Archive for the ‘power wheelchair’ Category

What Independence Looks Like

Friday, March 30th, 2012

So what has changed in our house since Oscar got his chair a week ago? The quality of his smile. For those of you who know him, you know he has this beaming smile that will stop you in your tracks. But in the last week, it’s been even bigger and brighter than usual. He is delighted that he can go to his room all by himself. He is delighted that if Dada is going into the living room and he wants to go too, he can just do it. He doesn’t have to ask someone to carry him. And he is really delighted that when we ask him to go somewhere (to the kitchen for breakfast, or to the bathroom to brush his teeth) he can go in the opposite direction of where we’re asking him to go. He can be naughty in a whole new way, a three-year old way!

Yesterday, when he saw me adding dirty dishes to the dishwasher, he asked to help. I was able to hand him spoons and forks that he could drop into the silverware receptacle in the dishwasher – and wow you should have seen that grin! He was so proud of himself!

Oscar is taking delight in the power of being able to move his own body through space in the way he wants to. He will often do a 180 or 360 just because it feels good, and because he can. He finally has some control over his own environment, and a new sense of belonging in space, I think. Last week he was able to play chase with the neighbor girls. He kept saying, “Do you want to zoom with me? Run, run!” He hasn’t been able to engage in real physical play up until now. This opens new doors, especially in his interactions with other kids. He’s also been asking to race us in the house, and he always seems to win!

See him in action…

Up the ramp:

Silly in the Kitchen:

Go, Oscar, go, go, go! (Welcome to our blog)

Tuesday, March 27th, 2012

We’re excited to be able to keep you more up to date on the goings-on of Oscar! We also hope this blog will help raise awareness about SMA and disability issues, as well as contribute to the online SMA community. We hope to post at least once a week but as Oscar recently said one morning at breakfast, “Life is life,” so please forgive us if we do let more than a week lapse between postings.

We couldn’t think of a better time to start this blog than just after Oscar got his “go power chair.” Last Thursday was one of the happiest days of our lives! Linda and John arrived from Fonte with the chair at about 9:30. With the incredible atypical March weather we’ve been having, we were able to stay outside all morning with the chair. There were a good two hours of adjustments to the positions of various parts of the chair: armrests, joystick, foot rest, head rest, lap and chest straps, and height and angle of back cushion. Oscar is so little that with the footrest at its highest position, his feet still don’t sit flat, so small blocks will be added to the foot rest for him. Ultimately this means he has a ton of room to grow with this chair, which is such good news. Time will tell, but it sounds like he should be able to get about three years of use out of this chair.

The adjustments continue

Throughout the adjustments, Oscar waited as patiently as a three-year old about to bite into his first real taste of freedom, independence, and speed could wait. At various times he was given the go-ahead to test drive his new wheels to see how the adjustments were working. At one point he took off into the neighbor’s yard to “hide,” at first, behind a tree trunk and then he disappeared in earnest behind their evergreen shrubbery completely out of view. As Linda called him to come back for more adjustments, he delightfully refused. We were all so thrilled. Oscar can begin testing the limits now in a way he has never been able to before.

Watch Oscar zooming away here: