Kansas City


The nurses tell me Kansas City is a 3 hour drive up the road – the setting for one of Rhys’ favourite films, ‘The Wizard Of Oz’ that he’s watching in bed.

The original version of the film starts in black and white and changes into colour. That’s kind of what Rhys has done during today.

Rhys drifted in and out of sleep through last night and threw up several more times. By the time Sally came back in at 9 this morning he was pretty pale. He was also in a bit of pain. He was desperate for the toilet and was finding the catheter uncomfortable. That’s kind of a good sign though as bladder disfunction is a known temporary side effect.

With Sal at the hospital I went out for a run in the park to clear my head. Propped up on caffeine, running in the 100 degree heat after a few hours sleep probably wasn’t smart and I didn’t last long.

When I got back to the hospital Rhys was still uncomfortable but had managed to keep some apple juice down. Our first few physio sessions had also been scheduled. Post op day 1 is today and on day 3 (Sunday) we’ll be able to get Rhys out of bed. Until then it’s continuous bed rest and the flatter he is the better so that the wound can heal.

Imagine a sticking plaster about the size of your fore finger. That’s how big the plaster is on Rhys’ back. Not the wound – the plaster. There’s no bruising or anything. It almost looks like nothing has been done.

Briefly at about 5pm Dr Park popped in to say hello. He remarked how much colour Rhys had in his face. And then you realise that although he’s a very long way from being himself Rhys is looking quite a bit better than he was this morning.



That’s the noise Rhys’ little epidural machine makes every few minutes as it gives him a dose of painkillers.

As usual on these big days, he was on great form as we arrived at the hospital this morning.

Having made his bed socks into puppets and impressed his nurses with knowledge of the songs from Grease he went down for surgery at about 11:30am. He’d been sedated 30 minutes prior to surgery and waved as he was wheeled off into theatre in a drunken haze.

At that point a curious calm descends. There’s not a lot you can do beyond texting family and drinking coffee. I caught the last 10 minutes of Germany v Italy on the waiting room TV. It felt like a massive dereliction of duty.


Dr Park came to see us once Rhys was ‘closed’ to say that he’d cut an average amount of nerves and that he was very happy with how the surgery had gone.

Rhys was very groggy in the recovery room and has been all evening on the ward.

The juice that’s he’s drunk he’s mostly thrown up (which is common) but at the moment he isn’t too distressed and he’s calm. Time to try and snooze myself.



A few months ago I read a quote that lodged in my head ‘Where there is doubt, there is no doubt.’

That’s not to mean that you just cast doubts recklessly aside or, alternatively, that the doubts paralyse you. More that the doubt becomes the motivation to check, think through and analyse a difficult decision. It’s the engine to keep exploring options until all the doubts are resolved – and then you act.

There’s been plenty of that going on for the last few months for us. That is, drawing on opinions from lots of different professionals, other SDR families and children to arrive at the point we’re at now. Rhys’ surgery is scheduled for 10:30am on Thursday morning (4:30pm in the UK) and whilst we’re a bit anxious about the surgery it feels like we’re doing the right thing.

I was watching Rhys as he made his way around the water park we found today.

It seems almost implausible that, post op, his feet won’t turn in anymore.

We’ve spent a good couple of years with Rhys wearing straps on his legs every day to try and rotate his feet back out. Not having to do that is very hard to imagine.

So often his legs scissor (cross) as he tries to stand still which makes him fall a lot. They’ve done that since he was born. That also being reduced is hard to wrap my head round.

It would be just fantastic if the predicted outcomes are achieved from surgery. In these situations I think it’s my nature now to keep my expectations low, whilst striving for the best.

Here’s to a good outcome for Rhys tomorrow.

Welcome to the Mid West

We headed out on Saturday morning to find some nappies for Owen and the first person we found at a cafe told us the nearest pharmacy was a 20 minute walk away. As I headed off up the road the lady called me back. ‘You know what, I’ll drive you up there’.

By the time we had a we’d got back Liz had offered to drop us all at the zoo where we were heading for the day. After a few wrong turns we stopped to ask a police lady the way. Instead of giving us directions she gave us an escort all the way to the zoo. And that pretty much sums up how friendly everyone over here is.

Getting here a few days before Rhys surgery has given us a chance to have some fun. The zoo is ace though Rhys and Owen were as impressed by the ‘mister’ machine as they were by the penguins.

Having said that the misters are good. It is bloody hot here at the moment. The boys can’t walk past a fountain without jumping in it.

We had Rhys’ pre op assessment yesterday which went well. Rhys gave a good account of him self in the physio evaluation – he’s arrived here in pretty good nick.

Dr Park, the surgeon, repeated his predictions of a good outcome for Rhys. His spasticty will be drastically reduced, possibly even eliminated (quite remarkable). From that his sitting, standing and transitions will improve and his ‘in toeing’ could also be eliminated (again, quite remarkable) and he thinks he’ll be able to play football. Given the state of the national team he thinks he’ll probably captain the side as well (I’ve exaggerated that last bit a touch).

However to get those gains there’s a tricky bit to navigate. The surgery is quite a big intervention (the details are on this site) and immediately post op Rhys will have an epidural and catheter for a couple of days. He’s likely to have muscle spasms in the first few days which will need medicating as well. In all he’ll be an in patient for 5 days and they’re not going to be much fun.

I guess the only thing to do is keep our eyes on the prize and trust in the team around Rhys.

But all that doesn’t start til Thursday – which means we’ve got another day to enjoy ourselves.