Joshua had a bad day yesterday : it began from me and him at 1.41am when after struggling to keep him in bed, I gave in and let him get out and come downstairs. He had his weetabix about 2am and watched ‘The Show’, although he was alternately restless and then vacant and staring. I think we finally feel asleep on the settee around 5am but were awake again an hour later, and he had another seizure at 6.30am. As it had probably been the cause of his wakefulness, as I am sure he feels them brewing, I felt some relief that now he could relax and get on and recover.
But epilepsy blighted his whole day. Yesterday I sent him to school in the taxi as usual, though as we waved him off, I had an uncomfortable feeling that the day might be unpredictable. Living in he shadow of epilepsy does not really get any easier with familiarity but you do learn to detect the telltale signs. But I consoled myself thinking that he only had to last until 11am, when I was collecting him for his review OT appointment. Mind you , after Tuesday’s, that was not a prospect that I was relishing! Even so, I had two hours working in the office getting a report finished, then I set off to school.
Such a great feeling to get the giant beam that Joshua gave me when I arrive in class for him, even though he was clearly feeling rubbish. So we went to our local hospital and waited for our appointment. After a while, Joshua got bored sitting so he wandered around the waiting room greeting all of the other patients, particularly the female ones! Next we were called in and thankfully she was pleased with how his wrist was resting in the splint and so she only applied extra padding, but did not need to mess him about too much. I was impressed at how tolerant he was of her exercises to stretch out his arm, shoulder, wrist and fingers, but really, he was not fully aware of what was happening, still numb from the seizure earlier in the day.
Ever so proud of how he had handled the appointment, I treated him in the hospital cafe before we went back to school. None of the children were in the classroom when we got back, as it was lunchtime, so he went straight off for school dinner. Either I could go back to the office briefly or I could stay at school, as I had a meeting in another hour and a half, so I decided to stay on site,and then I would not be far away if he had another seizure either , as it did look likely. Community cafe made a great temporary office as I sat quietly with my work spread out in the corner.
So I was early for my meeting, but I was relieved not to have received any urgent calls from the classroom in the meantime.And so Joshua was waiting in his classroom when we finished, surrounded by staff but with the rest of his class having gone home, as we overran. Eagerly the staff told me how he had helped to make pancakes – there was only a little flour evidence on his uniform – and had stayed awake all afternoon.Taking him down the corridor and out to the car, he was not very responsive to all the staff calling out ‘goodbye ‘ to him. As I had just got him in the passenger seat and was loading his wheelchair into the boot, I heard a familiar snorting, gutteral sound. Epilepsy had struck him down again, so at 4pm in the school car park, he had his second seizure of the day. Reassuring him that all was going to be well, I waited for the seizure to pass and gave him a cushion to rest his exhausted head on. Car ride back was uneventful and thankfully he was able to walk into the house with support, when we got home. He managed a small amount to eat and I took him for an early bath as his hands were his usual post -seizure contradiction of cold but clammy. He warmed up in the bath and so we were both in our pyjamas for 7pm.
I fully expected him to collapse in bed after his bath for a long sleep, but he was still unsettled, so he joined me later in the evening, had some cereal and at 11pm we both headed for bed. I was woken in the early hours of this morning by having chunks of my hair pulled hard, which he has found is a very effective means of getting my attention when I am in a deep sleep. So let’s see what today throws at us….