Thursday, September 2, 2010

In Which Connor Has His First Day of School (And Another Seizure)

I don't really remember a whole lot about my preschool days, other than that my teacher was a humongous human being (really she was about 4'11" or so, but when you're only 3' tall that qualifies as humongous), we went fishing for crawdads with peanut butter one time, and that there was a really neat sand table.  I don't remember what I brought with me to preschool, though I suspect it was something along the lines of a jacket and a box of crayons.

Well, here's what Connor brought on his first day of school.  It's probably good that we don't have any other kids right now, because they'd have to ride on the roof rack.  We'd already dropped off his thirty-some-odd page Life Threatening Illness Action Plan and most of his medications, so we're actually traveling light.

It's really not that bad.  Connor's portable oxygen tank refills are being delivered tonight, so we can stop hauling around the big tank.  We'll only be taking the stander up and back once a week; right now Connor's only up for about half an hour at a time in the stander before he's all tuckered out, so he'll do that time at school during the week and then with us on the weekends.  But wow, it's still a long, long way from a jacket and a box of crayons!  That sort of thing hits me every once in a while; in many ways Connor is having the same sort of school experiences that I did, but at the same time there are many things that are completely, irrevocably different.  My mother, for example, wasn't on a first-name basis with most of the local EMTs.

But anyway, he had an absolute blast at school on his first day!  When he woke up this morning he was beside himself with excitement because he absolutely couldn't wait to get in the building and start his day.  I received a glowing report when I went to pick him up; he'd spent the whole day giggling and eager to learn.  That's my boy!  He brought home his first piece of tissue paper artwork for the year and beamed with pride when I gushed over it at home.  I would have hung it up on the fridge but the stainless steel isn't magnetized so we hung it up on his Planning Board instead (which is at wheelchair eye-level on his wall) and now everyone can see what a great job he did.  I'm glad that his school year is off to such a great start!

I am sorry to say, though, that he did have a seizure this evening.  This one lasted about four and a half minutes, and I resuscitated him for two minutes of that.  He was pretty tired and lethargic afterwards until I gave him a dose of Ativan, and then he bounced off the walls for the next four hours

I'm relatively certain by this point that lethargy is not a side effect we're going to have to worry about with the Ativan. 

If he follows the same pattern as the last Ativan dose than we should have about ten days until we see the next seizure.  We're coming up on week five (out of fourteen) of the Lemictal titration schedule too, so we'll be upping the dose for that on Tuesday, which will hopefully stave the seizures off even longer.  I don't really like the fact that we're essentially using four seizure medications for the kid right now, but we'll do what we need to do until we can get the Lemictal up to a therapeutic dose and see if it will work for him.  We should have enough Ativan to get us to that point if he keeps up his current pattern.

Keep your fingers crossed for us!

~Jess

8 comments:

Mary said...

Sorry to hear Connor had another seizure. I hoped they'd be staved off a while longer than that. :/

On a lighter note, was the Horsey in the picture able to join him at school? That alone would make school -awesome-.

Jess said...

No, the horsey was not at school. And the kitchen sink was out sick too.

But school was -still- awesome!

Jennifer Jayhawk said...

Jess, you are amazing. I read your blog everyday. It breaks my heart when your beautiful Connor has a seizure.

You are a great writer!!!

krlr said...

Awesome - love back to school time. Sad, of course, because another summer is over & you can see the end of the year coming but suddenly there is TIME! To DO stuff! I was practically giddy as I was wiping away the tears. Any plans for those precious hours?

Wherever HE Leads We'll Go said...

Wow! He looks so grown up in that picture! Glad he had a great first day at school. Not glad to hear about another seizure. Really do hate those things! Praying that they stay away for a lot longer than 10 days!

Julia said...

What a great day -- until the seizure, of course, and that's very worrisome, but still I'm so happy he had a good day at school and was so excited to be there. Yet more evidence that you're in the right school district. I shudder to think what he would be experiencing in your old district.

leah said...

Ugh- another seizure! I had my fingers crossed because it had been a while. The Ativan sounds like it is helping, at least. I can't remember- how much longer until the Lactimal is at the full dose?

He is super cute in his "going to school" outfit!

xraevision said...

Connor looks very grown up in this photo! I'm happy to hear that he enjoys school so much, but sorry about the seizure. At least, it seems that the Ativan is helping somewhat.

 
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