It seems to be a long time since we had a weekend at home, to catch up on those jobs that we tend not to get around to – I even made myself a list yesterday of the tasks that I wanted to do. One of the jobs that has been waiting for me to get around to was updating Joshua’s seizure record; I write on the kitchen calendar as we go along and then update an Excel spreadsheet to look for any trends ready to be able to discuss them with his consultant. That shows me that the longest break between seizures that Joshua has experienced this year was in March, when he only had one seizure during the month and so there was a gap of 21 days between his fits. That is incredible, given that prior to surgery, he would never have any days without several seizures! That has been his 2016 record, but during three months of this year, he has managed to go 13 days between seizures, which is also really unbelievable. I have tried hard to stop counting days during the seizure-free periods, as initially I was counting and expecting the worst around the magic 11th day. I am now better at letting it happen.
March was his best month of 2016 but it was followed by his worst, as he had 9 seizures in April and required his emergency medication on three occasions. While that will have felt bad at the time, hindsight gives me the perspective that even our worst month now is better than most of Joshua’s days before his brain surgery. While we still have unpredicatability to handle ,sleepless nights to cope with now and we have been unable to rid him of the drastic side effects of his anti-epileptic drugs, I must say that Joshua’s epilepsy has been improved by his surgery. I know that they were unable to cure him and remove seizures and medication from Joshua’s life, as we had hoped, but Great Ormond Street neurosurgery has had a massive impact upon Joshua’s life. I complain about epilepsy and its unfairness on Joshua, but I am grateful for the significant improvement in the frequency of seizures, I really am. Through the skill of the surgeons, they have altered nature’s changing course and that has to make Joshua feel better.