When Maggie had pneumonia a few months ago I actually thought it wasn’t that bad. She was sick for a month but the pneumonia part only lasted a few days.
But soon after the pneumonia was gone, she started experiencing a slew of other symptoms – excessive drooling, spitting, frantic arm movements.
We chalked it up to Rett and wiped her chin, braced her arm and tried not to think about it too much. But what we realize now, is all of it was part of her recovery.
Now she actually is over that very lengthy sickness and we’re starting to see things moving in the right direction. She’s babbling a lot now which is exciting in its own right – just hearing her voice is a joy, even if the “real words” we hear in there still come and go. It does give us hope that real words are coming soon, though the experts would tell us this is extraordinarily unlikely. She’s giggling and skipping again. Also, the drooling has lessened, though she is wearing a kerchief more than she was prior to being sick.
The arms haven’t quite corrected themselves, though. We’ve noticed, they are particularly frantic when she’s anxious and out of sorts, so we try to avoid allowing her to get into this state. Weighted vests sometimes help, sometimes don’t. Compression vests – basically clothing that hugs the body – sometimes help, sometimes don’t. Braces sometime help, but she sometimes fight through the pressure the brace is exerting. It’s all trial and error for us too. And through all of this extra arm movement, she’s also been holding onto toys less. For the last year or so, the thing that would calm her most (aside from, unfortunately, our singing) was holding something in her left hand. It seemed to ground her. But in the last sixth months, she’s really been struggling to hold on, and that’s been very frustrating for her.
Today is her first day back at school and we’re nervous that she’s going to lose more hand function. What little she’s held on to, we want to fight to keep. Does it make sense to send her to school where we can only really hope they will work with her on that in particular? Where we hope she continues to babble and express herself verbally more? Where her chin may be wetter for a little longer than if her helicopter parents were hovering closely? Where she may get sick from one of the other kids and have more of these symptoms come up again? These are the questions we have to ask ourselves on the night before she goes to school and, even for optimists, it’s a lot of hope.
Maybe someday, when the medicine has been found to be working, we’ll be able to simply ask Maggie what she’d like to bring for lunch; or what she’d like to wear; or, whether or not she’d done her homework. That’s more like the things I’d like to hope for.