Saturday, December 8, 2012

24 Hour EEG Results


You would think I would be jumping for joy that the 24 hours Garrett was inpatient plugged up to wires and being filmed there was no sign of seizure activity.....but I am not. I was thinking there had to be some reason, some tangible, concrete, quantitative reason. But apparently seizures don't look like the answer. Dr. S in Seattle, Garrett's Mito doctor, will review the data himself by the time we see him Monday, and unless he can see some subtle things that the doctors in Boise didn't, that will be off the table for now.

Garrett's days are all over the place. A few days this week, he was super-compliant, and a joy minus the  ticks and several tantrums and screams throughout the day. But then today, he was off the chart BAD. And I don't mean he was trying to be "bad" in the normal kiddo sense of the word. He was upset about every single thing. We went to our little town's Christmas parade, and he was screaming because people were giving him TOO MUCH CANDY....WHAT!?!?!? But that's how differently he sees things. Things are garbled, backwards, and painfully opposite what most kiddos would think like, act like, or react to.

RaeAnn, his developmental therapist, worked with him about six hours today. In fact, she went with us to the parade to help him deal with it all. RaeAnn is such a Christ-filled spirit and such a dear lady. She truly loves Garrett. We brought him home screaming about everything, and by the time we pulled into the garage, I was in tears and apologizing to RaeAnn for if I haven't used every fiber of my Earthly being trying to fix things. She looked at me and with tears in her eyes said, "Clara-Leigh, I can't count the days I have driven home crying because it makes so little sense, and I cannot seem to even help a lot of the time." Of course, then I burst into tears. It is just so complicated.

When we got into the house, we tried to just function as a normal family for a while, and it was even easier than usual to have a peaceful evening since Addie was slumbering the say away in the guest house after an all-nighter with the Deer Flat Youth Group and Ainslee was at a Christmas brunch with one of her good friends. But Garrett was off the chart, meds were on board that should have helped, but NOTHING was rewards, threats, bribes, calmness, or anything. So I made the executive decision to put him in bed for a nap.  I put an electric blanket on his bed and Sammy (his dog) and I curled up in his bed with him under a super-soft blanket and the electric blanket. We all crashed hard for two hours!!

Garrett woke happy, but was still off this evening. Can't explain it. Probably it has to do with not having a routine or school today. But isn't that every single weekend. Or like Grouchy said, it's like being prisoners in our own house. We are trapped. Even with the help from caregivers, it is loud and lots of times, out of control. So much for the guilt I had for years when I felt bad leaving my boy and taking off. Guilt gone!!!!

Tomorrow we travel to Seattle where my mom will meet Garrett, Sammy and me for the Mito doc appointment. We return Tuesday. We hope to find a couple of fun things for Garrett to enjoy in Seattle after his appointment. We are hoping Sammy will do great flying like she has done with everything else she has experienced to date!


1 comment:

  1. I'm so glad the EEG was normal, but also worry along with you about the "why." I am new to your blog (came here because you commented on mine - thank you it was and was looking for the background story about your family. Is that on here? Bless...