My grandmother and uncle David visited us in the hospital today from New Hampshire. It was good to see them and show off Ellie to my grandmother. It was even better to let my grandmother hold her and see that she is a very happy little girl, something that gets lost in the translation of her condition. A dose of gramma should be part of every treatment program.
Generally she is very happy and comfortable like any other baby would be. In some ways she is happier since she doesn't get hungry because her gut hasn't gotten on line yet.
It is interesting to Abby and I what emphasis children's hospital puts on having Eleanor be a baby first and then letting the doctors and nurses fix what is broken in the meantime.
I think that the distiction fits well with what my sister told me early on: she is not a sick little girl, she is a little girl who is sick. A fine shade of gray to be sure, but it summarizes a difference in the way that Children's seems to go about her long term care.
They also frequently mention how things will be when she goes home, which is great to hear.
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