CHOC Day 14: Closer to Normality

THE DAY BEFORE WE LEFT FOR CHOC

For Caitlin today was about deceivement, cuteness and how much she could get away with because today was Stephens turn to be the leader in feeding therapy. He actually did a really good job leading the meals, he has this gift of being able to talk to Caitlin to get her to forget that she is actually eating. They talk about where the food shes eating comes from, or how yogurt is bacteria, or which animal her meat is from. I think she throughly enjoys talking about it and learning about her food and how its made, and I think it helps her understand more and helps her eat.

TAKEN TODAY

It is funny to see how she reacts when I am leading and when Stephen is leading though. With me she doesnt mess around, we have a little bit of fun with our food, and it gets done fairly well. With Stephen, lets just say she has him wrapped around her little tiny finger, and found a way to try and negotiate with him, and try and be cute in order to get what she wanted. It was a little funny, I must admit, it was comical to see her tell her dad to "look over there" and then dump part of her meat out when he fell for it lol. I am proud of the control and the patience that he had today with her and eating, it can get really frustrating at times.

Tomorrow is the big day and her G-Tube comes out. Its amazing to me that all of us as a family were able to learn this together and help make the g-tube coming out a possibility and a reality in her life. Tomorrow is going to be the first day of the rest of her life, where she can wear a 2 piece bathing suit and not worry about people looking at her like in past years, and also the one piece not having anything poking out of it.

I no longer am going to have to worry about playing with her a little rough or picking her up and something catching on her tube, or anything. Its a very exciting feeling to know that the day you have been waiting for since she was born, is finally here. I think back on the 6 years of medical crap, hospitals, testing, and I just cant believe that this really and truly is the LAST medical thing that we will have to do with her. As of tomorrow she will be "normal" by society's standards, and I cant wait to see her beam with pride at the fact that she accomplished such an amazing feat.

The other thing I cannot wait for is Friday when we get to go home, and I get to clean out her room of every medical thing possible. Bye bye extra tubes and syringes, bye bye IV poles, bye bye feeding pumps and backpacks, bye bye 35 cases of formula and bye bye getting monthly shipments of formula and supplies. I just cant wait. I am going to be bawling through all of it, just knowing we will never need it again and that she can eat like a normal kid. Amazing.