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. He hurt himself a little bit, unfortunately, but it was pretty mild overall, and he was mostly just full of smiles and giggles. In fact, it was only when we got the camera out that he really got upset — I’m not sure if the camera is making some kind of weird sound I can’t hear, or if he’s unhappy that it takes some attention away from him, but it definitely made him mad when we tried to get some video. This isn’t the first time the camera has caused a reaction, and putting it away almost immediately made him happier, so that’s something to keep in mind for future visits. It does seem safe to have it out when it’s not so close to him, so maybe it is some kind of aggravating sound….

Anyway, the overall visit was really good. It was nice to see Alex in the evening without some kind of self-injury going on. Maybe the Rapamune is working, maybe it was just a fluke. Either way, it was nice to have a visit where Alex was in a great mood without seeming to be “out of it”. We didn’t even bother with the hash / olive-oil concoction because he just didn’t seem to need it. (Don’t get me wrong, I’m still all about cannabis over his other meds, but if he can’t get it regularly enough to stop his dangerous meds, I’m not going to add it to his mix unnecessarily)

I hope this is a long-lasting happiness. It would be great to visit him in his new place and see smiles every visit. It wouldn’t make up for the distance from us or the painful trips to Portland he’ll have to make, but it would help.

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2 Responses to Yesterday was really nice

  1. sharon cohen says:

    Sounds like things are still a roller coaster…sorry to hear about the move …and the fact that $ again plays a big factor in choice of care. hope the new meds help enough to really make progress in Alex’s life…take care..are you still by Portland

  2. Dad says:

    Sorry for the delay. Definitely a major roller coaster, I should write an update, but things have been busy. Alex is in his new place and one visit was horrible, but the next was amazingly happy. Wish he’d be consistently happy, but I’ll take what I can get.

    We’re a ways away from Portland right now – that’s just where his health care is, so we’d like him to eventually go there.