and grandmother, and while the visit started off pretty rocky, he ended up having a pretty good day for once. Continue reading “Visitation updates for July and other fun stuff”
Category: Alex
Bad visit; light at the end of the tunnel
Saturday was a pretty bad visit again. Alex was driven to our home and we had him picked up just two hours after his arrival. It wasn’t as bad as last weekend in terms of general self-abuse, but there wasn’t much happy time, and there was quite a bit of anxiety in Alex. Continue reading “Bad visit; light at the end of the tunnel”
No news isn’t always good news
It’s been kind of a rough patch lately. We’ve had some great visits and some awful visit since my last post, and recently even got to go to the beach with Alex (his home staff drove the kids to the coast and we met them there). Today’s was one of the worst in a while. He was hurting himself at least once every five or ten minutes. It started out with him angry, had some ups and downs, and ultimately ended with him angry. His face was beet-red from all the hitting he’d been doing. We lasted two hours before I just couldn’t keep watching it. Continue reading “No news isn’t always good news”
Another bad day
Today was definitely a lot different than last weekend. We had to watch Alex beating himself up, bite, scream, and generally have a rough time. And every time it seemed we’d figured out what he needed to be happy, it turned out to be a short-term solution. The shower helped… for about half an hour. Food helped for a few minutes. Water helped for a few minutes.
To be fair, we got about a 50/50 mix of happy and sad today, but we ended with Alex very unhappy. Ending on a bad note means he probably continued to be unhappy after we left, and the fact that he started out so happy makes it feel as though we failed him in some way we just couldn’t manage to figure out. Continue reading “Another bad day”
Finally
First really good visit in weeks. We spent just under three hours with Alex, and he was happy the whole time. Not just content, but happy, playful, and interested in his surroundings. Continue reading “Finally”
Two bad visits in a row
Friday the 15th, Alex’s grandmother (my mother), came up to visit the family and got to see Alex at his home, but he was in a fairly bad mood for the whole visit. We only spent an hour there, and he never really got happy during that time.
Today, Alex was driven up to see us, and we were very relieved to see that he was in a great mood. But within about an hour, he was unhappy, and an hour after it started, he was so difficult to manage that we had to cut the visit short and have him driven back home.
We had a great visit on the 13th, and the first hour today was really amazing, but his mood swings lately are really tough, especially with how great he had been doing just a few weeks ago.
Why giving hash early is the right approach
This past Saturday, Alex was driven up to visit us, and most of the visit was great, but there were a few incredible outbursts when we took him for a drive to Arby’s. He was doing so well we figured it would be fun to drive there and get him a little sandwich, and then take him to a playground. But seemingly out of the blue, he turned very violent. He was hitting, biting, headbutting, kicking, and refused to stay in his seatbelt. We started driving back home and he started to calm down some. Seeing this, we decided to risk the trip to the playground, and things went pretty well there for a little bit. He ate his sandwich and was mostly content for a while, but after a bit he started to seem a little anxious about something. We got him back in the car, but this time his rage was explosive. I got hit and headbutted a lot trying to keep him in his seatbelt, and he beat himself up quite badly. Continue reading “Why giving hash early is the right approach”
“The event” is done.
I really can’t go into details, but my sister insisted I at least make those in the know aware of where we’re at now.
My wife and I had a very stressful and emotional day. We didn’t know what to expect, and to be fair, we still don’t. The event is done. We did the thing that had the stuff and whatnot. At the end, we visited Alex, who was pretty darn happy. Continue reading ““The event” is done.”
Oops
We made a mistake and told too many people about a situation we meant to keep a bit more “secret” for a while. It’s probably not a big deal, but we should have mentioned to those people not to go crazy until we had more information. If you don’t know what I’m talking about, ignore this. If you do, shame on you for not reading our minds! Seriously, though, we didn’t think to tell you not to share our story, and it’s amazing the amount of support we’re seeing. I know it’s become a cliche, but we cannot express how much we appreciate your support. Continue reading “Oops”
Addendum – March 2011
Well, today we had Alex over for a visit to our home, and I have to say it was amazing. It makes up for all the difficulties we’ve seen this month. He was happy, playful, talkative, and very attentive and focused. We successfully gave him the hash this visit, but from the staff caring for him it sounds like he’s actually been like this for a few days now.
As much as I’d like to see prohibition die, I’d give up the entire cause if Alex is getting better through some other means. I really hope the Sirolimus is part of the reason things are going so well, because that would mean a medication he’s allowed to use is finally making a difference. I really do want to see more medical research for marijuana, especially given how much it helped Alex (and it still could reduce his need for other dangerous medications), but seeing my baby do better is far more important than anything else.