Twiglet

Imagine you’re nearly six years old. You’re bright and lively. You love your brother but hate the way he hits you all the time for no reason. You love Lego but have can’t leave any of your models out in case your brother destroys them and eats them. You get frustrated that when you’re trying […]

Knowledge – friend or foe?

I have found this week REALLY tough. Pudding has continued to be pretty whingey most of the week, though he is certainly improving, moving around more easily and sometimes going for half an hour without the TV on. I’ve continued to worry about whether we’re doing the right thing; putting him through this pain and […]

Questions, questions

‘My child was sick last night.’ Not an earth-shattering statement in the grand scheme of things. You keep an eye on them for the rest of the day, don’t send them to school, ask how they’re feeling now, and know that it will probably pass quickly. But when the child in question is mostly non-verbal, […]

Home again

Getting home yesterday was soooo nice. Though the drive itself was not – Pudding cried most of the way. Don’t blame him at all – I probably would have done too, if I’d been through the same thing. The operation went just as planned, and the new port (or intrathecal drug delivery device – IDDD […]

Preschool

Today, Pudding is full of cold and heavy-eyed so I’m keeping him home rather than sending him to his usual preschool playgroup. It’s got me thinking about how much this resource means to us both. He started last January and to be honest, I was initially nervous about what he’d be like there. When he […]

One week to go

So, it’s official – surgery is booked in for next Friday. A week today it should all be over. Last time I wrote I was feeling pretty scared about it because of the other boys I’ve seen on Facebook having complications after the spinal port was placed. The 30 page consent document mentioned all the […]

The next phase begins

We’ve had confirmation that Pudding is now entered on the clinical trial. And he’s been randomised to the treatment arm. We’re waiting to hear about a surgery date sometime in the next few weeks. I don’t really know what to say. When I’m telling people they light up and tell me what fantastic news it […]

Going public

I’ve always known it would happen some time. Someone other than a friend would notice that his baby face looked odd on a child that old. That he was ‘too big’ to be in a buggy. That he wasn’t behaving like a ‘normal’ child. And the comments would start. There have already been some well-meaning […]

New Year

New Year is a pretty obvious time ┬áto look back over the last year and on to the next, but with us, it has a particular significance. It’s been a year and a day since the paediatrician first mentioned Pudding had ‘coarse features’ and it was worth checking for underlying reasons for his development delay. […]