Reconnecting one step at a time

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

 

Silver linings of lockdown

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.

Back to Brainwave

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.

Back to Brainwave

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.

Swimlab International – Belfast

Day 1 of Swimlab International in Belfast and look at him!

Thomas and Brian flew out yesterday to attend an intensive block of swimming with Paulo Swimlab Webb and his colleague Emily and the connection was instant.

We are two years Post SDR now and Thomas, understandably, is beginning to tire of relentless hours of physio. He is wanting and needing to feel more freedom so we are hoping (and praying) the pool may offer him this opportunity.

It’s hard not being there to support him and ask lots and lots of questions but daddy has got this and it means I get to spend quality time with my other gorgeous boy.

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Footsteps

Another 10 hours of physio this week for this CP warrior. No complaining, no drama, just pure grit and determination. Let’s hope the Bristol team can see how much he has progressed on Tuesday when we go for our 2 year Post- SDR review.