Friday, March 12, 2010
A possible change in meds...I hope...
Ok OK OK let me get my thoughts strait...which can be tricky..lol
Im stressed. Im Frustrated. Im overwhelmed. Im tired. Im just...uhhhh
I dont like to talk about seizures much cause quite frankly I want to show the happy side of madie and she is happy for sure..
But I feel like I need to just vent about the s word right now..
When ya try to feed her. Boom drop..when ya try to play with her..Boom Drop. When she trys to hard to get up on those little knees and crawl. Boom Drop. Loves her noisy box and vocalizes and plays with her toys.Boom Drop. Sometimes she crys and sometimes she just kinda lays in her fallen down spot for a minute or so then gets back up. Sometimes she hits her head sometimes she hits MY head..
Either way Ive had enough.
I put in a call to the nurses (who only sometimes answer the phone but are nice as can be) to PLEASE give me call back and I want to discuss a possible med change. Its so time.
I am SO TORN.
To see how madie is these days...not so much sleeping all day but lethargic..irritable...hazy eyes...and usually by late afternoon if she takes a good nap she is better more alert and happy by then.
I just know she can be better. there is a girl in there who is trying to fight her seizures...Its seriously like when I see her do something say..try to get on her knees...seizure demon comes in and says "ohhhh no we cant have that" BOINK. down she goes. Its breaks my heart even typing that. Cause I can just taste the progression that is not being aloud to happen..
It just comes with our lives. We go thru each day at times disregarding seizures when we see them like we are pretending they dont exist. Maybe Madie will just have them forever..maybe its how it is,..do ya ever just wave the white surrender flag to the seizure gods??
Still very stuck in one spot with development as far as I can tell..little things here and there..as her eating 3rd food suddenly. whooo knows.
I anxiously wait for her CMA genetic test to come back it could be a few more weeks.!
So you could say I am pretty stressed and tired from nearly 3 and a half years of this..and many more years to come.
Her new thing is giving "loveys" she will grab around your neck and put her little mouth on your cheek as she is kissing..very wet experience but too cute..she pulls hair big time too! ouch. whatever comes in the path of her hands she will grip it..not so much seeking out objects but a grasp nonetheless..
This weekend Madies Aunt Brenda is coming to visit for the week and tomorrow we will all be having dinner at my inlaws. As long as Madie cooperates and eats and doesn't meltdown..this mama will be fine.
Posted by Jamie at 11:47 AM