Wobble

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.

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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.

A Week

‘A week is a long time in politics’ is a well worn phrase. Well worn because it is so often true.

Following Prime Ministers Question on the 5th September where the availability of SDR was raised things have moved quite quickly.

A meeting between the MP who raised the issue, Chris Heaton-Harris, and the board of NICE was hastily convened to discuss the changed guidelines. The meeting took place last Thursday.

The NICE guidelines on SDR had recently changed suggesting that a large evidence base covering 8 – 10 years needed to be built showing the safety & efficacy of the procedure so that the correct candidates could be selected for it. This would effectively rule out it’s availability on the NHS whilst the evidence was gathered.

At the meeting NICE clarified their position to say that the new guidelines should be read as an addition to the old ones they’ve issued. That the evidence should be gathered as operations are carried out. All of which means that operations will be available on the NHS – but decisions on funding them are for the individual Primary Care Trusts to take.

So whilst this week represents a significant staging post in the availability of SDR on the NHS, I and other parents are concerned that we’ll be left with an ‘NHS postcode lottery’ where one region will give funding – and the neighbouring one doesn’t.

We’re hoping that when the clarification on the guidelines is written down it will be so clear and unambiguous that each child who is a candidate will get treatment.

**********

It’s also a week since the end of the Paralympics. Like may other people I absolutely loved it.

There used to be an argument disability campaigners would make that the Paralympics should come before the Olympics. So that they’d be seen more as a ‘starter’ as opposed to something tagged on the end.

I used to think that argument had some currency – but to be honest I think it’s dead in the water now. I don’t think there’s anyone out there now who feels the Para’s were tagged on the end as an afterthought. The sport was just too good.

I’ve also heard people try and make the argument that the success of the Para’s will put more pressure on people with disabilities. But I don’t think that carries much weight either. Expecting everyone with a disability to be a Paralympian is as daft as expecting every fully able person to be an Olympian – the world just doesn’t work like that.

I booked tickets for the Paralympics last summer (that looks a bit smug written down) way before we knew Rhys would be having SDR. When I sent the order I figured we’d be sitting in half empty stadiums – how wrong was I about that.

I booked them partly as I was annoyed about not getting the Olympic tickets I wanted. Also, I hoped that the sport might sow a seed in Rhys’ mind about how everybody is different but they can still get involved. Surely I, as his father, having spent hours in physio sessions with my eyes ‘looking to the stars’ didn’t need to have my pre conceptions about disability changing. Right. Wrong.

My moment of the games came when we were in the velodrome – it’s awesome in there.

(And if you’re thinking I’ve aged a bit that’s actually my Dad in the photo with Rhys)

We were watching the ladies time trial and a Dutch girl was making her way to her bike on the start line with the support of another team member. She had CP and her balance & walking pattern was arguably worse than Rhys’ – but to see her race was incredible. She stormed round the track. And that’s when the penny dropped in my head.

I can’t ever remember thinking that Rhys would or wouldn’t ride a 2 wheeled bike but all of a sudden seeing this girl race and win silver everything seemed possible. That’s not that I expect Rhys to race in a velodrome (he’d still rather be Katy Perry than Chris Hoy) more that the boundaries of what’s possible shifted in that moment. Long bike rides by the river are suddenly on the agenda.

It’s obviously not just me that has had their mind and opinions moved by the Paralympics. When I first saw a swimmer without arms powering their way through the pool I was amazed – but a week later as I watched, it didn’t seem that remarkable anymore. I was just watching the race. And so I think that the 10 days of sport has shifted perceptions of people with a disability further than they’ve moved in the previous 10 years.

Here’s the moment when Team GB swimmer James O’Shea met British 10m swimmer Rhys Heal.

It was great that the athletes were just hanging round the venues after competing. My sister had her photo taken with an American gold medalist just after she’d got out of the pool.

In amongst all this Rhys went back to school last week and as I picked him up one day 5 or 6 lads were wearing blindfolds running round the playground trying to play blind football. That’s definitely something that you wouldn’t have seen 2 weeks ago. Before we got home I bumped into another parent I know whose child has CP. She told me about the ongoing arguments she has had with the local wheel chair service.

And that kind of sums up for me where we are – we’re somewhere in the middle. We’ve glimpsed through the prism of sport what we can achieve and how incredible society can be – it’s just that we’ve not arrived there quite yet.

But I have to admit that I do like where we’re going.

NICE

‘Why isn’t SDR available on the NHS?’ is a question lots of people have asked me over the last 6 months – and it’s a good question.

In this country the National Institute for Clinical Excellence (NICE) decide what medicines and surgeries can be performed on the NHS in this country.

Over the last year there’s been a gradual acknowledgement by NICE on the effectiveness of SDR leading to the hope that in a few years families will no longer trek to St Louis for surgery.

However, that progress was undone a few weeks ago.

Over the bank holiday weekend Rhys’ surgeon, Dr Park posted a message online. In it he was reviewing the newly published guidelines for British doctors for managing spasticity in children. I’ve had a look at the guidelines from NICE myself. Here’s a link to them.

It mentions lots of the treatments we’ve explored in the past. Physiotherapy (tried that) ankle orthotics (got a draw full of them in Rhys’ room) botox injections in leg muscles (got that T shirt as well – 3 of them).

But in the report SDR isn’t mentioned as a possible treatment – just that more research is required. And if it isn’t in the UK guidelines then receiving SDR in this country on the NHS just got a lot more distant.

However, the writers of the report do know about the efficacy of SDR as they’ve issued papers on it in the past. So why the change now? Well, make your own mind up about whether that’s about cost, pride about admitting a lack of knowledge or just laziness. Either way it’s an omission that will harm British children with Cerebral Palsy.

Knowing that NICE were moving towards approving SDR in this country helped us in our decision making. If a British board of clinicians were looking at the evidence and were deciding it was beneficial then we should go for it.

Reversing that position though makes it appear as though there’s a flaw with the surgery, that it’s been proved unsafe or ineffective – all of which we know is untrue. I’m sure that this shift will make some families more anxious about making the trip to St Louis. It will feed some of the myths and ignorance around the procedure.

What is clear is the impact that it’s had on Rhys and other ‘Rhizo’ kids we know. The two other British boys staying near us in St Louis have made huge progress since surgery. One boy has just walked to school for the first time this week, the other 3 year old has just left his walker behind and taken his first 12 independent steps.

We bumped into Rhys’ paediatrician recently who previously had little knowledge about SDR. I didn’t have to explain too much about how Rhys was – it was clear from looking at him.

He’s more upright in his posture, better able to balance, he walks with flatter feet, his trunk sways less as he walks, he tip toes less – still work to do but clear improvements.

By the end of the chat two other paediatricians had come out of their rooms to see Rhys chasing Owen around the waiting room. Indeed, other professionals that know Rhys have shifted their opinion on SDR this summer.

So why blog about this now? Well, because yesterday it landed in David Cameron’s inbox.

At Prime Ministers Question Time an MP, Chris Heaton-Harris asked David Cameron to review the NICE guidelines.

And the reply? He promised to “look very closely and see if there is anything more that NICE should consider”.

Though I’d love to claim the credit for that I can’t – it goes to another SDR family.

I want to give them as much support as I can in the coming months because there’s a long way to travel before the guidelines actually get changed – agreeing to look at something doesn’t always equate to change.

And when Mr Cameron is ready to “look very closely” he’s welcome round here to meet Rhys which should tell him precisely “if there is anything more that NICE should consider”.

I think there will be more on this in the future.

** Updated 11th Sept **

Distant

Now that Rhys has had SDR, the whole process, decision making and surgery, seems to have happened ages ago – like you’re looking at it through the wrong of a telescope. You know it’s there but it’s all very distant.

Indeed, I think with any decision you take in life it’s natural to want to feel like you’ve got it right. Whether that’s the new pair of shoes you bought or spinal surgery for your child – you unconsciously look for reasons to back up your choice.

We’ve been back home for a month now and Rhys has changed in lots of ways – it’s very hard not to attribute most of them to his surgery. Have a look at this.

It’s Rhys’ 10m swimming badge. He could swim a bit before surgery (doing the doggie paddle) but in the lessons he’s had this August he’s nailed the backstroke. Here’s a clip.

So what’s changed? Now that he can keep his body straight through his hips he can keep his body flat in the water and doesn’t sink like he used to.

He can also now disassociate his arms and his legs better. That means he can do different things with his arms and legs now he’s free from spasticity – exactly what you need for backstroke.

He’s also getting the hang of the crawl, breaststroke and can do ‘butterfly’ arms. Suddenly, that Paralympian status I wrote about last time seems a little bit less ridiculous.

Being better able to disassociate his arms and his legs helps in so many other ways as well. You know those pump action water pistols – Rhys has suddenly cracked how to use one. He can walk, stop, pump the gun, soak you and then walk away.

Granted, St Louis is a long way to go to learn to use a water pistol but those skills all seem new – and they should transfer nicely to doing things with tools at school or home.

And remember me saying that riding a scooter was too intricate – have a look at this.

Now clearly that needs a bit of work but pre op he couldn’t even stand with one foot on a scooter without toppling.

He’s also better at climbing in the park (some nice sidestepping around ledges), has nearly managed to get his leg over the banister at home (impressive range of movement there) and somehow since his surgery he just looks more grown up.

Now I’ll concede that his moustache isn’t a result of SDR but in so many ways Rhys’ mobility has improved in such a short space of time it’s almost unarguable that surgery has been good for Rhys.

What’s also now clear is that Rhys will need another round of surgery to lengthen his heel cords as he hasn’t recovered quite enough range of movement to walk with completely flat feet.

This isn’t a big surprise for us but we were hoping to avoid it. It’s a much less invasive procedure and Rhys is scheduled to return to St Louis for this in October.

The astute will have realised that this coincides with the finals of the BBQ championships in St Louis but I can guarantee that it’s a coincidence and I won’t be packing my tongs. Promise.

Enjoy the remainder of the summer.

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.