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.

rhys_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.

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12 thoughts on “Happy SDR Birthday

  1. Wow, what an inspiration! Happy SDR birthday indeed Rhys and family!! I still often think about you and am so happy to read your update on the last year! The piece
    is also beautifully written and lovely to read, you go Rhys!!

  2. Go Rhys! Wonderful to see you whizzing around and climbing! I have no head for heights so am incredibly impressed. Happy SDR birthday! Gareth and Sally, you’ll have a job keeping up, so you’d better watch out! Love to all.

  3. AMAZING. Could n’t believe the amount of dissociation and abduction of Rhy’s legs during such a strenous activity and the control and strength he showed. Sorry – difficult not to look with physio eyes! Great fun too I bet. Happy SDR Birthday indeed. Best wishes to you all and keep sending the blogs Gareth, they are inspirational.

  4. Cracking stuff Rhys. I sat next to you at the Olympic stadium last year and have kept an eye on your progress. Keep working hard….keep surprising Dad.

  5. Even though we see Rhys frequently I am still astounded by his progress. He is a strong and determined little chap and with all your guidance and encouragement he has and will continue to go far. Well done to all of you, it is amazing.

  6. What fantastic progress Rhys, well done! Keep up the good work!! Looking forward to seeing you all at the party, it’s been a while. Lots of love to you all, Alex xxxxx

  7. We are all so proud and pleased to have Rhys as our famiy member – hes been through so much but is such a strong little boy and full of the joys of life! Its fantastic to see hes progress, but I still cry at every post I read!. The Walkers x

  8. WOW!!!!!! Well done you Rhys! I couldn’t climb a climbing wall……… I’m a bit of scaredy cat when it comes to heights!!!!! See you all very soon!!
    Francesca xxxxx

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