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.

Another shot at our wheelchair woes

After a long delay, my interview with a major local news station, aired. I spoke about institutionalization of people with disabilites and about raising a child like C. at home. 

I mentioned my recent guided tour of a local, large institution that houses 80 such residents ranging from infancy to 40 years old ["My plunge into activism"]

The avalanche of venomous comments my words generated on that station's website - some were downright ad hominem - shook me to the core. Now I wonder whether doing the interview was wise, notwithstanding the praise that a leading activist sent me. 

Anyway, no turning back the clock; I'll have to just weather it.

We have two important, much-deferred appointments approaching for C.

One, tomorrow, is with a physiotherapist who is a seating expert at a major rehab hospital in our city. We'll bring C. in her new, unusable wheelchair to ascertain whether it is salvageable via inserts and sundry adjustments. Since the chair can't be disassembled we had to book a special van from a local non-profit to transport it.

I've really had it with the old wheelchair we are now using - it's only slightly better than the frigging new one. Here's hoping we return home tomorrow with some sort of magic-seating-bullet.

The second upcoming and long-overdue appointment for C. is with a geneticist. The goal is to finally diagnose C. with something, anything, i.e. not only symptoms but an underlying cause -. rare syndrome, a random mutation, not fussy.

We hope, for one, to thereby relieve our other children of the worry and fear hanging over them with each of their pregnancies. We also hope to learn that whatever C. is afflicted with would respond -even minimally- to some treatment. 

Modest goals, right?

C. has been seizing a lot lately. Not quite status epliepticus but demoralizing nonetheless. 

Notwithstanding, she positively rocked again this week at my hydro session with her, after entering the water with seizures. 

Too bad we don't have a private pool to zap those seizures with every day. 

Our perilous pool

The therapeutic pool were my daughter has been doing hydrotherapy is still closed for repairs. 

If it weren't for that wetsuit we bought her on-line, I'd be positively apoplectic by now. 

But out of curiosity I inquired about the "renovations for safety" that the hydrotherapy business blamed for the closure. I contacted the special ed school where the therapy pool is housed (C.'s alma mater) and learned the truth: tiles had fallen from the pillars in the pool area! Yikes, I thought. What sort of professional therapy pool is that? 

Fortunately nobody was present on either occasion but that was just a fluke. The retiling job has, I was told, proven to be involved and lengthy. 

Here's a photo of one of those potentially lethal pillars.

Tokyo here we come?

C.'s therapist water-walks her in the pool

Our local therapy pool, housed in the building of C.'s alma mater, is quite nice and modern. 

The trouble with it is that it frequently suffers "breakdowns", as they're termed. The latest one has stumped the repair guys for over two weeks. 

But I wasn't as disappointed as you'd expect. It spurred us to take C. to my local non-therapy pool for the first time in her her new, state of the art, wetsuit.

We've already used it twice with undeniable success. She floated without support, and even kicked a tiny bit. E., her caregiver, and I believe that she may not have kicked with her usual enthusiasm because the wetsuit felt cumbersome. So, perhaps with time she'll get used to it and kick as she does in the therapy pool.

Most important, though, was that she didn't shiver, was relaxed and seemed to enjoy the water as much as she does the heated pool. She had been seizing badly prior to her second wetsuit session and wasn't yet clear of them when I took her in the water. 

But she actually calmed down totally after just a few minutes, confirming my conviction that swimming is soothing and beneficial for her in every way.

I'm now weighing whether to simply drop her sessions at the therapy pool once it's repaired. I do everything that the trained hydrotherapist does and those sessions are $44 a pop. (Our health insurance only allows us 12 sessions annually at their expense.) 

I'm doing the therapy myself with C. in our local public pool.
Check out the wetsuit.

Oh, and there's the fact that the best hydrotherapist dumped her ("C. gets ditched") so she would be with the second-best therapist. The latter likes to devote part of the 30 minute session on standing C. in the water. Since I walk with C. every day on land for 45 minutes, I figure water-walking isn't really crucial. 

Besides, C. doesn't seem to like it.

C. gets dumped

Last week's hydro and C. is with the replacement therapist

As you regulars are by now aware, hydrotherapy is unequivocally the highlight of my daughter's life. We go to great lengths and expense to give her this perk.

I've posted numerous photos and videos of her hydro performances. And we couldn't ask for a better therapist.

So I was blindsided three weeks ago when that therapist informed me she would cease her work with C. and swap with another therapist.

While I do consider the one she's swapping with to be competent, she can't compare with her previous one.

And here's the reason her "ex" gave: the woman hasn't been feeling well recently (she cancelled last week's sessions) and was told by her doctor that one cause of her symptoms was stress. He advised her to eliminate as many stress triggers as possible. Turns out our C. was top of her "hit list".

You're probably as baffled as I was until she explained that she always dreads that C. will seize in the middle of a session.

She said she hopes I'm not offended.

Now, since I've never blamed myself for C.'s epilepsy, I can't fathom why I'd take offense. But I sure am disappointed and confounded.

C. has rarely seized during a hydro session and, even when she has, she's recovered within two minutes. And this same therapist has years of experience with epileptic children at C.'s old school.

But the bottom line is that it stresses her now.

What helps me understand her situation is equating it with my driving. Once upon a time, I was fairly adept behind the wheel and capable of inter-city trips with relative ease. But I'm so jittery now, I never leave our city limits and only transport our grandchildren on brief, familiar routes - and never on highways.

Fortunately, C. has yet to scare away her Occupational Therapist or her Speech Pathologist. They both seem rather pleased with her responses to them. The OT is working on her grasping and releasing of objects and the SP on her responses to questions of preference with her hand. Pointing her index finger is the sign for "yes" and a fist is "no".

E., her caregiver, and I are trying hard to incorporate various questions into her daily activities. So before every sip of water, for instance, we ask her whether she'd like some.

Hoping they don't ditch her any time soon.

Two switches: To a wetsuit and to a drier diaper

After a three week closure for repairs, the local therapy pool finally reopened. 

During its closure, I took C. to the neighborhood regular pool where I do my laps. It's only heated to around 27 degrees Celsius (about 81 Fahrenheit) versus the therapy pool's 33 degrees (91.4 F). 

While she floated passably well in it, she didn't kick and was clearly cold. Can you see the difference between her demeanor in the two pools in these photos? If it isn't apparent trust me, she was shivering.

In the cold water

In the warm water

A friend who was in the pool with his baby during one of those sessions suggested buying C. a wetsuit. Diving isn't our thing so we promptly boned up on them and ordered one from Amazon which equally promptly sent it.

Here is C. trying it on. 

Stay tuned for a report of her maiden swim in it.

Another major switch we've made is of C.'s diapers. I have been resistant to using adult diapers, clinging to the largest size of Huggies. I'd use two at a time for greater absorption but her pants were always getting drenched nonetheless. I can't really explain my reluctance to switch other than because the smallest of the adult ones are still too large and bulky for C. 

Well, one of my daughters took the bull by the horns and brought us a couple of packages of adult diapers. E., C.'s caregiver, was immediately smitten with them and I came around eventually too. 

Her pants do get drenched occasionally but not always as before. Also, because of the improved absorption, those spots that were prone to pressure sores are totally healed. 

Win win.

Regression strikes - then recedes

There are several reasons for my silence, a major one being C.'s disappointing performances in both walking and swimming. It's painful to describe such depressing developments while in the grip of them.

Asleep in the hydrotherapy pool

Then as suddenly and inexplicably as her walking regressed, it returned to normal - well, normal for C., that is. She resumed straightening her left leg in between steps and independently step

ping with her right leg. (Stepping with her left one is still a rarity so I push it forward).

The swimming regression was even more alarming. 

In two consecutive hydrotherapy sessions, she fell asleep the minute she entered the pool. It was such a deep sleep that no amount of interference from the therapist, E., her caregiver or me could rouse her. 

We nudged her, spoke to her, tried to give her drinks, poured cool water all over her face and neck, all to no avail. The first time I panicked and was on the verge of racing her to the ER.

That first episode passed abruptly five minutes before the end of her session. She even floated nicely until leaving the water. The following week, though, she didn't wake up until she was in the shower.

The temperature in and around the pool was higher than usual because the room's heating wasn't functioning properly. But that didn't explain the previous week's fiasco when the room temperature was normal. Nor the fact that nobody else fell asleep there either week. 

Has anybody ever had this bizarre reaction to a therapy pool?

C getting OT at home

I had resigned myself to the possibility that C.'s hydro days were over and resolved to try just one more session today before cancelling her upcoming ones.


Well, lo and behold, will miracles never cease, Hallelujah and all the rest - C. decided to float and kick today! More impressively than ever.

The icing on the cake was a productive OT session yesterday. (We've had a couple of wasted ones thanks to seizures or post seizure exhaustion). 

So this time our young, bright therapist watched C. feed herself for the first time. And she threw out this creative idea: instead of our holding her wrist in between spoonfuls as we do, she advised us to just fill the spoon avoiding any contact with C.'s hand. 

If she doesn't, then put the spoon in her mouth independently; we are to gently tap the back of her hand. The goal is to progress to a mere verbal reminder. She stressed how important it is to help C. maintain this skill. 

Of course, I didn't need that reminder. Each of C.'s tiny skills C. is priceless.

New neurology nightmares

Last week, we went to a new neurologist who specializes in epilepsy. Here is C. at the hospital while we wait to be admitted to the doctor's office:

We had to pay out-of-pocket because in the public clinic, the earliest appointment with her was April 2019. But C. is doing so badly seizure-wise that we felt this was urgent.

The doctor gave us an hour and a half during which we covered C.'s history, symptoms and functioning. Afterward the doctor gave us her thoughts and recommendations. This probably sounds rather routine but, trust me, in our experience, it's a rarity. We really felt that we got our money's worth.

Of course, that's not to say we left her office uplifted. There was much for us to digest and ponder. So here goes:

Med changes

First, she recommended raising one of the two anti-epileptics C.'s on: the Vimpat by 50 mg/dose. I already did that tonight. In two weeks we raise it in the morning as well. She said the current dose is considered low. Who knew?

She also advised doing a blood test to check the level of the second drug she gets, Keppra. The current dose of that drug - 1,500 mg twice/day - is also deemed low. Likewise, who knew? Our previous neurologist never told us that. In fact, at our last visit she had recommended adding a third anti-epileptic! Frisium! That's one of the benzodiazepams that rendered C. semi-comatose during her hospitalization back in November 2017 

Btw, that incompetent neurologist never bothered to answer our last email. In it, we mentioned, inter alia, that we did not add the third med, Frisium, as she had instructed us to do. I suppose she wasn't too pleased with that. Back to the new neurologist:

Video EEG

We've never done one and she'd like us to. So some time in the coming weeks, C. will be hospitalized for 24 hours. Here's hoping we glean some helpful revelations. Our HMO has already authorized the expense.

C.'s frequent fevers

She wasn't impressed with the exclusion testing that C.'s pediatrician did. As I've written, he did a thorough clinical exam and blood test before concluding that the fevers she's now getting - they max at 100.6 rectally - are not caused by an infection. Ergo, they must be central.

This neurologist said that those exams weren't enough to reach that conclusion. She said she's seen patients who seize more than C. but never get central fevers. She suspects there could be some underlying condition, perhaps related to her life-long thinness, triggering the fevers. She said the pediatrician should have referred us to a specialist - she couldn't specify but threw out endocrinologist and gastroenterologist as possibilities - who could run tests to determine whether in fact there is another cause for the fevers. 

Whew, not exactly an inviting task.

VNS

She strongly urged having a new VNS implanted. The one inside C. dates back to December 1999 and never helped her one iota. She advises trying it again. Of course, this time we'll have somebody better equipped to calibrate it afterwards. 

Back in the year 2000 there wasn't any such expert in this city. (I know, I know: so why did we implant it then anyway? That was just another of our many blunders.)

But removing this old one isn't straightforward we've been told because the wires are coated by now with skin - or something along those lines. Also, the last neurologist who pushed a VNS replacement was the one who destroyed C.'s liver with Valproic Acid but refused to own up to it. Instead she pointed a finger at the cannabis! Which brings me to this new doctor's take on - 

Cannabis

I had braced myself for negativity so I was relieved when she just told us that C.'s CBD dose is very high. Which would explain why the government authority refused to renew our license for 11 bottles (= 100gm) per month. Instead we were given one for only 10 bottles.

She said C.'s current dose would be more efficacious in the form of vapor. It's absorbed far more quickly than the oil C. now takes. I haven't gotten around to inquiring about the availability of this form at our supplier. My hunch is we'll need to switch to another supplier (the one that the doctor recommended); not a process I relish.

Hydro

This week yielded a brief respite from frequent seizures and fevers during an extra long hydro session where C. just rocked. The proof is in the photo above.

Progress on the wheelchair front

Wheelchair tryout

I am thrilled to report progress this week on the wheelchair front. 

We've endured C.'s current one for some six years. It was the concoction of the so-called seating expert at C.'s old school who selected it and all its accoutrements single-handedly. And believing her title was deserved, we blindly followed her advice.

It was clear from day one of C's sitting in it that our "expert" was actually clueless. After every seizure, C. slides down. Like this:

Sliding out of her current chair

And even when calm, she gradually slides down over time. When the Hubby is out of the house, I am forced to leave her in that uncomfortable position because I'm not allowed to lift her weight (lest I wreck my pelvic organ surgery).

So we're all eager to finally acquire this new Italian wheelchair which promises to prevent sliding via its slight tilt backwards. 

According to the importer's rep, who brought a demo chair to our house, this tilt will also readjust pressure spots, thereby relieving to the ones that are normally plagued. He assured us there's a good chance we'll have the new wheelchair delivered by the time the Hubby leaves for his brief overseas trip in November. Hoping hard.

On the swing front, no such good news. The local person we've been referred to by the overseas manufacturer is on vacation now. But an associate of his told the Hubby that in the past they've encountered opposition from another municipality, similar to the sort ours dished out - see Frustration overflow.

Hydrotherapy - notice the tip of her tongue

Her impression was that some folks there simply don't want children with disabilities frequenting their playgrounds.

I managed to attend C.'s weekly hydrotherapy session yesterday.

Normally, I'm with grandchildren at that hour so E., her caregiver, is with her on her own and sends me photos and videos. But seeing it in real time is such an very uplifting experience. The pool is still the only venue in which C. thrives.

Yesterday she seized right before entering the pool and right afterward. But during those 35 minutes of floating, she was the epitome of calm and contentment. We were even treated to several of her "smiles" - the tip of her tongue sticking out as the photo above shows.

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?

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)

That pot of gold

C. gets hydrotherapy

I was thrilled with C.'s hydro session this week where she surpassed last week's performance. Here she is floating unaided (over on the right).

Her walking has also been advancing. Still nothing like what it was pre-liver saga but better than it has been since her liver recovered.

She's actually sturdily on her feet cooperating slightly while I move her legs. We do this for 45 minutes every night. It's so strenuous that Ive apparently injured my left hand in some way. For the last week, I've been waking up after about five hours of sleep with numbness and pain in my left fingers.

I unearthed a hand brace which I bought many years ago. (That's no mean feat in my chaotic household.) The exercises I was doing back then with C. triggered similar symptoms in the same hand.

Me walking C. today

I've now been wearing it during the walking and while I sleep for a couple of days with amazing results.

UPDATE: I wrote all that a few days ago but things aren't looking so rosy now. We get periods of intense and repeated seizures for which I give either Advil or 20 drops of Cannabis THC, or both. We're also treated periodically to those tiny eye seizures that lock her trembling eyeballs into the left side. The latter aren't as visually alarming as the whoppers but they're still very disconcerting. Needless to say, she doesn't function at her peak while in their grip which can be for over an hour.

We're at the same 25 drops of Cannabis CBD, three times a day, 3 drops of Cannabis THC three times a day, 1,500 mg. of Keppra twice a day and 100 mg of Vimpat twice a day. Still haven't learned if and how we can buy that CBDA. So, for now, I am at a loss as to what changes to make.

That pot of gold - seizure control - seems more elusive than ever.

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.

Water and oil

I'm pleased to report that C.'s second Mommy-hydro stint far surpassed her first. She hardly crossed her legs at all which enabled her to center her body and float independently most of the session.

Looking forward to this week's session.

We are still pursuing our quest for eleven (instead of ten) bottles of Cannabis CBD along with one bottle of THC per month.

In response to our request,the government bureaucrats who supervise the issue of medical cannabis have determined that a daily log of every CBD dose administered to C. over the last year is what's missing in their lives.

The recommendations of C.'s neurologist, along with all the requisite paperwork already submitted, just didn't cut it. So we've dutifully supplied them with our log.

A hospital-based neurologist to whom we brought C. years ago now apparently occupies a position of influence over the government's medical cannabis office. Our current neurologist has solicited his intervention.

All we remember about the few visits we made to him with C. years ago is that he routinely asked us "So, what do you think?" and "What would you like to try now?" We never received a suggestion from him. For obvious reasons, we didn't stick with him for long.

Let's hope he'll be quick and obliging now.

A manicure and Mommy hydro

It was a week of firsts for C.

The first was her first hydrotherapy session in a non-therapy pool with only slightly heated water.

The second was her first hydrotherapy session with an amateur therapist - yours truly.

And the third was her first manicure courtesy of E., her caregiver. I don't know how I let her circulate all these years with un-done nails. She always has two sparkly hairpins and earrings but somehow the nail polish was overlooked.

The hydrotherapy went surprisingly well.

Although her floating was not as impressive as it has been in the past, I had braced myself for much worse. What C. did was cross her legs tightly - which I've never seen her do before. This caused her body to tilt sideways.

I was unable to straighten them out despite concerted efforts. But now and then she uncrossed them herself and was then able to float easily without any support.

My guess is the temperature of the water caused the leg-crossing. Hopefully next time she'll be somewhat accustomed to the water and we'll have less of it.

And here she is showing off her manicure.

Some inspiration from India

I had planned on personally giving C. this week a hydrotherapy session at the pool I swim in every day. I've watched years of her therapies and figured that by now I could tackle it myself. For years I've dreamed of doing so when the therapy pool at her school was closed for vacation. But good intentions were as far as I got.

One reason was the challenge of getting her there and the other was my reservations about using a barely heated pool vs. the well heated therapy pool.

Now, with her caregiver here to help me. it seemed feasible. The therapy pool will be closed for the next three weeks and I really am curious about how C. would react to the water. If she'd respond well, it would mean a huge savings of money.

So I was suitably psyched up and set aside Thursday for our session. Then one of her nearly-healed pressure-sores re-erupted with redness all around the center. The wound clinic team reopened it, prescribed a fresh course of oral antibiotic and forbade swimming for at least a week.

This is exactly one year after the blasted sore first erupted! That's got to be a world record for persistent pressure sores.

The other "good" news is that the government's department of health has responded to our request for a raised dosage of CBD and one bottle per month of THC.

It was "Nothing doing!"

I'm flabbergasted. This is supposed to be one of the most progressive countries in the world with regard to medicinal cannabis and a leader in research into its benefits. What gives?

We'll see what the neurologist has to say about this verdict. I dread having to cope with C.'s seizures without any THC.

But I won't end on that negative note.

I have a soft spot for success stories starring people with disabilities. Remember that remarkable Argentinian kindergarten teacher?

This story hails from India and is as much about a plucky young woman with Downs as it is about her devoted parents who gave her a restaurant of her own to run. All three of them have a message for other parents of children with disabilities and for the children themselves.

The story is all the more remarkable against the backdrop of the general plight of Indians with disabilities and specifically with Downs Syndrome.

The video is at https://www.facebook.com/thebetterindia/videos/1613392548695052/

From a World Bank report:

India has some 40 to 80 million persons with disability. But low literacy, few jobs and widespread social stigma are making disabled people among the most excluded in India. Children with disabilities are less likely to be in school, disabled adults are more likely to be unemployed, and families with a disabled member are often worse off than average.

And the plight of those specifically with Down Syndrome:

Downs Syndrome affects 23,000-29,000 children born in India every year. Though the numbers are alarming but there is very little open dialogue on this topic in India. Though it is not fatal, not in the developed countries but in India it continues to be fatal. This is mostly because of the low awareness levels and outdated medical facilities.

India has the highest number of people suffering from Down Syndrome in the world. The numbers are alarming but what is more frightening is the fact that this condition is fatal in India due to negligence, lack of awareness, and obsolete medical and technological facilities... Out of the 23,000 to 29,000 kids born with Down Syndrome in India every year, the survival rate is only 44% for those who have congenital heart disease [Source]

Late but elated

C. had hydrotherapy last week. As you all know, it's the one bright spot in her otherwise bland, often bleak, existence.

We had high hopes for a productive session since she hadn't been seizing that day. But when I arrived, fifteen minutes after it had begun, I found her in the tight grip of a novice: see photo below.

The novice told me that she was filling in for C.'s regular therapist who was a no-show that day. She was clueless as to how to work with C., and just clutched her to smithereens.

I immediately intervened, urging her to let go and allow C. to float independently. But she just couldn't do that.

I noticed another therapist in the pool who used to work with C. while she was still in school.

"How about asking her for guidance?" I suggested to the novice.

"How about I just ask her to swap students with me?" she replied.

I couldn't have been more thrilled. Only fifteen minutes of therapy remained but they left me, the therapist and C.'s caregiver, all elated. Not only did C. float on her own she moved her legs to keep them afloat too - something she has never done before.

There is simply no therapy like hydro!

And the next day was C.'s chance to caress her adorable nephew:

Now, she's recovering from a stomach virus that I brought home. Could've done without this but thankfully it's passing quickly.

For those who are wondering why I arrived fifteen minutes after C.'s caregiver had brought her to hydro, promptness isn't my forte and never was.

I read a terrific short story yesterday that expressed my time troubles perfectly. The story's narrator says:

"I'm 9, a solid sensitive, fearful boy. There's a big judo competition today. I never get anywhere on time. I don't know time. I have no understanding of time. Time is beyond me."

Those pesky pressure sores

Me injecting iodine into the pressure sore
on C's foot

We'd hardly resumed C.'s hydrotherapy when a 10 month old pressure sore - presumed nearly healed - sprang back to life. It was her devoted caregiver, E., who decided it warranted another visit to the wounds clinic.

I, on the other hand, was certain that my squeezing the thing had returned it to the healing route.

Turns out I couldn't have been more wrong. The wound expert (she's the clinic nurse and the doctors take her advice!) determined that C. needs oral antibiotic and a switch to this novel bandaging protocol: You syringe some iodine into the wound before applying a patch of iodine-soaked mesh and finally, a gauze bandage. (I snapped myself doing it - the pic above.)

And this relentless wound has also robbed C. of her hydrotherapy session this week. Apparently it would be bad for the wound and bad for the other swimmers.

Now please wish me luck: for the coming week, C. and I will be home on our own - with E. during the day - while the Hubby is overseas. I'm already counting the hours till his return.

Here's a drawing based on a photo of a couple of weeks ago when C.'s nieces and nephews were all at our place. That's another one of her weird bandages on her arm.

Yay - we're back to hydrotherapy!

C. had her first, post-school-hydrotherapy session yesterday.

She seemed relaxed and at times floated nearly independently - that is, after I donned my "meddling mom" hat and urged the therapist to reduce her support.

But those seizures persisted during the session. A couple of whoppers and many of the minis.

And while I did meddle, I was mindless of the proper gear for C. For instance, I entirely forgot about bringing along Huggies Little Swimmers. So C. had to contend with a weighty water-logged diaper.

The photo shows her contending.

Meanwhile we're giving THC when the going gets tough, and it has been effective the last couple of times. (Despite the bottle's expiry date of 03/17 - it's all we've got while awaiting our new, amended medical cannabis license that will enable us to purchase a fresh bottle.)

Piling on the therapies and the Keppra

It's been a rough three days for C. with seizures up the wazoo, some accompanied by fever, others without. Up to eight major ones a day and many small ones involving only her eyes and mouth (too many to count).

THC didn't work its magic. Nor did Advil when there was a bit of fever so I finally raised the Keppra from 750mg twice a day to 200mg twice a day. The neurologist had advised doing that a few months ago but I put it off, hoping that raising her CBD dose would suffice.

The physiotherapist from our HMO came twice last week and is due for another visit today. He does the same sort of limb-stretching that the other one, hired privately, did only minus the white coat and the almond oil massage, and he does it for 15 minutes instead of one hour. Well, these sessions are totally free so some corner-cutting is to be expected.

C.'s spasticity has become rather serious so we'll also persevere with these stretches on our own throughout the day. So far, no results, though.

At this point, we're postponing starting a new drug recommended by the gastroenterologist to reduce spasticity. You know that cardinal rule: never introduce multiple new med variables simultaneously.

And, after a nine month hiatus, C. is having her first hydrotherapy session today.

I'm hoping she'll function as well, or nearly as well as she used to: floating on her back, kicking her legs slightly, scrupulously keeping her face out of the water. But I have a hunch that won't be the case. Stay tuned for her hydro "report card".

The snapshot above, slightly obscured to protect his privacy, is of our HMO physiotherapist at work with C.