So today it’s the second part of the screening process for Pudding to get onto this clinical trial. At about 6pm this evening he will have an MRI scan and lumbar puncture under general anaesthetic. (Hopefully they’ll also fit in a little look at his eyes which is one of the general baseline health checks that they haven’t yet been able to get done since diagnosis).

So although I’m not as nervous about this as his first operation I’ve got lots of things going around in my head. Will he feel sick again afterwards? Will we be able to keep him from sitting up after he comes round (and therefore avoid the bad headaches which are common after lumbar puncture)? Will the results be ok to get him onto the trial? And so on.

And what will Pudding be thinking about? Food. Always food. He finished his lunch at 11.30am and won’t be able to eat now before the operation. I know it’s probably difficult with any child having to keep them away from food for six hours before an operation. A child with limited understanding makes it even more difficult. And a child with Hunters Syndrome, who seems to think that food is the be-all and end-all of existence brings the challenge to potentially epic proportions. If I had a penny for all the times I heard a plaintive ‘Ungry!’ during a normal week, I would be rolling in it, that’s for sure.

We don’t really know why Hunters boys are so keen on their food – but it’s a really common finding amongst them. It can have its uses as a guaranteed way of distracting from other unwanted behaviours, but when you can’t use it…

Well, we’ll be heading off on the drive in an hour or so. He’ll sleep for at least part of that, and then there will be the distraction of arriving at the hospital and seeing everyone there. We’ll be taking the tablet for him to play on, there’s a football there, and always the option of TV of course. In the scheme of things it won’t be the most difficult thing we’ll have to face. He might disagree with that though!

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