Monday, September 19, 2011

Drew stuff

Drew is three weeks away from his first appointment at Rush for the Arbaclofen trial.  I am excited about him getting on the Arbaclofen, but I am nervous about the first appointment.  He will have to have two blood draws and an EKG.  I think they said the first appointment would last like, five hours or something.  We are going the day before and my mother in law is staying with Blake and getting him off to school on Monday. 

I hate to pin my hopes on this drug, because we don't know if it will really work for Drew.  However, everyone I talked to is saying that it is a "wonder drug" for people with FXS and severe anxiety. 

The things we've been doing at home like picture schedules, video modeling and sensory input have been helping a lot, and we'll continue it after he's on the Arbaclofen, but having some medicinal support would be nice as well. 

We went to church yesterday and dropped the kids off beforehand.  In the morning before we left, Drew watched our video modeling "Grandma's House" video.  It went pretty well.  He is still not going in right away, but as soon as Eric and I leave for church, he goes in.  I am thinking next time, Eric and I will drop the boys at the door and as soon and my mom and dad open it, we'll leave for church and see how that works. 


Kim C said...

Good luck!! will say a prayer for you guys! And, by the way, Drew did fabulous on Saturday (even before Brian got there!)!! So did Blake, loved seeing them!

Bonnie@TheFragileXFiles said...

Oh Kristie, you and I will have to closely follow each other, because we start the Arbaclofen trial a week from today! We are headed to Chicago next weekend!

Why is Drew going to do it, and not Blake? How did you come to this decision? We are doing both boys, and I'm a little overwhelmed and wondering how this will go, esp. if one of them gets the actual drug, and one gets the placebo.

Mrs. Rogers Neighborhood said...

Kristie! Just think the 5 hours cannot be any worse than the 5-6 weeks you guys have already had in dealing with no meds--it will be ok. You guys are just doing everything right and all that you can possibly do. I cannot wait to here the progress.

Kristiem10 said...

Bonnie-we decided to try it with Drew first because his anxiety is dramatically worse than Blake's. If he does well, we may try it with Blake down the road. Blake's doing so well as it is, we didn't want to add drugs unnecessarily.

And Cindi, that is a really good point. I am sure we can get through it.

Kristiem10 said...

And Kim, Drew said he had fun on Saturday. I am so glad for people like you who care about our guys.

fragilemom said...

Since we haven't had to go the medicinal route (except for Chlonidine), I'm embarrassed to say that we haven't kept up too well with it. Can't wait to hear how it goes! I'm going to look it up and stay updated. I think anxiety levels for ours have just started being more apparent, especially for Ian.