Made of Gray

The Joystick

Holly D Gray6 Comments
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Monday we got a loaner joystick for Caleigh's powerchair. We've been practicing like crazy with it since then. Right now we can still hook up the proximity switches, but we haven't needed to do that. The joystick is so much easier to maneuver for us and for Caleigh. We have forward set up so that when Caleigh pulls back on the joystick it will go forward. Pushing it forward makes it go backwards. This is so forward is a more purposeful movement instead of letting her extension tone move her along. This was my idea so it may or may not work out. Caleigh can also control the speed of the chair by how hard she pulls on the joystick. That is something the switches couldn't do.

We are waiting on the right bracket so that the joystick can be in the perfect location for Caleigh. I'm pretty sure I know where that is now, but we'll see. Even though the stick isn't exactly in the right location, Caleigh is still doing really well. Her pincer grasp is getting really good and she is holding her head up more. All good things.

The concentration frown line Caleigh has in these photos is the general look during our driving sessions. She is so focused on moving the chair. There is definitely determination there.

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In other Caleigh news, we didn't actually need to start her ulcer medicine back up last week. Of course, I posted about the excessive diaper situation and the next day she only went once. So we decided not to start it back up. Things have calmed down so maybe Caleigh had a little bug or something. We are always guessing with that tummy.

The ball is now rolling on the intensive physical therapy that we have wanted to do for Caleigh all year. There is now a local clinic doing the specific therapy. We are trying to work out insurance and just the general cost of such a thing. 3 hours a day, 5 days a week for 3 weeks. It adds up quick. I'm working on a bit of an online fundraiser so watch for that soon.

Artane update: It's going well, really really well. Caleigh's movements are more fluid now. We can tell just how intense they are if we are late giving a dose or first thing in the morning. The medicine has really made a difference. We still have a way to go on getting to the full dose. Most children have bad side effects including depression, psychotic outbursts and night terrors. So far Caleigh is happy. Happier on the medicine than off. She's less frustrated with her body at this point.

This coming week we go see the GI doctor. It's been a few months so it should be interesting to see what he says. Other than that there are therapies as usual and Christmas to get ready for.
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