Skip to main content

they still throw me for a loop



Most of the seizures Trevor has had throughout his life have been quick, jerky movements. In seizure-ville, these are known as Myoclonic Seizures. I've seen hundreds of thousands of these seizures since he was 7 months old. I hate to say that I've grown comfortable with them. Because I'm not comfortable with seizures. period. But I know these nasty little beasts. They are predictable for me. I know when to worry and when to just give him cuddles.

He has yet a new seizure type emerging, though. And it’s totally throwing me for a loop. I hate them. They are so much more visually disturbing. His right arm raises up. Not straight, though. It’s crooked. Shaped like a half moon. And sometimes it will rest on his head involuntarily. Almost like he's patting himself. His head turns slightly to the right and his eyes are…just weird. Everything slows down. His movement, his speech. To me, it feels like I'm watching a robot "power down". His body kind of hunches over. And he moans. It doesn't really last that long. Anywhere between 1 to 3 minutes. But compared to the quick myos it feels like an eternity. And I hate them.

…danielle

Comments

blogzilly said…
There's about twenty pounds of suck in that five pound bag. So what's the plan?

That movie you made up there, top right...how did you DO that. It's really something else.

Popular posts from this blog

I cried when I got the news

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...

it's like being asked to the prom...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...