It's been one week yesterday that Isaiah has had two new important tools in this house. Two tools that are helping him to get moving. One is just a demo (meaning not ours to keep, just to try out), is too big, but is giving us an idea of what we'd like/wouldn't like for Isaiah's official wheelchair (when we decide to order it...we canceled this week's appt to do that). The other tool is one that we all love, Isaiah's Scooot, and Isaiah is on the move in this baby.
Did you make the hallway longer, momma? It seems longer now.
I posted a similar picture as above to my instagram (you should be able to see it on the right side of this blog page if you're on a computer). We spoke to Isaiah's PT for suggestions on how long to have Isaiah in his chair and how to get him moving. She suggested just 10-20 min at first, 3 times a day, and trying to incorporate routines...I thought about it, and decided that instead of carrying Isaiah out of his room after each sleep, that he'd wheel himself instead. Given he had just rested, I thought it would be the best time. So far he's done this twice, yesterday after nap and this morning....and it's glorious. He's so happy and excited to get to his destination. He stalls at the bathroom announcing "bu" for bubbles (we always blow bubbles during his baths), but he's rocking this new routine. He keeps stopping to touch the walls and discover his house in a new way, by himself.
These tools are teaching Isaiah how to move and they are teaching us what's working for Isaiah. The wheelchair world is a whole new world. Exciting, but overwhelming. With a wheelchair comes all new vocabulary. It's vocabulary that I am already getting used to (I think), but I don't want you to get lost when I use it in future posts, so today I am going to share it. There will be a test on Monday so you better study. ;-) JK! This post may bore many of you, sorry, but I think it will be a helpful reference to us and maybe even to others that will start out on this journey as well.
Shopping for a wheelchair is like shopping for a car. First, of all, one thing you have to decide when car shopping is...do you want to drive a stick or an automatic?
In the wheelchair world, you have a manual chair, which is a chair that the user propels/pushes themselves by working the wheels, and there is a power chair, a chair with a motor that the user can move using a joystick (to be honest, I don't know enough about power chairs and am just calling it a joystick as it's how I observe it. Ask me again in 3 years and I'll know the proper term for it. ha)
We're working on getting Isaiah a manual chair.
Another thing you have to narrow down when shopping for a car is the make...like do you want a Honda? Ford? Toyota? Hyundai? Kia? I could go on, because there's so many to choose from and each one has a number of models to choose from and each one has its own features.....just like when searching for a wheelchair. It's wonderful that they are so many to choose from, but it can easily get overwhelming.
Thanks to other experienced OI families, we've been able to quickly narrow our list down basically to three chairs, give or take (ok, 5 chairs, but the other two are maybe off the list so I'm not posting about them.
I imagine you understand the first 4 rows of info in my little comparison chart....but if you're anything like me when I was first learning, you're thinking what the whaaaaaaat about those last two.
When we met with the wheelchair clinic at DuPont, they told us about reverse configuration. That (and camber) is in reference to the wheel placement; reverse configuration literally means the wheels are reversed. Usually when you see someone in a wheelchair, if you look you'll notice that the big wheels the user pushes are in the back and the little wheels, called casters, are in the front.
Like this, (thanks internet):
We thought we'd want reverse configuration, because it makes it very easy for Isaiah to reach the wheels (which is important with his arm length), but after talking to other parents, it really restricts turning. Going over even the littlest bump is very difficult too. We'll be sure to have anti-tippers in the front (so that the chair doesn't tip forward), but they won't help Isaiah get over bumps any easier. Bumps don't matter in our house as luckily our main floor is mostly all hardwood and there are zero transitions, but they matter if we visit other people's houses, stores, go out on concrete, etc. Also, reverse configuration means no popping wheelies; it's not possible. I'm ok with that, but Isaiah may not be. ;-)
Another wheel term is camber. Camber is the angle at which the wheels are attached to the chair...This awesome picture should help you envision it.
Not only will camber make it easier for Isaiah to push on a slight angle, but it'll make the tops of the wheels closer to him, making it easier for him to reach those wheels.
We have to figure out what degree of camber would be best for Isaiah, meaning how angled does he need the wheels? How angled can they go? Each chair offers more camber than others.
Plus we have to know what size wheels to get.
Beyond the wheels, weight is extremely important in finding a chair that's right for Isaiah. He needs the lightest chair possible. Isaiah's chair will likely be heavier than all of the weights listed in my chart because we know we have to add some supports, and with added supports, adds weight. The weight listed in the charts is just in reference to the frames themselves...it excludes the weight of the cushion, the head support, the wheels, the casters, the footplates, the anti tippers, the stroller pole (we'd have that in case he breaks his arm and can't push himself)...and Isaiah himself (and anything I forgot to list! lol)! You have to remember that Isaiah will be pushing the weight of the chair and the weight of his own body.
We don't want him overworking those bones, muscles, or joints. If he overworks them now, what condition will they be in when he's 20 years old? All this comes into our minds when trying to decide what's best.
Thankfully we have the help of Isaiah's PT, fellow OI parents, and the wheelchair rep, but just typing all of this makes my ears red. ha
The wheelchair rep that brought us Isaiah's demo wheelchair is working on finding us demos of the specific chairs we've listed. He does work with TiLite and Quickie, but not Panthera, so I am trying a new avenue that may offer that chair....wish me luck! I'll update on this exhilarating topic as I have updates.
The good thing is that all of this has me completely distracted from Isaiah's surgery. It's inching closer and closer but I am too focused on the wheelchair search to let it worry me. :)