Made of Gray

Power Overload

Holly D Gray4 Comments
I'm exhausted. Like, literally can barely lift my legs off the couch. The end of the week with Caleigh's new and fancy ride has been a busy one.

On Thursday, Eric and I figured out the suitcase ramp enough to load the chair into the van without killing ourselves and took it to OT. We played with switch placement and tray options, but really didn't get anything solid panned out.

On Friday, we had our yearly pulmonology appointment. We decided to take the chair with us. We parked, unloaded {once again without killing ourselves} and made it to our appointment on time. We gave Caleigh the forward switch and we kept the right and left for us to maneuver. Caleigh did awesome with the chair set up this way and we didn't run over any innocent children in the process. Although a women who wasn't paying attention almost ran into Caleigh, but quickly apologized. Every thing went well with the appointment. Caleigh's lungs are great, so we will go back for a follow-up in a year.

I got what I thought was an amazing video of Caleigh cruising through the hospital. Unfortunately, I turned the video camera off instead of on. So the priceless look on her face, the one full of joy and pride, is now just in my mind.

Every time I go to take a photo or catch a video Caleigh tries to drive off a curb, hit something, go the wrong way, or just generally freak me out. I'm a nervous wreck with this thing. I'm naturally a worrier, but Little Miss Independent doesn't want to listen to her mama anymore. It's a powerful chair, 200-300lbs and all I can see is her flipping it on top of herself. So I try to stay at her side and I keep the "kill" switch close by at all times. Caleigh's attitude about the whole thing is completely that of a 3 year old. She yells at us when we cut the power off. She gets mad if we try to guide her hand to a switch. She wants to do it her way and all by herself. It's very tiresome because she doesn't know how dangerous driving the chair can be.

Adding the powerchair to the mix makes everything else we have to do during the day that much harder. Preschool, therapy, gait trainer, stander, crawler, swinging, and actual play and relax time... Now we have to throw powerchair driving into the schedule. Maybe if there was a few more hours in the day we could fit it all in?

Another issue we are having is head control. It isn't even really head control. Caleigh watches Eric and I move the switches around on the velcro pad all day long. We are still trying to figure out their position. So she grabs the switches trying to pull them off, which subsequently makes the chair go. When they don't easily come off for her she holds her head down and pulls. Still the chair is going and she has no clue where she's headed. She is also a big fan of licking her hands in this position. You know, while she is already there....It's hard to get her head back up at that point. We've tried tilting the chair back, but that wasn't received very well. She definitely gave us some attitude on that one.

I know she will catch on in time. It's only been 4 days, but I feel like we have been fighting for 4 years! I think she finally realizes that she can do this. It's her's and she is in control, or so she thinks. Caleigh doesn't have much control over things. That's why the iPad was such a huge success with her; it gave her control to choose. She's a very stubborn little girl. So we will suck it up and continue the daily battle of the wills until Caleigh is a pro. It will happen. Hopefully sooner rather than later.....
Related Posts Plugin for WordPress, Blogger...