Not much to report I suppose..>I am bored out of my mind!! gah!! Its cold and slushy and rainy and muddy outside and there is no way i am running errands in this muck...Madie Madie....seizure freee for 3 weeks now!!! eh?? say its not so!! NOW I can not say IF she has seizure when she sleeps ....so do not quote me on it....An overnight EEG would be wonderfull. and there is noooo doubt that we will do one sometime....
I am scared only cause we have been down this road back around the same time last year..comming off the ACTH and thinking we were DONE with this...and durring the family christmas party almost 2 months seizure free she was having head drops again....
Doctors still hesitate on lowering any drugs now...we are still stickin it out with the sleepy AM drugs for now...due to her vomiting up a storm when all three are given in the PM.....
I am loving some of the little new things that madie does...she did awesome with her OT yesterday with both hands on her koosh and pulling!! she was smiley and almost gave us a giggle it vibrates and plays music.. you can see it in the background on the coffee table....lol
She actually pushes on it...
OT told us to get one of those little fisherprice pianos that she can sit in her bumbo (on good days doesnt mind the thing) and see if she will push the keys.... Ohhh boy.....hmmm maybe....:) Doesnt help that hubby plays...and would just Loove that toy! LOL
We are also offically in with the feeding team at childreans hospital...I do not know how often we will meet but its one step at a time......
Ill keep you posted on that.
Madie only woke once last night and waited till 330am to make noise...whew...dunno what the deal is....I am going with Cami's mom and saying the ol appetite is ragin...she hardly eats in the daytime..! I have forver blamed the Drugs for her lack of appetite....even since we went up on the Zonegran....ugh All the calories they want her to get in a day?? oh man! hard to do....one step at a time agian.....
Goal to slowly get her transitioned to food...one jar at a time...and lowering shakes one shake at a time to whole milk...not going to be easy folks.
Seeing Neuro for a follow up on Monday as welll cant imagine much from that....oh bugger.
Well I hear trouble....gotta go get her...:)
Brrr stay warm folks! Im making my chicken soup tonight! yummmmooohh!!
Hugs
Me
HEY Austin! any news!??
2 comments:
Oh hooray for those seizure free days. You will be able to see alot of little progress here and there now that her little brain isnt disturbed by those nasty seizures! I'm so excited for her and I feel ya about not getting to excited just yet and you will feel that way for a long time, I did for the 1st year of seizure freedom with Cami. You would think one could relax but every lil new thing has you on edge. But really any seizure freedom is good for her maybe she can gain some ground now!!!!
One last thing I wanted to say is with introducing the whole milk maybe you can help her out in liking it better. Try some Nestle Chocolate syrup or powder or even the strawberry flavor. Worked like a charm for us and my sister. You never know she might take a liking to it even quicker.
Sending my best your way, and we are feeling this nasty drizzly weather all week its about to drive me nuts. Uggghhhh!
That is just so great about the seizures (or lack there of)!!!! I'm so happy for you!! I'm sure everything will pick up now! Hopefully the eating too!
Post a Comment