memorial day weekend & the kayaks came out

I was in Nebraska most of the weekend at the funeral of a dear friend and mentor, but we managed to find kayaking time at Michele's pond after all. What a beautiful weekend it was, though bittersweet.

Mothers' Day

At church & at the Garden in the Woods. Lovely day!

yipee

So happy to have outdoor hammock swing & warm weather back.

catchin' up

Okay, I've undergone some serious harassment from Little Lars Blog fans for how remiss I've been in the update department. My apologies. Lots & lots going on here. I'm going to start catching up with some photos from tonight of Lars sportin' his new haircut. Don't think I'll buzz it again, but it's fun to see him looking so big boy-like. I miss his blonde curls. They'll grow back. I hope.

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.

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.

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.