Our participation in the clinical trial for STX-209 is almost complete. Noah just took his last dose of medicine & we go back on Monday for the last visit in the trial. We get the option of putting hi on the medicine THE OPTION?? It's a requirement (for me) there is not one doubt in my mind that we were on the medicine and not the placebo. Everything changed for the better communication appetite, cognitive skills, interacting with the environment, age appropriate toys, social skills improved, ability to educate him & retention of what we had covered. Are there still areas for improvement OF COURSE but as far as I am concerned I think WE ALL have areas of improvement don't we?
I hope we get to continue with the same staff members on our
follow up visits. They are incredible we went from visit 1 with a TOTAL meltdown
after the blood draw. I mean laying in the floor kicking and screaming you know
the kind. Now when he has blood drawn he watches and says "ow" and it's over.
He loves going to Vanderbilt we always get pizza for him from the Pizza Hut
downstairs. He loves his own little pizza. Of course we have to keep the box,
he is such a little hoarder we walk through the parking garage and he is picking
up pieces of paper and shoving them in my purse.
When we started this
part of our journey I had no idea where it would end up God works in mysterious
ways, I was at a point where we didn't know where to turn. We were on waiting
list all over the city but his behaviors were escalating. I am talking biting,
hitting, kicking, stomping on me If he knocked me down. This was constant, I
had considered anti psychotic drugs but the side effects concerned me. I got
the email from Vanderbilt about the trial I immediately called and the next week
we were there. God has truly blessed us and once again pointed us in the right
direction to continue to help Noah and our family through our journey with