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!