Monday, September 26, 2011

New Wheels

If you're a parent, I'm pretty confident that you can't imagine the concept of being excited over getting a wheelchair for your young child.  That is, unless you parent a special needs child who needs said wheelchair.  I can't imagine what it would be like to be suddenly thrust into the world of wheelchairs due to accident or injury, but in the special needs world, I can.  I can imagine it.  And I am excited right now because Peyton just got a brand spanking new properly fitted wheelchair for the first time!!

Let me run down a history of Peyton's mobility for you....

Peyton is five and a half years old.  She has never been able to sit on her own, stand, walk, crawl, etc.  In all likelihood, these things won't ever be a part of her existence.  Her world is spent in her crib, on the floor on her back on a safety mat, in a stander, or in a pediatric adaptive push chair {more on that later}.  She was born May 15, 2006.  Until February 15, 2008, Peyton's only form of mobility was a stroller.  But to have her sitting upright throughout the day was just not something she could do.  We didn't have the means.  Through a consultation with her physical therapist at the time as well as a sales rep from a mobility device company, we got her a "Special Tomato" brand adaptive push chair.  It's more or less an oversized stroller, but not a "wheelchair".

Peyton and Moira - February 2007
Moira called this Peyton's "Magic Chair"

The first time Peyton had ever played with a toy IN FRONT of her!
February 2007

At the time we got this chair, it was amazing.  It was fantastic to have Peyton up and off of the floor and being able to spend time throughout the day playing with toys in front of her.  Can you imagine a world that you only viewed laying down on the floor or in your crib??  It was amazing....

Until we really truly realized, hey, they just basically closed their eyes and pointed at a picture in a catalog to get this chair for Peyton.  Her needs weren't taken into account.  They got the size that would fit her, but it didn't address her physical needs!

This chair is HEAVY.  The purple chair part has to be physically removed from the gray base.  The base folds up like an oversized umbrella stroller, while the purple part just....is.  Both parts are very heavy and awkward.  We drive a Ford Edge and the base is pretty much the length of the floor in the back seat.  It will also lay flat in the back end of the vehicle.  But the purple part has to be laid on its back or side at an awkward angle in the back end of the vehicle.  When you have the chair in use, it's strapped down with a seatbelt to the base of the seat itself as well as around the back of the gray base.  The strappings/buckles are awkward to say the least.  The whole chair is cumbersome.  It's large.  It's purple.  Can I tell you how much I have grown to hate purple???

The Purple Chair
{fits well in our home, right??}

We tried to avoid an actual wheelchair at the time.  She didn't really need a wheelchair {I thought} at such a young age.  I wanted a stroller.  I guess I was kidding myself into thinking that the longer she had something like this, the less it would appear like she had disabilities.  Who was I kidding??  With a chair like this, people are sure to wonder what's up!!  A move across the country, a couple jobs and a few insurance carriers later, we decided to push for something that would be more functional for us.  So, Peyton's Medicaid case worker had recommended this push chair {again, not a wheelchair} that resembled a jogging stroller but would accommodate a larger special needs child.  It would have a canopy to protect her from the sun.  You see, we were very seldom ever bringing Peyton outside because there was no protection from the sun!  She has glaucoma, so she's very sensitive to the bright light of the sun.  It would be amazing because it would also have a basket under the seat for stowage of some of the many items which must travel with us anytime we leave the house!

So...we went about getting insurance approval for this new chair.  Our primary insurance denied it, but Medicaid picked it up.  Then we waited.  And waited...  I kept checking on the status of the order.  Backordered.  For months we waited.  All the while, we're stuck with the purple monstrosity we were growing to hate even more.  After nearly a year, we finally got the stroller around the end of January of this year.



Axiom Push Chair
Source: adaptivemall.com via Sarah on Pinterest

When I received the call that the chair was in, I was ecstatic!!  The company arranged for home-delivery.  When the guy brought the chair in and set it up, my heart sank so fast.  I wanted to cry.  I wanted to get physically ill.  You see, this stroller takes up so much space it was unreal.  It doesn't look as big as it really is, I'll tell you that!!  When it's folded down, it is so long there is absolutely no way it can fit in our Ford Edge.  None.  It's not going to happen.  Besides which, even if it would fit, it is so heavy that it is physically impossible for me to lift it!  It is absolutely enormous. It was supposed to have a kit to turn it into a 4-wheel stroller.  That never came.  The harness for this chair is so basic that it has absolutely no support for Peyton whatsoever.  I put her in it once to try it on for size.  That was it.  This chair that was well over $1,000 {paid by Medicaid} was folded up and put away, never to have been used once since we got it eight months ago!

Then the devastation set in.  You see, insurance only authorizes wheelchairs once every 5 years!  Imagine how we felt!  We fought and fought and fought.  Nothing could be done about this horrible mistake.  I was furious with our case worker for being the one to recommend it.  I was furious with the company for refusing to take it back because it was special order.  I was furious with the manufacturer who apparently went out of business.

Long story short....since the chair was picked up by Medicaid {secondary insurance}, I thought, well, what if we could get a properly fitted wheelchair {yes, I said it...wheelchair} approved by the primary insurance.  If it never had to go to Medicaid for payment, maybe we could still get a chair for Peyton.  Her current PT was totally for her getting a wheelchair all along.  I finally caved.  A wheelchair wouldn't have a sun canopy.  But it would have the proper physical support that Peyton now requires that her purple chair just doesn't have.  I figured if we were going to push for a big ticket item, it might as well be exactly what Peyton needs.  So much for the great outdoors.

As I said, it has taken several months, but about a month or so ago, we found out that a new wheelchair was approved by our primary insurance {and Medicaid...I guess all our fussing over the horrible mistake over the push chair got them to over-ride the 5 year rule}.  On Friday, Peyton became the proud new owner of a properly fitted custom wheelchair!!

SO excited about Peyton's new wheelchair!
 
Check it out - it's even embroidered with her name!

Peyton was dressed up for the occasion
{from all appearances so far, she does like her chair}

New vs Old
Peyton checking out her old chair

Check out the size difference!
We are truly excited about her new chair.  It fits her perfectly.  It also has a tray {not pictured here} so she can have toys in front of her.  The front wheels light up with blue, white, green, red and yellow lights when they are rolling!!  How cool is that?!?!  The chair is less cumbersome to navigate.  I can only imagine {haven't tried it yet} that it will be a much easier chair to navigate on and off elevators at the hospital!  Is it heavy??  You bet.  Does it have to be disassembled to put in our vehicle??  Well, depends on who you ask. If you are Ron {my husband}, the answer would be NO!!  It can be lifted into the back end and tilted on it's back or side with only the little anti-tipping wheels {the long black things sticking out at the back by the big back wheels} and foot rests removed.  Now, if you are me, then you can lift it into the back end using all your strength, but once it's on the carpet, then it becomes impossible to slide across to push it back.  Disassembling it is much different than the purple chair, but it's pretty quick and painless.  The base folds down and has a strap in the middle you can lift with.  The base on its own is still very heavy, but manageable.  The chair portion isn't bad at all.  And it takes up MUCH less space altogether than the purple monstrosity.  We haven't tried the chair out anywhere but at home yet, so we'll see how it goes next time we have to go out!

Long story, for sure...but it could have been longer!  I did spare you lots of details!!  I just wanted to share with you that through perseverance and prayer, we were able to finally get a piece of equipment that Peyton desperately needed.  By the time we got this chair, she really and truly had outgrown the purple one.  

We are blessed beyond measure to have this new wheelchair for Peyton.

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