Monday, May 3, 2010


Well here we are. Tonic Seizures that may last no more than 20 seconds and put her to sleep each time. about 2-5 a day ya just never know...
When I feel like we are taking good steps forward in the fight against seizures we take 4 steps back.
This morning she was so hungry and cried and cried when I was trying to feed her her speckle of Clobazam with Oatmeal...then when she got her bottle she wolfed it down..drying after two bottles so I said Ok..want more.?
Yup. Note to self: 3 bottles is too much. I sat her up and she was sittiing for few minutes then layed down and slooowly her mouth began to fill with her food...OMG yup. Up up it came. She was pretty upset that I was wiping her with facecloths and changing her jammys but was fine otherwise...whew.
Feeding has always been an issue and Madie gets the prize for being the worse eater out there! Holds her baby food in her mouth and gets upset but finally gets her thumb in there and kind of suckles her food down then ya have to pry the thumb out to get another bite in...Sometimes I feel like we will be buying Pediasure forever! Do I get back into that stupid feeding therapy that was 40 bucks a visit to watch some college age girl try to feed Madie food...doing the same crap I do at home??? (for 30 min per session too!)
Do I sit her in her chair like every hour and try to feed her solids?
She has such mechanical problems when it comes to eating and cannot grasp the whole chewing thing...something that you and I just DO...
very frustrating.
And her growth is so slow probably due to this...we all say that she will be tall and thin like her dad. A butter noodle and bread
Ill take eating ANYTHING right now.
Aside from that well...
Madie is Madie.
Went a little lower on the Clobazam and although I do not see any change in seizures aside fromn not seeing Drops and seeing Tonics now (so maybe a change for the bad not good)...her mood is better I guess. I think its just a tough transition I mean we are pumping her full of meds and trying to get her into her school routine and eating more and therapys and its just alot on the kid.She certainly has a limit of the ammount of activities put upon her. and will LOUDLY let you know when she wants mama and no more.
She is 3 and a half! :( My baby girl will be 4 in October and I just dont believe it!
Baby girl is sound asleep next to me as I lay on the floor with the laptop asleep from her seizure this beautyfull little girl...I look at her and cant believe she is real! Then I want to cry because she is real and she is such a special child..a child I never expected to be raising and how I had such high hopes and dreams knowing I was having a daughter compeatly changed when we realized just how madie will be.
Tomorrow we give a call back to Neuro and get Madies blood work done to check her V. Acid levels and liver etc..
A good week weather wise so I hope to get in some good walks with the kiddo as well and maybe finally finish the mulching job in the garden that just looks too cute after we bought some new flowering plants.
On the bright side folks.
We keep on movin.

1 comment:

blogzilly said...

It sucks that things are such a struggle. I have nothing to say that you haven't heard before or that can really help. Just know that you guys are in my thoughts and I hope to see a shift towards the positive soon.