Haven't had time to update in a couple of weeks, but we've generally had good news!

Hannah is adapting well to her new gastric tube. We went to the surgeon a week or so back, and he was very "impressed" with the way she was healing. We, in turn, are impressed with Dr. Schindel, who took the time to talk with us and draw diagrams and let us know everything about what is happening with her from his viewpoint.

We have moved Hannah from continuous feed to "modified" bolus feeds. True bolus involves giving her the target amount in a half hour. As we work up to that, we are giving her a target amount in an hour. Basically, four ounces in an hour every three hours. That gives her two hours out of every three free of the tube, and also gives her an apparently satisfying full feeling (she gets still and relaxed). She still get the continuous feed overnight.

As a result she's getting around 24 to 25 ounces every day—anywhere from four to nine ounces a day more than what she was getting. That has also resulted in a weight gain! Yay! Yesterday, she weighed 14 pounds, 1 ounce. That's a gain of 7 ounces since Monday! This is a record weight for her. More importantly, her ribs don't show so much, and she's getting just a little healthy bit of pudge under her chin. Everyone in the doctor's office celebrated. (The pharmaaceutical rep that was there probably thought we were all nuts but then he doesn't know her history.) Our actual doctor was not in the office, and the nurse who usually helps us said she was going to call her at home to tell the doctor the news. That's how closely they're following this little girl.

She is also starting to follow and respond more to voices. We are changing her therapy a bit so that her PT and OT are co-treating on Fridays. Her OT thinks the current arrangment might be overstimulating her a bit, and since they are working a lot of similar things she thought it might be a good idea. So she will have one and a half hours of PT, OT and Speech on Mondays and then one hour of PT/OT and Speech on Fridays.