Thursday, January 22, 2015

Big Boy

In person, I know he still seems small for 13, but today at his annual appointment to see the CRS team consisting of a nutritionist, social worker, a team of dental experts, etc., they were BLOWN away by his growth spurt. Even more remarkable, this spurt actually happened sometime between May and November because we had other doctor visits in between to do weigh-ins....He has never been above the 5th percentile and today.....25th percentile!!! He has grown nearly 4 inches and gained 19 pounds in that time frame. It sparked their interest in Goldenhar Syndrome and several declared they do some more research on the subject.

The difficult news...medically, he needs lots of Orthodontia. He can't even eat corn on the cob, bite into apples, and lots of other things he don't eat because of his missing/malformed "teeth" called pegs. However, according to the widespread changes in the recent medical insurance coverage....a certain code doesn't fall under the "qualified" category anymore since he has Goldenhar Syndrome and not a cleft palate. His face is crooking more and more and will affect his upper face soon including around his is expected the skin of one eye will begin to pull down and around toward the short side (right) as he continues to grow. He still will need dental repairs after Orthodontia and then the jaw surgery to follow in just a few short years to lengthen that short bone.

They are resubmitting paperwork in hopes to get it passed as necessary and not cosmetic for the common crooked teeth. We will sit back, and pray it works this time! We are just glad to have him, and we'll take it one day at a time. He sure is a fun child, and we are Blessed as his parents.

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