I was working away all day yesterday, and thankfully though sleepy, Joshua was happy in the morning as I got him ready for school, so I had hoped that he would be alright, if a little tired at school. I had my mobile clasped next to me all day, dreading the call that he had had more seizures , while I would be too far away to be of any practical use. Thankfully that call never came and he seems to have had some fun while at school, even though he was exhausted when he got home.
But the dreaded seizures did come, they just waited until bathtime once again and this time, Yorkshire Grandma had to deal with them.She administered his emergency medication once she had got him into bed and by the time I got home, he had slept them off for around an hour. He looked totally washed out by these consecutive nights of seizures and the Midazolam, but still managed to sit up in bed and smile that I was home. I lay next to him for a while and then felt that my presence was keeping him awake rather than helping him to relax, so I slipped out and came downstairs.
In order to try to break the cycle of tiredness then seizures, I have kept Joshua off school and at home today. He has been able to sleep as late as he needed and it was after 10 am before he appeared on the landing ready to get up. I am hopeful that a quiet day at home will help to reset him so that he can resume ‘business as usual’ as this is not sustainable and is exhausting for us all. I am not sure if the seizures cause the tiredness or the tiredness stimulates the seizures, as it is certainly a trigger. But hopefully tiredness is something that we can remedy today, whereas I less able to rectify illness if that is at the root cause and he is brewing something.
Once again it is the unpredictability of Joshua’s seizures that makes them difficult to manage, though I am fully ready for Thursday, which has become a troublesome day of late for the last few weeks. Of course I realise that because I have taken precautions today, that will probably – and hopefully – be enough to scare the seizures away!