new wheelchair part 1

July 21, 2017

Tough Guy is due for a new wheelchair so I find myself swimming in questions and research about wheelchairs.  Tough Guy’s very first wheelchair was his tiny little green zip zac chair.  When Tough Guy was about 6 months old, we saw a little boy on you tube zipping around his house in this ingenious little wheelchair that allowed the boy to reach his toys- it made them accessible so he could easily play!  When Dan and I saw it, we knew we needed to get that little chair.  It turns out that the little boy’s uncle made him this little chair and started a business.  We were in luck!  When Tough Guy was almost 10 months old he sat in his first little green zipzac and that was the start of his mobile independence.


Just like my typically moving children, Tough Guy began moving his wheels around the same time (12-14 months), that the kids started cruising and walking.  When he was about 10-11 months old he began doing back and forth movements.  By the time he was about 12-14 months he made slow, single complete pushes.  He then had major surgery when he was 15 months old.  But after an eight weeks recovery, Tough Guy got back in his zipzac and pushed himself from our kitchen to our living room and within days was all over our house.

The little zipzac chair was such a blessing.  Tough Guy would not have fit in a pediatric sized wheelchair at that age, so given the fact that he could have a chair that fit him at that as a baby provided him with the opportunity to explore and play just as typically developing kids do.  I really think this helped his spacial awareness.  That kid can parallel park his wheels better than I can even think about parallel parking my car!

As I mentioned above, Tough Guy had an intense bladder/pelvic and abdominal surgery when he was 15 months old.   He had a metal fixator in his hips for 7 weeks that limited his movement and our ability to carry him.   We were able to take him home for 4 weeks, but he remained in the fixator and he did not fit in his zipzac, so Tough Guy’s school stepped up and loaned us a chair that fit him!  It was a a Ti-Lite Twist, and while it was a bit big for him, he totally loved it and moved it with ease.

We ordered the same model of the Ti-Lite Twist and it arrived 6 months later, just in time for Tough Guy’s 2nd birthday.  If you’ve never ordered a wheelchair, you should know, the chair is customized and built for the users needs.  Every single part of the wheelchair needs a medical reason and a doctor and physical therapist must sign off on the chair before it’s ordered.  It is then sent on to insurance which reviews every aspect of the chair.  If there are any questions about why something is needed, the therapists provides more documentation.  It is a long and tedious process.

Tough Guy has rocked his little red chair for the past 4 years.  It’s been through splash pads, parks, dirt and everything in between.  It has had a replacement footrest and had been adjusted so many times that he is at the capacity of how large the seat will get.  He is ready for a new chair.  SO, the process has started again.  We’ve been to the vendor to try out chairs.  Last week we went to Seating Clinic at the hospital where we met with the vendor, the physical medicine and rehab doctor and a physical therapist.  It was long and Tough Guy was impatient, but we needed to measure his body and be sure every aspect of his new chair would have what he needs.  And not only is it what he needs now, but also in 5 years.  They mentioned his needs for prepubescent years and I about fell off my seat!  That was way off my radar!

The vendor has 3 different brands of chairs and recommends a chair called a Ki- Little Wave.  His current chair is at the Ti-Lite Twist and we have been happy with it, minus the fact that he has tipped forward in his chair several times. (These times have all been after adjustments we realized).  There are numerous factors to his chair that he needs.  1. It needs to be safe and comfortable.  2.  It needs to fit his need for independence.  Can he transfer out of it onto other surfaces?  Can he climb out?  Can he climb in?  Is he similar level to his peers?  Is it light enough for him to easily propel without fatigue?  And 3.  Is it light enough that I can easily get it in and out of the car?  And on a last thought, does Tough Guy like how it looks and feel confident in it.  (This is actually probably right in line with #2 importance.)  This is an appendage of him.  It is a tool, but yet, also connected to his person.  He HAS to feel good in it and it has to bring out his confidence.

To make the story of a very long process short(er) here we are.  I’ve been asking everyone I see what kind of chair they have, and I find that even more brands and some custom made chairs are around.  (These chairs typically aren’t covered by insurance, but every single part is customized for the user.)  This would be really nice, and I will keep researching these, but for now, we need to get one through insurance.

What kind of wheels do you use and what are the things you love about it or would want to change?  I know advice and first hand experience is the best way to find answers.

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