Meanwhile she remained at risk. "She tried to consume three to four thousand calories a day but she just couldn't do it," says her mother, Honor Page. "She got so sick of butter and ice cream. She would plead with me for a salad. People really have no idea how hard it is."
About two years ago her doctor, Jamie Wooldridge, brought up the possibility of a nasogastric feeding tube, which would have to be snaked through the girl's nose every night to drip predigested nutrients directly into her stomach. Annelise agreed to give it a try. She mastered the technique, which soon became just another part of her nightly routine. And she gained 30 pounds, topping the 50th percentile. Now 16 and on her school tumbling team, Annelise tracks her BMI on a chart on her bedroom wall. "They listened to her," says her mother. "They went into their bag of tricks and thought, 'What can we offer this family?' "
Adopting electronic records. Health information technology has benefited Cincinnati Children's patients most directly in the form of My Care Connection, a secure Web page that lets families track a child's progress and stay on top of the latest medical plan. There are word descriptions and graphs of the child's most recent lung function data, results of lab and imaging tests, and an updated list of medications and dosages. Parents can put questions to a child's care team and expect answers within a day. "It is a critical philosophical step forward," says Acton, "in transferring control of their healthcare from us to them."