How’s Taz?

I realise I hadn’t given an update on how Taz is for a while. So here’s a quick one. By our standards, things are much better than they have been.

Seizures-wise that means tonic clonics about 60% of nights. They are violent and make her go blue. We have night care three nights a week which helps enormously. Even on a night when she does not have a seizure, we are awake at every rustle. During those precious three nights a week, we have no monitors in our room. Just a doorbell which the carer can ring if the seizure is a very bad one. The weight lifted when a night carer arrives to sit and watch over her is enormous. In addition to the night seizures, she has been having tonic seizures that have been clustering in the daytime. These crept back in November and eventually became a weekly occurrence. These are horrible, make her cry out in terror, go blue and stiff as she stops breathing during the tonic phase, but they only last around a minute or so. Between seizures and after she is ‘out of it’, sleeps a lot and will not eat or drink. This lasts about a day and then things gradually improve over the following few days until she is back to her whirlwind self. We have therefore put up her Epidyolex (CBD) which seems to have helped the tonics, although it’s early days.

Outside of these episodes, and if she hasn’t has a seizure overnight, she is on sparkling form. On these days, she’s bossy, determined and inventive. This morning she woke at 6.30 (it’s now 8) and has already demanded books be read to her, eaten breakfast, played ‘getting in and out of the laundry basket’, pressed multiple switches of all kinds, and demanded a ‘Velvetiser’ hot chocolate (keto version). A joyous example of her improved cognition is that she only accepts this in an official Hotel Chocolat Velvetiser cup (see pic). She marched this milky mixture upstairs, lurching it precariously away every time my husband tried to take it from her to protect our carpet. She is now next to me as I write, having abandoned her treat, drawing on a pad of paper / the floor and emitting extremely loud screeches for attention. My husband is right here looking after her but I think she wants me to stop typing. She’s just picked up my husband’s boom mic (cat on a stick, he does filming for a living), and is whacking it (the metal end) against various painted surfaces. She’s now vigorously massaging James, our 17 year old cat. By way of continuing this live blog, in the manner of BBC News reporting from a parliamentary debate, I can confirm that my husband has just dropped a poo on the floor (not his). Meanwhile Taz is bouncing up and down, squeaking. All of this nonsense feels like a treat and makes us laugh as we watch her sparkle. It’s head-in-hands exhausting though, and by 6pm after full day like this, we can barely move.

It’s also the start of the Easter holidays. For the next ten days we have no night care and no respite. We are also going to Butlin’s for some of it. We have bought walkie talkies especially. A physical manifestation of what our expectations for this trip are.

Taz has to have surgery in a few weeks to replace her VNS battery. It’s day surgery but will be an extremely long and tough day for everyone making it happen. Last time my mum and I did it, you can read about this here if you are interested. This time my husband will go and is in the process of recruiting a sidekick. Anyone keen?