Friday, December 5, 2008

climbing "bigkid" mountain

BIG GIRL!!! For the FIRST time yesterday Madie opened her mouth and ate the food without putting her thumb in her mouth to suck it down...! Her hands stayed out of her mouth and she actually seemed like she was exploring the texture of the food in her mouth...rolling it around and sometimes gagging but all in all swallowing it...I just have to get back into the swing of trying solids each day and it can only get better...! Its really hard! I just waste SO MUCH food! and Its real expensive...when I know that she will eat an entire shake and I know that I will get not even half a jar of food down the hatch...and with the HUGE need for her to gain weight....
Well, Shakes win.....
Nutrition appointment and GI docs in 2 weeks! less than! Dec 15th! I reeeeeallly hope I do not have too high expectations of these guys..I really hope to leave with knowledge...knowledge of some kind of feeding plan and techniques to help her take to solids better and get off the "potion" for good!! She is doing great on her Pediasure shakes no doubt..but kids cannot live on liquid diets! How will she be able to digest properly? and I am sure that once she is real into solids i am sure we will have poop issues ( I know dont need to know that! ) but I remain optimistic that she WILL eat one day! gah!
Madison continues to get us up at night..the past 4 nights er so...but that last 2 I think hubby and I have just gotten used to it and manage to drift back to sleep when she long as she is not too high pitched...LOL.
She is so awake! So darn happy!
Now seizures?? The big question is does she still have them while she sleeps? Are they waking her up in her sleep? Alot of times when I would see her seize in her sleep she would wake wining or she would just keep sleeping...she was sound asleep most of the time...dunno....Cant say I have done this
I continue to watch her like crazy....ugh. can drive ya nuts! She is a happy lil girl. No doubt something has woken in her brain. A sparkle.
Her body feels stronger although yet to do the earth shattering..but we are working on that.
She loves to be wrapped in her large blanket as hubby and I grab both ends and swing her..she smiles and even giggles sometimes..! just loves anything bouncie.
I cannot tell you how long its been since we have seen this sparkle in madie....I get emotional talking about it and remembering all we have been thru.... I KNOW that this journey is not over..I hope with all my heart that it is allllmost over...but who knows...seizures are strong ugly beasts.
Hope is what keeps us going.
Scary to think that in a year Birth to Three is gone! Such a big girl!
Hugs mamas you know who you are :) :)

1 comment:

Karen said...

oh yippie I so hope they are gone, Could it be the same miracle drug as Cami's? Ewww I so hope so, Fingers Crossed! And hooray go Madie for trying to eat, thats fantastic. Just stick with it, waste or not being persistent always wins. It will become an everyday routine to her and believe me ROUTINE WORKS!!!!!!! Make her shake a reward for trying her food. Hang in there things can only get better and you should get good feedback at her GI appt they should be jumping right on board with tests so be prepared. Cami had blood test and an Xray they 1st visit! I'm curious to know their thoughts! Sending my best your way!