Ayden is officially enrolled in the STX 209 trial as of Monday. If you haven't heard about STX209 (arbaclofen) then you probably haven't been reading my blog or following me on Facebook. Here are just of few of the more recent articles.
It's difficult to not be hopeful right now. This drug, which has been a life-changing thing for so many others is [possibly] sitting in my kitchen. I'm doing my best to not think about the fact we may be on the placebo or not see any changes even if we are on the real thing and just focus on if we are or are not even seeing changes. My heart is definitely filled with hope though, hope that this little pill will be able to do something for Ayden that I can't.
Our first visit had its ups and downs. We had a long drive to get there, so Ayden was already a bit of a mess. We started with the EKG for him and he amazingly sat very still for us! I'm not sure how they get kids to not move for 10 seconds to get readings, but somehow he did and just smiled. It may be the longest he has ever sat still outside of sleeping of course!
After the EKG we met with the wonderful EBK. It was funny actually meeting her, because I have watched so many presentations and heard so much about her that I felt like I knew her already, but she of course didn't have any idea who I was. I didn't ask for her autograph or anything though, that would have been awkward. ;) She asked if we knew anyone else in the trial or any of the other Michigan FX families. It was pretty neat to hear her talking about one other FX mom in-particular and speak as highly of her as I do. She was the first FX Mom I met after Ayden's diagnosis and not only listened and has been ever supportive and helpful but also put us into contact with the Michigan group AND the large Facebook support group - so while she may not realize it - she has a very special place in my heart. (and when I meet her I will probably burst into tears, fair warning!)
Back to our visit though..We had to get a urine sample, which turned out to be incredibly easy. Then our next step was the blood draw. We knew it wouldn't be easy but it was much more difficult than expected. Two attempts at getting his blood were met with terrifying screaming and flailing. With a child who is extra flexible (especially in his elbow!) - it's very difficult to hold him still. Then his veins were collapsing when they did get the needle in. We ended up going down to the blood lab which went much better.
After that, it was just a lot of paperwork and we were given the first dose and sent on our way. I know the next visits will be much easier and at least we have a better idea on the blood draws now when they are needed. I will keep updating as the trial continues.