In No Particular Order

I’m starting to wonder exactly when I’m going to get back ownership of my brain–it doesn’t appear to me any time soon. It started with deciding to enter the art expo and while that event has passed, the craziness has not.

We were in Plano last weekend and this weekend we had house guests. We had two appointments at the hospital today, we visit the eye doctor tomorrow, and next week we’re off to see the physiatrist.

We had a sleep-deprived EEG this morning. I swear, no matter how little sleep he gets, putting Charlie in that environment always makes him hyper. They give me dirty looks every time and meanwhile I want to lie down and take a nap because I’m sleep-deprived too. These things always feel full of anticipation, but the reality is that Charlie has abnormal brain waves, and unless he starts seizing again, we’ll probably maintain the status quo. Doesn’t mean I won’t worry until I get the report from the epileptologist, though.

After that we headed downstairs to have Charlie’s hearing checked and his ear tubes examined. He actually responded to some of the sounds this time. He does appear to have SLIGHT hearing loss (he can hear down to 25 decibels and normal is down to 20), but no one is worried about his hearing at all–least of all me.

Tomorrow we go see the eye doctor, which might be interesting, but could also just be a big waste of time. Our neurologist is pushing for an assessment for eye surgery, but I am completely unconvinced that this would be an appropriate tack to take. I mean, his eyes have changed dramatically in the last six months and I would hate to start messing with them while they’re still changing.

I’m also a little worried that next week people are going to start talking Botox for Charlie. Charlie’s hamstrings have been tight from day one and while they don’t appear to have changed much, his PT is worried that they are impeding his ability to stand and shift weight properly, so she’s going to go with us to our physiatry appointment next week. I think a bigger culprit is the fact that we are currently without a stander OR a gait trainer, but nobody asks me what I think. I’m not sure how I feel about Botox–I mean, it’s not permanent, but it is painful. It would give him a chance to use new muscles, but I just don’t know. I’m undecided. Now, if they wanted to Botox the thumb on his right hand I might be interested in that. Hamstrings, I just don’t know.

Well, that’s what we’ve been up to–I let you know if I ever find out what I did with my brain.

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  1. Shannon says:

    I know you are on the fence and every child is different…but Botox has seriously changed Darsie’s life, at least for the last three months. It was painful when the shots were administered and she had a couple of times afterwards that her foot hurt but she gained so much range of motion. BUT, like you know, you know your son better than anyone else. Only you can make those decision for Charlie.

    Sounds like you’ve been busy! ((HUGS))

  2. Barbara says:

    Glad I waited to comment – I was feeling very optimistic for your appt with the eye doctor. So glad that went well. I agree with your answer that good head and neck control contribute to better eye control.

    I am not in the crowd that questions your sanity.

  3. I just wish that I felt strongly one way or the other about Botox–I’m just so MEH about the whole topic.