Annie's Wheels

Annie got her first wheelchair when she was just a year old to give her weak little body more support than a traditional baby stroller.  Little did we know then that ordering that first KidKart Xpress wheelchair was such a breeze!  Emotionally, it was one of the more difficult transitions, having to really face the fact that our daughter was so different and would require a wheelchair for the rest of her life.  Up until that point, she had looked like a normal baby--she didn't do the things a normal baby did, but she looked like a typical kid.  The wheelchair changed all that.  But it was a huge blessing for her, and we loved her KidKart.

Annie's KidKart--age 13 months

When Annie was 4 and had grown out of her KidKart, we ordered her a brand new Quickie Zippie IRIS.  This time, ordering her chair was a much bigger ordeal.  Little did I know about how detailed the customization would be.  Every single aspect of the chair was discussed with a physical therapist and our durable medical equipment supplier.  We were thrilled when it arrived!  It fit her so well!  (Of course at this point we had to get our modified van in order to now transport Annie in her wheelchair--at 85 lbs, the chair became impossible for me to lift into the back of our 4Runner alone.)

New Quickie Zippie IRIS (Intelligent Rotation In Space)

Annie--age 4

Which brings us to today in our little wheelchair history timeline.  Last July our orthopedist told us Annie's scoliosis curve had worsened from 18 degrees to 37 degrees.  Because of this, Annie had been developing pressure sores under her left arm as her spine has been tipping her body that direction.  The orthopedist ordered a wheelchair evaluation for us with the physical therapist and our DME supplier and instructed them to order a chair with a contoured seat back and larger lateral supports to help brace against Annie's curve more comfortably.

We thought we would be ordering a whole new chair, but our DME supplier explained how her current chair could continue to grow if we ordered just a new seating system for the frame.  Also, until we expanded this frame, insurance would not cover a whole new wheelchair (which costs over $8,000).  So again, we ordered a new seating system with a contoured seat back, larger lateral supports, a new butterfly harness, a new seat bottom cushion to help accomodate her leg length descrepancy, and a calve protector.  The entire chair was expanded by 2" for a wider seat, and longer foot plate extenders were put on to accommodate Annie's increasing height.  Last week, 6 months after ordering all this, the parts were finally delivered.

Our supplier picked up Annie's chair and took it for the day to install the new seating system.  He brought it back and we realized it still needed some adjustments, but we felt confidant in doing them ourselves, so we sent the supplier on his way.  However, even after making all our adjustments, Annie kept literally falling out of her chair.  It was just our luck that our supplier was off the next day, so Annie was without a chair for 2 1/2 days.  He came back the following day and spent 3 hours with me trying to brainstorm how to make this chair more comfortable for her and also supportive enough so that she wouldn't fall out.

Annie's chair, Jan. 2011, with the old seating system.

Annie's new seating system before our modifications.

Contoured back with very little support.

New calve protector so Annie's feet don't fall behind her foot plates.  (New foot plate covers to come soon!)

New seat cushion to accommodate Annie's leg length discrepancy.  The right leg cushion extension should have been about 2" longer than it ended up being--Annie's right leg is about 3" longer than her left, partially due to her dislocated left hip.  (This vinyl seat cover had to go too--otherwise Annie would be stuck to her chair in the summer!)

Front view of seat back cushion before we made our modifications.

Over a week later, we now think we have this chair working for her a little better.  We are still waiting on new foot plate covers to replace the ones Annie has put holes in.  And we just ordered a new tray that will better fit on her wider chair.  At least now when we do order Annie's next new chair, we'll know better what to get or not get. 

Our modified seat back cushion.  We lowered the entire seat back about 3" and offset the laterals in order to give her the most support against where her spine is curving.  We also cut out about 4" of foam from the seat back cushion to help get the lateral supports more snugly against her body for more firm support, thus the wrinkled cover now.  (I might be brave enough some day to cut into that cover and sew it so it fits better.)

The new neoprene seat cover so Annie won't be so sticky in the summer.  Wow!  It's so clean!

Never have we had so much trouble with a piece of equipment, and I would have never imagined that ordering a new seating system could be so difficult.  Hopefully we can either get Annie's scoliosis resolved eventually, or learn about an even better option for a wheelchair system that will provide her with the support she needs with a worsening curve.  Fortunately, we love our DME supplier and he's been so patient with helping us get what we need to make Annie comfortable, including making a dozen trips to our house!  It didn't help the stress level though when he moved to a different medical supply company in the middle of all this!  So once we get the new tray and foot plate covers, I think we'll finally be done with this chair.  For a while, at least...