SDR procedure now available on the NHS

Thank you again Sophie Grubb for raising awareness of this life-changing surgery and for being genuinely interested in Thomas’ progress. Let’s hope they soon open up the criteria so more children and adults in the U.K. can receive this operation and the necessary post-op physiotherapy.

 

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Happy Birthday NHS!!!!!

We are truly grateful to be supported by a national health service that bought our twin boys safely in to this world 10 weeks early.

We are forever indebted to the dedicated neonatal team at John Radcliffe Hospital, Oxford, who brought them back from the brink and saved their lives on a daily basis until they miraculously reached full term and were finally able to come home.

Happy 70th Birthday NHS. We shall fight for you now like you fought to save our US!

Still smiling…

Week 4 of breaking in new splints and we are up to 3 hours at school thanks to his incredible teaching assistant who is working so hard with Thomas. This heat isn’t making it any easier for him but thanks to her enthusiasm our boy keeps smiling and pushing through.

#Summer2018

A lovely day in the garden enjoying each other and ice cream! I can deal with the boys not liking sweets, desserts even, but ice cream! I managed to convert Dylan last summer and thanks to school Thomas has now discovered this delight. So pleased. I had a moment. #Summer2018

New splints!

Thomas is the proud owner of two new pairs of splints, custom-made for him by the nice people at LOC – the London Orthotic Consultancy. They have a great team of people who work together (a gait expert and an orthotics expert) to create something that hopefully will provide him with the stable base he needs to gain confidence in walking.
At the moment, Thomas’s feet aren’t able to give him a firm, stable base (we won’t to go into the details…). These new splints will allow him to have more stability, develop better posture, and establish a good walking gait pattern, and hopefully even help his feet to strengthen and grow in a way that will allow them to work better for him in future.
Over the 3 meetings we had with the LOC team as part of the process, one thing that really struck home is just how complex a matter it is. Provide Thomas with lots of support and it’s great for his stability and posture, but doesn’t help him build his own strength. Too little support and he can build strength, but risks developing bad postural habits. Even that’s a massive oversimplification, so apologies to the LOC team if I haven’t quite said that right!
We got the splints a week ago to try them out, and were back today to have them fine-tuned. After doing so, Thomas got to have a spin in them. This rope idea is genius, and just see how fast Thomas wants to walk whilst holding it! As he gets accustomed to these new splints, who knows what he’ll be able to do in the coming months. Here’s hoping…
I know we’ve said it before, but without the incredible efforts of all our friends & family with our fundraising, we wouldn’t have been able to do this for Thomas.

Magic moments

Last day of the holidays with no agenda other than to get their hair cut and feed the ducks but then…

just look at him standing there on his own, breaking off bread to feed the ducks without any support!

Half term = Block of physio = Strength = Independence

Magic moments.