The real good moods come for sure but they don't last long..she is generally sleepy...chomping on her hands and the stinky drool that comes with it I just cant keep her clean...and when I do put any cream on her its drooled off in seconds...and I don't want her eating that stuff!
Don't forget bedtime...after a day of so so naps she is not about to go to bed..springing to life and making super loud noises in her bed...grunting and screaming and shouting...and wining...Seriously happiest sitting with me or laying down on her blanket or on the couch...
So in a nutshell....well......Seizures have been OK....some breakthrough ones I mentioned in the last post and one today.....I had to call the Neuro from the road on the way to Jersey on Friday since I heard nothing back on Thursday being new years day..... I literally called them from my hubbys cell phone while we were on the road to New Jersey! and they said to just remember to give her her meds at the same time each day....Since Christmas Eve we have been messing that up....ugh...WAY t too crazy! AND speaking of crazy....after driving 2 hours into the trip to New Jersey we realized we had forgotten her nighttime meds...!!.....we called two Jersey Targets with hopes of getting small doses just for the evening...well Depakote Liquid allllways has to be ordered so they had nothing...and clonopin was only at one.....GOSH...folks....
So after being told her meds need to be at the same time each day we were realizing she was going to get her meds at 11 when we got home instead of the usual 630...double ugh.
SO as you can see the chapped cheeks are bad....
Tylenol...well with her other meds...at times can make more vomiting...and we also realized that if she has nothing in her stomach with her meds she will vomit as well...sometimes its hard enough to get her to eat her bottles...
The food battle has been given up on for now...I am STILL standing by ever since we increased her Zonegran her appetite has gone downhill......BUT IM NO DOCTOR!
Its a force feed fest at times....and if she reeeealllly doesn't want her bottle she will vomit...there is no forcing the kid who is just not hungry.....
How many calories was that again per day??? UGH.....alllllot.
Neuro is saying that he is thinking that the drugs are working together to help her seizures....so no OK's to wien anything yet....
I will take madie for her blood work this week and we see the feeding team on the 15th....and Back to Neuro not till March......
Thank you for letting me do some venting tonight....Im SOOOO glad the holiday Parties are over!! whew. adios needle shedder....errrr pretty Christmas tree.....lol
Thinking of you all. :)
Easy on those Cheetos cami~girl..:) :)
Me.
1 comment:
A word to your Dr because mine said the same thing about the combo could be working. I told them well the combo wasnt working before the new med so its time to remove the old and find out if she could handle it solo and hey it worked!!!! She is only on the one med and has been so for a year and half. Like said they will never know till you try it. Uggghhhh the Dr's drive me nuts!!!!!
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