Center Parcs!  We’re here with the extended family – 8 adults and 6 kids, in 2 houses next door to each other. Pudding is having an absolute ball! We had a BBQ this evening, though the weather wasn’t brilliant. After eating, we let him out his chair and he just wandered around, shadowed by my Mum and sister. Letting him have the freedom to just go where he wants is by far the easiest way of looking after him, but it isn’t always very practical, so he was loving it. Later, when we came inside he was kicking the soft ball  (with a resounding ‘Boing!’ each time) at the seated adults whilst the other kids batted in and out too. So much attention – he was in seventh heaven!

We can’t forget his condition easily though. Yesterday I had a phone call from Manchester saying that they can do his portacath on Thursday. Never expected to get that so soon. Obviously Jane’s scrawl over the request form saying ‘Urgent! Took 8 attempts to get a line in last time!’ worked. I said that we were on holiday so couldn’t do it this week. Then had to ring Jane this morning, as I wasn’t sure what to do about possibility of grommets which can be done at the same time. She has delayed the GA until we can get that looked into. So that’s the next thing to worry about – general anesthetics are never something to look forward to, but can be of particular concern in MPS due to problematic airways.

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