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Who is Alex?
Alex suffers from Tuberous Sclerosis, seizures, Autism, and very severe self-injurious behaviors. He hurts himself so badly that he can't live with us anymore. After the heartbreak of placing him outside the home, now we're having to fight an uphill battle for the medicine that may actually help him.Read his overview or in-depth introduction.
Tag Archives: update
A happy Alex, yet another interview, and other updates
First, since surgery, Alex has been doing really well. This should not be the case from everything we’ve learned about the SEGA (the growth in his brain they removed), but we’re not going to complain. We’ve been told by doctors … Continue reading
We’re finally back home
We visited Alex on the way back from the grower, and he was doing pretty well, though he needs to be wrapped up, and is definitely wanting to do more running than he’s allowed to. The surgery definitely hasn’t slowed … Continue reading
Alex post-surgery updates… and more!
It’s been suggested we keep the blog going as well as the facebook page, since a lot of people won’t follow the Facebook stuff, so I’m going to try and put up the longer updates and such here.
Moving to Facebook… maybe….
The interview is definitely going to air. We’ve even been contacted by somebody who saw a trailer for the interview. It was suggested that we put Alex’s story up on Facebook since it’s more visible there (and easier for us … Continue reading
Boy, when it rains…
In the past month I’ve missed something like 6 days due to various medical situations. First my father got incredibly sick and I actually expected I was going to be attending a funeral. Then my wife, kids, and I all … Continue reading
Losing motivation
There’s still not a lot to say. Alex hasn’t been doing too great lately, and even when he’s in a good mood he has to be wrapped up in a blanket or something that can similarly restrict his hands, otherwise … Continue reading
Some Alex updates finally
Alex is up and down, as usual, though he had been doing really well from mid-June until about last week. We’re starting to get settled in, and finding time to visit him at least twice a week. Hopefully we can … Continue reading
We’ve moved!
It’s been a long time since an update, primarily because of the move. We’re now about a twenty-minute drive from Alex, so we can see him throughout the week instead of only on weekends. Of course with all the craziness … Continue reading
No, I haven’t disappeared
My 4×10 schedule was a bust, Alex has been very up-and-down, and generally there’s been just a ton of chaos, especially with the new baby. There’s also just not a lot to say at this point. I still have no … Continue reading
September updates – some amazing visits
I was hoping to make a real effort to get updates with video, but I’m finding this is a lot more pain than I expected. The amount of video we have is enormous just from the past month, so I’ve … Continue reading