Hello đŸ™‚ as the title of the blog says this is a blog for Billy. Billy is our 8 month old son and I’ve decided to start a blog about our experiences. 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 has had an operation to correct this when he was 4 months old and we are still waiting for the all clear on this, having follow up tests on his kidney function.

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

C (Billy’s mum)

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