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.

Here's something new for our friends and family. Those of you reading the Blog, obviously, know that it's here, but it can be frustrating to check it every so often--sometimes there's a lot of news, and sometimes there's no news. You're welcome to check like that, of course, but we have added an option so that when we post something new, you can get a copy in email. It uses a mailing list program we have that is intended for listserv-type operations, but can be used to distribute a subscription, i.e., where no one can post to the list except the publisher. We have set it up that way, and have the Blog site as the publisher.

If you find it annoying after you have subscribed (maybe you prefer just reading it when you feel like it), you can unsubscribe--it won't hurt our feelings. But if you would like to not think about it at all, and just let the software send you news when it's available (and not have to depend on us to remember to notify you), then try the subscription. The list is protected from view by anyone except the two of us, so that you won't have to worry about your address becoming available to Unsolicited Commercial Emailers.

There is a new link in the lefthand navigation bar, but just in case it doesn't show up for a little while, you can subscribe by going to http://mail.soapboxorations.com/mailman/listinfo/kinglynews_soapboxorations.com.

Hannah is home from the hospital. She is a little fussy, but all in all doing well. I promised an update last Friday, and haven't had time to post one, and today I'm going to just post this quick one so people will know we're home. More tomorrow, maybe. :)