Friday, April 19, 2013

CDH Awareness

Wyatt is now five years old and is doing great! He is involved in t-ball, takes violin lessons, gymnastics, and goes to preschool. Academically he is right on track! He just earned a gleaming report card and is all ready for kindergarten next year.

On the flip side, Wyatt and our family will ALWAYS live with CDH. He still is on oxygen at night, we still have nursing, and he is still has a g tube. He eats more solids, and we recently changed his formula to 1.5 cal Pedisure and altered his night time feeds.

Some new issues we are dealing with is something I am not prepared for which is Wyatt's interaction with his peers. Kids ask about his ECMO scar on his neck, they ask him why he runs differently and slowly, and he never wants to be bolus fed in public. I am telling Wyatt to be proud of his scars and that he was brave and a fighter and to use those opportunities to spread awareness. It's hard for a five year old to comprehend all of that. Peer pressure has power. I am sure Kindergarten will bring a new set of obstacles.... but if Wyatt can survive CDH and endure 8 major surgeries, five years of therapies and doctor appts; going to a big school will be no big deal:).

His personality and love of life is contagious and I hope that fire in him never burns out (even with peer pressure).

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