No silver lining in this cloud

C. wants a drink (explained at the end
of this post)

I haven't posted here for a while because caring for C. has been almost exclusively drudgery, hassles, worry and frustration. Since it's tough to relate the negatives while in the thick of them, I waited for respite to descend but in vain. So now I'll try to blog straight through this cloud.

C.'s pressure sore remains horrific. It's infected, deep, large and persistent. I cringe and shudder each time I re-bandage it. Our dear home visiting nurse instructed me to do that only every two days. But, while I still admire and appreciate him, I've switched to every day.

The makers of the ointment (flaminal hydro) advise to expose and examine the wound every day and to re-dress it when the stuff isn't visible any more. Since C.'s bandage fills with blood and pus within hours, this was a no-brainer for me.

But the sweet nurse seemed annoyed with my disobedience and my panicking. 

Next are the cannabis license hassles. I finally scored a real live voice at the Ministry of Health which told me our renewal license will be at our supplier immediately after the previous one expires.

But there's a major hitch: the dosage on the license - 40mg per kg per day - is way too low. In fact it's lower than the dose I've already risen to. And with the neurologist's approval I had intended to raise it further - perhaps as high as 60mg.

So why had the neurologist requested this dose? She hasn't responded to my email.*

C. is currently staging another of her hunger strikes (here's what I wrote the last time this happened), barely puts the spoon in her mouth and then parks the food there for an eternity. Each meal drags on for ages.

And, the surgeon who will be implanting her VNS (link) warned us that she absolutely must gain weight before the surgery. At this rate, she'll probably lose instead.

Then there are C.'s feet, swollen from fluid retention. She's had this problem before and I know it plagues everyone who spends most of the day sitting or lying down. It usually clears up quickly when I'm careful to keep her legs raised but to be honest, I've neglected to do that of late since they weren't swollen..

The central fevers have been manifesting frequently and C.'s walking hasn't been up to scratch, though I don't believe there's a connection between the two. She often stiffens her right leg and refuses to step with it. I'm forced to struggle to move it forward making the whole effort far more exhausting than usual.

School's about to end - forever

On Sunday, C. officially "graduated" the state's educational system. To mark the end of the academic year, her teacher threw a party. Photo on the right.

In mid-August, the "powers that be" will throw her to the wolves. After that, we have two options. We can either banish her from our home to one of those large, closed institutions that I'm always lambasting. Or we can send her to a "day center" as they're called here where only her most basic needs would be met by some very basic staff members. The staff/student ratio is 2:10 which, I'd say, tells you all you need to know.

Today we met with the school social worker again to discuss those bleak options and the possibility of receiving some therapies at home via our Health Fund.

Now she's a lovely, sweet, kind young woman with what she described as ADD. Her desk is coated with scribbled-on papers that constantly get blown to the floor by the fan. Every time we meet with her, she asks us the same questions, we give her the same answers and she promises to make the same inquiries to the same offices on our behalf. The trouble is she never does and we are always back at square one. I'm reminded of the film "Groundhog Day".

The lobbyist at our local advocacy NGO - with whom I spoke last week (link) - has promised to file a petition to the High Court demanding government funding for therapies and care at home, rather than in an institution.  Toward that end we are hunting for the requisite four other families interested in joining this class action. So far, we've got one. The school's head of therapies has promised to find us three more.

As you see, the good news is currently lying low but at the bottom of the barrel I scraped this up: we're having unseasonably hot weather and C. is always thirsty. I've noticed that whenever she hears me walking over to her, she opens her mouth wide for more water (see photo at the top).

Her mouth stays shut when I'm not in her vicinity. The Hubby and I consider that that a clear sign of some impressive cognitive calculations.

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* I followed up our unanswered email to the neurologist with a phone call. She said she was taking care of the dosage problem. While she didn't explain why she'd originally requested only 40mg/day, she assured me that she'll now resubmit her request for 60mg/kg/day this time. Now for the bureaucracy budge.