Jack’s Story

Jackson Edward DeNike was born on January 3, 2005. He was 9lbs 9oz and delivered via C-section after 18 hours of labor. At 1 week old, we started to suspect that Jack had a milk protein intolerance and placed him on “hypoallergenic” formulas available over the counter. During an upper GI we discovered his Gastroesophageal Reflux Disease (GERD or reflux). He was placed on Prevacid. After 4 months of fighting with him to feed, bouncing around to doctors, many tests and different medicines and formulas, we placed a NG tube, a feeding tube in his nose. We attempted to get him eating solids in hopes of removing the tube quickly, but after a bout of the flu we gave up that hope.

At 11.5 months he had a G-tube surgically placed in his stomach and was fed that way until he was 2.5 years old. At that time he participated in a 2-week intensive feeding program through Seattle Children’s Hospital (we called it Fun With Food) which jumpstarted his eating. He started the program eating 12% of his calories by mouth and finished eating 70% of his calories by month. Over the next 3 months we gradually weaned him off of his G-tube feedings.

A couple of months past his 3rd birthday we removed his G-tube. He threw it in the garbage himself, saying “Bye, bye tube.” Jack has never looked back and now eats more variety that most adults We couldn’t be more proud of him.

Jack is a wonderful boy who loves his brother Will and his dog Mulligan. He loves to play outside, ride his bike and help Daddy work in the garage. When he gets bigger he would like to drive a Mustang like his PaPa. His favorite color is green and favorite football player is Jake Locker.

In November 2010, Jack was diagnosed with Ocular Albinism, just like his little brother. An OCT, Optical Coherence Tomography, test confirmed his diagnosis. His vision is 20:25 in his right eye and 20:40 in his left eye.  We tried patching Jack’s right eye and special glasses to see if we could strengthen his left eye but did not see much improvement. He doesn’t have good stereoscopic vision (depth perception.) He also has very mild Nystagmus that is only detectable with the OCT machine.



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