For good cheer, move on

If you were seeking a lift from extreme parenting and the demoralization it entails, well, you've come to the wrong address. This post is limited to bad cheer.

For a full week now, C has been running a low grade fever along with other disconcerting symptoms: sleepiness, unresponsiveness, unsteadiness, seizures both major and minor throughout the day.

Neither the blood tests nor her pediatrician's clinical exam revealed any alarming findings and he thinks C. could just have a virus. But he did notice two anomalies for which he's referred us to an abdominal ultrasound and x-ray:

• "Vertically-oriented abdominal mass to L of midline, partly pulsatile, probably abdominal aorta" (but he assured me it's probably so prominent because C. is so thin)
• "L-sided abdominal masses palpated, oriented vertically. Suspect stool masses" (and he assured me this is easily remedied with laxatives).

He wants us to do an abdominal ultrasound and x-ray before treatment. So, with Wednesday the earliest appointment date I could get for those tests, until then it's just wait and endure.

On the right is my sketch of what C. has looked like this past week.

Walking the gauntlet

We've managed to hold off with starting C. on the Vimpat, though it's sitting at the ready in our med drawer. That's basically the only good news.

Otherwise, C. has been growing gaunter by the day - despite eating well (though not feeding herself, unfortunately). She's also very weak and unable to do assisted walking as well as she used to. And she kvetches with every step. Quite the nightmare.

Her blood test results were all bad (CRP and IgG rose) except for her albumin level which rose. One thyroid reading was bad for the second time although the other two were fine again.

The pediatrician confesses that he's confounded. He'll be speaking to the gastro guy today.

In the meantime, here is a glimpse of C.'s gauntness (I did the sketch). The bandage over her right eye is from the gash she sustained at the hands of her mother. Yes, I dropped her last week while walking with her. It was glued up in the ER 10 days ago. So amidst this mess we can at least rest assured that she won't have a bad scar to mar her beautiful face.

Bed sore is back but a few good days too

Well, the bed-sore honeymoon is over.

The one remaining mild wound which only required this bandage (see below) and the air mattress, grew more severe over the past two weeks. So I asked our health insurance provider for a home nurse visit and that wonderful guy prescribed the three-layer bandage routine.

So today, after hydrotherapy, I re-bandaged C. at school. 

But on the bright side - yes, sometimes there is one in C.'s life - we have been enjoying several of those mysterious near-seizure-free days this week.

As in the past, there is no apparent rhyme or reason to them and - other than briefly noting them to one another - the Hubby and I keep it scrupulously under our chests.  Not even a mention to our other kids.

Because, you know how that jinx works.

As I've written here, even one of our past pediatric neurologists - the department head - warned us never to utter a word about seizure improvement to anyone. Apparently it's some scientific phenomenon, this particular jinx.

So, please, not a word to a soul.

At the top of this post. there's the portrait of a student at C.'s school that's still a work in progress. It's number 5 in the series I'm planning of children at her school.

Not a pretty picture

Work in progress

I've now received  parental consents to photograph and draw portraits of nine children in C.'s school (plus one sibling with Downs of a student). I've photographed eight of them and begun drawing the first.

I decided to start with the boy whose face is disfigured. He's the one whom I've found - twice - was utterly ignored and neglected by his aides.

On the second such  occasion, this boy was seated in his wheelchair in the sports room while all the other children had been placed in the equipment. He was sucking away at his hand as he'd been the first time I met him  I just couldn't bite my tongue hard enough so his aide copped a brief but sharp rebuke from me. (Something along the lines of "Why is this boy always left sitting unoccupied and unstimulated?")

The aide muttered something incomprehensible to me and I didn't bother to ask him to repeat it. After all, there simply is no justification for his conduct.

This boy's plight is evidence of  a sad, cold reality of which I'm sure you're well aware: unattractive children with profound disabilities suffer more discrimination and neglect their attractive classmates.

It would probably be hard to find professionals who'd 'fess up to this injustice. But we know it's the truth.

Seeing red in more ways than one

First, I'll make good on a promise I made to myself to share some of the tips the Hubby and I learned last week.

Just to recap: C.'s school organized a one day conference about children with Cortical Visual Impairment. Nearly all the lectures were given by a guest expert hailing from the US.

One idea that headed her list was to bombard CVI children with red or yellow (whichever of the two  appears to grab your child more). That means: red/yellow masking tape to cover the handles and rims of daily objects; red/yellow cloth pony-tail holders wrapped around them.

Here's what we did to C.'s hairbrush. (I bought the narrow spool of tape which cost a fraction of the wider version.)

A second suggestion that the expert emphasized was black backgrounds. Tables, walls with toys hung on them - all must be black. Those state-of-the-art perspex tables? Bad, bad news.

The guest expert offered many more practical tips which I'll share in my next post. For now, I'll segue to C.'s school for a glimpse at gross neglect - at least that's what I'd label it.

First some background. I have decided to draw portraits of the children in C.'s school for the purpose of an exhibit. To my shock, the principal welcomed the idea. Next, I gave the principal my letter requesting parental consent to photograph and draw their children toward that end. I promised the families a quality copy of their child's portrait. The principal promptly printed and distributed my letter in the children's schoolbags. So far, some ten parents have consented.

In the course of photographing the children I'm learning some disconcerting facts.

For instance, one child whose parents' consent was stashed away in a remote classroom on the basement level. He was the sole student in the bare room with two staff members who studiously ignored him. Here he is as I encountered him:

I explained to the two aides that I'd like to introduce something else to the scene. "Is there anything that interests him?" I asked.

"Yes, his mouth," was the smart-alec retort.

"How about a toy?" I countered.

As soon as this one was placed on the child's desk, the student began to skillfully bead it.

I shudder to imagine what this boy could achieve were he enjoying the input from a caring, trained staff that he deserves?! I'm red with fury!