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”
Thanksgiving update, rapamune success maybe
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”
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”
Prop 19 is about freedom, not nurses getting high and killing us all
This scare tactic is pissing me off a lot. Prop 19 is way too important to let idiots with pretty lies and a hidden agenda foul it up. Continue reading “Prop 19 is about freedom, not nurses getting high and killing us all”
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 Marinol Myth – or – How To Lie To America
“Medical marijuana already exists. It’s called Marinol.”
(Excerpt from the DEA’s marinol page ) Continue reading “The Marinol Myth – or – How To Lie To America”