When we received Kieran's diagnosis of Williams syndrome, we were grateful for all the research that had already been done on WS that helped us get a bearing on what was coming for him and what we needed to be doing. And we wanted to "give back," in a sense, by enrolling him in whatever research studies we could find that were appropriate for him.
One of those is with Dr. Mervis at the University of Louisville. (I've talked about our times with her here and here and here.) At our visit last November, we learned that his results of her research study qualified him for another research study--one that was located at the NIH in Bethesda, MD. This new study, from what I understand, involves using an MRI to take pictures of the brains of those with WS and compare them to the brain scans of age-matched typically developing children to find out which areas of the brain are similar and which are different.
We were interested in the opportunity but were very hesitant on the MRI part because Kieran has a major aversion to anything even remotely pertaining to doctors and hospitals and being in enclosed spaces (and a few other things). Major as in freaking out -- crying uncontrollably, unable to listen to reason, etc. He's been poked and prodded so much from the beginning of his little life that his anxiety when in those types of situations is through the roof. It's difficult to accomplish any type of examination with him (except a dentist exam--where all the dentist needed was an open mouth, which Kieran gave him with his screams).
So we signed him up and have been thinking about how to prepare him for the visit, which is in just a few weeks. A few months ago, Seth came up with the idea of building an MRI simulator that Kieran could play in and get used to.
He started working on it in the garage and Cael was only too happy to help test it out.
He used a new trashcan and some boards to put it together.
After a few modifications, this was the result, which we brought inside.
He cut the trashcan and attached it the boards with ____ (fill-in-the-blank -- he's sleeping right now so I can't ask him the technical term for the attachers).
And put a bumper in it to stop the platform.
He built a movable platform that slides in and out of the trashcan part.
He found some rollerballs (?) on Amazon that he used on the bottom of the platform to make it slide easily (and loudly).
And then we found an cushion from the changing table (that's no longer being used because we're a diaper-free household!) that we put on top of the platform.
And here's where I confess to telling a lie. I told Kieran that he was going in a spaceship-type-thing -- hoping to draw his attention far away from the hospital-link and make it into something cool that he would want to get into. Somehow, Seth morphed the spaceship idea into a submarine idea, and so now we call it whichever rolls off our tongue more quickly.
The lady at the NIH sent us a CD of the sounds the MRI makes, so we play that while Kieran is in the simulator (and I've also played the sounds in the car--that makes for fun driving).
He has to wear both ear plugs and earphones in the scanner to protect his ears. He's fine with the earphones but we've been getting him used to the earplugs (his teacher, Ms. Karla, was working with him on using those at school to help cut down on his distractibility). He's fairly comfortable with both now.
And, he'll have some pillows around his head to keep it still in the actual MRI so I put a blanket around him to practice.
There's also some other type of headband-thing that he has to wear, so I tried out one of my headbands on him the other day -- to get him used to the feel of having something on his head.
We're still working on having him stay very still (he moves constantly) and when he's in the simulator, I've tried "brushing" his legs which might help a bit in keeping him calm and still. And, in the real thing, he'll have a screen to watch movies on and play games on above his head (we can't quite fit his LeapPad in there to practice). But he seems to be getting more at ease with it--he lays on it and pushes himself in and out while he's watching TV.
I really don't know how he'll do when we go to the real thing--we're making that a matter of prayer, as well -- that the Lord would give him peace and help him to be calm. But this is our attempt at helping him through this. I'll let you know how it goes! [UPDATE: The follow-up post is here.]
