Is there an echo in here?

>> Thursday, July 5, 2012

The words: This may not help his seizures, have been resonating in my brain. Over and over, with each seizure I see a little less hope slip away and those words keep repeating themselves.

And then, he puts himself to bed.

Again, not a big deal for some 9 year olds, also a big deal for some 9 year olds, with or without cognitive problems. But a super, ultra, big deal at our house.

He has been averaging 3 seizures a day of varying intensity and type. Some are quick, and others suck in a major way. Take those seizures out of the equation, and he is doing well. Minus the food playing and toy dropping. He is manipulating his environment, going down the stairs using every other foot (not always but 50% of the time maybe), he is watching Sponge Bob and he is running. Running. And not just when he wants to get away. He runs to chase people, he runs to get to Mom and/or Dad, and he smiles.

He smiles from the soles of his feet, his toes feel it, and his eyes shine with it. It feels good, for that fleeting moment. It feels really good.

Last night, we let him stay up as late as he wanted. He made to about 11:45 when he disappeared. I went to check on the baby and, what I thought was a sleeping Bug in our bed. He wasn't there. I looked in the closet (he likes the solitude and it's a pretty big closet): no Bug. So I went back into our bedroom and looked at the monitor. There he was. In his bed. Asleep.

A shiver of excitement passed down my spine and I went into the kitchen to show Glenn. We both sat amazed at what we saw. And we smiled. A smile from the soles of our feet and our toes were very happy. Good job Bug, now stop throwing food on the couch.

2 comments:

Jennifer July 5, 2012 at 10:03 AM  

Wow, Annette! That's a major development!!!

Nett July 9, 2012 at 11:59 AM  

We think so. Kinda cool. Although the messes she is making with food...obscene. VERY 2 year old Bug. Thanks.

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What a Seizure looks like (Graphic Content Included)

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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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