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I saw what I saw

Posted Nov 29 2009 10:04pm



I've heard through the grapevine today that I haven't been posting enough.

Which is taboo if one aspires to be a BlogStar. It's, like, blogging 101. Keep it short. And keep it often.

Lucky me. I have no desire to achieve BlogStar status!

I is what I is. And these days that is...


And trying really...really...really...really...hard. To find my balance again. I actually found the time to exercise once this week! Which is not even close to often enough. But still. Its something!

I was going for twice this week.


that was thrown off when Dr. Neuro ordered a 48 hour EEG. ASAP. Because Trevor had two seizures. Not big bad scary seizures. Nope.

More heart shattering than that. His seizure looked like the ghost of what we thought we left in a Detroit path lab...coming back to haunt us.

Yes. I saw a spasm. A spasm. Not a cluster of spasm s. Which is positive. Except my heart wasn't prepared to see that again. After so long. When I saw his arms fly upward... my arms went weak. And whatever I was holding (for the life of me I can't remember what) clattered to the floor. The gasp that wrenched from my heart through my lips was so filled with emotion that Toby is still talking about it. I scared him. But I couldn't help it. Trevor scared me.

Especially when several handfuls of minutes later I saw a head drop too.

I immediately sent emails to both Dr. Neuro and Rockstar. They both emailed back to increase his Dilantin and get an EEG.

So increase his Dilantin we did. And I'm happy to report I've not noticed any other seizure-y things. See...we were trying to wean his Dilantin per doctors orders. And the hindsight zone...I see that some of his "odd behaviours" were red flags.

For the sake of other seizure parents...

The off things I noticed were very intangible. And so slight and explainable in other ways. He just seemed more foggy. Less focused. More fidgety. Sleep interruption. Not as babble-y.

The morning after we increased his Dilantin...those behaviors were mostly gone. And he spent a solid 15 minutes playing with one toy. Which just further confirmed (because of course I doubted myself) that I saw what I thought I saw.

Which is why I have agreed to live through the hell that is a 48 hour in-patient EEG. This week. I would MUCH rather be Christmas shopping. I loathe EEGs. Especially the overnight kind. And this will be my first solo mission. Jonathan just can't miss another day of work. So...I'll be there ALL day long by myself. He'll come for the overnight shift. And then play it all again the next morning.


this is why I'm EXHAUSTED! Just thinking about it makes me want to curl up in a ball and hibernate.

And yes...of course I asked. If he could relapse Infantile Spasms. Dr. Rockstar never answered. And I didn't have the energy to email and ask if it was an oversight...or if he couldn't promise me that. I don't think it's possible. But still...


Now that the downer news is out of the way. And I'm whipping out a post to satisfy whoever needs more info. I need to add...

Trevor is continuing to thrive!

Do you know I have spent the past year and a half trying to teach him one single body part? In the weeks since surgery he has learned FIVE! And it's quite possible if you stop by for a visit...he'll yank your ear and tweak your nose. Just because he can!

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