On Status Epilepticus, the status quo and my status mentis

I've written these words several times in the past few minutes to family members: 

"I'm at my wit's end. We've had a full day of seizures with a brief respite of about two hours. Otherwise they are coming every four-five minutes."

That was me losing it on Thursday night. Much of Friday night saw me similarly frantic. 

Saturday's string of seizures was shorter, so I drifted closer to sanity. Then today, after a couple of seizures, C. managed to perform well in the pool for a full 45 minutes. Here she is in aquatic bliss as we approached the chair that lifts her out of the pool.

A few hours later, she also performed passably well for both her OT and her ST who met together for the first time to decide which sort of communication board/switch would suit C. best. They concluded that what would be best for C. is a large switch/button with a rough surface that can activate either music or a story. 

The ST promised to procure such a device for her via one of the local rehabilitation centers. Hoping this won't prove to be as long and frustrating a process as procuring a wheelchair has been.*

And since then, C. has accommodated us with a few isolated seizures now and then, occasional low grade fevers responsive to Paracetamol and otherwise her "normality"'. 

It's amazing what a few days of status epilepticus can do for one's state of mind. I'm now OK with her few daily seizures and very low level of functioning. Even thankful.

But we need to forge ahead with doing something about her status quo. We'll search further for a local CBD supplier who can provide it as an inhalant. The only one we've located so far only has CBD with a fraction of the strength of the oil we now use: 11%, while ours is 30%.

Unfortunately, we aren't receiving any meaningful assistance from C 's neurologist or her staff. Somehow, I imagine she'd be far more pro-active had we chosen the surgery route i.e. switching C.'s old VNS for a new one.

* Update: C. is still stuck in her old chair while we await our May appointment in that same rehabilitation center. We'll have to bring her there seated in her new chair via a special van provided by one of our local NGO's. The hope is that the seating specialist there will be able to finally solve the problems rendering the new chair unusable.