To hospital, to hospital... Home again, home again (but no jig)

Home-prepared food for Haya 

 

To market, to market, to buy a fat hen. Home again, home again, jiggety-jig...

Wikipedia

Start with this background: "Haya's update: It's a downer" [February 18, 2021]

I wrote the following this past Sunday night:

At this point, even rectal Diazepam is stumped. It used to knock Haya out for hours. Even an old 2018 dose had that effect a few months ago. Today, the seizures have broken through after an hour. I fear we are approaching the last option - the ER. It's a nightmare we make every effort to avoid. But these seizures are destroying her.

And wrote this on Monday:

Well, we finally succumbed and decided to bring her to the ER. At that point, Murphy's Law kicked in and seizures stopped. She hasn't had one since we placed her in the stroller at home for the trip to the hospital.

And then this on Wednesday:

Needless to say, Haya resumed her Status Epilepticus once we were in the hospital and several med strategies were employed:
Vimpat was resumed, starting with an IV surge of it, followed on Tuesday morning by a return to oral.
She was also given a low IV dose of Valium together with the Vimpat.

Today, the IV meds were stopped. We also learned that blood and urine tests and a chest x-ray eliminated the potential diagnosis of infection.

In addition, the neurologist has recommended adding on the modified Ketogenic Diet from tomorrow. The dietician called me to discuss Haya's food sensitivities (tomatoes) and has dispatched me to locate and purchase flax seed bread, She says it's manufactured by only one company in these parts. With our lockdown over since Sunday, local streets have been jam-packed throughout the day and I don't relish driving around in that traffic, from shop to shop hunting for that bread. And that's not all: If/when I do locate it, the dietician has instructed me to crush it in a blender which she advised me to bring to the hospital! Well, I made it clear that wasn't happening. 

(Gently) If I don't sound enthusiastic about the diet it probably stems from the fact that we tried it when Haya was around three years old and didn't achieve seizure control.

For what it's worth Haya was mostly calm tonight, ate with relish, and lifted her head off the pillow repeatedly. Here she is pointing her index finger to sign "Yes. I'd like to eat" and then opening her mouth even before the spoon reaches her." [Video clip to come]

I'm writing this on Friday and Haya returned home two hours ago.

I will (frantically) attempt to prepare her Keto meals for the first time. I just realized that the toothpaste we use may not be Keto-friendly. So I sent off the ingredients to the dietician for her verdict. My daughter, a pediatric dentist, just told me about a patient on the diet who needed several teeth extracted because his parents brushed his teeth without any toothpaste!

And now it's Saturday night:

The dietician nixed the toothpaste we use for Haya and offered an alternative brand which my daughter, in turn nixed because it's not only sugar-free but fluoride-free too, adding "It's as effective as brushing with water."

That concern is relegated to the the back burner. For now we are focusing on:

• Preparing and weighing meals
• Getting them into Haya without any dripping/spitting out.
• Counting the seizures.

So definitely no jiggetty-jigging yet.

PS The hospital water fountains were all covered up with plastic wrapping.

PSS Every so often when walking in the corridors, shouting staff would alert us "Stand back! Wait where you are! A Corona patient is being wheeled by!"\

Haya's update: It's a downer

I'm holding a made-in-Israel Cannabis

THC drops product in this photo

Meds

Today is Haya's first day without any Vimpat. We had her on 25 mg per day for about ten days, down from her maximum of 150 mg twice day. I intended to wait until her seizures stabilized before zapping Vimpat entirely but seizures have been rampant. 

And we need Vimpat out of the picture before we can accurately assess Fycompa.

My hunch is this med isn't Haya's magic bullet. Which means we'll probably move on to the next gun - the Keto Diet.

These days, when all else fails I've been giving THC drops to stem the strings of seizures. Here she is (below) after 22 drops of it looking, I'd say, rather high.

Blood

It took about two weeks to organize but I was finally notified by our health fund that tomorrow, weather permitting, a visiting nurse will come to our home to draw Haya's blood. It will be used to do routine tests along with a Covid-19 serological test.

If we find that she has antibodies, we can stop deliberating over the vaccine - at least for a few months.

Hydro

On Monday, after a five week, Covid-19-caused hiatus, Haya finally returned to the pool. She relaxed and floated independently for the most part but her body often tilted to the left. That was disappointing. 

I showed my son-in-law who is a physiotherapist/hydrotherapist a video clip of her in the water. He recommends re-positioning her arms to the right as they rest on her chest and placing her left hand on her right. The clip shows that they were reversed. 

Can't wait to try those tips next session.

Haya

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I often read posts by parents of children with a range of disabilities on various support group sites. Some are caused by the same genetic mutation as Haya's, some by other mutations and some by none. It's a very disheartening pastime.

I'm usually struck by how much higher everyone's level of functioning is than Haya's. And when they have epilepsy, by how much their seizure-control surpasses hers.

On a site devoted to people with Downs and their families I encountered a word now circulating: other-abled, as an alternative to the "D" word.

The truth is it's entirely inapplicable to Haya. She simply isn't other-abled. She truly is disabled, profoundly and I prefer to call a spade a spade.

Institutionalization Does Not = Inclusion. Ever.

Here we are at the mid-point of the 13th Jewish Disability Awareness, Acceptance and Inclusion Month (JDAIM). It is described as a "unified effort among Jewish organizations and communities worldwide to raise awareness and foster inclusion of people with disabilities and those who love them."

What better time than now to re-explain to supporters of ADI and Aleh (archived page) and their ilk how they deny people with disabilities their human rights.

For some of us, that may be as obvious as one plus one. Nevertheless, there are those, even some near and dear to me, who still ask "But don't we need those institutions? Aren't there many parents who don't want to raise children with disabilities? Where would those live?"

One of them recently pointed out: 

"Israel has a large ultra-Orthodox sector that eschews abortions. Doesn't that translate into an extremely high number of children with disabilities? And doesn't that mean that the alternatives implemented in other developed countries would not work here?"

In short: No. And here is why.

According to 2017 statistics, the number of children with disabilities in Israel does not surpass those of other Western countries. Some 8.5% or 242,412 of our children suffer from serious disabilities, chronic illness or some handicap that affects their daily functioning. 

An additional 4.5% have mild disabilities that don't have such an effect.

As of December 2019, there were some 373,000 Israelis below the age of 20 with disabilities of all kinds [Source: Government of Israel]. 

Those are not higher than the numbers for other major Western countries. In the United States, the percentage of children aged 3–17 years diagnosed with a developmental disability increased from 16.2% in 2009–2011 to 17.8% in 2015-2017 [Source: Centers for Disease Control]

In Great Britain, 8% of children are classified as disabled.

This is a perfect opportunity to return to the ethos of Lumos, the organization founded by J.K. Rowling to promote the rescue of children from institutions and their return to families and their communities.

"Residential institutions for children have many names around the world, including orphanage, children’s home and baby home. Regardless of name, size or location, institutional care is defined by certain characteristics:

‣ Unrelated children live in the care of paid adults. 

‣ Children are separated from their family and often their community. 

‣ In many cases, they do not have the opportunity to bond with a caregiver.

‣ Institutions run according to workplace routines, instead of responding to individual children’s needs.

Although some institutions are well-resourced with dedicated staff, they cannot replace a family. Eighty years of research has shown the negative impact of institutionalisation on children’s health, development and life chances, as well as a high risk of abuse." [Source: Lumos - Slide 2]

So please don't fall prey to the carefully premeditated tactics of ADI and Aleh. Especially insidious is their use of politically correct catch-words that disguise their true intentions. For instance, this sign brandished outside Aleh Gedera boasts the lie "This is Home, This is Heart".

ADI's latest fundraising campaign asserts that donations will "Enhance Care and Advance Inclusion." And it posts this boast on its Facebook page ad nauseum: 

Celebrate ABILITY, Promote DIVERSITY, Insist on Inclusion | These are our core values, and they are words to live by | Spread them during #JDAIM. Live them year round.

But if you don't believe me, Lumos or the child development experts, perhaps this victim of institutionalization, Tommy Berchenko, will sway you. 

The speech that follows is my translation from the Hebrew original of Tommy who is disabled and is operating a keyboard that vocalizes into speech what he writes:

Hello, I am Tommy. I live in Rosh Haayin and I am an activist for the human rights of people with Disabilities and active on behalf of dignified and appropriate housing for people with disabilities within the community. I have participated in demos against violence/abuse and neglect in institutions.

In my view, institutions do not advance people with Disabilities and they should be shut. I want to live independently in the community in my own home with the things that I love and to be and feel like every young adult despite my need for much assistance.

In 2012 the State of Israel committed to implement the treaty for equal rights for people with Disabilities and promised to advance the right to live within the community on behalf of people like me. [See below for Frimet's explanation of what Tommy means by this.]

Thousands of people with Disabilities live in institutions. The State does not provide the appropriate services in the community and therefore many young people are forced to live there. The institutional frameworks limit one's freedom of choice throughout his life even with the most basic things: what to eat, when to go to sleep, with whom to share a room.

In recent years, more and more incidences of abuse and neglect in institutions have been publicized. (Reported/come to light).

Today I am an activist for the rights of people with Disabilities and for the right to dignified in-community autonomous living. I intend to meet with the Minister of Welfare so that he will carry out the Treaty. The State does not believe that I can live independently. I will prove it!

The time has come for the State of Israel to recognize the right of every person with Disabilities to live in the community like everyone else. Open residential services in the community, shut down (תפרק) the institutions, and give people the personal assistance they need as it committed to do in the Treaty.

I, as a person with Disabilities say: Israel is violating the Treaty. And if it's complex/complicated, there are solutions.

Come speak to us and don't send us to a place where you would not want to live.

[Source: A Facebook video]

What follows is my explanation. 

The agreement Tommy refers to is the United Nations Convention on the Rights of Persons with Disabilities, adopted in 2006 and ratified by Israel in in 2012. Chapter 19 is entitled "Living Independently and Being Included in the Community" and includes this:

Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community", including by ensuring that...
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

A leading advocacy group for Israel's people with disabilities, Bizchut, says about this (my translation from their Hebrew) 

Nevertheless, 17,000 people with disabilities still live in institutions (hostels and remote from the community, wherein their right to autonomy and privacy are violated and where they repeatedly suffer severe neglect.

Why is our government deaf to the cries of people with disabilities like Tommy? Why do institutions retain their stranglehold on our politicians and their constituents?

We can only presume that the continued flourishing of this archaic system benefits them in some way.

One such personage, Israel's President, has still not troubled himself to respond to my letter to him criticizing his visit to, and praise of, ADI. Last week, a month after I wrote to him, his chief of staff responded that the data and information I cited in my letter "will be forwarded to President Rivlin for his consideration."

None of the other politicians to whom I wrote regarding their visits to ADI and Aleh bothered to respond at all.