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Kyle
Sat, 01/27/2007 - 15:20 — debbie
Kyle is my twin grandson with multiple disabilities, PFFD, with no hip sockets, severe short stature, pierre robin with a cleft palate, g-tube, tracheostomy. His twin brother is normal, they were born 3/30/04. Kyle's thigh bones, is only 20%developed and he has no hip joints? We are suppose to been seen in Maryland for a pediatric orthopedic consult.
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Kyle's Other Medical Diagnosis
Kyle had PFFD with no hip joints. Pierre robin- a severe small jaw-underdeveloped-2 jaw distrations already with no jaw growth. Cleft palalte, g-tube- failure to thrive- tracheostomy tube for air way obstruction because of the Pierre Robin. Ha anyone ever come acros another child like Kyle? We consulted with genetics? My self my daughter, mother to Kyle and my son are all insulin dependent diabetics?
hey
My sister in laws neice has prs, she is a wonderful little girl, im sure youve been here but you should try
www.pierrerobin.org her mum found it extremely helpful,
hope this helps
sally