Roller coaster day ..

Today has been a rollercoaster of a day, H woke early as usual after a reasonably good night (by her standards waking only twice between midnight and 7 am is a good night) she demanded toast almost before opening her eyes ..she ate a little then wobbled to her feet and tried immediately to get into as much trouble as is humanly possible for a child at that time of day. Running taps and tipping and spoiling just about anything within her reach , her reach is pretty damn high these days. We tussled a little over a couple of things, she seemed to think that hitting me was a good idea. Funnily enough it doesn't really warm people to her. She was what I can only describe as agitated.

I huddled on the sofa with her trying to convince her that it might be nice to sit together and watch cbeebies , she humoured me a little struggling and wriggling from my arms to pinch me some more. Then her face began to twitch , her eyes became heavy and closed half way, her difficult to understand words became impossible and she lolled to one side. Giving in to whatever it is that overcomes her this way she laid against me. Deep in side her body tiny rippling movements pass through her upper body sometimes spiking to a short sharp jerk . The jerks passed and H dozed on. She woke about 40 minutes later , her face hanging mask like from her skull, blank , expressionless and then she cried.

I guided her upstairs and we lay on the bed together cursing the jerks that scare her. Just as they returned. Eyes rolling again she slipped back to her unconscious state. It was 1 pm when the cycle finally ended and she seemed awake and fully conscious for the first time today.
We played for couple of hours at home .. washed her hair and dried it with the hairdryer , and played silly giggly games . Abandoning the idea that our teacher training day would be spent at Tropical wings. Her carer was due at 5 and there had been talk of a short trip to the bowling alley so we concentrated on getting ready for that part of the day . Just four hours later and she began to slur again .. an almost mirror of this mornings events she fell into an unconscious state . Thankfully lasting only 50 minutes this time. She woke and ate some dinner but still looked pale and droopy around the face . Her carer came and decided to chance taking her out for a while and she managed well.
I need to make contact with the neurologist before our appointment next week I think. Things are changing , something has changed ... its not good :(
As I lay cuddling her off to sleep tonight amongst the lights and sparkles of her bedroom I couldnt help but wonder what the future might hold for her and for myself ... then I force myself to stop thinking about what ifs ..remembering we need to live for now
And as always the very last things she said before going to sleep was I LOVE YOU and I remember how lucky we are that she knows we love her too and can express it to us.



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Sandy :)