Little E's Big Adventure - Background

Ethan's life has been one big adventure after another, but it seems as though everything in the past 5 plus years has been in preparation for our latest adventure - an eight week stay at the Kennedy Kreiger Institute's feeding program.

Ethan was born into a loving family. Mom, Dad, Emma and Evan welcomed Ethan, but were not so sure about welcoming the diagnosis of Down syndrome. Ethan had feeding issues from the start, but his breathing issues took precedence. After 3 years of frequent hospitalizations, procedures, and airway surgeries - including three trips to the ICU on a respirator - Ethan's breathing issues were fixed. Now the real work could begin.

We noticed Ethan would no longer eat 'real food' after his airway was fixed. He would mostly drink yogurt smoothies and eat only a few cracker-y foods. New foods were met with gagging, screaming or fighting. A few years of feeding therapy and OT followed with little to no progress. The Cincinnati Children's Hospital Medical Center referred Ethan to the Kennedy Kreiger Institute in Baltimore, MD, a nationally known inpatient feeding program, last spring.

We've spent the past year in multiple evaluations and have found that Ethan has roughly eight reasons why he won't eat. Kennedy Kreiger will address these issues and teach Ethan to eat. We can't wait! Ethan is scheduled to be admitted on February 2, 2009.

We can leave for Baltimore and KKI as soon as we get insurance approval. Wish us luck!