A few fabulous firsts

My daughter C. has had several recent "firsts" that I've been derelict in relating. No valid excuse for that other than 24 hours just no longer suffice for me.

I 

C., my husband and I went to our local hospital to give blood for her first whole exome sequencing. Our own blood will only be used for comparison in the event that something comes up in her test.

The geneticist forewarned us that there's only a 20% chance of that happening. Meaning, the likelihood is we'll be left with the diagnosis we've lived with for over two decades, namely spontaneous mutation.

But since genetic testing is still cutting its teeth, there will undoubtedly be new tests available in the near future. C.'s blood will be stored for that eventuality.

II

C. has returned to the therapy pool - and to her regular, pink bathing suit - with a new hydro-therapist. As I grumbled here recently, her previous therapist ditched her because, as she explained, C. was stressing her out with her very occasional stressed seizures during sessions. .

So we tried out a new one which the school offered us. After two sessions with her, I believe I can safely declare her to be unequivocally perfect! 

Here she is with C. (above).

That beloved wetsuit I've been raving about is stashed away for now, unnecessary in the well-heated therapy pool. 

Besides, we're having a heat wave here and transporting C. in a wetsuit to the cooler pool where I work with her would be a torture for her. I'll miss giving her those longer 40-45 minute sessions. She only gets 30 at this school.

But the transporting is also a strain for my husband who is in the throes of a debilitating case of CMV.

III

C. went swinging for the first time in her life. We had a family gathering a couple of months ago where we discovered a swing suitable for children with disabilities. It doesn't accommodate a wheelchair but it was a treat nonetheless. 

So here she is (in the photo) discovering the sensation of swinging.

IV

The spiffy switch we'd been awaiting is finally here.

We've borrowed it from a local rehabilitiation center to try it out. If C. responds well we'll purchase one.

Here she is (on the right) pressing to trigger taped music and looking suitably engaged!

V

Unfortunately the "First" we're anxiously awaiting still - namely, having C. seated comfortably - has not yet materialized.

The modifications to the new chair which a physio-therapist at that same rehab center reccommended haven't arrived yet.

So C. is still suffering in her old, ill-fitting chair.

Meeting the merry-go-round

This week, at the age of 22, C. finally had her first playground ride.

Not that she hasn't been to playgrounds often. Most offered.the latest, trendiest equipment. But none of them had anything C. could use. After I mentioned disability-friendly public-space equipment last month [here "A small cannabis victory and a mysterious laugh"] and in August 2016 [here: "Still plagued by pressure sores, C. graduates"], I learned that in our hometown there's a wheelchair-accessible merry-go-round.

So this week we drove twenty minutes to the huge playground behind the city's zoo. The said merry-go-round stood alone among many other state of the art gadgets for the non-disabled. I only found it after a careful search because there's no sign anywhere to point it out.

C. isn't giving anything away, as you can see in the photo but it was truly a worthwhile outing. The ride, imported from the UK, was safe, easy to use and a real novelty for her.

Yesterday C. had her first hydro session in two weeks because the therapy pool had been closed for vacation. While I couldn't be there to watch, her caregiver took dozens of photos and it was clearly a success.

Back at home I snapped C. looking particularly beautiful:

But just to emphasize the cruel capriciousness of her epilepsy, within five minutes of that shot she was in the grip of a fierce seizure.