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SWEET SUCCESS...(unofficially anyway)

Posted Oct 13 2009 10:06pm
WE CAUGHT ONE....WE CAUGHT ONE!!!!!  Not a fish, but a seizure.  Can I hear an AMEN???  I thought sure she wasn't going to have any seizures.  We got hooked up to the ambulatory EEG at 8 am yesterday.  I got her back to school as quickly as I could (an hour and a half drive) as school seems to be her main stressor.  Absolutely nothing happened yesterday.  She had at least one seizure every day last week at school.  The teachers couldn't believe it.  She came home in a great mood (which normally I would wholeheartedly embrace), no seizures.  All I could think is, maybe she is done for a little while.  Naturally, as soon as she is hooked up....seems to be the story of our lives.

She went to sleep fairly well, talked A LOT in her sleep, but no seizures...  UGH!!  She got off to school this morning, even rode the bus with the whole EEG get up (Hannah is very self conscious.  She doesn't like to look "different."  We had bought new clothes with hoods, a new very snazzy hat and even a cool bag to put the monitor in).  I waited all morning for the school to call.  Praying.  Please don't let this be in vain.  We need information.  Finally...THE call!!  Blitzen had alerted at 11 am in math class.  Good boy!!  Another call at 11:30.  Blitzen alerted again in the lunch room (never alerted there before).  Another atta boy!!  There were no visible changes in Hannah yet.  Then at 11:45 the seizure began.  Glazed over, drooling, baby talk, and getting very agitated.  I came at 12:30 to pick her up so we could head back down to Cincinnati to unhook the leads.  She was still pretty out of it.  Miss, "I don't want anyone to see me like this", completely had her electrode ridden head exposed.  She didn't care.  I am not even sure she knew it.  wow.  She went all the way to Cincinnati and all through the hospital like that..

Before they unhooked her, they checked the data,  It was there.  In all its glory.  Praise the Lord.  Once they knew it recorded properly, they unhooked her, very itchy head.

So, now we wait....probably a week or so.  If this shows them coming from one area, doors could be re- opened.  But, I am trying not to get too hopeful....

And no word on VNS yet.... the saga continues....
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