Until yesterday afternoon, Joshua had not had any seizure activity for the past ten days, which is his record since his hemispherectomy last Spring. I make a note of his seizures on our kitchen calendar and I became aware that the seizure-free days were becoming more and more. Once it reaches a week of no seizures, I start to hold my breath because :
– it can mean that one is on its way soon, so I become more aware of changes in his eyes or movement that might indicate that a seizure is imminent.
– Could this indicate a change, could they really have gone forever?? I hardly dare wish that.
– how much better must he be feeling with that burden lifted, even for just 10 days?
Joshua seemed to anticipate this afternoon’s seizure and so, I was not at all surprised when it finally arrived at 3pm yesterday. He was lying on the settee and I was eating my late-lunch in the same room, so he was never in any real danger but it lasted for a long time and then he was his usual vague self for an hour or so but then he joined me in the sunny garden.
Even though the seizure took place at 3pm. here we find ourselves watching Shrek 2 at 1.30am! I am hopeful that we can get back to bed soon but recently, seizure activity has had a disruptive effect on his sleeping practice. So much so that, next week we are having an ambulatory EEG to monitor, at home rather than hospital. He will be wired up on Wednesday lunchtime and then will hopefully make it back to school for Sports Day. He will sleep with the electrodes on his scalp and then we will return on Thursday to have the hospital check that the electrodes are in tact and that they are recording data. then we will return again on friday , to have them removed.
In advance I have two main anxieties :
– That Joshua will sleep like a baby for 2 full nights with not a seizure or any wakefulness, so that the recording opportunity will be wasted
– that some of his classmates may tug at the unusual wires coming off his head, either hurting his scalp or rendering the recording invalid.
But, like other EEGs and tests before this one, we will go for it as open-minded and positive as we can and hope that the experts can get to the bottom of these sleepless nights, which we are in the middle of now!