Counting Down to Duke

A week from tomorrow, Ian and I will be leaving for his first appointment at Duke.  After he gets home from school on Monday, February 4, we will get in the Trooper and drive to Chapel Hill.  Although the study would put us up in a hotel, I think for at least the first visit we will stay in a familiar place to both of us, my sister and brother-in-law's home.
 
Now that the time is approaching, I am starting to have a tiny bit of apprehension.  What will all of this be like?  Will I remember all the things I need to bring for Ian?  Will this change in routine totally freak him out?

 We have participated in several studies before; one at UNC and one at the University of Wisconsin.  The UNC study involved MRIs of the brain to check for differences between Fragile X and the rest of the population.  This involved Ian being sedated, and let me tell you, we had an interesting drive back to Richmond after that!  Like his Mom, Ian and sedation are not best friends....

The study in Wisconsin was more about behavior and language and was quite informative and interesting.  The worst part of that one was the blood draw at the end, ugh!
 
But, this study will be quite different.

 First of all, it is a big commitment.  We have 6 appointments and we were nicely told that we are expected to be at all of them, barring bad weather or some kind of emergency.  I have no problem with that; this is quite a big deal and I'm sure there is a lot of money involved.

Second, this study will involve medication.  We are not new to medication, but I know that Ian reacts better to some than to others.  Of course, since it is a double blind study we may not be on any medication at all.

Third, Ian will have to miss some school for this one.  All of our appointments are on Tuesdays, so he will miss 5 days altogether. (one of the Tuesdays is during Spring Break.)  I'm hoping his routine isn't disrupted too much; this is the only time we can do this.

I put a short article about our upcoming "adventure" in the newsletter at my church.  I told them a little bit about Fragile X and how it affects Ian and asked for their prayers to help us through this next challenge.  The response has been incredibly heartwarming, and I have been deeply touched by the care and concern.  In the article I encouraged them to ask questions, and they have.  And I also invited them to follow this blog.  We are blessed to have this loving group of people in our lives.