Today marks 4 years since Thomas’ life-changing SDR surgery in Bristol.

Thanks to the team there and all the amazing people who have worked with him over the years, Thomas is living a full and precious life. He is experiencing so much joy and still making incredible progress. This summer he has:

• begun cycling to school under his own power (not attached to one of our bikes)
• started wanting to walk longer distances outside, including to school along the busy lane!
• won his first dressage competition
• passed Stage 3 swimming, having set himself that goal

It is wonderful to observe him becoming involved in his own learning, discovering his own source of strength and intelligence.
We even caught him explaining to Dylan how to help him maintain a good walking gait. The result? Dylan gently encourages Thomas with tips and observations as they walk to school, to ensure Thomas keeps walking well. We didn’t tell Dylan anything – it was all Thomas himself saying what would help him. They are both amazing.

This is the gift you gave him when you supported Helpthomas2dance. And it’s a gift that will keep on giving for the rest of his life.

Whilst we know that more challenges (and further surgery) lie ahead, we are reflecting today on how much Thomas has progressed, and celebrating him for who he is.

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Thomas completed yet another block of physio at Footsteps AND passed his Stage 3 in swimming this summer. Now it’s back to school to rest and recover!!!

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This summer we have taken a step back from the ‘regime’ of physio is order to spend time with family and friends. It’s been good for the soul and so interesting to observe Thomas wanting to set himself his own goals whether that be walking for longer or cycling independently. This is huge because after 6 years ( he is only 8), he understands why it is beneficial to stay active.

We are so proud of him.

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It’s been a while since I last posted on here.

We are well and happy to be back with our friends and doing the things we love.

Half term = Physio but there will be some time to play too for sure!

Hope you are all doing okay too!

Step by Step. Day by Day.

Though there won’t be much down time for this wee warrior over half term as we are back at Footsteps for another block of intensive physio, we will find moments, moments to slow down and recharge. Such a strange time for everyone navigating this new ‘Phoney Normal’. We are incredibly grateful to the people who we have around us who are working exceptionally hard to create a space where our children can engage with others, be creative and feel safe. It’s such a relief.

Today Thomas got to be back in the saddle for the first time in 5 months!!!! I am not sure who was more excited. Seeing him so open, so confident and so steady after so much time away was incredibly emotional for me. We are so lucky and so blessed to have people like India in our lives. People who love what they do and go to extraordinary lengths to help our children soar.

Tonight I am going to bed full of hopes and dreams. Tonight I am going to bed feeling that things are going to be ok.

Thank you India.
Thank you RDA Abingdon.

 

Thanks to the heroic efforts of the volunteers who are RDA ABINGDON, Thomas got to reconnect and with Mr Brown and Candy today. Riding will still have to wait until it is safe to have assistance mounting and dismounting etc etc but that didn’t matter today. Today Thomas got to go back to a place where he feels happy and safe and seen. And he glowed. We all did.

#livingmeaningfullives
#volunteering
#RDA

 

12 weeks in to lockdown and we are holding on in there. Whilst the boys are missing school and all the wonderful activities and people that filled their days, they are happy and well. Thomas is enjoying helping out with daily chores and is always looking at ways he can become more independent. He now lays the table for dinner and takes his own splints off when wanting to go on the trampoline. He has become obsessed with Lego like his brother and is completing sets independently.

We enjoy going out on our bikes and try to be active as much as possible in order to keep his muscles strong. Hopefully formal 1:1 physio can resume soon!!!

There is much to be grateful for at a time when things feel so very surreal.

Love and Peace to you all.

We are just back from two superb days at Brainwave, a specialist centre in Somerset that Thomas has visited annually since just after his CP diagnosis. Their wide-ranging expertise, advice and support were invaluable then, and again after his operation to help us understand how that had changed what he’s capable of.

Yet again, they have provided us with some amazing insights into what our little boy can do. And he himself was brilliant at meeting the demands of two days of being asked to do lots of difficult things.

Of course we get lots of input from elsewhere – physiotherapists for physio, Swim Lab for swimming, LOC for walking skills. But Brainwave really does bring all these things together for us. They also discussed their views on longer-term goals for Thomas, and their experience of how children continue to develop after SDR, not just for 3 years, but even after that too.

Overall, the therapists were very impressed at how Thomas had progressed since our last trip a year ago. And by having the two days there, it really allows for a considered program to be recommended for Thomas to continue his progress.

Some of it seems simple, and small, but it’s really targeted. Like some fresh ideas on how to do hamstring stretches. Doesn’t seem much, but as the old Team Sky cycling team used to say, if you implement enough tiny changes, it adds up to a lot. “Marginal gains.”

All in all, a successful trip. Dylan even got to see a dragon.

We are just back from two superb days at Brainwave, a specialist centre in Somerset that Thomas has visited annually since just after his CP diagnosis. Their wide-ranging expertise, advice and support were invaluable then, and again after his operation to help us understand how that had changed what he’s capable of.

Yet again, they have provided us with some amazing insights into what our little boy can do. And he himself was brilliant at meeting the demands of two days of being asked to do lots of difficult things.

Of course we get lots of input from elsewhere – physiotherapists for physio, Swim Lab for swimming, LOC for walking skills. But Brainwave really does bring all these things together for us. They also discussed their views on longer-term goals for Thomas, and their experience of how children continue to develop after SDR, not just for 3 years, but even after that too.

Overall, the therapists were very impressed at how Thomas had progressed since our last trip a year ago. And by having the two days there, it really allows for a considered program to be recommended for Thomas to continue his progress.

Some of it seems simple, and small, but it’s really targeted. Like some fresh ideas on how to do hamstring stretches. Doesn’t seem much, but as the old Team Sky cycling team used to say, if you implement enough tiny changes, it adds up to a lot. “Marginal gains.”

All in all, a successful trip. Dylan even got to see a dragon.