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Evan is 17 years old, born in August of 2002.  Evan was clinically diagnosed at 2 months old.  He was born at full-term weighing 3lbs. 6oz. with a cleft palate and missing toes on his feet.  He was released from the NICU at about 6 weeks old feeding orally from a Haberman bottle.  Evan did experience some reflux issues and still does to this day.  He had his cleft palate repaired at 2 years of age and Eustachian tubes put into his ears five years ago.  He has moderate/severe hearing loss and is non-verbal but has his way of letting everyone know what he needs through PECS and some Sign Language.  We have tried to use hearing aids, but he struggles with them so we choose our battles.  We did notice a difference with his hearing and balance once the Eustachian tubes were put in. He has struggled with tip toe walking and has just recently undergone heel cord lengthening surgery to hopefully correct it.

Our biggest challenge is communication, especially if he is sick and we have to figure out what is going on.  He has the best smile that lights up a room.  I love when he has his giggling fits…they are contagious! Evan loves camping and the outdoors and especially loves driving his Kids Ride-on Jeep.  He is a happy young man and loves to eat just about everything….except Jell-o! He currently weighs 56lbs and is about 45” tall.

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