Not much has changed in the past few days. Ellie is still progressing on her feeds and is up to 10 ml each hour through her J-tube. She seems to be doing well with these and the doctors are still impressed with her weight gain which indicates that she is actually getting some nutrition from her food. We are going to keep advancing her feeds very slowly and see where that takes us. Nobody knows what she can do so we'll see, just not in any hurry. They tell us that the magic number would be close to 30 but none of us think that she she can get there quite yet.
In the meantime we are spending a lot of time with her and learning new tricks like singing, screaming and watching the parade of people go by the door.
We are also going on field trips and seeing the sites.
And taking lots of naps.
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I'm at a conference at UVM for a couple of days. Was in the fitness center this morning and FOX news had a special about Children's Hospital. They were going on about the great work that takes place there and I thought to myself, "The other people slogging around on these machines have no idea how true that is!" (Well, at least I don't think they do...)
Happy 6 months. You're an amazing family - writ large and in all the subcomponents!
Love,
Barbara
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