Wednesday, October 5, 2011

In Which Connor Has A Not So Great Day

Connor and I initially had a pretty good day; he slept in until just past nine in the morning and then we spent some time playing around the house before heading out the door shortly after noon.  I wanted to pick up a couple more things for Ellen's care package, and I was also completely out of books, which is a dire predicament in our house. 

So we drove down to a neighboring town to spend some time at the bookstore.  I'm still saddened by the fact that I have to drive a whole thirty minutes to get to a bookstore instead of the two minutes I had before the local one closed, but this is probably a heck of a lot better for my budget.  Oh well.  So Connor and I browsed and found a few good titles.  Then we sat in the coffee shop attached to the store and had lunch.  Connor wasn't interested in my smoothie or my strata, but he helped out quite a bit with the cream puff I had for dessert. 

So after that we ran a couple more errands and went home, where the little guy and I spent some quality time snuggling.  He seemed to be pretty worn out from our outing.  We took it easy until Jeremy got home and it was time for me to get ready for derby.  I was grabbing my skate bag and just about to walk out the door when the little guy decided it was time for a seizure.  A seven minute long seizure of the trembling, jerking variety.


So we ended up having to use the Diastat, and we were getting pretty close to calling the EMTs when he finally stopped shaking and twitching.  It's pretty easy to tell when this kind of seizure is over because it's literally like someone has flicked a switch-- one second he's trembling and jerking, the next second he's perfectly still.  He stayed awake through this one the whole time, and was obviously aware it was going on, and towards the end he was starting to get pretty upset, which is always hard.  I kind of prefer the ones where he ends up completely out of it because then it probably isn't nearly as scary for him then the ones where he knows it's happening but has no control over what his body is doing. 

So Jer and I sat with him on the couch, kept the oxygen flowing to make it easier for him to breathe, and held his hands and sang to him until the seizure was over to try and keep him calm-- when he starts getting upset during a seizure it does bad things to his breathing. 

When it was all over and he stopped, Jer and I stroked his hair and told him that he had done a great job and was such a brave big boy.  He looked gravely at us for a minute, then broke out in a huge, delighted smile that lit up his whole face before giving a little sigh, closing his eyes and falling asleep, his head cradled on my hand and his legs across Jeremy's lap.

I love that kid so much.


1 comment:

Julia said...

Such a sweet, sweet kid -- and such a traumatic experience. It just boggles my mind to think about the many, highly varied effects of his chromosomal transmutation (or whatever the term is -- I'm sure I got that wrong) -- and yet, so many things about his body and mind work so well, the way he responds to caresses and encouragement with happiness, just like any child, and the way he strives to learn and grow, and he takes pride in his accomplishments, just like any child. All the important things are there, but there are so many quirks in the system, too, that he has to battle through. From the little that I know about information theory, it always seems that when you have vast amounts of complicated data to transmit (say genetically, about how to build a human being), then even a small change in the structure of the signal can completely obliterate the message. And yet here is evidence of how robust that genetic information really is -- so much of his body and brain *were* built right, and function remarkably well. You've got a beautiful, amazing child who has to contend with a few quirks in his system.

Sorry -- kind've a weird tangent. Anyway, I hope you all recover soon from the experience.

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