Monday, April 13, 2009

GI, Feeding Team, Nutritionist, Feeding therapy..what's the difference anymore??

"No sir mama I do not wish for my yum yums" Nooo sir..

Madie in her jammys waiting for a "lets try some dinner" with mama....hahaha (Yeah, thats a Target shirt and its AWESOME! )hahaha nursin the christmas jammys as well..hey they may not fit next year! (oh those lil toes...hee hee I love love them)


I feel as if I am constantly seeing the same doctor...only they have different titles.. GI Doctor, Nutritionist, Feeding Team, Speech/Feeding therapy...EACH one I discuss the SAME things with...madies Weight, her caloric intake, her eating habits and how her therapys are going, what meds she is on, WHY madie is not gaining weight, asking me about the DUOCAL and the Boost 1.5 shakes that she does not like...telling me to go half and half on the boost and pediasure and to keep up on the speech/feeding therapy...and to keep giving her DUOCAL....

I KNOW! ehhhhh... I think 2 of them are named Katie...grrreat...:P

Each one I go to I am repeating myslef to them...that we are working on weight gain and her seizure meds are most likely taking away from her appetite...WHO KNOWS>...gah!

...and besides Insurance still wont cover Feeding team appointments...I wait to see Bills from the GI doc appointments...we shall see.....

We went to Hartford this morning rushing rushing to get there and at 830 in Hartford there is traffic... We rush thru the hallways and get to the office in time for me to fuss with my scarf and pull my beaded necklace sending beads allll over the

Picking up beads and collecting them in my pockets we make it just in time...beads are I sware falling out of the back of my shirt as I sign in...LOL...

I have a jonesin to call madies OT and ask her what the frick I should do....She is in new baby euphoria as I type having just given birth to a baby who outweighed madie by...I wanna say a few ounces...LOL Weeee miss you!!

Stopped my Neurology to ask if they had blood work results at all...woman said she would tell the nurse to call me..oh well..

I DO like the speech therapy lady already....we are going to get going on that once a week...we saw her last wed and we began to dip madies fingers in her food...which is going well..but would not say that she by no means has a steady diet of food yet....still shakes.

NOW the Nutritionist who works along side Jody the GI lady tells me that she wants madie to do the half Boost half Pediasure.. Now this means I have to go buy another non-insurance covered case of Boost for 67 bucks....(for 27)

I just feel like I have to get two things for madie....Seizure stability...WHICH HAS BEEN GREAT! she has "ticks" I call them...annoying here and there twitches...but not being slown down by them at all... ( the depakote depends on the blood work results...fingers crossed folks)AND The right nutrition so her muscles can get strong and she can gain some more tolerance for weight bearing and GET MOBILE! Her muscle tone is just weak...she is hyper flexible...a human pretzel we call her....I laugh but the fact that she IS that way makes things a bit more challenging for her.

There is NO doubt in my mind her medications effect her alot..its so frustrating when you are not given an OK to get off any meds...

Saw a young girl in the GI waiting room who was gurgling thru her tube in her nose...ya know, it was sad...and things could be blessed with what we have that we are not going thru that...:( I seriously wanted to take the girls hand..she was so helpless..completely un-alert..

We remain patient...I just want her a lilllltle less tired..she is like 60 percent to me...Id prefer a hefty LOL...

Not much else to ramble about today...Easter was great we ate WAY too many cake products..... Madie wore an Easter Dress and was in a pretty good mood even took a nice nap for me in her pack and play....mama indulged in a beer and chatted with the was good fun.

Well madie is sleeping and its 130...I guess I should finally take my shower eh?? such a rushed morning...Hoping hubby gets home a little early today.....I know he is dying to watch Baseball...hahaa

Hugs mamas :) :)



Reagan Leigh said...

So did you see my posts about Benecalorie? When Reagan's feeding therapist gave it to us, Madie is the first person I thought about. It's 1.5oz of this oily, milky substance that you can add to a bottle or mix in with food (it's tasteless) and it adds 330 calories per 1.5oz! That's pretty great! I've been giving about 1/3 of it to Reagan each day and that's an extra 100 problem! You may want to give it a try!

Sophie's Story by Elaine said...

Toes...I love little baby toes. Sophie's feet are starting to get so big...still love them anyway.

I love the pic of Madie. We wear out the holiday jammies too...way too cute not to.

Holli said...

Little Miss Madie...cute as ever!

I'll be thinking of ya tomorrow...while we're both at the neuro!! Hope your day goes smoothly!

By the way, Chad and I are getting to where we just laugh at all the new medical bills..."what's THIS one for??" We've lost count!