You are probably wondering why my blog has suddenly popped up in your news feed?
In October this year I was diagnosed with Craniosynostosis. I bet most of you don’t know what it is, well for those of you who don’t I will give you a little bit of info.
Craniosynostosis is a condition where one (or more) of the sutures in the skull fuses too early. As you can imagine this can cause all sorts of problems, from minor cosmetic differences to raised pressure in the skull.
If you would like to know more about the condition you can find lots of info here.
The rest of the year was a bit of a whirlwind with lots of appointments and various people prodding and poking at me, lots of questions, and lots of tears (from both me and my Mummy).
Eventually at the end on November Mummy found an amazing team at John Radcliffe Hospital in Oxford, and they had a look at my xrays and asked for me to be taken to Oxford that week so that the consultant and team could have a look at me.
It turns out that I do not have non syndromic single suture craniosynostosis (try saying that when you have been at the gin, My mummy can’t ) but that in fact more than one suture has closed early (the metopic and the sagittal) and also that my lamboid sutures are partially closed too. When you add this to the fact that I have mild syndactyly (thats webbed toes) on both feet, plus other issues which I won’t list right now, it points towards a syndrome of some kind.
After meeting with the team due to having visible ‘copper beating’ on my skull (a term used to describe dents and pits in the soft skull bone) I was taken into hospital and given a CT scan under anaesthetic the next morning as well as a horrid test where you have nasty eye drops so an opthalmologist can look at the back of your eyes.
Although the eye test shows slight swelling, the CT scan showed that there was still some room in my skull for my brain to grow into and that I wasn’t in any immediate danger, and so the suggestion was made that I go home with Mummy and Daddy and enjoy Christmas!
We had a lovely Christmas. Well I did at least…I think my Mummy was totally stressed out about everything. These mummies do like to worry, you know
I hope you will join me on my Cranio Journey, from what my lead consultant said “I’m in it for the long haul” which sounds fun doesn’t it?