CBD vapors: Our new frontier

Last week, we brought Chaya back to the epileptologist who first examined her in September 2018 ["Making it a round dozen"].

During that first visit, she had spent a solid hour patiently recording Chaya's history and recommending several new steps we should take. But once home, we hit snags that prevented us from proceeding. The primary one was our inability to contact her staff. They never returned calls or emails and we needed to coordinate everything with them. 

 
I was prepared to just forget about this epileptologist notwithstanding her superb credentials and top grade recommendations. But the Hubby preferred to persevere. 

So, last week we expended a second round of time, energy and money to shlep back to her with Chaya. As it turned out, the latter proved entirely unnecessary: the doctor didn't so much as look at Chaya, let alone touch or medically examine her. 

One of her concerns back in September was Chaya's thinness. This time she asked us whether she had gained weight since our last visit. But she didn't trouble to weigh her on either occasion. Chaya might as well have been invisible and our efforts to bring her to the office were clearly wasted. 

I was puzzled and annoyed. What's the consensus out there? Am I being unreasonable?

This time around, her assistant did contact us a few days after the appointment. She is instructing us on how to switch Cannabis CBD suppliers. This is a complicated process involving reams of paperwork required by the Ministry of Health. 

The switch is necessary in order to procure CBD in vapor form. which the epileptologist believes is absorbed more thoroughly than the oil Chaya currently receives. 

To start with, we will divide dose between the two forms.

We are pursuing this option over the one that the epileptologist urged on us most enthusiastically, namely: surgery. She is keen to have Chaya's twenty year old, inactive Vagal Nerve Stimulator (VNS) removed and replaced with an updated, more sophisticated version. 

We had this urged on us three years ago by another neurologist: the one who destroyed Chaya's liver with Valproic Acid and then washed her hands of us. So, I'm sure you'll understand why it isn't an option for which I harbor any warm sentiments.

At that time, we got as far as meeting the surgeon himself. He informed us that the surgery would be "complicated" but doable. He too was eager, though he warned us that a pre-requisite would be Chaya's gaining some weight.

But before Chaya could oblige us with some weight, liver failure struck and the neurologist who had been touting the VNS surgery, as I mentioned, fled the scene. (After alleging that the liver failure was more likely caused by the CBD than by the Valproic Acid.)

Fast forward to last week's visit: I've had a couple of years to mull the surgical option and am far less enamored with it than I was then. Chaya has been through the liver ordeal and several severe urinary tract infections in the interim.

So this time I pressed hard on the brakes. "Thanks, but no thanks." I told the epileptologist. "Chaya will try the CBD vapors before we subject her to any complicated surgery." Or something to that effect.

Of course, the doctor tried to convince me of its "uncomplicatedness". But I wasn't buying it this time. 

So here's hoping those vapors bring Chaya's ravaged brain some respite from the two decades of daily seizures she has endured.

Pool tile tell-all

Chaya's therapeutic pool at Keren Or is still closed for repairs. If it weren't for that magnificent wetsuit we bought her on line, I'd be positively apoplectic. 

But out of curiosity, I inquired about the "renovations for safety" that the hydrotherapy enterprise gave as its reason for the closure. An administrator at the special ed school where the therapy pool is housed (Chaya's alma mater) shared the truth: Falling tiles from the pillars in the pool area. 

Yikes, I thought. What sort of professional therapy pool is that? 

Fortunately the pool was empty when it occurred but the re-tiling job has proven to be involved and lengthy. 

On the right, I posted a photo of one of those potentially lethal pillars.

And here below is Chaya last week during her fourth session with the wet suit. 

Once again, she started out seizing, but calmed down in the water and ended up floating and kicking beautifully.

Will Sec Pompeo secure justice for the three American victims of Tamimi's evil?

My daughter Malki dressed for Purim as a farmer
when she was about ten

Even on Purim, our most joyous holiday, our murdered daughter Malki is in our thoughts and our hearts ache with longing for her.

Perhaps this photo of her dressed up as a farmer girl for Purim when she was about ten, her gentleness and innocence radiating forth, will reach U.S. Secretary of State Mike Pompeo who is only several kilometers away from us as I type this in Jerusalem.

While he is not scheduled to meet with Jordan's King Abdullah on this Middle East tour (as far as we know), he has officially done so already several times, most recently just ten days ago in Washington.

But never once has Pompeo raised the fact that the king refuses to extradite Ahlam Tamimi, the FBI Most Wanted Terrorist who has on her hands the blood of fifteen innocent Jews, including Malki.

Never once has he demanded that King Abdullah cease affording refuge (as he has since 2011) and adulation to that self-confessed Hamas mass murderer.

Never once has he publicly mentioned the US Federal criminal indictment of Tamimi and the demand for her extradition by the U.S. Department of Justice in 2017.

And never once has he made continued U.S. support for the King's precarious regime contingent on Jordan's compliance with its signed 1995 extradition treaty with the U.S.

I implore Secretary Pompeo to secure justice for the three American victims of Tamimi's evil. We have waited far too long for that meager comfort.

#JusticeForMalki

[A version of this post appears on the ThisOngoingWar blog which I co-write with my husband.]

The king's visit and a message to VP Pence

From the Jordan Times website

For some reason, the media in US are (at least until the moment I am writing this) avoiding this news item - the current visit of Jordan's King Abdullah II to Washington. Which is odd in itself.

Odder yet is the BFF relationship that the current US administration maintains with the Jordanian king. 

He is touted ad nauseum by US officials as a loyal partner in the fight against terrorism. His current visit with US dignitaries is about his sixth or seventh since the start of the Trump presidency.

And all the while he harbors a terrorist mass murderer in his capital, Amman.

Ahlam Tamimi, who perpetrated and boasts of the Sbarro pizzeria bombing in central Jerusalem on August 9, 2001 has lived on Jordanian soil since 2011 when she was freed from Israeli prison in the Shalit Deal. She had been sentenced to 16 life terms. Now she is an acclaimed public speaker, TV talk show host and inciter to terrorism.

Among her fifteen innocent victims were eight children, one of whom was my precious 15 year old daughter, Malki. She along with 2 other victims was a US citizen.

From the blog I co-write with my husband

Two years ago, on March 14, 2017, the US Department of Justice announced federal charges against her.

It demanded of Jordan that she be extradited to stand trial in the US. Since then, the King's regime has refused to comply with the signed 1995 extradition treaty between the two countries.

This, notwithstanding its past extradition to the US of several fugitives under that same treaty which it now insists is invalid.

We implore US dignitaries, particularly VP Pence who will welcome the King in a few hours, to call him out on this outrage.

It is no secret that the king's power is gravely threatened internally and is sustained by lavish US support, both financial and diplomatic.

We implore Vice President Pence to cease the hypocrisy of this so-called "strategic partnership". Insist on the extradition of terrorist mass murderer Tamimi - or stop propping up this royal dictator.

Chaya, a budding paralympian

Chaya and me in the local public pool last week

Our local therapy pool, housed in my daughter Chaya's alma mater, is state of the art and very warm. But it frequently malfunctions in one way or another. The latest snafu has dragged on for more than three weeks. 

Fortunately, though, the timing was ideal:  the wetsuit we'd ordered on line for Chaya had already arrived and we'd been waiting for the opportune day to try it out at the neighborhood pool where I do my laps. The water there isn't heated much. 

Chaya used to shiver whenever we brought her there and appeared to be a perfect candidate for a wetsuit. 

To date, we've used it three times with undeniable success. Chaya floated without support, and even kicked a bit. 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.

Several minutes into her third wetsuit session, she had a whopping seizure which would have panicked her hydrotherapist and prompted her to whisk her out of the water. Instead, I just held her until it passed and we then proceeded to have a productive session of 40 minutes. 

I'm now inclined to simply drop her sessions at the therapy pool once it's repaired. I do everything that the trained hydrotherapist does and unlike her, don't charge a fee. (Our health insurance only allows us 12 sessions annually at their expense.) 

Oh, and there's the fact that the best hydrotherapist dumped her so she would be with the second-best therapist. The latter likes to devote part of the 30 minute session on standing Chaya in the water. 

Since I walk with Chaya every day on land for 45 minutes, what's the point?

For International Women's Day

My father was a photographer and captured a feminist march down Fifth Avenue, New York, in the early 1960's. Here are several shots he took that day:

As government funding for institutionalization continues to grow, some questions for Aleh

Israel's Knesset chamber

Some disturbing statistics just landed in my email. They highlight the stagnation in which Israel is mired when it comes to the civil rights of people with disabilities.

"The data indicate that in 2000, the outsourcing budget of the Department for Intellectual Developmental Disabilities was NIS 786 million (in 2015 prices), and that 92 percent of that budget was allocated for services related to institutional settings. In 2015, there was a substantial increase... and it reached NIS 1,993 million. The relative share of expenditures on services in institutional settings dropped to 85 percent. Over the years, we see a trend of the expansion of community-based services and the growth in the relative share for these expenditures." ["The Outsourcing of Welfare Services: Trends and Changes", Taub Center for Social Policy Studies in Israel, 2016 at page 378]

That's an astronomical sum for a not-so-wealthy country to pour into the process of locking up people with disabilities. The drop in funding for institutional settings from 92% of the total outlay to 85% is relatively insignificant bearing in mind its absolute growth.

Obviously, isolating that population in large edifices far away from family, home and community is a top priority for this government.

The mind boggles imagining the superb para-medical therapies, social enjoyment and family love that citizens with disabilities could derive were those many millions redirected to community-based care.

Our Chaya is now receiving individualized occupational therapy, hydrotherapy and - for a fortnight now - speech therapy at home. In-community care in action.

While Aleh boasts about its rehabilitation successes, it is worth recalling that the second in command at its Jerusalem branch which I toured last month [see my posts "Making history: After the raid" (December 24, 2018) and "Notes from an Aleh visit" (January 1, 2019)] in the company of Knesset member Nachman Shai was, despite my repeated inquiries, unable to tell me how many such therapies its 80 residents receive. 

When the numbers aren't embarrassing, you publicize them. That make sense, doesn't it? 

Several days ago, Aleh boasted ["Against All Odds: Aisha Transitions Home"] that a resident of its Aleh Negev facility who had lived there since birth had been so well rehabilitated that she was returning to her family. Sort of like a high school boasting that one of its 800 students had earned a high-school diploma. (Aleh claims it has a total of 800 residents in all its institutions.) Not exactly an emblem of success. 

But the story of Aisha and her "graduation" from Aleh begs many disturbing questions about the Aleh enterprise:

Screen capture

• For one, if she could live with her family why can't the other residents? 
•  Must a child "earn" the right to live freely and with his/her family? 
• Do only children with high scores in para-medical therapies win release from these institutions? 
• And, last but not at all least, is Aleh's goal really rehabilitation?

The last question is one to ponder particularly in light of the following line I recorded during the Aleh visit I just mentioned. The loquacious assistant director spouted a running commentary to us visitors that included this telling line:

"We view ourselves as a rehabilitative place - well, in medical definitions proper, we aren't denoted as a rehabilitative place."

To which I now say: If you're not technically rehabilitative, Aleh, why does your Facebook page label you as such in this heading?: 

ALEH - Advancement and Rehabilitation of Children with Complex Disabilities

To be clear, and based on my experience with them, I'm not holding my breath till Aleh answers. Though I do think they should.