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”
Tag: Alex
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.
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”
Ativan to the rescue
Recent visits have been very hit and miss, though Saturday’s was pretty amazing. We got some wonderful pictures of Alex, and a very rare video of him in his big leather rocking chair with his mom — usually she has the camera ready, so it’s nice to actually have proof he’s got a mom and that he loves her. Continue reading “Ativan to the rescue”
Alex’s big move
On the morning of the 21st, Alex moved to his new home, and my wife was able to be there the whole day to help with the transition. From what I hear, it was a decent day, but nothing amazing. Continue reading “Alex’s big move”
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”
Alex is moving away
Not a lot to be said, really. It’s been made very clear that we have no choice in the matter. Alex is moving further from us, which we knew had to happen eventually, but he’s also moving further away from the only useful hospital in the area. They state that they “felt pretty confident” his new hospital will be able to work with the main children’s hospital in Portland in order to reduce the number of times he has to be driven there. Continue reading “Alex is moving away”