What a week! We spent the first two days in hospital (one in A and E and one for a scheduled appointment at St George’s.). The rest of the week has been spent looking after Charlotte. I wrote about our adventures here.
We were due to finish off bits and pieces for school, but to be honest a lot of bolstering was needed this week. I am SO grateful for large family. When one person is down, everyone steps up so the care of that person is divided and no one person feels too overwhelmed.
There has been much film watching with healthy fruit salad snacks, snuggled up on our huge sofa. It has probably been the hardest week of Charlotte’s health woes. There have been many tears shed, especially at the beginning of the week.
Lillie has been amazing. She is basically with Charlotte pretty much 24/7. She always lightens the atmosphere and completely always knows how to get Charlotte laughing again when her seizures are going hammer and tongs. She is my right hand woman in every way.
Wednesday, the seizures (or whatever they are) got so bad that Charlotte stopped breathing through each one and was having approximately ten per ten minutes. They were beginning to scare the little ones. I phoned the GP and Gary phoned the hospital. Now I completely understand that these are not epileptic seizures, and therefore not dangerous in any way, but I am Charlotte’s mum and watching her shaking, clamping her mouth up and down and (particularly) not breathing for up to a minute at a time is something I wouldn’t wish on my worst enemy. Both the GP and the hospital were very good, and very reassuring, but neither could offer any solution to gain any relief from them. Gary and I were incredibly concerned.
Thursday came about and the seizures had changed to something new again. This time they were recognisably tics, and although they were still happening frequently they were not lasting so long or clamping up her throat so thankfully she could breathe normally. I gave the littles the day off and we all snuggled up to watch a video to try to distract Charlotte. It didn’t really work. Ads surprised everyone by buying them ice lollies and chocolate, whilst Thomas decided an impromptu worship session was just what we all needed.
So much fun and so needed.
Today we are pretty much convinced that Charlotte has a tic disorder, although the doctors won’t diagnose them as such until she has had them for a year. Most tics right themselves within a year and we are hoping that will be the case with Charlotte. Muscle twitches are not uncommon with fibro but Charlotte’s are quite severe. That said, the tics themselves are quite humorous (bear in mind that our family uses humour as a way to deal with things and three days ago we were worried the seizures would kill her). They seem to be altered according to her environment or the conversation or activity she is doing at the time. It is like watching Charlotte in tic form! Ads was talking about upstairs and downstairs and her tic just at that moment was her lifting her hands up and then down again! Yes, I know, we have a slightly macabre humour. But anything is preferable to a sad, worried Charlotte and her sad worried parents. I’ll take funny any day of the week 🤪
This morning I took both Charlotte and Lillie out to the shops and then for our normal lunch. Charlotte bought some huge strawberries and dark chocolate because she wanted to spend some time with her younger sisters as she felt they’d been through the mill this week.
We are fast becoming the weird family of our little village, but we don’t mind. We’ve got each other, and we’ll just be weird together ❤️