In Which Connor Stands A Lot, And Spends Time In A Swing

Connor is continuing to recover in terms of mental acuity and physical strength after the ordeal of the last two months; today he spent over half an hour in his stander and didn't complain about it at all!  Of course, Jeremy was also spinning the kid around like a top, so that might have had something to do with it.  Our stander rolls really well on the laminate floors and also Connor is a big fan of any swinging, twirling motions or any fast movement, so he was having a blast.  I was mostly concerned about what was going to happen when Jeremy lost his grip on the back of the stander and sent Connor careening into the furniture or the wall, but luckily it didn't happen.  It's my job to worry about stuff like that.  One of the nice things about having a floor plan that's so open for wheelchairs is that it also provides ample room for my son to become a wheeled whirling dervish.  It's pretty awesome to see them playing together again, even if I am worried about centrifugal force getting the best of them.

In addition to his stander, Connor's been spending quite a bit of time in his swing, too.  He's not really up for big field trips yet so we've been keeping close to home, but he's recovered to the point that he wants to do some active play.  The swing has been fantastic for this; it helps him work on his torso strength and balance but in a way that he doesn't think of it as work.  I'm starting to think about getting him another swing or two so we can switch them out to work on some different skills.  I'm so glad that the swing has worked out so well and that Connor is back to his happy self! 

He's been five days without seizures now, and already his left side is catching back up to where it was before, though there's still a noticeable difference in muscle tone between his two sides. I think more than anything the nerves needed some rest from all the seizing.  It's nice to know that a single dose of Ativan will give us enough of a break that the little guy can really recover.  While I have no idea how the mechanism of the drug works, we've used it several times (just once in recent days, but they've used it to stop him from seizing when he's gone status in the past) and in Connor's case it seems to sort of "reboot" his system.  The pattern we see with Connor's seizures is that they start out several weeks apart and then get closer and closer together until he goes status.  The Ativan seems to start the clock over.  While not ideal, I can certainly handle giving him a dose of Ativan every two or three weeks until we reach a therapeutic dose of Lemictal.  It's just so nice to have that option.  We're going to do our best to only use it when it's absolutely necessary; the last thing we want is for him to start building up a resistance to a last-resort drug like Ativan. 

But we'll cross that bridge if we come to it. 

~Jess