Saturday, January 22, 2011

Power Wheels

It's very evident that Emma wants to keep up with her peers - she wants to go where they go.  We were lucky enough to get a KidWalk gait trainer for her in late November and I'm thrilled to report that she is starting to take a few steps independently in the KidWalk.  Everything she is doing makes me believe in my heart that she will walk one day.  Lately, though, I've come to the realization that day is a bit farther out into the future and will not likely be her main mode of mobility.

I've been in conversations with Emma's PT for about 2 years now around power mobility for her.  It all started with a research study at the local university that is studying the impact of power mobility on very young children with motor delays.  They have even demonstrated that children younger than 1 year old can benefit from power mobility if they are unable to get around independently.  I spoke with the researchers and they felt Emma would be a great candidate for power mobility.  Emma's PT agreed to start tsting Emma's power chair readiness with the Cooper Car.  You can see a video of her in it here.

Recently I've stepped up the conversation around a power chair for Emma.  It's obvious to me that Emma will not learn how to function a power chair by spending 10 minutes in the Cooper Car each week.  She is not learning stop because when she can only go for 10 minutes a week I think there is ZERO reason for her to want to Stop when we say so.  I really think she needs a lot of time with a power chair to learn the Stop/Go concept and demonstrate that she is ready for one so we can get the insurance to cover the chair.

I discussed this with some friends and the offered to let Emma test out the power chair they had for their son.  We met at the hospital because the halls and the space there are great for testing out power chairs.  Emma fit perfectly in the chair and seemed quite pleased to be sitting in it.  The controls were on the left side which is the worse of Emma's two arms, but she still had a lot of fun moving the chair around in circles.  I was able to get her to move up and down the hallway with minimal assistance.  While looking at the set-up, Emma might do even better with a different joystick set-up and possibly have the chair move forward when she pulls the handle back and go backwards when she pushes forward.  But, overall, Emma did much better than I expected.

I don't have great videos of Emma testing the chair out because I was monitoring the kill switch (it shuts the chair down when I push the button) in case Emma drove a bit crazy and I was trying to help her out and take the video with my iPhone.  Here is a brief video of Emma going in circles in the chair.

Emma will get a chance to give the power chair a more thorough test over the next couple of months because our friends are generous enough to lend it to her for testing.  I'm looking forward to seeing how she progresses in the power chair and deciding if now is the time to start the process of getting her one.

The one thing I do have to say is a power chair will require an adjustment to our lifestyle.  We will need to map out handicap access to all our favorite places because you cannot just pick up a power chair to go over a curb.  We will also have to determine the best way to transport the chair (minivan access in our future?) and a host of other issues.  But for now we're taking it one step at a time and looking forward to the possibilities for independence the power chair could give Emma while we continue to work with the gait trainer and her crawling.

7 Comments from readers:

Holly said...

You know my thoughts on this! I love power mobility for many reasons. Just like kids learning to walk in one day perfectly doesn't happen; neither does driving a powerchair. I would take that video and move forward as soon as possible. It takes practice and all the other issues will fall into place. It's normal to do circles for months as well. Our ordering PT just needed to see the will to initiate movement. Emma has that.

Go get'em mom!

laura said...

Love it. I've been itching to find access to a power chair for Cody to try. His PT says that they don't tilt like Cody would need for his head control but I really just don't think she has the experience enough to know. I've seen plenty of video proving otherwise.

Emma looks great in the chair. I see no reason why this video alone wouldn't be enough to move forward with trying to get funding. Look at how well she navigates the crawler around the house. The girl wants to move!!

Good luck

Laura G

Angela said...

I love how you can see how proud Emma is of herself by just looking in her eyes! I think of power mobility, but it is like anything else it takes time to learn.

But don't give up on Emma walking one day, she can do anything she wants :)

Karen Owens said...

This is funny because you know -- I could have taken this video for you!!! I didnt' realize you were taping. It would have made things a bit easier :)

Can't wait to hand over Gavi's chair into emma's hand for a bit!

Erin said...

great video. i am so impressed on how well emma sits in that chair, but less moves it. go emma! we demoed a chair for fletch, i guess it has been over a year now, but the demo didn't support him well enough, so it was a pretty useless trial.

good luck as you proceed down this exciting path!

AshleyS said...

Okay, I'm dizzy now!!! LOL!

Clayton likes to go backwards a lot as well. Must just be a great sensation for them. I agree with you that they have to have long term exposure to the chair so the excitement wears off. This week has been good for Clayton as far as that goes. He is concentrating more, but still has a long way to go!

AshleyS said...

Tell Laura that of course they make some that tilt--you see adult quads in them often because they have no neck control . . . that PT needs to do more research!