Minus the strands of my hair! lol!! she was laughing hard...:) :)
Awe man! thiiis kid..so full of giggles today! fiiinally a day when the teeth don't hurt or she is constipated or is having seizures alll day sleeping.(one so far today)...I call these honeymoon days...ya just never know what each day holds with unpredictable seizures...
So far she wolfs her Pediasure drinks..can't say anything monumental with solids but we are going to try for dinner later...Her sleeping continues to be exhausting...down by 830/9 and up at 6/630....Now, 8pm bedtime is great..but it makes a long day for me...looong..with short naps with tossing and turning...she is becoming easier to wake as well..at one point you could have football parties in her room and not a peep...lol..I guess that is another sign somethin' is working!! I HAVE heard of using melatonin...I want to use it for ME instead!! lol...Dr. Neuro (D) told us about it...
She always seems to have the most energy in the evenings...dunno why..hubby said maybe since the drugs have almost worn off for the day she literally feels better...then at 6pm its time for more and by 8..zzzzzzzzzz shweepin...
We are (well I am) going to begin weaning her off her clonopin tonight..I am nervous for this with fear of seizures getting increased buuut I also know I don't want her to be on a barbiturate any more (dont worry doc said OK..lol) I have just hesitated cause Ive felt like she has been OK...
She weined off her Topamax with flying colors a few months ago....I guess as long as you slooowly decrease there should be no ill effects..I see this as positive improvement..if anything she will be more awake!! I tell ya at one point she was on her Topamax, Clonopin and Zonegran...her eyes would roll in her head and her head control was terrible...dizzy like...
In other news...EEG on tuesday!! A looong one..at least 6 hours....oh the lovely accommodations of children's medical center....We will be armed with light up toys, blankees, Potion and shakes, and money for cafeteria coffee!! I will take some pics..:)
After EEG on tues we go back the following day so doctor can tell us alll about it...he may not get to read the whole test but we will have a good idea for the time being...Ill write about it....
Im horribly nervous about it...I just can only hope its no more IS which I am pretty convinced it is..buuut we need to identify the types she is having....ugh.
One day at a time...Its a busy week ahead with my stupid job putting me on allllll day Monday, EEG at 830am tues, neuro at 1 on wed, Madie's P.T at 3 on thurs, back to work on fri and sat...
I surrender!!
Well hope everyone is hanging in there and Ill be posting in a few :) Unless anything remotely exciting happens..
~J
1 comment:
Oh boy joy those lovely EEG's are so much fun arent they. Try a 24 hour one then you would really pull your hair out. What to expect with this longer one....will be everytime you see her have a seizure you have to push a button and it marks it on the machine so Dr.s can look into it and see if what you are seeing is possibly a seizure. You should get results that day since they can go and look back at what you are marking.
I hope it all goes well...I really dont have any good ideas for keeping them occupied...Cami for the most part was pretty good she really just sat out of it most of the time anyhow so it never bothered her...haha imagine that she is so on the move now I couldnt even imagine trying to do that test now....ack reminding me she does have to have one this year!
Best of Luck!
Karen
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