Made of Gray

Neuro, GI and Kaye

Holly D Gray5 Comments
Last week we went to our neurology spasticity clinic. At the neuro office we talked about Caleigh's legs. They are both turning in slightly, her heals don't touch the ground and her knees hyper-extend. You can see photos and the post of that here

We talked about all the options. Casting, Botox and surgery. Both orthopedics and neuro don't feel that casting is a good option for Caleigh. So in two weeks we will go to the Botox clinic for Caleigh to get one vial injected in two calf muscles and the muscle that runs down the inside of the leg. This will help the knees, the turning in and a little bit of the achilles issues. This will hopefully postpone surgery. Another thing to point out is that doing Botox is completely optional. We have up until the last minute to back out. So if you have any stories bring them on. The results only last for 3-6 months, and then we would have to go back in to re-inject the muscles. It's scheduled, so we'll see. 
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Another thing we talked about is Caleigh's sleep or lack thereof here lately. It's pretty exhausting for all of us. She'll have one good night followed by a night of up and down every thirty minutes. Some days she will gratefully take a nap instantly upon laying her head down. Some days she will yell and refuse. The way Caleigh's guts work really requires her to have a nap everyday to make it through the afternoon. Sometimes she wakes up in pain, almost wincing. Sometimes she wakes up scared or after having a bad dream. We've tried moving bedtime, bathtime, naptime, etc. Nothing works, nothing sticks. Ever since the February growth spurt she's been all off, and the odd sleep pattern seems to be one of the last things hanging on. 

Just to be safe we requested an EEG. Caleigh has been off of seizure meds since the summer of 2009. That's huge, but the chance for them to return is always there. I really don't think that this is seizures, but you never know. 
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We also backed down on the Artane last week to see if she really needed it, and two, to see if it was causing the sleep issues. We learned that, yes, indeed she needs that medicine to work through her dystonia, and no, it wasn't causing any sleep changes. She is back up on her full dose again. So as far as neuro goes we will see how the EEG looks, but the sleep issues don't look to be medicine induced. 

We went to GI two days after seeing neurology. We questioned the fact that she vomits her medicine two out of three times a day and sometimes it seems that she is having reflux symptoms. She has even mentioned her chest hurting. Caleigh has been off of reflux meds for a couple of years now. She wasn't symptomatic, her scope showed no damage, and reflux medications have been known to actually cause intestinal bacteria; something she doesn't need any help with. 
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After an in office stool test, there was quite a bit of blood showing up. So we decided to start with Nexium and work from there. Luckily, Nexium has dextrose as it's sugar base, which she can handle. There is probably a lot of upper esophageal bleeding going on. So that might be where the blood is coming from. Also, Caleigh's g-button is extremely sore. The outside is ok, and looks good. The pain is coming from the inside. Probably from acid issues, but we wouldn't be able to tell without a scope. I think this may be why some of her waking up seems to be in pain. The first night on Nexium was extremely promising with a full night of sleep and a nap the next day. She acted like she felt better, but each day since has proved to be not so lucky. Although the vomiting is much better, we don't have any answers yet. Another scope may be in her future.
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The new chair that Caleigh is sitting in is called a Kaye bench. We actually had the bench, but the seat positioner and the desk were bought for Caleigh through DARS. So far she is sitting in it wonderfully. If the desk top wasn't in place she wouldn't be able to use the bench in this way though. It's another tool in our arsenal of positioning devices to keep things in line. The desktop is usable with all of her other equipment as well; it's extremely adjustable. As you can see in the above photo, Caleigh can stand up and then sit back down in it. Total supervision here, but up and down on her own nonetheless. I'm excited about the homeschooling and play possibilities with this setup.
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