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.

Headphone happiness

Chaya and her headset

We have begun using headphones for Chaya, playing music for a few hours each day.

Listening, particularly to music, through that medium has been shown [here] to enhance concentration and pleasure.

But I just found this warning ["How Can Prolonged Use Of Earphones Or Headphones Impact Your Ears?"] about headphone use. So proceed with caution.

The OT also advised placing only one side of the headphone on Chaya's ear while we speak to her or engage her in some activity. That too will increase concentration, she said.

Family befuddlement

Image Source: From the Aleh website

Aleh really needs to choose the definition of "family" that it prefers.

Sometimes its PR folk refer to "the parents and siblings of residents in Aleh institutions" as family - see this piece posted on its website.

At other times it uses "family" to connote the relationship of staff at Aleh to their charges. See "Aleh Bnei Brak takes a trip to Aleh Negev".

Aleh, time to stop straddling the fence.

If residents of your large, closed institutions do indeed have families somewhere - and in all likelihood they do - then those are their families. Period. The staff and volunteers at Aleh are just that.

Remember, Lumos statistics show that:

"Of the 8 million children in institutions worldwide, more than 90% are not orphans.Most have families who love them and want them but they are driven into institutions because of poverty and discrimination on the grounds of disability or ethnicity."

Am I asking too much?

I explain about this photo below

I've been learning about my fantasy adult day program. Turns out, it's a reality in Los Angeles for young adults like my daughter Chaya. 

I'm happy for my blogger-friend Elizabeth whose daughter Sophie was admitted to the program after a years-long wait. But reading about it also makes me apoplectic. 

I mean, why don't we have something even remotely similar here?

Back in 2016, when our Chaya was about to age out of the Israeli school system, we found there were three day-programs on offer and we naturally wanted to check them out. My husband and I visited one of them together. He checked out a second one on his own. We were the told the third was similar to the one he saw alone. 

The words that best described them all? Beneath all contempt.

Naturally, we opted to keep Chaya at home instead. 

But while we knew that those programs were unsatisfactory, we really didn't have a clear idea of what such a program could and should offer. Now, after reading about the one in LA that Sophie attends, we do. 

But before I share those details, here's my reaction (written at the time) to the one operated by Elwyn in Jerusalem.

I dutifully submitted to a tour of a day center for adults with disabilities. It's the one that seemed to be the least of the three evils available to our daughter, Chaya. The social worker at her school escorted us and my husband drove us since I had just had cataract surgery. It was his second visit to the place and he had earlier conveyed to me in no uncertain terms its awfulness. But I was aiming to view this place with an open mind.

Despite serious efforts to do that, I was shocked both by what we saw and what we were told by management.

We were brought to a small room filled with eight people sprawled out on thin mats on the floor - young women of approximately our daughter's size and age, side by side with apparently-middle-aged men. Two aides were on duty in the room. That's two individuals to change the diapers and clothing, escort to the toilet whoever is capable, and feed two meals to eight entirely-dependent individuals.

It would be a challenge even for two highly trained employees. 

But these aides by no stretch of the imagination fit that description. So it was unlikely that they would find the time, energy or desire to do what we were assured they do in addition to the above tasks, namely to exercise their charges throughout the day according to instruction they received from the physiotherapist.

It's understandable that the director told us that tall tale: because she also confessed that there are only two staff physio-therapists for the entire center who give each charge a half hour of therapy per week! 

When I noted what a shame it is that her center is so under-financed and how wonderful it would be if the government subsidized it as generously as it does closed institutions, she said: "It wouldn't help. Because it isn't a question of finances. There's just a dearth of therapists willing to work with people as disabled as these."

I suggested a generous salary would entice more applicants but made no headway.

In any case, on both this and my husband's previous visit, at approximately 11:30 am  everyone in the room was lying down on thin mattresses placed on the floor. It was mid-morning. This time, there was a row of lit candles in the aisle which, we were told, had been placed there for the "yoga session". I tried to envision - but couldn't - people with disabilities like my daughter doing yoga.

On our way out of the room, and ignoring my husband's suggestion, I snapped a photo of the class. A second after we left it, one of the aides summoned the director back in and complained about the photo. I was promptly rebuked for invading the privacy of the people cared for there. I showed the director my photo which features no faces. She was appeased, didn't demand a delete and reassured the aide.

I was then rebuked by my husband and by the school social worker, both of whom felt I had betrayed the hospitality of the director who would now be suspicious of my intentions and would fear my going to the media to report on the visit.

While I apologized to everybody, I believe the photo was actually warranted. The day centers are a government-funded service. Why bar a visitor's recording of what's happening behind their closed doors? After all, the charges cared for there are incapable of communicating. And oral testimony alone isn't worth very much; it's so easily denied. With faces absent or blurred, where's the crime in a photograph?

So that's what happened two years ago. Now back to the present.

In LA, the program tailor-trains personal aides for each participant and invites home-caregivers to join in their preparation. Participants who are capable can engage in community work. Those who aren't, enjoy outings to museums, parks, beaches on public transportation. They also receive myriad therapy sessions and, of course, interact meaningfully with their aides and friends.

Need I say more?

One added detail: it's publicly funded. Now, before you admonish me for comparing the fiscal situation of LA with that of Jerusalem, please remember: our government's coffers are wide open for the care of people with my Chaya's degree of extreme disabilities and who are institutionalized. It funds the Aleh chain where their marketing materials speak of a monthly expense of many thousands of shekels per resident per month, much of it funded by the government. 

And what's the option for Chaya and her ex-classmates whose families want them to live at home? Day programs like Elwyn's.

The injustice, the ache: A reflection on seventeen years of loss

The short essay below appeared in The Times of Israel early today under the title "A travesty of justice and its tentacles".

Today, August 9, we mark the second year in which we have been bereft of our Malki for longer than we were blessed by her presence.

No matter how often and intensely I think of her, the treasured memories progressively fade. That in itself is a painful realization and conjures up for me these words from the poem “Perhaps,” by one of Israel’s greatest poets, Rachel:

"Perhaps those things never happened at all… Did you exist or was I dreaming?" (my translation from the Hebrew source).

Some have advised that when I remember Malki on her yahrzeit, I ought to focus solely on her, on her wonderful traits, her generosity, her contagious smile, her boundless joy, her incredible flute-playing musical talent, her devotion to her profoundly disabled sister, her love for her family and for her nation.

But I have done that so often and it aches too much.

Now I prefer instead to highlight the fresh layer of suffering that was added to our grief in 2011: the travesty of justice inflicted on us by the so-called Shalit Deal when Ahlam Tamimi, the murderer of our Malki and of fourteen other Jewish innocents, was freed.

That evil woman is living a happy, fulfilled life in Amman. Since being let loose in Israel’s catastrophic deal with the Hamas terrorists, she has married and become a mother. She boasts tirelessly of her “successful” terror attack and has repeatedly incited others to emulate it. 

Jordan’s King Abdullah II and his government have facilitated this by looking on passively while for five years she recorded her own weekly show on the Hamas TV network and as she traveled freely to address adulatory crowds in Jordan and throughout the Arab world.

This travesty of justice has grown tentacles. First, a year after our own prime minister released her, he violated the conditions he himself imposed on the release of Tamimi’s fiancé Nizar Tamimi. (He too is a convicted murdering terrorist who was freed in the Shalit Deal as well as being her cousin). Our government asked us then to halt our High Court petition for an injunction against the cousin/groom being allowed to cross from the West Bank to Jordan. We acceded – it was our own government’s request after all.

We soon learned to our horror that he had been permitted to cross the Allenby Bridge three days before.

Days later, we saw photos on Arab sites of the Tamimi murderers’ wedding. A jubilant affair, it was attended by a large crowd that included the now famous and revered Ahed Tamimi – a cousin to both the bride and the groom and now referred to as the Palestinian “Joan of Arc”.

Because Malki had American citizenship like two other victims, an important American law – called US Code Title 18 Section 2332 – gave us an opening to go after Tamimi.

What followed were years in which US law enforcement officials assured us they were “working on it.” Finally on March 14, 2017 we learned from them that a criminal complaint against Tamimi was being unsealed that day and her extradition by the Kingdom of Jordan was being demanded.

The travesty of justice expanded almost immediately.

King Abdullah refused to extradite Tamimi despite a duly signed 1995 treaty between the two countries. Among his court’s excuses was the contention that the signed treaty was never ratified by his parliament and that it therefore infringed their constitution from the day it was executed. In-depth investigations have proven that these excuses have no basis in reality. Jordan has extradited several Jordanian criminals to the US in the framework of that “unconstitutional” treaty.

Finally, this travesty has tortured us with the reaction – or more precisely, absence of reaction — by the US and Israel to Jordan’s defiance. Both countries have not only maintained but have nurtured their friendships with King Abdullah and his wife. Clearly, the political and economic fruit that accrue to those Western leaders from this chumminess outweigh for them the pursuit of justice.

So please spare a moment to remember not only the massacre at Jerusalem’s Sbarro pizzeria of August 9, 2001 and the precious 15 men, women and children who perished there. But also the outrageous political machinations that followed. 

Help us achieve the justice those victims deserve.

My words at the gravesides of Malki and Michal

What follows below is an English translation of what I said in Hebrew at the modest annual remembrance at Jerusalem's Har Tamir cemetry, standing beside the adjoining graves of my murdered daughter Malki and her closest friend Michal Raziel on August 1, 2018. This was the anniversary, according to the Hebrew (lunar) calendar of the massacre in which their lives ended.

Despite the passage of years and the fading of memories, our pain over the murders of Malki and Michal retains its intensity.

As I have done each year, I mustered up the courage this week to listen again to my daughter Malki's voice. Through her incredibly detailed diary from the last year of her short life, she continues to speak.

I happened upon the entry below. She wrote it two days after a pair of young Jewish women were  murdered en route to the funeral of another terror victim.

From Malki's diary

"In our home-room lesson, I couldn't concentrate. Everything that's happening with this "situation" (המצב - referring to the Second Intifada) really threw me into a deep depression and I was terribly sad. Avigail didn't come because she went to the two funerals and couldn't get out of it. In English lesson, I left in the middle with Shira F. and Miri and we spoke. Shira told us about yesterday's funeral. She spoke in a dreadful manner. She planned her own funeral with us. She says she told her mother that she doesn't want any reporters at the funeral and that she should organize buses with bullet-proof windows so that we can attend. We tried to silence her. It was very frightening."

Of course, it was chilling to read these words.

An additional layer was added to our torment in 2011 when our leaders released Malki's and Michal's murderer and it too has not abated.

Currently, both the US and Israeli governments ignore the fact that the King of Jordan protects that mass-murderer and refuses to extradite her in accordance with the US Justice Department's demands [announced in March 2017 and pursuant to a long-standing treaty between Jordan and the US.]

The two countries maintain friendly, even warm, relations with him despite his granting refuge to an evil villain who has repeatedly confessed and boasted of slaughtering fifteen Jews. Arnold and I have been  tirelessly pressuring the relevant authorities to transfer her to an American court for trial and ultimately back to prison.                       
Our struggle elucidates the Torah's exhortation in Devarim (Deuteronomy), 16:20:

"Justice, justice thou shalt pursue". 

It seems that the word "justice" is repeated because its attainment may often be an uphill battle, demanding perseverance and repetition of efforts over time.

We pray that we will eventually merit the attainment of justice for our precious Malki and Michal.