Tuesday, September 6, 2011

Exciting Monday

So the pictures are a little out of order but I'll tell you how our Labor day was. Raygen started the day off with some time with big sister. Later in the day Raygen decided she didn't want her feeding tube any longer and when I looked away for just a second she pulled it out. She cried at first but then she was so happy. But as you all know, the girl needs to eat, so I had to put it back in. Let's just say this did not make Raygen happy but we gotta do what we gotta do. I love the picture of her with no tube on her face. This is what she will look like once she has her G tube, so exciting. I'm praying, praying we get a call today from Children's I really would like to get the ball rolling and know what our future holds. Surgery or Transplant? Please pray that it's surgery. I would also like Raygen to get her G tube, it is so stressful replacing her feeding tube now. I'm always so worried its not in her stomach. So here is to hopefully a less crazy Tuesday.