Sunday, April 10, 2016

This Week

By comparison, this week was a little calmer than last week. I did have to travel down to Louisiana mid-week, but it was a relatively short trip. Things were fairly quiet for Mira most of the week - she had her usual fussy spells late in the day, but nothing out of the ordinary. Surprisingly, we have not seen a single tonic-clonic for over a week (or any other seizure activity for that matter) and have only witnessed a minimal amount of myoclonics. She hasn't been having any at school either, which is fantastic. Her eye-rubbing on the other hand, has been relentless. She has been doing it a ton at school, so much so that her teacher and paras are having a difficult time keeping her glasses on. We are seeing an equal amount of rubbing at home, even while she is indoors. I am at a loss as to what to do about it - redirection only works so many times, then you just have to let her go and get her fix. In the car, especially if it is just Sarah or I driving with Mira alone, it is very difficult to control. On road trips (even on short trips I have considered it) we have had to resort to putting a towel up over the window to keep her from rubbing so much. Mira's drooling continues to be an issue too. Out on our walks, she is just creating so much of it, I have to keep a hand towel in one hand while I am pushing her. It is just becoming routine now.

Pieces and parts are falling off of her chair lately, especially this week. I would have to go back and look to see just how long she has been in this particular chair, but I think it has been at least 3 years, maybe 4 or 5. I have lost all track of time - all I know is that we had an awful experience with the seating company to get this chair and I refuse to deal with them unless we are desperate. They have monopolized the competition in this area and they know they can provide terrible service and you just have to suck it up and deal with it. Durable medical equipment companies are a thorn in my side. Anyway, the straps on her chest piece have been breaking off and then on Friday, the casing around her lap belt broke off. We went hunting online to find some replacement parts and think we managed to find a couple of different types that will work for her chest piece, but it will be difficult to replace her lap belt cover. The belt still works fine and is safe, it just doesn't have a case around one side. It simply looks junky. The parts should come in within a few days (thanks Amazon Prime) but we will have to hunt deeper for the belt.

We managed to go out for an early dinner, thanks to grandma - she invited us to one of her favorite spots and Mira actually did really well. She became fussy at the very end of the meal, but chugging three bottles (one every 10 minutes or so) which kept her entertained and occupied. The restaurant wasn't very busy, which certainly helped Mira stay calm - even quiet enough that Mira dozed off for a few minutes at one point.


Reagan Leigh said...

Have you tried using arm immobilizers on her? We use them with Reagan, especially when she's doing a lot of face rubbing or she's upset and were afraid she's going to bite herself. Sometimes I think it's soothing for her to just have her arms controlled when they're so restless like that (we'll usually put them on her and then put her weighted blanket over as a secondary measure). Sometimes just the weighted blanket works, but sometimes we have no choice but to use the immobilizers. Reagans are actually double reinforced (they add a second bar on the inside) because when she gets her super human strength, she easily bends the regular ones! Is highly recommend the immobilizers as well as a weighted blanket.

Marc said...

We haven't tried those yet and that is certainly an option - she hasn't been doing it quite as much this past week, but when she does, she won't stop. She is very determined at times!