It feels like it's been forever since I had time to post here! And so much has happened!
(BTW, the boys finally succeeded in completely killing our "good" computer. So today I'm on the computer where the "h" doesn't work. So if you see "te" here and there, it's because I missed pasting an "h" there. I can't tell you how much fun it is to have to type Crtl+v instead of"h" over and over and over.)
We did it! Finally. We drove to Chicago, visited Rush University, and started the STX209 clinical drug trial!
We have been wanting to get involved with this trial mainly because it's been shown to help people with Fragile X with social anxiety. In other words, it might help them tolerate a cafeteria. Or a school playground. Or a busy doctor's waiting room. Or just, regular life.h
Well, that and the fact that I like helping out with a drug trial that will help kids and grown ups with Fragile X. I like the idea that my boys are helping further the research, helping make sure this gets through the FDA approval.
I have to say, after anticipating this all summer, giving them that first dose was pretty exciting. Every dose after that one has been exciting. Now, there's a lot of different possible scenarios here -- they get three doses a day and could be getting one of several different combinations of different dosages of the trial med, or the placebo.
I'm not sure what we are expecting. While I have hopes it'll be a kind of "awakening" for them, I'm trying not to assign too many expectations here, partly because I'm not supposed to-- I'm supposed to try and be as impartial and objective as possible -- and partly because I just don't want to be disappointed. I mean, there's still no miracle cure here. They will always be two boys with Fragile X. This isn't going to eradicate their "special needs" status.
I know too, that it could take awhile for the affects of the med to start being noticeable.
But we are watching them closely for signs. Are they getting the actual medication, or the placebo? On the first night on the medication, our second night in the hotel in Chicago, Zack had a hard time falling asleep. He got himself all worked up into a little snit. He screamed and threw pillows on the floor and kicked them. Then he put them back on the the bed, staring at me through tears, saying "good boy." Then he'd throw them all on the floor again. AJ just watched him in a daze. They were both sooooo tired.
"Well, I guess Zack's on the placebo," my dad decided.
What? You think we should give it more time??
Word of the Week 3/7/2020 Blur #WotW
2 days ago