It seems to have been successful to allow Joshua a quiet day at home to recover : he had much more colour in his cheeks when he awoke, he looked much less washed out. The taxi driver and escort reported that he arrived at school happily and full of mischief and his diary reported that he had a much more active day at school too. So my plan for him to rest and reset seems to have worked and I am very relieved too as we are out of practice with daily seizure activity and these are not days that I wish to return to. At one time, he would begin every day with a couple of seizures before he had even got out of bed and so we had the daily dilemma of whether or not he should go to school. He was just exhausted all of the time and we lived life on a knife edge. Compared to those days, pre-surgery, he is much improved and it is often a useful reminder to remember how far we have come: last week felt like a bad week for seizures but it was actually just a shadow of what he used to have to tolerate every day, and I am most grateful for that, and everyday that we are not visited by epilepsy is a gift.
Then there were the exhausting times post-surgery, when Joshua would not sleep for 48 hours after seizures; when he was so restless and starey-eyed and looked as though all he needed to do was sleep, but his brain would not allow it somehow. Those dark days were not sustainable for any of us and thankfully, that time has passed too. Yes we had some bad nights’ sleep last week, but they are isolated disturbed nights and in the main, he sleeps better now than he has ever done in his life.
So on this wet, grey November day, I am happy to celebrate how far Joshua has come and lets hope that this week’s seizures, are just a blip on an otherwise pretty even keel.