Made of Gray

A New Set of Wheels

Holly D Gray11 Comments
Today was such a big day for Caleigh.

This morning we got up. Grabbed some coffee and headed to the showroom of our durable medical equipment supplier.
SeptCoffee
{I swear my husband has a smile, but throw a camera in his face and this is what you get}

Today was the day that Caleigh was fitted for a wheelchair. Whatever you call it...travel chair, adaptive stroller, feeding chair, positioning chair...it's still a wheelchair. It has wheels and it's definitely not a stroller.

I've dreaded this day for a long long time. In my mind, a wheelchair is a sign of a person that can not walk. I've learned that isn't necessarily true. A wheelchair can be for someone that can't walk long distances easily or can't stand for a long time. The possibilities and reasons are endless. Even so, it's my baby girl in a wheelchair and it's just something that I will have to wrap my head around. I will say that just because we have decided to get Caleigh a chair doesn't mean that we have given up on her independent mobility. I will never give up. The chair is meant to be a convenience that can support Caleigh better so that she can strengthen her weak points. Plus, she weighs 27 pounds and me being only 5 foot tall (on a good day), it's just getting hard to transport the princess.

I have plenty of people to thank for helping us with the decision. I don't think I would have started thinking about a chair if I hadn't seen Kendall sporting her awesome KidCart and seeing how supported she was. And for Kendall's mom, Jocalyn, that made it ok to have a chair. Meeting Barbara from TherExtras and talking about the options plus reading her series on wheelchairs really helped. It gave me the state of mind to ask for a visit to the DME showroom instead of them coming to our house. Our PT was a big supporter as well and went with us to the fitting.

Wow, I'm starting to sound like I won an Emmy. {I'd like to thank the people} Actually, it kinda feels that way. Today was an Academy Award kind of day with Caleigh.

We got there and tried out Caleigh's new stander, which will have to be another post. After we were done with the stander, the rep brought out 5 traditional stroller type chairs. It was great to see them all lined up and I must admit that most of them were just plain ugly, but that wasn't that point. Which one would help Caleigh the most? After going through all of the features on each one we decided on the Leckey Squiggles With a Kimba Spring Base. We are also going to order the high/low base for the house. We were told our insurance and medicaid doesn't pay for the high/low bases and we would probably have to pay the $1500 for that. We will try other resources before paying and we are praying that funding will come through.

So after we decided on the Leckey chair we walked over and looked at 4 pediatric power chairs. After going over the specs and features of each one we put Caleigh in a Permobil K300 for a spin, just to see what she would do. Looking at power chairs is kinda like buying a car. The chairs can cost anywhere from $10,000-$25,000 depending on what options you get. There was talk of rear wheel drive as opposed to front wheel drive. Battery life. Hey, kinda like a hybrid. Oh, and they weigh about 250 pounds!

Seeing Caleigh in this chair changed my life. It took a whole 2 seconds for her to figure out what the joystick does. The moment it 'clicked' she smiled and then ran the chair straight into my legs! After all, the goal was to get mommy.... I teared up, literally she was moving and moving fast all by herself for the first time in her life. How liberating for her. I started dreaming about her driving herself up to her classroom and how different that would be from me pushing her there. The mental, self-esteem and emotional capabilities could be endless.
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{Not the greatest photo ever, but this is Caleigh in the Permobil Power Chair}

The chair wasn't fitted for her, just a demo, so she had a little trouble reaching the switch and her feet were hanging instead of securely positioned. After a bit she was ready to get out and we started talking about the possibilities of Caleigh having a power chair. The Permobil is front wheel drive so she would be able to go over thresholds, grass, and gravel at the park. Places that a regular wheelchair might not be able to go.

So the plan is to order the Leckey manual wheelchair and as soon as that comes in the paperwork will be started on the power chair. Apparently, it's a tricky thing trying to get insurance and medicaid to pay for two chairs. If we order the Permobil first then they would deny the Leckey. So through all the red tape, we are looking at 6 months to a year on the power chair and about 2-6 months on the manual chair. I'm glad we started now, but who knows it might go faster.

I'm sure there will be obstacles along the way for us, but if your out there debating a chair for your child....do it, it will change your life and your child's life for the better. Plus you will have 2-6 months to get ready and wrap your head around the notion. {A little PSA from Holly Gray}

We came home with the new stander and then had an appointment with an ECI physical therapist to make an insert for Caleigh's high chair.

All my fears and dread are behind me. I couldn't stop smiling from the experience with the power chair. I was teary eyed and wired the whole way home. I can still see that smile on her face. What an amazing day it was.

PDF Brochures:
Permobil K300
Leckey Squiggles Seating System

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