We’re getting wheels...

Yesterday Grandma Josie and I took Jack to CHOP for an evaluation at the seating clinic. I went with a list of items I wanted to request for Jack. I wanted to request a special needs carseat because although he’ll be tall enough for a booster seat soon, he doesn’t weigh NEARLY enough to sit safely in one. I also wanted an activity/eating seat, and a special needs stroller (a bigger version of an umbrella stroller). He’s simply outgrowing all of the toddler items he uses!

I was a little nervous about driving, since Jason usually drives when we go to CHOP. Grandma Josie arrived bright and early at our house and we left for Philadelphia right at 8:00 am. Our appointment was at 10:00 am, but we hit some yucky traffic and ended up being a half hour late. I called from the car to explain and they we’re very understanding. Jack was such a good boy in the car — he was tickled that Grandma Josie with in the car and then he napped until we got there!

We met with Alan, a physical therapist with the CP Clinic, and Mike a vendor of special needs and medical equipment. They were great! They played with Jack and asked a lot of questions about how Jack gets around and noted how he really wants to be independent. They watched him walk with two hands held (we didn’t have his walker) and they were glad to see him so motivated to walk! We talked about insurance coverage and the rules about what they will pay for and how often they’ll pay for that item. Alan, the PT suggested instead of a stroller, we should see how Jack does in a manual wheelchair. You know at first my heart sank. I really didn’t think we were at the point in Jack’s life that we’d be making this decision. I agreed with everything the PT had to say. Using a wheelchair will NOT be confining for Jack. It will be liberating and he’ll be able to get away without mom’s help!!! Which is exactly what I want!!! I want him to “run” away while we’re in Wal-Mart...I want to have to chase after him! And he wants it too. So in situations where he isn’t able to crawl or use his walker, he’ll use the wheelchair. It’s basically taking place of the stroller — and giving Jack the freedom to move on his own. That’s something a stroller would not provide. While it’s still hard to accept, I know in my heart this is actually a GOOD thing.

We later moved to a room with tons of equipment! They tried Jack in the Britax Carseat which looks soooo comfy and will work with a child up to 105 lbs!




We also got a seat which works like a booster seat, desk, activity chair, etc. It’s nice and comfy and should work for Jack for many years. It basically just provides proper positioning for the best use of both hands, proper alignment of his back and trunk so he’ll be able to concentrate more on things like coloring and puzzles. It’s sort of like his booster seat he uses now, but much bigger.




Then we tried the cutest little wheelchair I’ve ever seen. Jack looked so good in it. It really looks like it was built for him! He didn’t know what to think at first...but when we showed him how to push on the wheel he giggled and moved back and forth a bit. Here is a picture similar to the chair Jack is getting. He sits up nice and tall and really, really looks great in it.




It’s going to take some time for Jack to learn to use his right hand to push the chair and we’re getting what looks like small pegs on the right wheel so he can push with a closed hand. It’ll take practice, but I am sure once Jack gets it, there will be no stopping him!

Okay, some common misconceptions about wheelchairs that I would like to clear up now. This is NOT “giving up.” Jack will still walk as much as he is now. This will only give him MORE independence. He WILL walk — EVERYONE is confident of this fact. He won’t lose any abilities by using a wheelchair. Many, many people with CP use a variety of equipment in daily life. Some walk at home with no equipment, but choose to use their wheelchairs for long distances and use a walker for shorter distances. Some kids with CP choose to use their wheelchairs at amusement parks or other places where tons of walking takes place. Even though it’s difficult to accept such a strong symbol of being disabled, I know this is what’s right for Jack.

The wheelchair is very small so our house will accommodate it nicely! We don’t have many steps going into the house, so we’ll just need a small ramp probably at the back door since that’s the door we use 99% of the time. Jack’s no where near potty training yet, but when the time comes there will be some bathroom modifications needed...and by that time he’ll probably get to the potty by walking.

Please feel free to ask any questions! I asked a lot at the clinic and they were so helpful in helping us understand how everything works. The equipment should be here in about three months. Insurance only pays for a wheelchair every three years. So another reason we didn’t go with the stroller is that’s also considered a wheelchair and then we’d be stuck with it until Jack is 6! This chair has room for growth so it should be exactly what Jack needs for the next few years.