well things have been quite good lately, james spent last week in hosp getting overnight eeg's done and we also found out he had strep throat and he has been on antibiotics and i have to say since he finished them he has been a different boy he has been happy and chatty and its been brilliant to say the least xx

i was away all day yesturday at a family funeral through the west and when i got home last night he was all over me like a rash lol and i loved it i got smothered with kisses and cuddles and he really seemed to have missed me xxxxxx (i should maybe go away more often lol)

well what a bloody day we have had xx i thought the yukky big nasty seizures had gone as he hasnt had any since saturday but my god they have come back with a vengence bigger stronger and a little different xxxx soo scary to say the least the noise he was making was terrifying xxx

he had 2 of them but is thankfully now asleep on the couch and hasnt had any since so i pray for a quiet night and that my gorgeous boy gets some peace xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Tuesday, July 7, 2009

well we had to take james to hosp via ambulance on saturday 4th because of those damn seizures and i just want to say a big thank u to our wonderful friend caroline for being at the end of the phone and help me get through it xxxx we love u so much caroline u truly are my rock xxxx

so the hosp visit led us to find his phenytoin levels had dropped in 4 days from 11 to 6 and the doctor said he def had a cold aswell as his ears and throat were red, so he had ANOTHER loading dose of phenytoin and an overnight stay in the hosp

he seems a bit better now and those big yukky seizures we were seeing over the last week have gone and his little ones are once more

my other big concern with james is his eating i have tried sooo hard over the last four years to get my boy to eat orally as best he can but recently he just isnt interested im hoping the increase in seizures and various infections are all that is holding him back and when he gets better his eating will improve but u know u always have that bit of dread in the back of your mind that this is it x but i dont worry so much now he has the tube as at least he is getting all the right nutrients so that is something i guess

also we were very lucky that his wonderful consultant was working on sunday and she caught us before we left the hosp and it looks like james may FINALLY be starting the ketogenic diet and hopefully before he goes back to school in august YIPPEE LOL

we also have a date for his 48 hour observation in hosp which will be on 13th july (doc said 5-6 weeks) so im very impressed seeing as it was only arranged last week, so 24 hours will be observation by the nurses and 24 hours video eeg so hopefully we will figure out if his distressed moments are seizures or not

so thats been us lol plenty going on lol

Tuesday, June 30, 2009

hosp went well today, going to go into hosp for 2 overnight stays 1st night video eeg second night nurse observation so pray those nights are really bad so they can figure things out if not we'll keep doing it till we get bad nights xx

gonna wean off clobazam starting tomorrow then add another to try and help fits pray this helps also

still no further forward on keto damn hospitals but we'll get there eventually

still having those scary seizures wee soul but we go on every day trying to make things better and who knows we may even get to the light at the end of the tunnel xxxxxxxxxxxx