Tuesday, July 21, 2009

Thanks for the encouragement!

Thanks for the encouragement for yesterday's post... I'm still going strong. Woo hoo!

About Edda's brace, we are using Benik's arm brace. I love it because unlike the other brands that I've tried, it actually stays on Edda's arm. We are using the hinged model, which theoretically will allow for a range of motion of her arm while keeping the hand out of the mouth. However, we have it set on the most straight setting without any flexing because Edda's desire for mouthing is so strong that she manages to overcome the brace when it's allowed any hinged movement. Even with it most rigidly set, Edda still manages to get the tips of her fingers in her mouth, however, the spit and drool is significantly minimized. I needed to get our OT to place the order and it was about $85.

It's hard to explain Edda's mouthing to someone who has never met her. I was talking about it to a friend of mine at work, and she told me that I could use cayenne pepper to stop the mouthing and I tried to explain it wasn't like that, it's more like a weird magnetic, unthinking force between her mouth and her right hand. It's not something she does to feel better, it just is a thing that she has very little control over. Sometimes I really have to pull hard to pry the hand from Edda's mouth.

As a side problem with all the mouthing, this week we are struggling with wound control. One of Edda's fingers has blistered and formed a little wound which we have been trying to keep clean and dry for a few days so it will heal.

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The combination of the Benik brace and regular band-aids weren't working that well, there was no progress on the healing and the band-aids kept falling off, the tips of her fingers still got wet during the day. Today I made a CVS run, where I bought the super strong bandages and the tape and did this:

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And then finally, we put on a finger condom to try and keep all the bandages on. I put a more rigid brace (the one which always falls off) and the Benik brace both on hoping that the two would remain on her arm and keep her fingers dry. Here's Edda saying "$*!$#@ you Rett Syndrome!"

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2 comments:

Nancy Bea Miller said...

You're such a great Mom! It's great you are putting all this out there. Who knew?

sherah said...

I agree she is a great mom. Simply great!