Up On The Roof

The week that we’ve been here has ticked past very quickly. The time spent in the hospital is blurred together in your memory as one long day and it’s hard to keep track of what happened when. We’re packing bags and heading to the airport today after a final physio session at the hospital at 10am. I’ll need to be quick typing this.

Rhys was reluctant to really do anything in physio yesterday and needed lots of coaxing to do anything. That’s a combination of being sore, fed up and having a new pair of splints to wear which aren’t all that comfortable. He took a few independent steps though which was encouraging.

Once again though being on the roof garden at the hospital changed things and he wanted to be up on his feet. Here’s a quick video clip.

Though he’s dosed up on lots of pain killers it’s good to see him back on his feet before we travel back. Given that his splints are uncomfortable (he needs to wear them for 6-8 weeks to protect the surgery site) he’s in a reasonably good mood. We managed to make it to the cinema yesterday to see Hotel Transylvania as a bit of a treat as well.

So even though we’ve had a week here it still feels like we’ve been in a bit of a rush. Though it’s been a bit tiring and stressy at times it does feel like things have more or less worked out for us.


On Sunday we were out in the town and came across ‘The Taste of St Louis’. It wasn’t the hoped for BBQ championship but another street festival. Fredbird the St Louis Cardinals mascot was there.

We also stumbled into the kids disco corner which suddenly came to life with 30 or more people in a line doing ‘The Wobble’. Now, I could be the only person from London who’s not heard of it and I should have video’d it. Here’s someone else’s video clip from youtube of ‘The Wobble’.

I’d thought that learning it could form the basis of our physio sessions here this time but it’s probably going to be a bit much.

As in the summer Rhys is quite sore. He’s not in nearly as much pain as he was then but today he was very reluctant to put his feet on the ground. Bribed with Hershey bars  we got him to take some supported steps across the physio room – have a look here.

Blaire, his physio, thinks he should be back to taking some independent steps before the end of the week which would be great – but to me that seems a long way off at the moment.

And as for learning The Wobble, well, that might have to wait til we’re back in London.

Time Zones

It’s about half ten at night here and we’re just starting to watch Ice Age on DVD. Having been here a few days we were almost in sync with St Louis time but I think we’ve blown that today.

Rhys was taking ages to come round in the recovery room after surgery. Just as your nerves were starting to jangle that something might be up you realise that Rhys was basically having a snooze – he slept for 4 hours straight after the op.

Rhys was in theatre for about an hour and Dr Dobbs is happy with how the procedure went. It’s much less invasive than SDR and he’s just got a small incision on each calf.

We’ve got a physio session at 1pm tomorrow before we’re discharged. We’ll find out then as he puts weight through his ankles just how sore he is. But right now, in himself, he’s pretty much OK.

The week that we’re here is ticking by pretty quickly and I doubt we’ll get back in sync with the clock here.

It’s probably just as well we have the other Ice Age movies to see us through.

The Return To St Louis

Over the last few years we’ve been able to go away for a few days at Easter. We’ve headed down with family to the seaside town, Mumbles, in South Wales. The beaches around the coastline there are fantastic.

Returning to the same place has often shown how Rhys has changed over the previous year. He used to use a toy buggy as a walking aid which he’d take on to the sand. On the next visit he was no longer using it.

As much as it’s exciting to go to new places, returning to somewhere familiar is somehow reassuring and I always look forward to going down there.

Rhys and I are back in St Louis and in the same way it feels familiar and reassuring to be here. We’ll be back in The Children’s Hospital on Tuesday so that he can have his heel cords lengthened. They use a less invasive technique here and he should be back to weight bearing through his feet (with painkillers) the day after the surgery.

We’d hoped it could be avoided but watching him walk, crouch & scooter over the last few weeks has confirmed that though his legs are no longer stiff, he just doesn’t have the range of movement in his ankle joints to allow him to move & walk in a natural way. It’s the result of having walked in a ‘tip toe’ pattern for several years.

Looking back at the calendar for this year I’ve realised this will be his third round of surgery in just 7 months. From his cochlear implant on the 2nd March…

…to his SDR in June…

…to tomorrows surgery on his heel cords.

We head to the hospital at 10:30 in the morning (4:30pm UK time) hoping, once again, for a good outcome and a speedy recovery. And then who knows how able he’ll be next time we’re down on the beach in Mumbles.