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.

Still plagued by pressure sores, C. graduates

The inflatable mattress overlay I mention in the post. The cylinder
on the right is both container and pump.

The pressure sores are sprouting like mushrooms after a rainstorm. I now spend 40 minutes daily re-bandaging six of them, with one a double header. Every small sore  blossoms into a whopper.

So I finally contacted the pressure-sore expert whom our pediatrician had recommended (yes, at 21, C. is still in his care; more on that later).

He was very responsive, requested photos of the sores, ordered fresh blood tests along with a visit by an occupational therapist in order to have C.'s sleeping and sitting equipment evaluated.

While in waiting mode, the Hubby took C.'s malfunctioning air mattress to our equipment lending center for replacement. He was told that it was actually a useless model and we were upgraded to the inflatable mattress overlay in the photo above (from here).

We were also told by the expert there that we must limit C.'s time in her wheelchair. She should  be seated only for meals, spending the rest of the day either lying, standing in a stander or sprawled in a bean bag. Live and learn.

But until we can get that new equipment, she still sits quite a lot in her wheelchair.

Today, still awaiting a response from that kind pressure sore doctor re the photos and blood results, I called his clinic. Lo and behold, the kind doctor has disappeared on an overseas vacation that will last until the end of the month but didn't bother to share that with me five days ago.

So I made an appointment with his substitute for this week and will update afterwards

Along with the pressure sores, we have embarked on life with C. at home all day. Here she is last Thursday at the end of her final day of school:

C. on her last day of school

Many people we know - good, well-intentioned folks, some close friends others staffers at C.'s school - have asked us why we aren't putting her into an institution and they all specify one. It's actually a chain of large, closed institutions scattered throughout this country that is highly regarded by the general public and lavishly funded by our government. I've grown weary of delivering my anti-institutionalization lecture. So sometimes I just say "no" and skip the explanation.

It's getting tiresome and infuriating. I mean, when will this society get it? A child isn't somebody you evict and dump on strangers because the going got rough.

Just a year ago, our major concern with C. was the intense summer heat and dehydration which landed her in the ER overnight. Ah, for the good ol' days.

And on a positive note, here's a tour of a stunning playground designed to cater to the needs of children with severe disabilities: Perhaps we can all use this as a model for a neighborhood playground that our children could enjoy.