So, I received a phone call from the hospital last week. It seems that our insurance company doesn't think that Emily really needs this medical intervention. They have denied her coverage for the program. I am neck deep in the appeal process. This should be interesting. These people don't know who they are dealing with. I am kind of a pain in the ass when I want something.
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One of the most common things people are curious about is Emily's diet. What does she eat every day? I tell them that her diet is limited, and she struggles with food and texture, but what does it REALLY look like for us? Well, here it is. This is what a day in the life of Emily looks like. This is every day. If I have listed a brand next to an item, there is a reason. She will only accept that brand. She CAN tell. It is not a game. I spent 9 years in pre-clinical cancer research, so I understand the concept of an experiment, and I have run countless ones on her to test theories. She CAN TELL, EVERY SINGLE TIME. Preferred Foods (she eats readily with no complaints and little prompting)
Tolerated foods (she will eat these if I supervise her and press the issue)
The date is getting closer. About two weeks from now, my little girl will embark on her adventure in VA that will bring her new victories in eating.
I am nervous. I know this is the right thing. I don't need convincing. But my momma brain worries about the little details that I won't be able to control. How is she going to feel? I wish I could be there to High-five her when she eats something new. This will also be the first time she and her little sister have ever been separated. THAT is gonna be a biggie. We will find a way to work through each week. Celebrating all those small steps toward a huge goal, letting all of you know as much as we can as it happens. Thanks for the support! |
AuthorWhen E was little I searched all over the place to find people that could relate to us. I wanted to talk to other parents about what we were going through, and learn what they had discovered. I wanted more than just a doctors opinion, and I couldn't really find it. That is why we are here together, to explore each others situations and hopefully shed a little light on your own spot on the spectrum. Archives
May 2016
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