Saturday, November 5, 2016

An Afternoon in the Seating Clinic

Mira was having a fantastic week, all the way up until Thursday. Our busiest day turned out to be a rough one for Mira. She was fine when she got up Thursday in the morning, but had a huge tonic-clonic about 8:45am at school, then had another one about an hour later. These 2 seizures completely wiped her out for the rest of the day. Unfortunately, it was very bad timing, as we have had Mira's seating clinic appointment on the books for 3 months now, and we had to take her in that afternoon. She was having a significant bout of dystonia - her legs rigid, her torso and back damp from her body temperature being out of whack, and very altered overall. We couldn't get her to do anything but slouch in her chair for the entire appointment. Poor kid - she wasn't fussy at all, but suffering with the aftershocks of the earlier seizure activity. 

As far as the appointment went, it was fine. Perhaps there was enough water under the bridge from our last experience with the DME company (it had been 4 years) but it was still mildly awkward. The irony was, that we had originally gone in to the clinic to order a lightweight stroller for Mira, one that we could lift easily in the back of the van, and we walked out ordering a stroller and a new chair. We did not realize that it had been over 4 years since we actually took possession of the chair she is in now, and after discussing all of the issues we had been dealing with over the past 6 months, we decided to get the ball rolling on getting her a new 'permanent' chair. The clinic said appointments are 6 months out, so it just made sense to just move forward with the process now, while we have everyone in the same room. Her new chair will be similar to the one she currently has, only the frame will be longer to accommodate her future growth. Height wise, she has maxed out the seat and frame of her current chair, with zero options to expand it any further. This is the first step in this whole process and I sincerely hope it does not get derailed down the road, as we have run into so many times before with this company.

Mira has been doing much better over the past 2 days - her appetite is back and her dystonia has subsided. She has been very quiet and sleeping a lot.

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