Sunday, August 10, 2014

The Wheelchair Pit Crew

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Since making the decision to travel with Noah's Convaid Rodeo to Northern Ireland he's grown rather attached to that particular wheelchair. Maybe it brings back great memories for him.  Or perhaps it signals to him the greatest adventure of his life and ours.  Deep down I think Noah is itching for another amazing trip.  However, the Convaid hasn't been the best positioning wise for Noah as his strong tone makes his entire body want to shift to the left.  Which isn't entirely safe as it causes his legs to hang significantly over the edge and in the line of fire of anyone to knock into him.  Noah isn't a big fan of leg and ankle tie downs - especially now that he drives his power wheelchair using the calves of his legs.  He most certainly wants leg freedom.  Can't blame him.  I'd be a bit agitated too if you restricted my movements. 

We knew that we needed to do something fast to correct the problem, so out of pocket costs it was for us.  And these parts cost us hundreds of dollars.  But in the land of special needs, you have to do what you need to in the moment.  Waiting on a response from Medicaid to either approve or deny the request  would have taken 3-4 months, then another 2-3 to order the parts, and another month to wait for the DME to schedule and install.   Noah's safety matters now - not six months from now.   I don't think people have any concept of the amount of wait time that delays children like Noah from accessing their needs for daily living, costing them often times to lose very precious time where progress, development and skill building could have taken place. 

Noah's additional parts arrived in 1 week and today we'd thought we'd install them in the hallway... in eyesight line of Noah.  Mistake number one.  Noah was less than thrilled to watch his ride be altered.  Less than thrilled that we were taking so long.  Less than thrilled that we installed the new vest too low because the memory foam seat sat him up higher.  Chris and I were working on it together.  Really rather simple things to install but we were working so fast as if we were Noah's Pit Crew trying to get him back on the track and out the door for a walk in record speed.   We even abandoned the idea of installing the laterals or the head winged headrest.  Noah was ready to go and was letting us know that we needed to pick up the pace.

On a first glance I think we did a good job in the 10 minutes we had to alter the chair.   The vest seems to makes his trunk more stable, and the memory foam looks more comfortable for sitting.  I can tell one leg still thinks it wants to try to go left, but it has no option but to self correct now that his pelvis is more stable.  Part of it still could be from his desire to drive.  Overall I think those 10 minutes were a huge success.  I think that's the fastest time I've ever adapted anything for Noah.  Expert skills if I don't say so myself.

We also had a drive and walk-a-thon in our garage today.  Every so often we dig out the gait trainers, both a Rifton and a Kidwalk to see if Noah has any more desire to use them than he did the time before, and since we haven't really found a great place for Noah to drive, we do our best to allow him to drive around in the garage.  He of course gets most frustrated when we turn him around to go another direction so he doesn't just roll down the driveway.  I know he wants to be free.   I know he craves to move independently in any direction without influence from us.  
Noah in his Rifton
Noah in his Kidwalk
Noah Power Driving
And while Noah had a fabulous time in his power wheelchair the verdict on his gait trainers pretty much remains the same.  He thinks they suck.   Not a super big deal.  We still have the Upsee which he adores and allows him a walking experience.   Noah's interests remain really in finding ways he can move about in his own way.  And right now he seems to be very focused on trying to figure out how to add crawling the same time he rolls about.   Every time I think about that fact my heart and stomach sink a bit.  I still am feeling the tremendous sting from that Medicaid denial.  I cannot seem to get over that feeling of parental failure to help Noah.

I have to just keep hoping and trusting that when one door closes that another will open.  I just hope the other door doesn't take too long to reveal itself. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.