Working on Wheels

This past Monday Eden had her first evaluation for a power chair, as well as a boatload of other equipment. The appointment took 2 1/2 hours, and she was amazingly good considering how long that is for a 3-year-old!

Edie got to try out a demo chair that they had available, and you should have seen her little eyes light up when she figured out that she had the power to make it GO! At first, she could only make it go backwards, but within just a few minutes she figured out how to move forward. She went down the hallway, and out the front door with a little help keeping it straight. When the door opened and she went outside she exclaimed "WOW!" Very cute. I am betting that once she actually gets her own chair, it will be merely a matter of hours before she is cruising in her chair.

The chair we tried was the Quickie® Z-500™. It is just one of the options we are considering. Others include the Power Tiger and TDX Spree by Invacare, and the Koala and K300 by Permobil. We have another appointment a week from Monday to try the Koala, although with our insurance situation it might not be an option. We are actually leaning toward the K300, but because it is new we can't try that exact chair. There are pros and cons of each, but the K300 seems like it might be a good option for Eden, and it comes in PINK, which is not a MUST, but is definitely a BONUS!

We've also started the process of ordering Eden her own Pony Gait Trainer, a bath seat, an adaptive potty, and we're looking at a couple of seating options. Everything we have been using up until now is borrowed from either the private physical therapist, or from the school district. It's scary ordering equipment. It's SOOO expensive, and once you get something you are stuck with it, even if it doesn't work out. I am not sure, for example, if Eden could sit well on the Leckey potty I linked above. We have a little yellow potty seat borrowed from the PT that she sits GREAT in, but the company doesn't make that one anymore, and the equipment supplier we are working with doesn't work with that company anyway!

I would pay for this potty chair myself if I could, because Eden has been using it as a chair in the sandbox, and on the floor. It is perfect in terms of letting her sit at the same level as Holland, with just the right amount of support. I've thought of having my mom make a cushion for the bottom, so you can't tell it's a potty, and she could even use it as a floor sitter at school to sit in circle time. So many of the other options that are available are quite exclusionary, and difficult to get her in and out of.

While the wheelchair is a great thing for Eden in terms of giving her more mobility and independence, I hope that she doesn't start refusing to use her Pony. I also don't want her to end up sitting in the chair ALL DAY at school because it puts her so far away from the other kids. My goal is to keep her at the same level, doing as many of the same things as the other kids as we can. This is much more difficult than I anticipated. Even in her little speech group at school we are having a hard time coming up with good seating options. The little chairs that they have available for her to sit right up at the table with the other kids are turning out to be too hard for Eden to maintain, as well as not supportive enough for her to use her hands because she works too hard to try to stabilize herself. It's going to be a balancing act in more ways than one.

I have to give myself permission to let some things go. She is different. She's always going to be different. There are always going to be some things she just cannot do. And that's OKAY. A lot of things are worth fighting for, and I will fight when I need to.

But sometimes you just have to let it go.