So our year started out with a lot of tests and appointments, what's new right? Simon had a follow-up sleep study and EEG. The sleep study proved to be great news, he has some quirks but all in all a good study. Now his ability to go to sleep and stay to sleep has been a problem, well, forever; so we have started him on a more aggresive sleep aid. He is going to sleep better, staying asleep is still questionable but we're only a few days in.
Official seizure diagnosis, Atypical Absence Epilepsy. That's another name for Simon doesn't like to do things the expected way. His seizures are longer and have a few quirks different from what a typical petit mal seizure looks like. Generally they last 10 seconds or less, Simon's last anywhere from typical to well over a minute. His longest, as people who know us may remember, was about 12 horrifying minutes. His medication has been increased and we're seeing some improvement, still kind of watching right now.
The yipee?! NO MORE OXYGEN! The equipment is being returned today!
What is funny about going to sleep at a good time and no more oxygen is my weird reaction. Its funny how used to being tense you are that you just don't know how to relax. I've wanted that oxygen gone for so long and now that its leaving I feel a little apprehensive, as if we're not prepared. We have lived Simon's life with so many surprises I've really become someone who has tried to outthink his body and be ahead of the game. Dare I relax? Everytime I have something has blindsided us from behind and to the left LOL, but you know what; I'm going to give it a shot. I gave up as much control as I could muster to our Heavenly Father a long time ago, I think he gets that I have a hard time letting go of the control; so I hope he gives me some kudos for at least trying to be grateful and relax a little.
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