Saturday, March 29, 2008

Lars' new coat

Lars has a little obsession with chewing on zippers--to the extent that he breaks them & little pieces end up... disappearing, probably into his belly. Not so good. I mentioned to his godmother Lisa that it's been difficult to find winter coats without zippers & she promptly solved the problem by hiring someone to make this wonderful little coat for Lars! It's perfect & will last him probably two more winters. The sleeves roll up for now or down (as they were this morning) when it's cold & windy outside. And doesn't the boy just look cute as a button with the yellow & red toggles? We love it.

Wednesday, March 26, 2008

new car seat

Insurance bought us a special needs car seat, and a bunch of friends & family got together for Lars' birthday & bought another one that can stay securely installed in the van instead of getting unbuckled & rebuckled all the time traveling back & forth to school on the bus. What an incredible gift! Thank you sooo much, one & all.





eeg off





Happy, happy boy has a free head for the first time in six days. Our fabulous eagle-eyed Perkins dream team spotted what they think were one or two seizures & got them marked. Hopefully we'll have some information in a couple weeks. For now we're just feeling how wonderful it is to carry him without all the leads, head wrapping, backpack with computer, etc.

Tuesday, March 25, 2008

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.