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  Raiden
This is Raiden Nazaiah.  He was born in March 2016.  He was a week early. He is from Maui, Hawaii.  When he was born we were told he had a sacral dimple and his fontanelle (soft spot) was enlarged.  We did notice his features also.  At 5 days old he did a well check where his doctor said he had hip dysplasia.  We were flown to Honolulu where Raiden saw specialist.  He was put in a hip brace which didnt work and at 7 months old put in a spika cast.   Which worked only on one side.  Today he is still in a hip brace when he sleeps in hope that his left hip will build muscle.  Raiden has bad acid reflux and was put on special formula. At 12 months the genetics test came back that Raiden had PKS.   Today Raiden is 14 months old he has hypotonia, developmental delays, seizures, hip dysplasia, nystagmus, oral motor dysfunction, congenital high arched palate, oversized space in his brain.  Raiden can sit only with assistance.  As of today he still can not hold his own bottle, sit on his own, crawl.  He eats half a bottle of baby food by spoon.  He can roll over.  He goes to therapy every week and is making progress on his own time!  He loves the water and his swing.
He is a very happy baby and we love him so much.   Our family has been blessed!
Tiana Momoa


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