I have been searching the net for more information about Cayla’s condition both in English and Swedish. I know that I shouldn’t read stuff online but I just couldn’t help myself. So I know that it’s a bit unusual and I know that these extra folds are positioned on the outer cortex of the brain which controls movement in our bodies hence Cayla’s cerebral palsy.

But I have also read that it could be genetica, talking about a chromosome called Xq28, but more often a mutation. It does however sound like Cayla will now have this gene and will therefore be able to pass this on to her children in the future. A scary bit of information is that a lot of children with this condition will develop epilepsy at 4-12 years of age. But this might only be a risk for the more severe cases what do I know? I do however want to talk to someone who might be able to give us some thoughts on this so I have contacted Dr Kate Langdon for an appointment in due course.  

I have also booked Cayla in with a speech pathologist from Kids are Kids as of recommendation from a friend of mine. She is prompt trained which is a technic that I think Cayla would benefit from so we’ll see how that goes. We are seeing her in a couple of weeks.


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