This week we are going back to the hospital but its not a bad thing: we are going for a BASELINE EEG. i'd always hoped but never thought that yossi would be healthy enough. now that his seizures have been controlled for a while the doctors want to see what his brain patterns look like without seizures so they will have something to compare to all his episodes.
to be sure yossi is STILL having seizures but he's down to 1-3 a week which is basically none...ive always been afraid to over-medicate him so we've always struck a delicate balance between the seizure meds, but we were tip toeing around it too much. we never increased the valium quite enough to be able to reduce another med without seeing increased seizures. so this week we increased his valium to make sure that no seizures are round for the eeg. we also increased it in a larger increment than usual so the side effects are hitting him harder. i hope his appetite and energy will be back in short order.
we are down to 4 seizure meds. we've kept this balance for a while and so we've been able to change other medications. we switched yossi's reflux medication to another that was safer for his bones. that in itself took many weeks of swapping bit by bit.
the doctors dont want to adjust his seizure meds at all for a while, we havent had success reducing any of the meds. we;ve tried each one and the seizures came back. so while i wish he was on less medication, maybe this is the balance that he needs right now, its what works for him so im happy enough tht we have a good combination in place. so instead we will use this time to adjust the speed of yossi's feeding tube feeds (why that matters is a whole different post, it just has been very low on the priority list and we are finally at a place where we can take care of it )
i always wanted yossi to be like other kids... i got my wish. in the past 2 months he had a cold, a stomach bug, a sprained hip, another cold... and now the beginnings of one of those yet again! while on steroids he was spared the joy of this childhood ritual but it caused him much greater ailments and risks.. so as annoying as it is that he is constantly sick , its incredibly, refreshingly normal. so i wont sweat the small stuff, i'll embrace all the adventure that life has to offer and save the sweating for when i carry yossi up and down the stairs. there;'s bound to be alot of sweating cuz he feels like he gained some more weight!
i cannot describe to you the feeling of seeing yossi transform into a different person as he gains weight. its done wonders for all areas of his development. as resistant as i was to the gtube surgery and as annoying as the tube is alot of the time. im more and more grateful every day that we got it for him.
