A birthday plea for justice

My Malki

Today is my precious Malki's birthday.

It is amazing how the yearning to hug her, stroke her silky hair, kiss her, bask in the warmth of her perpetual smile, tell her how much I love her, just never wanes.

Fifteen when she was snatched from us, Malki would have been 33 today.

She probably would be married and I would be busy helping her out with her children while she worked in one of the para-medical fields as she told me she'd like to. She may, on the other hand, have pursued a career as a musician - she was a magnificent flautist who brought tears to my eyes with her playing.

Instead we have only the pain that our memories of her conjure and the agony of knowing that her murderer is alive, free and thriving. 

Thanks to the despicable Shalit Deal inflicted on us in October 2011, Ahlam Tamimi, self-confessed mass-murderer is married to her cousin, murderer Nizar Tamimi, a fellow Shalit Deal releasee. She resides in Amman, ardently protected by King Abdullah II. 

What a blow it was to witness her release from prison by our own leaders. Then to endure the release of her fiance, now husband who was, according to Israel's conditions under the Shalit Deal, prohibited from exiting the West Bank. But the pair wanted to unite and marry. So our government obliged them - after assuring my husband and me to halt our appeal to the High Court to bar his release. We were assured that it was unnecessary. 

Hours later, we learned we had been betrayed again. Nizar had crossed the Allenby Bridge into Jordan a couple of days earlier, probably hours after we filed our High Court papers.

Now we must also suffer the embrace of Jordan's king by the US administration. Since our Malki was a U.S. citizen, the U.S. has indicted Ahlam Tamimi, demanding her extradition. But the king has refused to comply, brazenly flouting an extradition treaty between the two countries, extant since 1995.

How has the US reacted to the Jordan's defiance? Hmmm - not exactly as you would expect.

In the past two years, it has embraced the king as an honored guest and partner seven times! It has praised him for his steadfast fight against terrorism! It has showered him with military and financial aid!

Not once has any member of the administration rebuked him for shielding a murderous terrorist. Not once has the FBI's demand for extradition been restated by the State Department or by the White House.

And so this embodiment of evil continues to incite her fans throughout the Arab world.

Last month, the Tamimi couple were guests on a popular Jordanian TV talk show. Ahlam spread her venom. Addressing the students in the audience, she said: 

"You - it is vitally important that you undertake a variety of actions so that you can "live" the Palestinian problem... direct our words toward the Zionist Entity saying 'No! to the matter of the Palestinian prisoners; there are consequences not only within Palestine but also extending out to Jordan, to Tunisia, to the entire Arab world."

On Malki's birthday, please do whatever you can to raise awareness of this travesty of justice. Help us return this murderer of fifteen men, women and children - once sentenced to sixteen life sentences - to prison, the one place she belongs.

November is Caregiving Month. Why it matters in Israel.

Image Source

How nice. The United States has given us our own month.

This year’s theme for National Family Caregivers Month, November 2018 is “Supercharge Your Caregiving”.

Now that's so vague, it begs an interpretation. So here's mine:

Galvanize and supercharge the public - enlist them as supporters of Home Caregiving.

So, here goes.

You may be one of those swayed by Aleh's line. Their PR team may have convinced you of their indispensability. You may now share their conviction that our population of people with disabilities could not survive without Aleh's existence - or would suffer irreparable injury if were eliminated.

I don't blame you. You are in good company. Most Israelis have succumbed to the notion that the residents of Aleh's large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order.

But I have learned that the above version is a far cry from the truth. Aleh, Israel's largest chain of closed institutions for people with disabilities, actively solicits residents. 

It literally urges struggling parents to give up their children. Its staff assuages parents' concerns about the negative effects of institutionalization, reassuring the hesitant that they can "remain parents" even after abandoning their children. They assure parents they will be free to visit their children at any time, noting one mother who stops by the Jerusalem branch nightly at bedtime to see her child. They concede that handing over a child is "a difficult process" but ultimately worth it: "You will get back your life" once it's done.

Screen shot from this YouTube video

These promises are made without any knowledge of the child's disabilities or of their severity. One parent was actually phoned by the director-general of the Aleh enterprise, Rabbi Yehuda Marmorstein, who encouraged him to hand over his daughter shortly after the passing of the child's mother. That father relates the phone solicitation on a video proudly publicized by Aleh on its website.

Here in Israel, the belief that caring for children and adults with disabilities within large, closed, isolated institutions is ideal, is gospel. Even organizations that champion the rights of people with disabilities don't tackle this challenge unless blatant abuse of residents has been exposed. And that, as we all know, is not easy. 

Staff members worry they'll lose their jobs if they turn whistle-blower. Parents are fearful their children will suffer consequences if they speak out.

So, as I said, if you have succumbed to Aleh's PR that is understandable and you are not alone. But outside of Israel, it's an entirely different story.

Institutionalization is consistently maligned. For instance, here is a NY Times opinion piece from last week ("The Lasting Pain of Children Sent to  Orphanages, Rather Than Families") highlighting the enormous gap between Israel and the rest of the developed world:

Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages... But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [link] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."

Why is Israel treating its children with disabilities as if it were a poor country? The fact is that the government gives tens of millions of dollars annually to Aleh institutions. Here's how they say it on their website:

Q. What is ALEH’s annual budget?
A. ALEH’s operating budget for all four facilities is about $30 million. The Israeli government provides 85% of that sum, while the rest is fundraised by ALEH through private contributions. This amount does not include capital development projects, which receive 50% funding from the government.

That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve this more cost effectively than through institutionalization.

As the NYTimes piece points out, many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism" is actively solicited by Aleh, which repeatedly posts profiles [here for instance] of overseas volunteers who have who have worked there.  Over a dozen such volunteer "testimonies", as Aleh calls them, currently appear on their website.

And more, from that NYTimes piece about volunteers:

“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. ...But such volunteers might be doing more harm than good... Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away.Volunteers are also perpetuating a system that takes children from their families. The word “orphanage” is a misnomer, because the vast majority of children in orphanages have at least one living parent. These parents give up their children because they are too poor to care for them. What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”

So in November, make your voice against institutionalization heard. Support Israel's parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many of us who institutionalize our children would keep them at home.

Let's follow the lead of other enlightened countries. Could they all be wrong?

Our daughter's murderer - live on Jordanian TV yesterday

Here they are: Nizar and Ahlam Tamimi, seated so properly and civilly in a Jordanian TV studio yesterday, smiling so congenially, hands primly placed in their laps.

Who would guess that this is one of the most evil, bloodthirsty, terrorist couples alive today? 

If we, the parents of one of their many victims, would not remind the world that the path this pair has chosen is that of mass murder, would anybody know that? Would anybody care? 

Thanks to Prime Minister Netanyahu's misguided Shalit Deal, they have been enjoying a life of comfort and happiness under the paternal protection of Jordan's King Abdullah II. 

He is perpetually lauded as a "trusted ally" of the West in their struggle against global terrorism. Somehow his refusal to heed the US's demand for her extradition - since several of her victims were US citizens - hasn't ruffled anybody's feathers. 

But our determination to see her brought to justice is strong.

A hospitalization journal

Sunday, October 7

I'd hoped we could keep these hospitalizations annual - but it was not to be. Yesterday, a half hour after feeding herself a big meal with gusto, Chaya vomited it up in its entirety. Afterwards she copiously vomited liquid every couple of hours.

We tried caring for her at home administering Pramin suppositories - acquired from a local gemach  - as her pediatrician advised. He said that without fever or diarrhea the likelihood of dehydration was slim. But the Pramin had no effect. Horrific doesn't come close to describing that night. 

By morning, there were strands of brown blood in the vomit rendering the question of "what to do" a no-brainer. So here we are back in the ER, 11 months after Chaya's last hospitalization. 

So far, she's weathered a chest x-ray and a 12 hour struggle to get urine via a catheter (an incredibly incompetent nurse couldn't get any urine even though Chaya's on a fluid drip. The next shift's nurse collected it with ease. The consensus: it's another UTI. 

This leaves us at a loss as to how to prevent them. We had to stop giving cranberry juice several weeks ago because that seemed to cause vomiting. Should we now resume that, perhaps in a more diluted form?

Tuesday, October 9

Here we are, finally, in a proper ward (where we waited several hours in the corridor for a room):

The doctors' diagnosis has done a 180: UTI is now negated and replaced with "some infection, somewhere", possibly gastroenteritis. Presumably that triggered aspiration of vomit since the blood test results indicate infection. The profuse vomiting may then have caused intestinal bleeding which appeared in her vomit. 

She's still getting IV Controloc (pantoprazole) to prevent a repeat of that bleeding although there's no sign of it anymore, not even in her stools.

Bumped into that neurologist who we concluded had dumped us when she ignored our last email. Apparently she never saw it and is happy to resume her role as Chaya's neurologist. While she's pleased we consulted that senior epileptologist she recommended, she warns that getting regular appointments there won't be easy.

So she promptly ordered a CT and an EEG for Chaya. She also assured us she'll contact that terrific American neurologist whom we encountered during last November's hospitalization. He's the doctor who rescued Chaya from the avalanche of drugs that had reduced her to semi-comatose. 

I may have mentioned here that we can't contact consult him directly because he doesn't have a practice; this neurologist who will be our conduit to him decided to search for info about central fever and told us she learned it's not uncommon among uncontrolled epileptics!

Chaya is now off the IV drip and has begun to eat and drink. She's back on her Vimpat which was only available in pill form. (They had Keppra in IV form, so she's been getting that regularly). But I haven't resumed the cannabis yet.

We've missed hydrotherapy - Chaya's pinnacle of pleasure - which takes place on Tuesdays. We may also miss the long-awaited delivery of Chaya's new wheelchair scheduled for Thursday.

Wednesday, October 10

Back on the drip because, after a batch of heavy seizures, Chaya was unable to eat and could drink only a bit. A CT was done this morning. Not clear why it was ordered but haven't heard any results yet in any case. UTI has been ruled out even more emphatically today. It's not looking as though we'll have C. home in time for the wheelchair delivery tomorrow.

And here are a couple of gems from the medicos...

Nurse about to finish her shift comes around with next shift's nurse to do what is known here as חפיפה (= passing the baton). I hear her mention that she had taken Chaya's temperature which was slightly elevated but that she decided against Tylenol. I told both nurses that she is seizing badly and could actually benefit from Tylenol for her fever. Then the nurse about to leave delivers her pearls of wisdom: "You see, she's seizing badly because her epilepsy isn't controlled. It needs to be brought under control. She needs to see a neurologist." To me: "You should consult a neurologist." 

I regret that I didn't ask her: "Why? Do you think she might have epilepsy?"

Wednesday night, October 10

I witnessed an argument between two doctors at the station which was situated immediately outside our cubicle. I had the curtain open so couldn't avoid seeing and hearing one, a male , tell the other, a female: "You're a hussy". The other responded: "Well tell me, do you know the patient's background?" "You ought to tell me it", snarled the guy back at her. "No, you're supposed to know it," she repeated. "Why don't you just do your job?" The guy shot back adding once again: "You're a smart-ass." 

Help! So many lives are in the hands of these nincompoops.

That same male doctor had earlier declared to my husband as he saw him approaching: "Whatever you're about to say, I'm not interested unless it's urgent. I only deal with urgent matters."

Thursday, October 11

Chaya will be released today. Didn't see that coming. The CT negated anything alarming and the EEG showed no change since the last one.

While she isn't eating or drinking much, I nixed the nurse's suggestion of a feeding tube. On Tuesday, a speech pathologist assessed Chaya's swallowing skills and they passed muster. So I figured it was best to just persevere with feeding by mouth. Minimize intervention is our credo.

Thursday night, October 11

Home! And, the icing on the cake is that the new wheelchair is here too! Here is Chaya, sitting in it for the first time:

Next up: Aleh actually encourages parents to give up their children to its institutions. It does so via its new Hotline. No wonder that hospital staff repeatedly asked us about Chaya: "Where does she live?" And were surprised by our response.

Mastering the art of gripping and dropping

Occupational therapy sessions entered Chaya's life about two months ago.

Scheduling them isn't easy because both Elvie, her caregiver, and I want to be present and Chaya must be seizure-free. 

We've already had one fiasco - Chaya in the throes of a string of seizures when the therapist arrived. (I had called to notify her but she was already on her way). 

But her other sessions were rather productive ones. 

Over on the right is C. getting her ligaments gently stretched at the session's start to increase her range of movement.

And below is a photo of her gripping an object while our therapist, Neria, shakes her hand. She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it. 

Modest goals, but they elicit bravos from all three of us - the therapist, C.'s caregiver, Elvie and me. 

You've got to admit, we're a realistic bunch.

We had about two weeks of relative relief from seizures (i.e. about three a day) which I attributed to the rise in the night-time Vimpat dose. But here we are after raising the morning dose too and the seizures are back with a vengeance. 

We still haven't managed to check the Keppra blood levels. So maybe therein lies a solution.

The Kupat Holim (health fund) nurse tells us that test will only be available after Sukkot.

No hydro photos because the therapy pool is also closed until after the chagim (the Jewish festival season).

Finally, we are excitedly awaiting delivery of Chaya's new wheelchair on October 8.

Making it a round dozen

Last week, we tried out a new neurologist, one who specializes in epilepsy, aka an epileptologist. This brings our tally to roughly a dozen since, when she was three months old, we discovered that Chaya was neurologically impaired.

In the hospital waiting area

Here (right) is Chaya at the hospital while we wait to be admitted to the new doctor's office. 

We had to pay out-of-pocket because the earliest appointment with her that we were offered in the public clinic was April 2019! At a time like this, our system feels like "public medicine" only nominally. We are forced into the private domain too often.

This epileptologist gave us an hour and a half during which we covered Chaya's history, symptoms and functioning. 

Afterward the doctor conveyed 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 Chaya's on, Vimpat, by 50 mg/dose. I promptly did that the following night. After two weeks, we raise it in the morning as well. She said the current dose is considered low. Who knew? (And who knew that nabbing those 50mg pills of Vimpat would be so challenging. So, beware, they are in short supply and available only in a handful of Kupat Holim pharmacies).

She also advised doing a blood test to check the level of the second drug Chaya gets, Keppra. Her current dose of that drug - 1,500 mg. twice/day - is also deemed low. Again, news to us. Our previous neurologist either was unaware of that or just kept it a secret. 

In fact, at our last visit she had recommended adding a third anti-epileptic! Frisium! That's one of the benzodiazepams that rendered Chaya semi-comatose during her hospitalization back in November! (As the exclamation points indicate, I haven't yet recovered from that nightmare.)

By the way, that incompetent neurologist never bothered to answer our last email. In it, we mentioned, inter alia, that we had not added 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, Chaya will be hospitalized for 24 hours. Here's hoping we glean some helpful revelations. Our Kupah has already given us a hit'hayvut for it.

Chaya's frequent fevers

New neurologist 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 Chaya's now getting - they max at 100.6 degrees Fahrenheit rectally - are not caused by an infection. Ergo, they must be central.

New neurologist said that those exams weren't enough to reach that conclusion. She said she's seen patients whose seizures are more numerous than Chaya's but who 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 tossed out endocrinologist and gastroentereologist as possibilities - who could run further tests. 

"Ouch", I thought when I heard that criticism of our ever-supportive, brilliant and kind pediatrician. But the following day, he read the new neurologist's summary with equanimity, then promptly gave us referrals for a couple more blood tests to tighten the "central fever" theory. He never ceases to amaze us.

VNS

New neurologist strongly urged having a new VNS implanted. The one Chaya sports now 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 easy, we've been told, because the wires are now overgrown with skin - or something along those lines. 

Also, the last neurologist to push a VNS replacement was the one who destroyed Chaya's liver with Valproic Acid and refused to own up to it. Negative associations.

Cannabis

I had braced myself for dismissiveness so I was relieved when new neurologist simply noted that Chaya's CBD dose is very high. Which would explain why the Health Ministry refused to renew our license for 11 bottles (= 100gm) per month. Our new one permits only 10 bottles/month.

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

Hydro

Last week yielded a brief respite from frequent seizures and fevers during an extra long hydrotherapy session where Chaya truly rocked. Here she is:

Sadly, the therapy pool will be closed for the entire coming month. Wishing everybody a G'mar Hatimah Tova and an easy fast on Yom Kippur.

Light at the end of the wheelchair tunnel

Chaya sliding out of her current wheelchair

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

For six years, Chaya has been suffering in her current one. It was the brainstorm of a physiotherapist at Chaya's old school who was the designated seating "expert". She alone selected it and all its accoutrements.

And we, never doubting her expertise, purchased everything she recommended. Trusting her title was deserved, we blindly followed her advice.

From the day it was delivered to us, Chaya has been sliding down in her seat, particularly after a seizure. Like in the photo on the right.

When my  husband is away from 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).

The bureaucratic phase which involved an assessment at Alyn, followed by reams of paperwork that that the expert person there, other professionals and we were all required to submit to the Ministry of Health. So we are eager to finally acquire this new Italian wheelchair which promises to prevent sliding via its slight tilt backwards.

According to the importer's representative who brought a demo chair to our house, this tilt will also readjust pressure spots, thereby relieving the ones by which she is sometimes plagued. He assured us there's a good chance we'll have the new wheelchair delivered by the time my husband 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 my husband that in the past they've encountered opposition from another municipality, similar to the sort ours dished out.

The tip of her tongue sticking slightly out, as it is in this
photo from the hydro pool, is how we know when Chaya is feeling happy

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 Elvie, her caregiver, is with her on her own and sends me photos and videos. But seeing it in real time is such a very uplifting experience. The pool is still the only venue in which Chaya thrives.

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