still EEG'in

Lars' eeg that started Friday is still on, the battery having been recharged at Children's hospital on Monday. Little guy is not necessarily too happy about having his head all wrapped up for going on six days now. Slept absolutely horribly Friday, Saturday & Sunday nights when I had him. Yikes was I exhausted. Sunday night I got a wopping 2 hours of sleep & that was interrupted 3 times. Really restless & then up at 1:30 a.m. Huh? He was with Andey last night & she reported more restlessness, but also more overall sleep.

A friend at school described him as "a cute little ali-baba today all wrapped up." He is cute, you gotta give him that. I've got some pictures I'll try to post soon of the roving eeg boy.

I mentioned that he had his first "normal" EEG. What that means is that the background rhythm of his brain waves has matured and normalized from something chaotic and irregular to something that's regular enough to fit within normal limits for his age. It doesn't mean he's not having seizures. What Lars' epileptologist wanted to know is whether what we see that we think are seizures--eyes roll to the side, maybe a hand moves, seems unresponsive--are actual clinical seizures or just neuro-events-Lars-checking-out events. We have been giving him diastat and sending him home from school, for example, when he has what qualifies as a 'cluster' of these kinds of seizures. We want to know whether they actually are or not. So they're leaving the EEG on longer in hopes that we catch one, can mark it by pushing the button, and then they can go back and check out the recording of that time.

It's a funny thing to wish for seizures, but it would be nice if he would have a couple of what we're thinking are seizures so we can check them out. He had a maybe-event at school yesterday.... Michelle is taking him back to Children's today after school to either get the battery recharged again, or to get the whole thing off.

eeg

Lars' eeg from a week & a half ago--the one that was normal. I still can't get over that. 4-day eeg starts Friday & he wears it until Monday...an "ambulatory eeg." Sure we'll get pics of that, too. (If you click on the little text bubble in the lower left corner of the slide show, you get the captions.)

are you sitting down?

Spoke with Lars' epileptologist tonight & the EEG Lars had done a week & a day ago was his first normal EEG ever. Ever.

Of course he's been having what we think are seizures every couple weeks--four today at school before I picked him up for inconsolable crying & turning blue--but at least when he's not seizing he's grown into a somewhat regular brain rhythm. Woah. Mind blowing.

Lars' doc wants to do a 48-hour test to look for seizure activity, or what we think is seizure activity, so that we can determine if it is or not. Lars had to be wrapped up like a burrito for this EEG so he wouldn't pull the leads out; first time they've done that. Michelle & I took lots of pictures & will post them shortly, as soon as we get done having the ^%$#@&* stomach flu that Lars had last week. Luckily Andey hasn't had it over at her place, and Joa only got a very mild version.

Tomorrow's Lars' big IEP meeting at Perkins; I baked apple cake for the event. I'm so domestic.

stomach flu & weird al

Lars had the stomach flu this week. Too much partying Saturday, I guess. Had to stay home from school Wed, Thur., & Friday & miss the big trip to the Children's Museum with his class today :-(

Well, at least we had fun music Friday--a regular feature at our house--and Lars discovered a new song he loves: Weird Al's Amish Paradise! He started laughing as soon as it came on & just kept laughing:

Lars' 4th Birthday!!

We had a pajama party with 32 friends on Saturday morning. It was great fun! Hopefully this slide show will work... Lots of great photos there, courtesy of Denise (& a few by Monica). (If the slideshow is crazy & sideways, just hit the "reload" button & it should fix it.)

Sledding!

 
 
 
 
This are from awhile ago, but we had to share them. Espeically given today's weather. Boy did I love being pulled in the sled! Except for the time it tipped over and I ended up face down in the snow.

beautiful boy

Michelle's mom knit Larsy this sweet scarf. Thank you so much!

stud muffin

Who is the cutest little stud muffin ever? In his new shirt that Michelle won for him. Handsome, handsome.

munch the bat

Lars' dear Michelle got him one of his new favorite toys: the bat. Woah is it a wonderful thing on which to chew. Wings are often soaking wet. We love bat.

snuggle buddies

Lars, taking after his ol' mama, remains one of the snuggliest snugglers around. Here he is with Janet & Monica.