Tuesday, June 12, 2018

Febrile fun and games

C. kicking really well during
last week's hydrotherapy session
C. has been quite unwell these days.

I always feel ridiculous describing her that way when the fact is she is always "quite unwell". But what I mean is she's been running fevers of over 39° C and vomited several times yesterday.

Needless to say, to cap it all off, there were seizures. But, oddly, the seizures weren't any more frequent than with milder fevers. In fact, they subsided without the lowering of fever.

So today she'll be checked by her pediatrician who will tell us whether she can go to hydrotherapy. Tuesday is the one day that our local therapeutic pool admits females. We are all eager to see her in the water, the only context where she flowers.

Last week, while back floating, she kicked vigorously with both legs for the entire session!

Still no word from the local Liberty Swing distributor who promised us he'd deal directly with the reluctant municipality.

And still haven't located an Occupational Therapist or a Speech Therapist experienced in cases like C. who gives receipts. Without names we can't proceed with the pilot project we've been accepted to. The idea is to provide C. at home with the services and therapies she would receive were she warehoused in an institution. Currently, in this country, she can't.

UPDATE: After a thorough exam today, the pediatrician has declared C. fit for hydro. While he couldn't find a cause for her fevers, he recommended doing some blood readings, testing her urine to eliminate UTI and having her elbow wound seen at the wound clinic to eliminate infection. He doubted either is causing the fever. If the tests prove negative, we'll be left with a diagnosis of neurological fever that has climbed higher than ever before. Did I really believe there were improvements on the horizon?

Wednesday, May 30, 2018

Frustration overflow

First a swing update:

The Hubby met with the local distributor of that enticing Liberty Swing I am trying to have installed in our city. Currently there are just two in this entire country, both in a city that's over an hour's drive from us.

The parks department of our municipality won't permit us to donate and install it in one of its playgrounds without first winning the approval of some committee. The first step toward that approval is a written request. But here was their response to the email I sent detailing what we'd like to do:
Equipment of this sort has never been installed in our city. We need to examine the technical details of this item of equipment and determine whether the municipality will be able to maintain this type of equipment. Only after examining the above topic and receipt of authorization from the relevant bodies will it be possible to install such a swing and to maintain it. We will be in touch with you in order to survey possible optimal venues for installation of the swing.
To be clear, Liberty Swing's website lists 215 such swings extant throughout the world - excluding the two in our country. So we're not taking about inventing the wheel here.

But the distributor assured us the ball is now in his court. He'll deal with the municipality directly and hopefully move the project to fruition.

I'll still tackle the crowdsourcing, of course. We'll see whether he delivers on his promises.

C. is consistently unpredictable these days. We never know whether she'll hand us an hour or so of hard seizing or remain calm. If she seizes, we never know whether it will be accompanied by central fever or not.

When I put her brace and shoes on, I can't predict whether she'll stand erect, walk nicely, bending and straightening her legs. Or whether she'll just tilt her torso sideways and keep her legs stationary.

At mealtimes, I never know whether she'll place her spoon into her mouth independently and swallow her food quickly. Or whether she'll drop her spoon, need to be fed and then store each mouthful in her mouth for eternity.

Definitely not an easy period.

I've been writing locally about my pet peeve - warehousing children with disabilities - and growing increasingly frustrated with my failure to have an impact.

This country's largest chain of warehouse institutions is constantly sprouting new, greedy tentacles. It is partnering with a growing list of organizations, several of which claim to champion true equality and inclusion for people with disabilities. They should know better.

One of its many outrageous operations is a "prisoner rehabilitation" program whereby imprisoned criminals are bused several times a week to its institutions to interact one-on-one with people who have profound disabilities.

Some of the prisoners are serving substantial sentences. But the institution insists they have all been vetted for safety and even permits them to change out of their prison garb into civies during their visits. Yet they concede that the men aren't permitted to interact with female residents or with minor residents. Nor are they admitted to the hydrotherapy pool.

Hmmm. Sound safe to you?

My written inquiries have revealed that in all likelihood no other institution in the world "rehabilitates" prisoners in this manner. Two major prison service entities - one international, one local - assured me they have never heard of one.

If you are aware of such a program, I would very much appreciate your sharing details of it. I would also welcome any tips on how to foster de-institutionalization in countries that are resistant to that transition.

Like mine, of course.

Wednesday, May 9, 2018

That stubborn significant scab

We're plugging away at that new style of assisted walking despite minimal headway.

But as a serial banger-of-my-head-on-the-wall, giving up isn't an option. Besides, Hubby will bring C. to the wounds clinic once again tomorrow. Turns out that a large scab [see below] on C.'s foot that's been a fixture for about two years has not been examined by the medicos there for ages.
That's not because she hasn't been to the clinic in that long. Hubby and C.'s caregiver have been bringing her there every couple of months to have her sores assessed. The doctor and nurse haven't been concerned about any that they saw. But they weren't shown the foot scab! I'll leave it at that.

So how does that relate to C.'s walking?

Well, I've got this dream - probably the pipe sort - that after that stubborn scab is removed at the clinic, her walking will improve dramatically. After all, it's on the foot that wears a brace which unavoidably presses somewhat on that spot. Stranger things have been known to happen so who knows?

Here's an updated photo of the self portrait I've been working on. As I mentioned, the toll of special parenting is plainly evident:
We sent our approval request email to the municipality for this city's first Liberty Swing several days ago. Still no response.

Not surprised. The municipality has a reputation for inefficiency. For now, the highlight of C.'s week remains her hydro session at which she just shone yesterday, kicking with both feet!

Saturday, April 21, 2018

Watching, obeying, seething

I've been diligently obeying the physiotherapist's instructions, straightening C.'s left leg, bending her right and refraining from walking with her other than the few steps back to her bed.

Here's the way I do it when I don't have a second pair of hands to assist:

We've nearly completed the recommended two weeks of this and I can't discern an iota of improvement. C. still bends her left leg most of the time and locks her right exactly as she did before. A return visit to the physio seems unavoidable. Wonder what his next Rx will be?

Every Monday, when I pick up my granddaughter, I'm exposed to many children and young adults with disabilities who enjoy afternoon activities at the center where her kindergarten is. Most have Downs, a few isolated children are in wheelchairs, most are rambunctious, many seem to give their volunteer aides a challenging time. I watch them enviously; if only my C. were capable of just a fraction of the what they do.

I've begun the process of acquiring a wheelchair-accessible swing for a park in our city. We currently don't have any. In fact, it seems there is only one in the entire country - in a distant city.

My first step was to locate and speak to the appropriate person in the municipality and learn from her what is required to accomplish that. Next, I will email them details of the swing, the location we'd like and its cost. We now await a response from the swing's manufacturer regarding its price. We intend to crowd-source for its funding.

Here's the swing I'm talking about:

I'm already day-dreaming of putting C. in it and watching her face illuminate.

In the meantime, our leading local institutionalizer of people with disabilities continues its concerted PR campaign. The goal is to convince the public - and particularly, the public with cash to donate - that those institutions are the salvation of the disabled population.

Lately, it's been harping on the "inclusion" theme. Ad nauseum. Of course, you may find that perplexing. I mean, in what conceivable way is locking people up in isolated, large institutions remotely related to inclusion?

Well, nobody over here seems troubled by that conundrum. Except for the Hubby and I. And so the cash - from donors and government alike - continues to flow to those warehouse institutions. And I continue to seethe.

Monday, April 9, 2018

The physical therapist weighs in

Just heard back from C.'s new physical therapist.

I had sent him video clips of her "walking", if you could call it that, with her left knee perpetually bent and her right one locked. It was a far cry from the desired performance.

Walking C last week
His recommended treatment: A two-week moratorium on that "walking". Instead we're to do brief sessions - ten minutes each, three times each day - of standing her, straightening the left and slightly bending the right knees while rocking her from side to side.

Of course, halting the walking for that long will be a torment for me. Seeing her upright and moving, even in so rudimentary a manner, always boosted my spirits somewhat.

But I'll try to obey these instructions - for the most part - and of course will keep you posted on results.

Tuesday, April 3, 2018

Not giving up yet

We're persevering with the new walking technique which we learned from a kind, capable MEDEK physiotherapist who hails from South Africa. [See this post.]

While C. still hasn't gotten the full hang of it, we're seeing some progress.

She even gives her personal version of a smile (poking out the tip of her tongue) occasionally while we practice.

Monday, March 26, 2018

I'm definitely kicking the optimism habit

The MEDEK therapist works
with C.
It was with with indomitable optimism that I left the physiotherapist a week ago.

Now I'm usually overcome with that emotion whenever we try a new drug or treatment for C. And it can be a huge pain. Because when that something new doesn't live up to my fantastic expectations, I plunge headlong into despondence.

So it was with this therapy session. The method favored by this therapist is MEDEK, the same one we've been using at home with C.

When I brought C. to him nine years ago, he told us that she was too old and big for him to work with. But he and the Hubby bumped into each other recently, hit it off, and he then offered to give it a shot despite her age and size.

At the session, I showed him the sort of walking I've been doing with her. He advised me to replace it with an alternative. It's not strictly MEDEK but he felt it would suit C. better. (He said that even MEDEK's creator, Chilean Ramon Cueves, uses it occasionally).

Here he is (above) trying it out on C.

When C.'s caregiver and I also tried it out there, C. was quite cooperative. So you can understand why that optimism kicked in.

But at home, it was another story. She just refuses to straighten her left knee in advance of stepping with her right leg. I'm forced to straighten it myself which makes the whole exercise far more frustrating and exhausting than it should be.

Of course, it also means that C. is much further away from returning to stepping independently the way she used to about two years ago (pre-liver damage).

Thursday, March 8, 2018

A great school - but not for the students

I gave a lift yesterday to a woman I recognized from C.'s "alma mater".

Of course, during the ride I asked her about the state of the school since C.'s graduation. It had switched, at that time, from a private to a government-run school so I was curious about the impact that ensued.

The woman raved about the change. When I pressed her for details, she cited "benefits and gifts to the staff" noting that. teacher's aides, for instance, now work only five instead of six day weeks and only until 2:30 pm.

All in all, she gushed, things are great.

Then I asked her how the administrative switch had affected the children. Were they receiving more therapies, for instance? (While C. was there, the number of therapies per week was piddling. At best, one half hour session per week of physical, occupational and speech therapies).

"No", she divulged readily. "They receive fewer therapies."

"But everybody seems pleased," she added. "I don't hear any parents complaining".

I choked, silently... This woman was unabashedly lavishing praise on the new administrators although the children were suffering.

And those children are entrusted to her care. Not very reassuring, right?

Thoughts anybody?

PS: We didn't manage to get to the neurologist this week as intended. But, for now, we aren't feeling the urgency since C. has grown weary of that mysterious vomiting and has even cut back on her central fevers. The Hubby plans to meet the neurologist next week to discuss strategies for reducing seizures. Yeah, I know, he'll go without C. since she's been thoroughly examined by the pediatrician just last week. Yeah, I know, we never seem to give up the futile fight.

Friday, March 2, 2018

Fever, stress, vomit. Life.

True, we might have gotten bored with the same old, same old. I mean profound developmental impairment both physical and cognitive, central fevers, cortical blindness and refractory epilepsy. They might not have kept us on our toes. So, it's understandable that we've now had retching and vomitting added to the mix.

It's been nearly two weeks since those new symptoms debuted. Last week's exam by the pediatrician didn't explain them so we did blood tests on Monday. We also consulted by email with the neurologist..

The pediatrician - who has kindly acquiesced to keeping C. on despite her nearly 23 years - thought that perhaps one of C.'s anti-epileptics is the culprit. The one added on last is Vimpat/Lacosamide. I recall that the neurologist who saved her from a near-coma during her last hospitalization said then that her Vimpat dosage was too high. But he ultimately left that unchanged because she recovered just by his removal of several other drugs that the hospital team had been administering her.

But the neurologist treating C. now - a member of the above hospital team - dismisses that theory.

The Hubby and E., the caregiver, are convinced that phlegm is to blame for the vomiting. But I'm not. She just shows no signs of phlegm, doesn't have a runny nose and isn't coughing. Besides, she's never vomited from a cold in the past.

We also emailed the gastro who had prescribed Carnitine to repair her liver when it was damaged by the Valproic Acid medication. She's been taking 250 mg. of it three times a day for over a year. Then this past weekend we went away for 24 hours with the entire family. I forgot to pack in the Carnitine and C. did not seize, vomit or retch the entire time.

So I hoped we'd found the cause. But now, after receiving the gastro's OK to stop carnitine, it's clear that was wishful thinking.

So the mystery of the vomiting remains.

C.'s Central Fevers have also increased in frequency and are stumping everybody as well. Her neurologists don't seem to have experience with them at all. In fact, while C. was last hospitalized one of the doctors posited that we have it all back to front: the seizures are inducing the fever.

Now, that's such a presposterous hypothesis, I can't decide where to begin debunking it. One, C. also has seizures without fever. Two, when she has a fever with seizures, they stop once the fever is lowered. Three, central fevers are a known phenomenon. I didn't invent them. But nobody on the team was listening.

I'm hoping that our neurologist will be able to track down a doctor who is familiar with central fevers. We plan to meet up with her for a face-to-face consult next week, something I'm not eager to do since the last time we spoke, in the hospital, I sensed she wasn't enamored with my ideas. (They tended toward pleading for lowering the meds, asap).

In the meantime, it's just stress, stress and more stress. Here's a self-portrait in the works that illustrates that.

Monday, February 19, 2018

That same old Sisyphean fight against the system

C. being evaluated for a new wheelchair in August 2017
(We're still waiting for it to be approved)
It's been six months since we lodged all the paperwork necessary to convince the health officials in our government to approve a new, subsidized wheelchair for my daughter, C.

In the meantime she continues to spend most of her waking hours in the ill-suited, uncomfortable wheelchair selected for us ten years ago by the "seating expert"/physical therapist in her school.

At our request, our current seating expert who works at a rehabilitative hospital and who specified the new wheelchair, inquired again about the delay. She wrote us that the government person said the requested treatment has been delayed "and they promised to hurry."
Now, even if a wheelchair were delivered to our door tomorrow, it couldn't count as "hurrying". Of course, we are bracing ourselves for a further interminable wait.

And after a two week phone pursuit, we finally landed the physical therapist from our health fund. He showed up last week and put C. through his routine of extremity stretches, advising us to do them with her every day. He said he would return in a month since we're only entitled to 12 sessions per year from the fund.

When the Hubby requested that he provide us with a recommendation for hydrotherapy for C., he poo-pooed its benefits since, after all, our child "doesn't live in the water".

That's the same response, verbatim, he gave us last year.

So once again, the Hubby patiently educated him about the phenomenal benefits our daughter derives from hydrotherapy. And once again, he agreed to recommend that the health fund allot her their maximum of 6 sessions.

That's per year! And note that the rules say we can't get any hydrotherapies via the health fund without his recommendation.

Yes, it is somewhat Kafkaesque trying to keep your severely disabled child at home rather than locking her away in an institution.

This is particularly true in a country as enamored with the institutionalization of people with disabilities as ours is.

The physiotherapist working with C.
I was shocked to learn this week that it admits representatives of our leading chain of large, closed institutions into our classrooms to "educate" pupils about disabilities. So we have our most impressionable population being taught that "inclusion" equals isolating people with disabilities from both families and communities.

Here is what the website of that chain says about its brainwashing program:
"We couldn’t be prouder of this program, which is the fulfillment of a dream for [us]. Working together with the Ministry of Education, we are educating towards change on a grand scale and seeing immediate results countrywide,” said its director and the brains behind the program. The benefit that he raved about was: "a noticeable spike in youth-led volunteerism and social activism initiatives."
My apoplexy peaked when I read that
"to increase this outreach program's geographic reach and professional depth, we have partnered with two non-profit organizations, both leading voices in the fight for disability rights in in this country."
Et tu advocates for the disabled? I have written to one of those non profits about this bizarre partnership and will share with you any response I receive. (Postscript: A day later, none)