Sweet home, Jerusalem

In the hydro pool this week

First, we are at home, thankfully, having avoided the morass of the ER and the hospital ward ["Status report: Status epilecticus"]

Last Friday night, the hard seizures reached 3-minute intervals. My med drawer only had Diazepam which expired June 2018 and the pharmacies had none in stock. (Doctors tend to discourage its use at home so there's not much demand for it). 

But I was determined to keep Haya at home. So I relied on the pediatrician's assurances that those dates are probably posted just to compel us to buy fresh meds. And I gave it.

Folks, you can now rest assured that those expiry dates truly are, at least in some instances, somewhat advisory only. That 2018 Diazepam worked like a charm, at least for us. Haya slept seizure-free for some eight hours.

(Apparently, not all drugs are as resilient as our Diazepam, but undoubtedly, many are. So check before you discard. I'm so thankful - but have no idea why - I didn't include that Diazepam along with all the other expired drugs I recently tossed.)

I've still got six more doses here but for now paracetamol and Advil (ibuprofen), given alternately throughout the day, have been adequate.

That's in addition to her anti-epileptics and cannabis, of course.

While I can't say she's fine, relative to what she just endured, things look positively peachy.

She floated calmly in the hydrotherapy pool where we take her for an hour on Monday, although, "slept" would also be an accurate description.

And has even done her 45 minutes of assisted walking a couple of nights this week..

Today her carer took her outside for her first time since her deterioration began.

Here is Haya, sleep-floating (at the top) and bundled up for her walk (on the right).