Potential

Before leaving America I found out that you can sometimes pick up cheap tickets to go and see The St Louis Cardinals, the town’s baseball team play.

I went down to the ground last Monday and picked up some $10 tickets for the 7pm fixture against the LA Dodgers.

Chatting to people near us as I tried to figure out the rules everyone quickly realised we weren’t locals – and when they knew we were from London they were excited about the Olympics being in our home town.

By chance, one of them was a guy whose child had craniosynostosis – where the plates of a child’s skull fuse too early causing a brain injury and frequently cerebral palsy.

His son had had surgery at the same hospital as Rhys and he told me how the surgeons there have pioneered a new, less invasive technique to separate the plates. It means the child only needs one round of surgery instead of the repeated operations to divide the plates using the old method.

It was another reminder of the genuinely remarkable things the surgeons at the children’s hospital are achieving.

As the match got underway the temperature was still in the ‘triple digits’ and it was clear that the boys were going to melt before too long.

They managed to last about half of the game which was fine – it was a nice thing to have been able to do before we travelled home.

As we came back through Heathrow airport on Thursday it was a moment to think about where Rhys is at. A few weeks ago I’d hoped that Rhys would be back to himself before we boarded the plane. Now though, achieving parity doesn’t feel enough (it’s that thing about progress again) but you can see some clear changes in him. His posture is better, he’s more upright and he’s standing and walking with flatter feet.

What’s also now clear is that his old pattern of walking (in toeing & tip toeing) is going to take a bit of time to revise. Having walked like that for 2 1/2 years it’s not going to disappear over night – though it has improved. What the physio’s call ‘the motor plan’ is going to need to be re learned over the coming months which means lots of physio sessions.

I guess what he really does have now is potential. His legs are much softer than before, he has greater control over them and he has greater range of movement. Maximising that potential will take time. It’s one of those ‘get out of it what you put in’ situations.

Coming home to the start of the Olympics feels very apt. I’m taking Rhys to the Paralympic Games in September and I hope that as he grows up he’ll remember them. I’m not assuming that Rhys will want to do that or that he’ll be any good at sport (he’d much rather be a singer right now anyway) but why shouldn’t that be within the realms of the possible for him?

Having watched the opening ceremony over the weekend the games motto of striving to be ‘Higher, Faster, Stronger’ couldn’t be more appropriate right now.

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The Que In The Lou

Had I known that St Louis had a barbeque society before we’d left the UK I’d probably have applied for membership.

If I’d known that they were holding a championship whilst I was here I might have entered.

And had I realised it was being held in the car park behind our apartment – well I guess that’s what some people call fate.

But then fate can work in mysterious ways. Had I been stood there with my tongs when Ed turned up with his barbeque ‘The Punisher’ then I would probably have felt inadeqate.

And then when the team from Tom’s bar starting cooking ribs with their BBQ I would have had to have conceded I was out of my depth.

It was good to be out though and break the routine of visiting the hospital. Rhys had said to me last week ‘can we come back here on holiday?’. And I knew what he meant – the last few weeks haven’t been much fun. Indeed the last 5 sessions saw us taping and strapping his legs in various directions before marching up and down flights of stairs to see what worked.

That all served as a cue though to deliver on the promise to take him to see the Katy Perry film. We also went back to the splash park that we found a few weeks ago. Returning to the Aquaport was something I’d hoped we’d be able to do but just a fortnight ago, with Rhys still very weak, it had seemed out of reach – but there we were.

He’s also made some nice progress in the physio sessions. Though it may seem insignificant he was on the climbing wall in the gym (with support) and was reaching for footholds way further than I’ve ever seen with his legs. He also spent 3 minutes side stepping (on each side) on the treadmill. It doesn’t read as being impressive but that’s where the progress is made.

So it was nice to end the weekend by stumbling into the BBQ championships. Rhys was certainly impressed by the band playing there – and this video clip serves as a demostration of how close he is to being himself.

And if you’re wondering, the cook off in The BBQ Championship Finals are being held in October.

Anxiety

It’s probably not been hard to tell from reading these posts the points at which we’ve been the most anxious.

Immediately post op wasn’t much fun at all. Seeing Rhys looking incredibly weak and in a lot of pain I think it’s only natural to question whether or not you’ve just made a whopping mistake.

Even though we were assured that his recovery was well within the normal range the knot of anxiety in our minds only loosened as Rhys made progress.

I can remember the period before Rhys could walk. I obviously felt anxious about whether or not he ever would. It’s uncomfortable carrying that anxiety around with you all the time but it is quite motivating. You keep reading and researching as you try to find the therapy, the method, the ‘thing’ that will help. And as Rhys became more able so the anxiety slid away a little – and with it, some of that motivation went as well.

As Rhys is getting closer to his pre op ability you can again feel the anxiety passing. The realisation is though that we need to keep the motivation up. If Rhys is to get the most back from this surgery we need to get him back to where he was, and then kick on – and that will take a fair bit of effort.

We were reminded of that when we saw Rhys’ surgeon Dr Park yesterday for a post op assessment. He was pleased and impressed with Rhys’ recovery so far. We talked a lot about the stretching and the physio that Rhys will need to do to maximise his new potential (quite a bit).

Some of it isn’t going to much fun. Rhys has got these new splints to wear at night for the next 6 weeks (he’s waking again as I type).

The aim is to to stretch out his heel cords. Dr Park repeated his thought that Rhys will need to have surgery to lengthen these – that’s something we’re continuing to explore while we’re here.

We also talked about how the UK body NICE have changed their guidelines on the surgery being performed in the UK which is likely to have a detrimental effect (more on this in another post).

Dr Park said that Rhys’ progress will probably come in bursts over the coming weeks (I think we saw a significant burst last week) which means I’ll probably post here on a less frequent basis as we move on.

On the wall in Dr Park’s department are lots of photos of the kids he’s operated on. Given that we may not see him again for some time we took our photo to add to the wall at some point in the future.


And for the record Rhys’ Welsh rugby shirt was in the wash.

Puzzle

In the downtown area of St Louis stands the Gateway Arch. You could see it from the hospital window so went to have a look at it over the weekend.

Up close it is pretty spectacular.

At the very top is a viewing deck which you travel up to in little pods. We had about 30 minutes to kill before our slot and in that time Owen was running around the waiting area.

He was doing that thing that toddlers have endless energy to do. That is, running, spinning, stopping, crouching, stamping, arms up, arms down etc etc. If he’s not annoying anyone else I find it amazing to watch. It’s as if his little brain is trying out all the possible things it can do with his body – trying all the combinations at different speeds until he falls over – and then doing it again.

Cerebral Palsy throws a bit of a spanner in the works of that. Instead of that learning process happening automatically the changes in body position and transitions need to be learned and coached in physio sessions. Where a fully able person might be coached to do a complex task (drive a car, swing a golf club) someone with CP can need to be coached in simpler tasks, to sit, stand, walk etc etc.

You can see in the way Rhys is moving at the moment that although his legs no longer feel stiff he is still walking in a similar pattern to the way he did pre op. I guess that’s partly habit and partly because his legs have spent so long in that position that it’ll take a bit of coaching to change – he is only 2 weeks post op after all.

So it feels like there’s a bit of puzzling to be done in the gym this week. That is, working out which combination of strapping, taping and exercising will work for Rhys to help him re adjust the way he moves.

And that’s not because I want him and his brother to be the same – they’re both different and they’re both ace.

The Remarkable Becomes Routine

There’s a video up on youtube of the progress Rhys made from birth to just before his op. The odd thing is that it feels like the stages shown in the video have been crammed into the last 2 weeks.

It’s 14 days since his surgery now. Here’s his scar, neat isn’t it?

Him and his friend Mario were wandering about with their shirts off at the zoo showing off their matching scars. It looked like instead of naming our children we just use branding irons to identify them.

SDR is performed fairly frequently at the hospital here. The nurses casually say ‘he’s had a Rhizotomy’ in the same way you’d say ‘he’s had sausages for tea’. What can one day seem remarkable quite quickly becomes routine.

Same with Rhys therapy sessions. What seemed remarkable yesterday already feels routine. Today in his session he spent 10 minutes on the treadmill and walked up 4 floors on the fire escape stairs. And though it sounds unappreciative it almost doesn’t feel worth mentioning that he did that. Much the same as I was writing last week – you pocket the progress and move on.

You could though see that he was tired today. He’s put a lot of effort in this week and we’re very proud of him. Again, the weekend is coming round and I’ll probably skip posting on here for a day or so.

In the meantime, a competition. The guy in this clip is a volunteer who wanders round the hospital playing his violin to patients – any guesses as to what tune he’s playing? Answer on a postcard…

Confidence

The kids hospitals at home have child psychologists attached to them and when your child is having treatment you can draw on their knowledge – I find talking to them fascinating.

I’ve spoken to them before about Rhys’ confidence. He’s always had a reasonable level of it which has carried him a long way but I’ve often worried that one of these stays in hospital would knock it out of him – especially this one.

One of the psychologists told me that confidence is self reinforcing. That is, that if Rhys is comfortable and confident in who he is, then those around him will accept him as he is, and his confidence will be reinforced. The reverse is also true. That is, that if you aren’t comfortable and confident in who you are, then people will view you as such, and that will be reinforced. Clearly, you want to be on the right side of that equation. (Not sure if it applies to adults but it sort of fits.)

Over the last 48 hours we’ve been giving Rhys less pain medication and it seems that though he is still weak, it’s partly confidence holding him back more than discomfort.

However, when we get over to the gym at the hospital his assurance in his ability seems to go up a notch. I think it’s partly to do with the way the room is with lots of grab rails and crash mats, partly the energy the physio’s bring and partly him wanting to show off.

This morning at home we were trying to practice side stepping. I maybe got him to do it twice with me taking all his weight. His spasticity would previously be pulling his leg in the opposite direction (causing the ‘scissor’ in his legs) so he’d never really do it.

But once in the gym he side stepped quite nicely on the treadmill loads of times – quite impressive. And then this (watch for him side stepping completely independently).

Now that may not seem that incredible but it’s a useful skill when walking to be able to change direction. He then followed that up with his other new moves. It still needs a bit of work but he’s almost nailed the ‘water sprinkler’ dance as seen in Katy Perry videos.

I also realised today that we’ve reached the half way point of our stay. Two weeks from now we’ll be heading for the airport to fly home. Rhys also seems about half way in his recovery.

Although he now has some improved quality in his movement he has some way to go before he recovers all his speed and endurance – but it does at least feel that right now we’re on the right side of that confidence spiral.

And he can do ‘The Sprinkler’ dance.

Step Step Stop

There’s loads of good things about the city zoo here. One is that it’s close to the hospital, the other is that it’s free to get in. That means that after a session in the gym you can go there quite easily for a couple of hours and as you inevitably don’t see much you can promise to go back.

We headed there today with Rhys’ new buddy Mario.

They’re more or less the same age and had similar ability pre op. The nice thing is that they had surgery a day apart and they are recovering at pretty much the same pace. In fact they’re egging each other on which is very handy. So when one of them wanted to stand to see the giraffes the other wasn’t far behind – which is exactly the reason for heading for the zoo.

Walking is one thing (this will make me sound ungrateful) but the control required to go with it is difficult to master. Pre op Rhys would rush everywhere a lot and grab something when he arrived to balance. As when you ride a bike the momentum from moving fast keeps you upright. It’s hard for kids with CP to have that extra control to stop and turn etc.

Here’s a quick clip of him trying to take 2 steps and stop.

You can see it’s hard work to co ordinate everything. However, his posture and gait is pretty good even though a wobble is never far away.

Aside from that Rhys is working on some new moves that you probably won’t find in physio manuals . Once we get them mastered I’ll post some clips. And in case you’re wondering if we’ve erased Owen, don’t worry, he’s never far behind.