Thursday, 31 March 2011


I'm fine - well, I look fine and Mum and Dad say I sound fine if you get very close and hear me snuffling as I breath. But I lost 40 grams in weight overnight and I've had a little blood in my poo.

So Mum's worried. The consultant said she wasn't worried but they're testing everything anyway (more blood tests for me). Whilst we're on blood tests - can I take a mo to thank Lana. She's my phlebotomist (which is posh for blood test taker) and she's Canadian and so nice that I've managed to sleep through her taking my blood before now. I also know I'm very hard to get any samples from, because I've had so many tests before. Sorry Lana.

They re-did my head scan today. Some cysts in one patch where they shouldn't be and the ventricle on the right is really quite a lot bigger than the left. I'm still at risk of hydrocephalus (big swelling - v. bad) and it still looks like I may have some disability.

I did a bit better on the breathing front today managing several hours off my oxygen without any disasters. And I had a nice cuddle with Mum. I think she needed it.

Contented little man!

Arthur x

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