Pursuing ketosis

We finally found online and purchased those elusive keto sticks I wrote about two weeks ago [Update: Meals and therapies]. They enabled us to check Haya's ketone level in her blood. As she is in nappies, the locally and readily available urine test strips were not an option. 

While our health fund practically donates the device itself for 20 shekels, it doesn't stock the blood ketone test strips in any of its pharmacies. Nor does any other of its pharmacies! 

(Note: Please advise me if you know of an in-Israel supplier. The strips we bought currently cost us 20 shekels for every test.)

Here is Haya being tested:

So far she has had ketone levels of: 5.2, 1.2 and 1.9. Those results were each 5 days apart.

We're hoping to raise her ketones to her first result as she's still having strong seizures a few times a day.

But here she is yesterday at hydrotherapy with her arms more relaxed than usual after I have massaged and opened them.

And here I am demonstrating via a self-portrait what the awful combo of Covid-19 pandemic and preparing keto diet meals can wreak on one's appearance.

A call to President Biden

Malki and me some months before she was murdered

Exactly four years ago, during the evening hours of March 14, 2017, Department of Justice and FBI officials invited my husband and me to a meeting in a Jerusalem hotel. 

There they shared with us news that we believed would herald the arrest and trial of our child's murderer. Ahlam Tamimi had by then been enjoying freedom and security in Amman for five and a half years. In October 2011, she had been released in the lop-sided Shalit Deal with the terror organization Hamas.

The moment she landed in her native country Jordan, she began boasting of the terror bombing attack she had masterminded on Jerusalem's Sbarro pizzeria in August 2001. The eatery had been packed with families that hot summer afternoon. The number of victims reached 15, including 8 children, among them our Malki.

Tamimi repeatedly urged her admirers to follow in her footsteps from the platform of a weekly talk show she hosted on the global Arabic-language Al Quds TV station. She also addressed live audiences both in Jordan and in several neighboring Arab countries to which she travelled during those years with ease.

On that March 2017 evening - it happens to have been my birthday - those US officials told us charges against Tamimi, the existence of which we knew nothing about until that moment, had just been unsealed. And her extradition to the US for trial had been demanded of Jordan pursuant to the 1995 Extradition Treaty between the two countries.

I remember shedding tears that day as I sat at the table across from those officials. I had little doubt that this monster would soon be where she belongs - behind bars in a US Federal penitentiary, this time until her last day on earth.

But here we are in 2021 and we are no closer to justice now than we were then. 

King Abdullah's regime steadfastly refuses to honor the extradition treaty that Jordan signed and ratified with the US in 1995. Jordan receives generous financial aid from the US as well as praise and adulation from the White House and from numerous individual members of Congress.

My husband and I are incredibly disturbed by the apparent passivity on the part of the US in the face of Jordan's brazen contempt for the rule of law.

It often seems to us that Jordan is the tail wagging the dog in this much lauded "partnership".

We truly hope that you, President Biden, will impress on Jordan that the existential support lavished on the Hashemite Kingdom is contingent on this evil woman being brought to justice.

We produced the video below with friends to mark the fourth anniversary this past weekend. It's also accessible via YouTube.

Update: Meals and therapies

We are persevering with the Ketogenic Diet. 

True, we can't be sure that it's helping Haya as we simultaneously resumed her full dose of Vimpat from which we had weaned her. 

Of course, two changes at once is a cardinal sin when treating epilepsy. But since Haya was in a grave crisis only two weeks ago, we agreed with her doctor that every gun in the arsenal should be utilized at once.

We still haven't succeeded in getting the ketone blood test strips that match the device we purchased (photo right). They're due to arrive in a few days. Then when we've ascertained whether or not Haya is in ketosis, we'll be better able to assess its efficacy. 

For now, I can only say, it's a time-consuming and exhausting diet to administer.

This diet has also denied Haya the opportunity to feed herself which she had been doing so nicely for years. Every drop of every pre-weighed Keto meal must reach her gullet. When she fed herself, some of the food dripped or fell. 

So for the time being, self-feeding is banned on dietician's orders.

Haya's keto diet in no way resembles the Google images that pop up for that term, such as this one below. 

Here below is a photo of an actual keto meal I prepared for Haya:

We managed to bring Haya to hydrotherapy again this week. Here she is executing one of her skillful flips. 

She shuts her mouth tight beforehand and instantly gives her head a 360 while I flip her body. When you consider that she does almost nothing else independently, you have to agree it's quite a feat. 

We've suspended the weekly speech pathology sessions which weren't feasible while she was seizing uncontrollably. Now we're also waiting for our Health Fund to respond to our request for subsidization of those therapies. Until 2021 we were included in a pilot project operated and funded by the JDC for two years. That project has now excluded children from Jerusalem for some unknown reason.

Which brings us back to the infuriating conundrum of care for children with disabilities who are institutionalized. It's almost entirely funded by the government. In contrast, when children with disabilities live where they deserve to - at home with loving parents - the government largely abandons them. I hasten to clarify that: the Israeli government abandons them. This isn't the case in other Western countries.

And so institutions like Aleh/ADI continue to pocket lavish public funding. Of course, that's along with generous private donations they savvily solicit. These days, according to ADI's Facebook page, American Christians are also being duped into donating. Just bandy about those vital words "inclusion" or "diversity" and you've won the respect of your target audience.

And just to spice up your fundraising message, dig up an old Barbie Doll news item and dub it Breaking Disability News as ADI's PR wizards do here. 

Note: Those "new" Barbie Dolls - in wheelchair and with a prosthesis - were actually introduced by Mattel two years ago!