Thursday, May 2, 2019

Another shot at our wheelchair woes

After a long delay, my interview with a major local news station, aired. I spoke about institutionalization of people with disabilites and about raising a child like C. at home. 

I mentioned my recent guided tour of a local, large institution that houses 80 such residents ranging from infancy to 40 years old ["My plunge into activism"]

The avalanche of venomous comments my words generated on that station's website - some were downright ad hominem - shook me to the core. Now I wonder whether doing the interview was wise, notwithstanding the praise that a leading activist sent me. 

Anyway, no turning back the clock; I'll have to just weather it.

We have two important, much-deferred appointments approaching for C.

One, tomorrow, is with a physiotherapist who is a seating expert at a major rehab hospital in our city. We'll bring C. in her new, unusable wheelchair to ascertain whether it is salvageable via inserts and sundry adjustments. Since the chair can't be disassembled we had to book a special van from a local non-profit to transport it.

I've really had it with the old wheelchair we are now using - it's only slightly better than the frigging new one. Here's hoping we return home tomorrow with some sort of magic-seating-bullet.

The second upcoming and long-overdue appointment for C. is with a geneticist. The goal is to finally diagnose C. with something, anything, i.e. not only symptoms but an underlying cause -. rare syndrome, a random mutation, not fussy.
We hope, for one, to thereby relieve our other children of the worry and fear hanging over them with each of their pregnancies. We also hope to learn that whatever C. is afflicted with would respond -even minimally- to some treatment. 

Modest goals, right?

C. has been seizing a lot lately. Not quite status epliepticus but demoralizing nonetheless. 

Notwithstanding, she positively rocked again this week at my hydro session with her, after entering the water with seizures. 

Too bad we don't have a private pool to zap those seizures with every day. 

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