May 27, 2009

Ella and I just spent a harried four days with my dearest friends shuttling between Yale Medical School and my friend's house. I arranged the trip without realizing that Connecticut is indeed larger than my backyard and driving from one corner to another may require a few hours each way.

We were flown to Connecticut so that my little girl might take part in a study of children with absence epilepsy. The title is something like, "Are children with absence epilepsy really absent?" If I had to make an under-educated guess I would say that my child is absent pretty often. Especially if she isn't taking her drugs, getting at least 20 hours of sleep, and doing something engaging that she enjoys. All three of those planets are aligned once a year. Yeah, around here we deal with absent minded behavior on a regular basis. Going to Yale--on their dollar, visiting friends, and getting pictures of my daughter's brain WHILE she's having a seizure? Count me in.

Sadly, most of our visiting had to happen in the confines of my tiny rental car and the waiting area outside of the research MRI unit. For this, I apologize once again, girls. So, so sorry! We made the best of it and chatted up a storm. Most of the chatting probably one sided so that I could stay awake as I drove back and forth. I honestly thought that Ella would refuse to have the tests done. Previously we've had to completely knock her out for an MRI. That was a year and a half ago. She's older, wiser, and more easily bribed these days. They had to put an EEG cap on her to monitor her seizure activity, then put her into the MRI machine to 'photograph' her brain, and gave her a 'video game' to play during the whole thing. The idea is to get a picture of what is going on while she's seizing and trying to think at the same time. I thought she'd balk the first day, but she was a trooper and had two scans done.

It was a thrilling trip for her. She 'met' old friends and got to fly on a plane alone with Mommy. I'm such a fun travel buddy that I made her take a math test and do phonics work on our layovers. On the way home we realized that we didn't have gifts for the children who couldn't come. Traditionally, around here, if you make a trip--you return with gifts. I think that's taught by the three wise men. I should have just picked up a postcard at the grocery store, but I wasn't savvy enough. I was stuck buying Webkinz at the CNBC stand at the airport. Never has such an extravagant purchase been made on a trip. The usual fare is a book or some sort of crayola art product. Seth once forgot gifts and shelled out a dollar to each child with some quip about thinking they would enjoy buying their own souvenir at the Dollar Store. That worked. The webkinz ruled though, by far the best gift ever given and I imagine that the children will welcome my departure more often. Josiah stole the car Ella chose from the treasure chest at Yale, so he was placated also.

So, the peeling back of Ella's layers continues. It will be months before we get her results and possibly years before this study is complete. I'm pleased with every little tidbit that we can scrounge up that helps us to understand her.

2 comments:

Penny Smith said...

OK, it has obviously been awhile since I visited... Ella has what?? You've moved... you have a DOG?? WHERE have I been??? :)

V said...

I am wondering if your daughter Ella has absence seizures? Our daughter Hailey had them...was on meds...we found a solution and she has been off meds for about 3 years with no more seizures. Please contact me if you are interested in hearing our story. allgloryisHis@bwig.net

We have 2 bio children, 1 adopted from China and are waiting on 1 or 2 from Ethiopia. Would love to talk with you more. ~Vicky