About

This is a blog for our son Billy, everyday growing up and dealing with Craniosynostosis. At the time this blog starts Billy is 8 months old….

Billy was born with a fairly rare condition called Craniosynostosis where one or more of the sutures in the skull fuse earlier than they should in his case before he was born (in Billy’s case its the sagittal suture) We were very lucky in a way as this was discovered on a growth scan before he was born, which is unusual in the diagnosis of this condition usually it not discovered for many months after birth.

He is under the care of the Cranio-facial team at John Radcliffe hospital in Oxford where he is due a major operation at some point when he is between 12-15 months.

In an unfortunate coincidence Billy was also born with a dilated kidney on his left side, he had an operation to correct this when he was 4 months old and we are still waiting for the all clear on this, with follow up tests on his kidney function. (UPDATE kidney function looking good now, further check up pending in March 2013)

This blog is to chart our journey (and some of the everyday stuff too)

C (Billy’s mum)

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