Today is day 12 since Joshua has last had a seizure, which is great news but means that I am now on the edge of my seat, jumping at work each time the telephone rings, expecting the call from school. Today is now a record since his surgery, as he has never exceeded 11 days before and that has got to make him feel better. He slept a lot yesterday and I am reluctant to disturb him in case that sets off a chain reaction, that becomes a cluster of seizures and wakeful nights.
I do not utter these words out loud, such is my superstition then just by saying it, I can make it happen! I may well be tempting fate just blogging about it, but if it is on my mind, I have been sharing it and so we will test out that theory and see what today brings……
Before last year’s brain surgery, Joshua never had one day without seizures and so, just one day’s respite from their devastating impact feels like huge progress to me and it has got to clear his head . So to be able to achieve twelve seizure-free days is overwhelming and I would love to enjoy and celebrate that without looking over my shoulder, ready for the tsunami that may be on the horizon.
We are now in the month of December and in the real countdown to Christmas; the epilepsy nurse warned us at the outset that the festive season was fraught with triggers for epileptics : excitement, late nights, unusual meal times and often end of term illness, can all aggravate seizures. So that is something to be aware of and to brace ourselves for. Fortunately we will be at home this year and so Joshua can simply sleep it off if needs be, or there will be more family on hand to share the inevitable sleepless night potentially! It is just an extra factor to build into the festivities that most parents will not need to worry about.