Friday, October 12, 2012

The Wheelchair...ugh...

Seriously, getting this chair fitted out properly is one of the most frustrating parts of this injury.  You'd think it'd be a relatively uncomplicated to get properly measured for a chair, but no.  Since every injury is different, every chair has to be different, so it becomes something of trial and error trying to figure out the best configuration.  Jason enjoys looking into all of the equipment possibilities (very similar to what he did with his bike), but even he is getting annoyed by all of this, particularly when badly fitting parts end up causing him a lot of physical pain.

The most recent development is a new cushion.  We'd been waiting on this for quite a few weeks, so we were both excited to try out what is regarded as the best cushion for SCI injuries.  It's custom fitted to Jason's body and, when used correctly, completely eliminates the possibility of pressure sores on the ischial bones.  All very great features.  (I will add here a gripe about insurance...we have a great policy and they only cover $250 for cushions...that seems like a sufficient amount until you begin looking into what cushions cost.  LOTS more than $250...).  When we picked the cushion up, his entire chair got a tune up.  The folks at Wheelchairs of San Mateo are AMAZING and spent over two hours tweaking the chair, adjusting the back rest, changing out breaks, re-inflating tires, and more.  We're so happy we chose to move our business to them...its' great to work with people who are invested in what they're doing and take pride in getting it right.

New cushion!  Much better posture! 

At first, it seemed like the cushion was working out really well, but after a few days, Jason was experiencing back pain and felt twisted in the seat.  So, we went back to the wheelchair shop, where they were able to see a problem pretty quickly.  The chair is just too big..Jason has too much room to move around and, when he does, he gets out of position on the cushion and problems ensue.  The techs at the shop were able to jerry-rig the chair to work pretty well for now...lots of foam padding stuffed in to make it hard for his legs to move around.  If you look at the first photo above, you can see his legs splayed out a bit...that shouldn't happen.  He was given the bigger chair because, when he was originally fitted in the hospital, he had just lost something like 30 pounds.  This dramatic weight loss is fairly common after a major injury, so the chair was ordered on the assumption that he would re-gain most, if not all, of the weight he lost.  He didn't.  He actually lost more.  So now we need a new chair.  We're hoping to hold off on ordering until after the Abilities Expo in November-that's when all the chair companies will be in town and he'll be able to try out a lot of different products and configurations.  He knows what he wants on paper, and has researched and read reviews, but, as we've learned, just because something seems good on paper, doesn't mean it will work for him.  Y'all keep us in our thoughts with this'd think we'd have this sorted 15 months in, but no....

Other than this issue, things have been going well around here.  We're all pretty busy right now-Jason is trying to adjust to his new role of tech lead for his team and I'm trying to furiously write a chapter of my dissertation before mailing out fellowship applications for next year.  Teaching is going well...I'm enjoying being back in the classroom, but I'm glad I will be taking on lighter responsibilities in the spring (might be grading papers for a class, but no teaching duties).  I'm cracking down on the dissertation.  I'm ready to be done with it!

We're finalizing our winter/spring plans at the moment.  So far, it looks like we'll be back to Baltimore for round two with Kennedy Krieger from January 5-19.  East coast/Baltimore folks, let us know if you'd like to meet up!  We'll be staying in the Inner Harbor this go round (and not six blocks away at the top of a hill that's really difficult to get up in a wheelchair...)  If I do end up taking on an academic position in the spring, we'll head back to CA immediately after that's finished.  I also need to travel to Geneva, Switzerland for a couple of weeks in the spring...go enjoy the beauty of the Alps from the inside of the Genevan Archives D'Etat.

And, for your viewing pleasure, a few photos of our gorgeous girl.

We're still trying different ideas for Halloween.

Another option, courtesy of the dress-up box.

Ready for Baltimore in January!

Giggling with Daddy

Love this girl.

Love you all,

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