We're starting to hate the roller coaster

>> Tuesday, July 30, 2013

In 4 days, Bug had only 3 seizures...less than one a day.

Then the shoe dropped and he had 4. In one day. 4.

So, we start over. We write it off to something, anything, to help us feel a bit better and we move on.

This morning, I was up at 6:00am feeding Aiden and at 6:45am I heard: THUD! Bug had fallen out of bed. I played back the video to make sure it wasn't seizure related (it wasn't), got dressed, grabbed his helmet and set out to find him.

I didn't have to go far. He was in the living room, on the couch. He smiled at me and I crawled in behind him. He placed his head on my chest and went back to sleep. It was lovely. Until 7:17.

That was his first seizure.

I can't explain to anyone how it feels to be completely relaxed, cuddling, and then feel that tension of the muscles tightening up. Of feeling that any control you had in your happiness of the calm, almost normal moment, of cuddling with your child, was taken away. He seized for only a few seconds and then tried to go back to sleep. By this time, Ava was awake and downstairs and there was a flurry of activity.

Which lead to another, much larger seizure, 15 minutes later. A 90 second Tonic/Clonic. And there was another THUD: my heart hitting the floor. One would think I would be used to it, but I am not. I don't know that I ever will be and that may be a good thing. It means I will continue to battle this, to not accept that this is 'as good as it gets', that I will get my smiling, happy boy back. Someday. Not today. But someday.

No more seizures today Buddy. No more.


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What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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