4 Year Anniversary

Normally you celebrate anniversaries in 5 and 10 year cycles but this is a 4 year cycle that feels significant. It was the summer of 2012 that Rhys had his SDR surgery in St Louis.

The reason a 4 year cycle feels apt is that we landed back in London on the day the 2012 Olympics started, and Rhys went through loads of his rehab with me having one eye on the TV or radio following the team GB goldrush. SDR and the Olympics – the two events are for me, forever intertwined.

And then the Paralympics landed on a Britain that was giddy with success, eager to lap up more sport. The Paras left a deep impression on me at the time. I can remember sitting watching the opening ceremony on the TV in the kitchen.

The moment that’s etched in my mind is on youtube here (skip to 1:30). I’m no fan of classical music but the recital of Handel is to me both optimistic and reflective – which was precisely how I felt, sat in the dark with a beer in my hand in front of the telly.

Optimistic about where things would go post SDR, but reflective on the efforts and the support of others to get to this point.

Watching the opening of the Paralympics in Rio last week reminded of that moment.

Back in 2012 we’d bought tickets for The Paras and went to several events including the cycling in the  velodrome.

I wrote about that on this blog. It was a brilliant day watching Sarah Storey win gold (she’s added more in the last 24 hours) and it made me think about Rhys and cycling anew.

We’ve had loads of progress in Rhys’ ability over the last few years. Rhys is way more able than he ever would have been, his walking is pretty good, he’s swum more than 100m but we haven’t quite managed to crack riding a 2 wheeled bike.

Chatting to a mate at work recently he mentioned that his kids had a cycling lesson that weekend. I’d never thought of that – that like swimming lessons a coach could give a hand with cycling.

 

After a bit of googling I found out that British Cycling run para cycling events. So I emailed them and Rhys and I went up to one on Saturday morning, held at Stoke Mandeville Stadium.

As we got closer to the venue, signs in the road said that Stoke Mandeville was (of course) where the very first Paralympic games were held. They’ve got the cauldron the London Paralympic flame was held on there.

 

I realised then that it was also 4 years to the day that we were sat in the velodrome watching Sarah Storey storm to gold on her bike. Were the planets aligning for something to happen?

Well, if medals were being handed out for taking bumps and scrapes Rhys would have a gold. The coach there, Stuart (thanks for the session mate) took the pedals off Rhys’ bike and had him standing still, balancing quite quickly. He took a few bumps and knocks  and his interest faded, so had a go on one of the hand bikes they had there. They’re quite cool.

After a break we had another crack on Rhys’ 2 wheeler and managed to pull off a bit of balance biking.

Here’s a clip.

That was pretty much mission accomplished. It’s maybe what Team GB would mark as a ‘marginal gain’ but for us, a load of bumps and scrapes and a bucket of effort was paid back.

People that know me, know I like sport in many forms. But I’m aware that for many it doesn’t ‘fit’ and Rhys could be one of them, regardless of ability.

Those that have taken the field with me know I bring more enthusiasm than talent to sport. Though I value it, it’s not the be all and end all. There are other spheres.

Rhys has started to get the hang of playing the piano and last week got a distinction for a poetry reading he gave at school in the summer term. I’m chuffed about that. He’s had 2 cochlear impants since 2012, and I’ll happily raise a glass to those achievements for my profoundly deaf son.

If there’s something I’m dissapointed about it’s that 4 years on SDR still isn’t availble for kids in the UK without paying. I’ll spare you the detail but it was trialed here for a year and has been paused by the NHS whilst efficacy is assessed.

For me, and any SDR family there’s nothing to assess. Anyone that knew Rhys before and after surgery can tell you how effective this surgery is. You don’t need to be a clinician – our local newsagent will tell you it works.

 

Just last week newspapers carried the story of another child having to go to the US for self funded surgery when we all know that she should be having it here on the NHS.

She walked through the school gates this week to start school having previously used a wheelchair.

This is an ongoing political argument about SDR that I may pick up in a separate post.

As Rhys went to bed tonight we were talking about our day on the bikes and the Paralympics. He didn’t fully remember going to the velodrome 4 years ago so I showed him the photos. We also found some videos of the Para cyclists from London 2012 – they’re amazing.

And thats one of the things I love about sport and the Paras. The connections and coincidences it throws up. There was someone Rhys and I sat next to in the stadium on the final night of the Para’s in London as we watched the end of the track & field events that found this blog and got in touch – and meeting the guys at Stoke Mandeville this weekend can be added to the list of happy connections.

I trust and know, that whilst I’m  watching Hannah Cockroft in my kitchen claim another gold for Team GB, that other families will be dicovering the value of sport, and the Paralympics over the next 2 weeks along with the Paras motto ‘Spirit in Motion’.

 

 

Creating Change

It’s been a while since I’ve posted on here, partly as I slipped out of the habit and partly as there seemed less to report. But today definitely feels like a good news day.

A recurring question before Rhys had his surgery was ‘why isn’t SDR available on the NHS?’. There were a number of reasons which I’ve written about on this blog before.

If you cast your mind back you may remember that the issue was raised at Prime Ministers Questions which was another step along a lengthy campaign for change.

Since then, there has been a lot of work by other parents on various NHS committees where they’ve cajoled and advised to the point where the Daily Mirror published this today.

Here’s a link to the article in case you can’t read it.

It’s great news and it’s brilliant to see a positive story about SDR on the NHS in print.

In truth, there has been no dramatic shift in the last 24 hours. The decision to begin funding on the NHS in England has gone through many stages but it is hoped that within the coming months commissioning will begin.

For me, the moment when any child who meets the criteria, regardless of funding, can get access to the surgery they need on the NHS can’t come soon enough.

If you look closely at the photo you can see Rhys on the right in a Man Utd shirt.

The picture was taken at the annual Support 4 SDR party on Saturday. It’s the first time we’ve been able to get a ticket (they sell out fast). A group of the first parents to go to St Louis organise it each year – it’s quite, quite brilliant to see a hotel lobby full of kids all of whom have had SDR.

What’s also remarkable is that the surgeon, Dr Park and some of his team take time out of their schedule, and travel from the US to attend. Somehow he seems to remember every child that he’s operated on in such a detailed way that seems impossible. But he does.

Chatting to him it’s clear that he cares about these kids. He then spent about 3 hours straight, on the dancefloor with an army of SDR children, never once missing the chance to dance with someone showing off their new found ability. In fact, the whole US team were endlessly friendly, having photo’s taken and chatting to parents and kids, way past the point when we took the boys off to bed.

The following morning, we said our goodbyes to the other SDR families we know. For some of them its 4 or 5 years since they packed up their hopes in a suitcase and went off to St Louis to have their lives changed. Since they returned they’ve given their time and effort to create change for others, and hopefully in the coming weeks that effort will be repaid.

 

 

Happy SDR Birthday

One of the rehab activities suggested to us by the team in St Louis was indoor climbing. They had a 2 metre high wall in the physio room there which the kids would use for physio.

Back in January I put in a call to a friend of mine, Maddy, who’s an experienced climber. Kindly, he took Rhys and I to the Westway climbing centre under the A40 so that we could give it a go. I figured that Rhys would get a couple of metres up, then fatigue and come back down – if we pulled that off it would have been worth the trip. Then this happened.

It was, for me, a bit of a moment. Alright, Maddy was helping him a bit but he’d done most of the work himself. What impressed me the most was the new ability he had to control where he was placing his feet. It was genuinely a big surprise and impressed a number of Rhys’ physios here.

A few weeks after that I went back to full time work and it’s been difficult to carve out the time to go climbing again. The days and weeks since have tumbled past so fast it feels like time has been concertinaed together, and now, somehow 12 months have passed since Rhys had his SDR on 28th June last summer.

As much as going back to work makes things feel more ‘normal’ you can’t help but feel like you’ve somehow deserted your post. The question ‘did I do enough?’ rattles round in your head. That’s a common thought for many parents but it feels like it’s amplified a bit in these situations.

In order to get a sense of what’s changed for Rhys since his op I have to cast my mind back to what we were thinking before his surgery.

At Easter in 2012 Rhys was still using a buggy to get to school in the morning. It’s only about a mile away, but when you need to get there quickly there was no other way to do it. The problem was he was too big for the buggy so we were starting to consider getting an oversized one or a wheelchair. Neither were situations we really wanted to embrace, the underlying concern being that Rhys would, in time, go ‘off his feet’.

Now though, Rhys has got that good at riding his scooter that he clips along almost as fast as any of his class mates. That’s quite a turnaround.

Admittedly, walking that mile to school is still a big ask as he still trips and tumbles way more than his friends. But, you can’t help but feel we’ve gone from managing a decline to managing solid progress. I have to keep reminding myself of that when we have physio sessions that don’t go well.

And thats another fact – that Rhys still has Cerebral Palsy. As much as he has new ability there will always be muscle groups that he really struggles to recruit. And the recovery from SDR is ongoing as well. When you look at the angle of his feet and legs there’s still a fair bit of inward rotation. So we’re still attending 2-3 physio sessions a week, and we’re still treadmill walking and stretching every morning before school.

Another really neat thing though is that Rhys has learned to jump. Creating the power and control to spring off the ground was way out of sight pre op – now he can repeatedly jump his way round the house. He can also put a few jumps together on a trampoline now. Have a look at this video clip.

You may remember seeing this picture of Rhys on his trike.

We’ve moved on from that now as well. Father Christmas brought Rhys a new bike with stabilisers. As the weather has improved we’ve been out practising on that as well. Here’s a video clip.

Getting rid of the stabilisers will take a while but it feels like it could be achieved in the coming years. I like the idea of him riding to school – an appearance in the Olympic velodrome is less daft than it seemed last summer.

There’s been other benefits beyond his physical ability. Rhys’ teaching assistant at school has often remarked that he’s also a more confident boy since his surgery. He’s more inclined to get involved in games in the playground than he was before. He goes to the drama club at school as well and they recently did a test where he had to recite a poem.

Though I’d love it if he passes it, I almost don’t care what the result is. The fact that he was in there, barely a year after his SDR & cochlear implant, meant he was already a winner.

As much as the SDR surgery itself made us feel anxious I was amazed by the technique and the science behind it. Many of the physios in St Louis have watched the procedure being carried out in theatre to aid their understanding of it.

I remember saying to them that it must be fascinating to watch – they agreed that it is fascinating but that you wouldn’t want to observe your own child go through it – which I agreed with.

Recently I found this video of Dr Park operating – it’s quite remarkable but definitely confirms what the physios had said. Watch it from 7 minutes in.

http://www.childrensforhope.com/episodes/episode-4/

A few weeks ago Sally was getting Rhys ready for bed and he asked her ‘Mummy, will I have any more operations?’

Though we can’t be sure (the hope is that we should now avoid several rounds of corrective surgery as Rhys grows) we hope not. The worry was though, that this was on Rhys’ mind every night before bed.

She replied ‘No, I don’t think so’

‘Oh. Well can we go back to St Louis again?’. Which means that all the pain and frustration from last year has faded for him and he already looks back on it as a adventure where we met new people and went to new places.

And that for me, combined with his new ability, means that all the anxiety and stress before and since his surgery has been worth it.

So here we are – Happy SDR Birthday.

NICE work

It’s getting close to being 12 months since Rhys had his surgery in St Louis and in the coming weeks I’ll write a post about how he’s doing.

In the run up to his op lots of people asked me ‘Why isn’t SDR available on the NHS?’. There was a heap of reasons and I wrote about it here in a post from September.

At that stage the issue had been raised in Prime Ministers Questions with David Cameron being asked directly about the availability of SDR.

That all came about due to the persistence of a group of parents that make up Support4SDR UK. Since then they’ve continued pursuing government ministers, writing letters, picking apart illogical arguments put in their path until they met today with Norman Lamb MP, Minister of State for Care and Support.

Incredibly, he’s been persuaded to take action on several fronts.

Firstly, Mr Lamb will write to NHS England, NICE and Andrew Dillon (Head of NICE) to ask them to interpret the guidelines to make it clearer that SDR is a viable option
 as a treatment.

He’ll also ensure that NICE use the available long term evidence from St Louis in their deliberations
.

He’ll write a request to NHS England to fund operations without delay
.

Finally, they will come back to Support4SDR to advise what is happening with the updated guidelines and the commissioning process

It’s an amazing result and it feels as though the availability of SDR on the NHS in England has just got an awful lot closer. It’s also a tribute to the sheer persistence of a small group of dedicated parents determined to create a change.

A Year

Six years ago to the day Sally and I were spending Christmas Eve in Queen Charlotte’s maternity hospital. Close to 2 months after being born Rhys was still in the special care unit of the hospital.

We’d hoped he’d be home by Christmas but it wasn’t to be. Though in many ways it would appear that it wasn’t a great Christmas I realised afterwards that in some ways it was almost a privilege. That’s not because lavish gifts were being exchanged in the hospital – more that the adversity of the situation that many families were in was galvanising.

The hospital staff made so much effort to be cheerful and make Christmas day different there was a very special atmosphere on the unit. It felt like you were being given the chance to share in a purer form of goodwill than you would ever normally experience. And as the decorations were cleared away in early January Rhys was well enough to come home.

Another 4 years to the day we were back in the same hospital welcoming Owen to the world on Christmas Eve. Though he was a few weeks early it was a lot more straight forward.

Fast forward a bit to the decorations being cleared away at the start of 2012 and my head was quickly filling with trying to work out how we’d pick our way through this year.

There seemed to be an implausible number of things that had to fall into place for Rhys to have his implant and SDR surgery and recover from both within the year. It still bends my mind that within weeks of a surgeon drilling through his skull to insert his cochlear implant he was back in theatre having nerves irreversibly cut in his spine.

If you added in the possible risks associated with the surgeries I came to thinking that if we got to Christmas this year and we were all just alright, and nothing had gone wrong, then that in itself would be worth celebrating.

And if we were to get to this Christmas and all the surgeries had been successful – well, I’d have taken that in a heart beat. So I have to keep reminding myself that that is what has happened. It feels like we’re ending the year in a pretty good place.

Whilst we’ve been the ones stood in the middle of all of this, it’s pretty clear to me that we didn’t do it on our own. It’s not possible to list the names of everyone that has contributed to this happening. There’s just too many doctors, nurses, therapists, co-ordinators, teachers, family members and friends that have helped along the way to get Rhys to where he is.

As I’ve said on here before, no amount of progress is too much and Rhys’ recovery is an ongoing process. For example, weaning Rhys out of his splints is going to take more time and Rhys and he still takes a fair few tumbles. That’s all balanced off though by Rhys doing his 25m swimming badge last week and having moments where he surprises me with his ability. Here he is walking down a few steps at his school unaided.

If you’ve read any other pages of this blog you’ll know I like a quote and whilst sport can often provide memorable ones, politics is a rich seam as well.

Here’s a quote that’s often attributed to one of my heroes, Nelson Mandela. Whether he did or didn’t say it in his early speeches as South Africa’s President doesn’t matter too much. It’s a good line regardless. The sentiment of it makes me think about Rhys, his place in the world and the way that his progress might impact on others. Here it is.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us.

We ask ourselves, Who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? Your playing small does not serve the world.

There’s nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. And as we let our own light shine, we unconsciously give others permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

Merry Christmas everyone. Here’s to a good new year as well.

The Tipping Point

A few years ago there was a book written by Malcolm Gladwell called ‘The Tipping Point’. I kept hearing about it and wanted to know what the fuss was about so I got a copy.

The book sets out his theory as to why some ideas catch on – whether that’s in fashion, business, music or health – and why other ideas splutter and fail. What is it that takes things to ‘The Tipping Point’ where a trend suddenly explodes in popularity?

Reading the book my mind would flip from thinking ‘this book is bloody brilliant’ to feeling Basil Fawlty would call it ‘Specialist Subject : The bleeding obvious.’

Either way the term tipping point started to crop up in articles about sport, politics, business, everywhere really, to describe situations where after a certain (tipping) point things get easier.

Since Rhys had his SDR in the summer I’ve thought several stages might be the tipping point – that things would suddenly get easier for him and flow a bit more.

As the autumn has progressed I’ve started to think that there probably isn’t one. That’s not because things have gone wrong, more the realisation that the recovery from SDR is a gradual process achieved day by day, inch by inch.

The temptation when posting on here is always to just post video clips of Rhys doing well. Whilst I’m the first to celebrate his triumphs doing that might give the impression that the recovery just happens, which isn’t really the case. There’s a fair bit of grind to it which largely explains the absence of posts.

It’s now 8 weeks since Rhys had surgery in St Louis on his heel cords to lengthen them and it seems very, very distant. In fact, if it wasn’t for the scars on his calves I’d swear it hadn’t happened at all.

We flew home just a few days after this round of surgery and whilst it was good to be back at home it did have it’s drawbacks. Rhys was once again less able than he had been and being in familiar surroundings seemed to exaggerate that lack of ability. Not being able to climb the stairs at home was much more frustrating than being in a wheelchair in St Louis.

That, combined with the tiredness of travelling, wearing ankle splints and the mood swings the pain medicine caused meant that he wasn’t very happy – especially with me.

It made me realise that all this frustration had happened on our first trip to St Louis but it had largely passed by the time we returned a month later – in a way we’d left all the frustration in St Louis – whereas this time we’d brought it all home with us.

Another similarity with our last trip was that as Rhys’ pain passed, his ability came back up and with that his confidence began to return. That confidence combined with treadmill walking, stretching, splinting, cycling, horse riding, swimming and 3 or 4 physio sessions a week has had an impact. Here’s a video clip of him on the treadmill last week.

Out of that list of activities it’s hard to know which is having the most impact on his recovery. All I know is that if you try and do all of them Rhys improves – do nothing and his old walking patterns will start to emerge.

Listing all the therapies we’re doing reminds me of a quote I read over the summer from David Brailsford. He’s the head of the British Olympic cycling team and put their success down to ‘the aggregation of marginal gains’. Though it’s a nerdy phrase I quite like it.

The idea is that lots of small improvements (such as the electrically heated “hot pants” that kept the leg muscles of Chris Hoy warm between the races, inspired by Formula One’s tyre warmers) add up to give you an advantage.

Now even though Rhys isn’t wearing electrically heated underpants to school (not yet anyway) that idea of making ‘marginal gains’ seems closer to what we’re doing than any ‘tipping point’. Day by day we make tiny notches of progress which over weeks and months should add up to something.

Every now and again Rhys unconsciously puts everything from his physio sessions together. He’ll walk out of a shop and his arms will drop to his sides, his posture improves, there will be little in toeing, a nice ‘heel toe’ gait and you think ‘that’s it, that’s it, keep it, keep it’ and then 10 seconds later it’s gone again. You kind of get a glimpse of how well he can make his body move before the old habits return (but still better than pre surgery). Have a look at this clip of him walking in the gym last week.

I hope that this post doesn’t sound like whinging – it’s not intended to – it just feels like only posting a clip of Rhys walking nicely without an explanation would be a bit deceiving. I feel like I have to acknowledge that the rehab process is every bit as hard as I thought it might be. In order to do all the physio sessions we’ve had to call in a lot of favours from friends and family to help look after Owen. There’s also been countless times I could have chewed the steering wheel off the car when stuck in traffic on the way to and from sessions. And there’s the off days where Rhys will fall several times between getting out of the car and walking through the school gate. So while you know you chose to go for the surgery the repetition of the recovery can be quite tedious – I know other SDR families feel the same.

In all the guidance notes given to us about SDR we always knew that the recovery happens over a 2 year period, with the first 6 months the most difficult. Maybe you unconsciously hope that you might find a shortcut or a loophole to jump through so you can accelerate the process. In truth, the timeframe given by St Louis is proving to be pretty accurate and Rhys is doing well. Here’s a video clip of him on his scooter.

So for all the tiredness, frustration and traffic jams we haven’t lost sight of the fact that Rhys is making rewarding, steady progress. And for that we are very, very grateful.

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.

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.

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.