Today's topic: What are your tube feeding hopes and dreams for you or your child in 2014? What successes do you want to build on?
Dreams. I have one. My dream for 2014 is that she continues to be happy. Yup. Thats it. She is such a happy girl and I want that to continue, because when she is happy she is comfortable, and that is what we want. I love her joy. Her smile. Her giggles. I don't want that to change so my goal with medical stuff is to keep her happy. I know that sounds totally crazy and vague request, but that is it. I'm not sure how to really explain this. When she is happy you can tell that life is good. She is not in pain, she is not vomiting, she does not have pneumonia. So as much as a goal of her being happy sounds small, it is in fact huge because it is all the pieces working together.
No it does not mean we will give into her every whim. She thinks she wants to do things that would be very bad for her. One of the things of keeping her happy means teaching her the right things to do. Living a life getting in trouble does not make anyone happy.
We will see what this year brings. I try to live in the now with Jillian's medical stuff. We live with short term goals and plans. Right now our short term goals are that the motility testing come back to confirm that gastric motility so we can best treat that, and that we get insurance stuff worked out.
We have Jillian with us so anything beyond that is amazing.
If you missed it earlier this week, here is a copy of her feeding tube video for the year. It is super cute and shows you her tube feeding journey. Feel free to share this video to spread awareness about how life saving feeding tubes are for kids who really need them.
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