I often find myself defending my decisions about what I choose to do for Anna regarding her feeding problems. I base my decisions on facts and the evidence so far collected which is that when she got her button and started getting nutrition, she started doing better in all areas of life. When she had the balloon dilation she started doing even more. I really believe the key to Anna's success is nutrition. I can see with clothes on her that she looks ok. Tiny and skinny, but ok. She is 2 1/2 and still wearing a size 4 diaper. She has been in a size 4 for over a year now. I think those who are questioning what we choose to do should see what we see... underneath her clothes. She truly is skin and bones and that, my friends, is why I worry so much about her nutrition.
Wearing her clothes and looking pretty normal
She would not cooperate with the picture taking but I think you can see what I am talking about. The happy news is that she is eating a Rice Krispy Treat!
On a side note- I have a friend who has a special needs son. He has Prader Willi syndrome. Anyway, the school psychologist called her to set up a time for some testing and to start on his IEP and she said, "So, does he have any retardation issues going on?" Seriously, isn't this 2010? Retardation issues going on? Are you kidding me? Luckily my friend is not easily offended.