- Why are we doing this? What do we want? Read our Agenda.
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.
Category Archives: Alex
No videos, but a decent visit
We saw Alex this weekend for over three hours, and it was a pretty good visit overall. He had quite a few moments of rage, but none that lasted longer than a few minutes, and none that got as intense … 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
Alex’s sibbing is still a major problem
It’s been about a year and a half since we made the decision to have Alex placed outside the home, and still he has these horrible periods of sibbing (to “sib” means to engage in self-injurious behaviors). We took some … Continue reading
The Portland move
Recently Alex was moved to a home in Portland so he could be closer to his primary medical care. He’s back in his old home now even though the home and the house manager seemed like a wonderful fit. Why? … Continue reading
Does Alex know us anymore?
As we were camping over the weekend, we visited Alex on Monday this week, and it was a pretty awful visit. Within about two hours we had to leave due to how much Alex was hurting himself. Though sad, this … Continue reading
Alex got the recommendation again
This isn’t really a surprise, but it was an interesting visit all the same. We were there for about 30-45 minutes, and the doctor was 100% in agreement about medical marijuana for Alex. With his seizure disorder, rage, and huge … Continue reading
Wish us luck for renewing Alex’s OMMP card!
Tomorrow is the appointment with Alex’s doctor. If we don’t get a renewal there, we’ll probably wait until Alex has moved (in a few weeks) to try with another doctor, but we’re really hoping that we can get him back … Continue reading
The complaint
We’re going to be lodging a complaint against the hospital if something incredible doesn’t happen relatively soon. After Alex’s dental appointment on Wednesday, he had five teeth pulled, five fillings, a crown, and a root canal.
Visitation updates for July and other fun stuff
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 … Continue reading
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 … Continue reading