Tuesday, August 12, 2008

Tuesday, August 12th, 2008

A message from Mommy:

For those of you who may not have followed Peyton from birth you may be wondering about her medical conditions. Peyton exhibits many of the signs of Nager Syndrome. Because there is no genetic test for Nager Syndrome, diagnosis is based on clinical symptoms. One of the most severe is her micrognathia (small jaw) that resulted in her tracheostomy and g tube placements. Some of the symptoms like the micrognathia and cleft palate can be corrected with one or multiple surgeries over the course of her life. Others, like her short forearms and fusion of forearm bones are not able to be corrected. There may be a few other symptoms that have yet to be diagnosed. Despite many challenges, Peyton has made great progress. With her strong personality, we have no reason to believe any of this will hold her back from doing what she wants to do. She has shown us many times that we shouldn't underestimate her!

Suspected coloboma right eye - appointment 9/3/08 to confirm
Underdeveloped thumb right hand - scheduled for reconstruction 8/27/08
Fused finger and thumb left hand - reconstruction in the future
Cleft palate - scheduled for repair 9/22/08
Micrognathia - 1st jaw distraction 6/2/08
Aortic valve disease - possible replacement in the future
Bilateral conductive deafness due to absent external ear canals
High nose bridge
Low set ears
Fusion of forearms bones
Shortened forearm bones
Left temporormandibular joint ankylosis
Overlapping toes

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