Thursday, February 3, 2011

In the groove

It's been a busy week so far, and it isn't over yet. The CIMT program is complete, and I've started back to classes. The kids have only had one snow day this week, and a new babysitter/mother's helper has started helping with Simon a couple of mornings, so I can get a little more work done and go to class. Which is good, because design work has picked up in a big way this week as well. Projects that have sat on the cold back burner for weeks (or months) are suddenly simmering away. Brian has been out of town the past two days; visiting his Grandmother who is, sadly, quite ill, so I've been single parenting as well (speaking of which, I sometimes wonder how single parents do it. Their ability to fly solo and stay sane on a daily basis is so incredibly amazing to me. You ROCK single parents!)

Aside from our concern over Brian's Grandmother's heath, it has actually been a good week. Overall, I seem to function better when I am very busy -- I feel more "on" and able to conquer whatever task is in front of me. Maybe this is a Laura-centric sensory issue. I have to reach a certain threshold of activity in order to be completely engaged. Hypo-Busy-ism. Or Hyper-Competency-itis.

Our optimistic mood at the end of the CIMT program has carried over, and we've been working on ways to use what we have learned in SImon's day-to-day life. Earlier this week, I sent his iPad to school with him, and it seems to have been a hit. They've asked we send it in just once a week for now. We are also getting ready to start back at the Loyola Clinical Center's Speech Program (a teaching program), and I have already spoken to the graduate student working with Simon this semester about finding ways to incorporate the iPad, and technology, and sensory stimulation in general into her sessions with Simon. It was a good conversation, and she seemed both receptive to and a little excited by my ideas. She is already researching more apps, techniques and processes to better meet our little guy's needs and I'll be sure to share what we come up with.

At home, we've incorporated lefty into a lot of the small task that make up Simon's day. For example, every morning when he gets his gummy vitamins (those things are delicious), he has to use his left hand and a pincer grasp to pick them up (I literally hold righty back). When he asks for a toy, if it isn't too heavy, we make him not only use his left hand to grab it, but we hold it up slighly out of reach so he has to stretch his arm out to get it. These are little things, but we're hoping that if we incorporate enough small actions, with enough frequency,  that the cumulative effect will be that he sustains the gains he made longer. We'll see. In simple play I see him spontaneously using his left hand more often and that gives me hope.

It's this hope and optimism that I am going to try to hold onto through Monday. Monday morning, Simon has an MRI, for which he has to go under general anesthesia, followed by an appointment with our Neurosurgeon to both reprogram his magnetic shunt (it gets out of whack from the MRI machine), and to review the brain scans. The reason for the MRI is two-fold: to see if there are any (more) irregularities in Simon's brain that could have caused the sudden onset of siezures, and to see if there was any additional damage done by the highly unusual and dangerous 2-hour seizure he survived this past November.

I'm nervous. I hate to put him under at any time, but, additionally, I'm worried about what the results of the MRI may show. Like a monster in the closet, I don't want to look, in case my worst fears are true. The little girl in me wants to cancel the appointment and cuddle with Simon under the covers instead, but I know that is irresponsible. I know that (in the colorful words of one of Brian's favorite aunts), I need to put my big-girl panties on and take care of what needs doing. And I will. And I will also remember how well Simon is doing, how far we have come, and that, no matter what the outcome, I have dealt with way worse and come out stronger.

Then again, maybe it's time to implement a little retail therapy and go buy some new, really kick-ass panties.

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