It’s been a year since we nervously waited to see how Thomas would fare after his SDR operation. Would he come through such an intrusive operation with no complications? Would it alleviate his spasticity? Would it allow him to make huge leaps in his ability to walk? Did we make the right decision to put him through it? We can now definitely give a “yes” to all of those.
What a year it’s been. Here’s a recap. It feels like he’s made progress almost daily, so there is an amazing amount to say. So grab a cup of tea and sit with us a while.
3 Months On
The operation itself takes a lot of recovering from so, 3 months on, it was great that Thomas was back to his pre-op strength. Without the spasticity, many other abilities were starting to show…
With hamstrings not as tight, sitting with legs outstretched was less painful and hamstring stretches were more bearable. He was also back to trotting on his favourite horse Jasper.
He was walking with tripod sticks to school, able to sit cross-legged on the floor with his friends in class. He had improved balance for standing and walking, and transitions were much smoother – climbing up on the sofa, up the stairs, from floor to high kneeling etc.
His fine motor control (holding a pen etc.) was much better. And with more stamina too, he dropped naps and was managing some full days at school.
Over Christmas, we went to the park on our bikes every day. Before we would have pushed him along on his trike, but he suddenly started doing it all by himself.
And perhaps most amazingly, he was less fearful, and more willing and flexible when meeting new experiences. As his body was less tense, perhaps that allowed his mind some flexibility too.
6 Months On
By this time, his body was really starting to develop. His hip misalignment (a common problem with CP, but anything less than 30 degrees is considered normal) had come down from 32° to 23°. He was starting to develop muscles in his calves too!
With being stronger, he was also happier and more confident. He was walking upstairs using banisters, and could take 140 independent steps in AFOs (large splints), and even 50 steps in his SMOs (small splints).
With this strength, he was also learning to control his body better. He was now able to isolate the kicking movement in water for swimming (left / right front crawl kicks) – and remember before the operation he couldn’t didn’t have this control so mostly bunny-hopped instead of crawling. Throwing, catching and kicking all improved too.
He really started to develop an “I can” attitude around this time too, and in school was cruising in the classroom and using sticks to move around – NO LONGER CRAWLING!!!
And finally, as his fine motor control continued to improve, he started enjoying proper Lego and following the manual to construct small sets. Daddy was especially happy with this!
After 9 Months
As amazing as those first 6 months were, this (9 months on) is a BIG list.
All the daily stretches were paying off, and hamstrings were feeling really good. By now, he was managing 3 full days at school plus 2 half-days (physio in the afternoon of these days).
He was walking small distances independently outdoors, where previously it has only really been in a controlled environment like in physiotherapy. He was venturing outside at playtime to play with school-friends for the first time, and even joining them on the climbing frame. He just wanted to climb – forts, rope ladders, climbing walls in the park…
He started to take some independent steps without the support of his splints (10 independent steps barefoot, and standing unsupported for 25 seconds barefoot). Just overall more coordinated, more stamina, and even more of the ‘Let’s try…’ or ‘ I can do it…’ attitude we’d started to see after 6 months.
He even went on a scooter for the first time, and finally we were officially able to say we’d helped Thomas to DANCE!! The physiotherapists at Footsteps got him to dance (unsupported) to a whole song. For those of you who are fans of The Greatest Showman… “Watching it come true… This [was] the greatest show!!”
He wanted to be more independent, and was bending down to pick up objects from the floor without support. He started cleaning his own teeth, every night for 2 minutes! He was able to pull his own trousers & pants up and down to go to the toilet. It made my head spin just trying to understand how Thomas himself must have felt gaining all these new skills.
There were lots of other little things too. He had stronger feet and toes – and was more aware of them too, playing with them. He was able to stand and play using both hands (baking, feeding the ducks…). He could keep his wrist down properly with a pen grip, so not only was his writing improving, he loved colouring for what seemed hours!
And in terms of being open to new experiences, he started to become more willing to try new foods, like ice-cream for the first time.
And last but not least, a really big milestone – he was able to come off the last medication he’d been on, as we were able to take him off poo medicine.
One Year On
We got a fantastic lightweight wheelchair over the summer. Previously in the much heavier NHS wheelchair, Thomas couldn’t self-propel, but he can in the lightweight one; he loves browsing round shops this way and doing wheelies!
His toileting abilities continue to improve, and now he can go to the toilet all by himself to stand and pee.
He continues to improve in the therapeutic sports he does too. He walked the width of the swimming pool without any aids or support, several times. In horse-riding, he started steering and riding around shapes and obstacles in the riding centre all by himself.
And of course, being 5, he’s growing all the time. But thanks to the surgery, the growth spurts have – so far – passed with no pain!
His openness to new things continues too, and for the first time he had fun just standing on the beach letting waves crash over his feet. We love that he loves that.
So all in all, the past year has been utterly amazing. It’s incredible to think back to that time when Thomas was just starting Reception, and about to have the operation. Starting Year 1, in a much larger building, without the wonderful TA and teacher he’d been with for 2 years, he was relaxed and ready for the challenge. We were still very apprehensive for him, but he has loved the first few days so the sense of relief is once again huge. He’s an amazing little boy.
A Look to the Future
The experts in SDR all say that the first two years post-op are ‘the window of opportunity’. What will this second year bring? Hopefully walking independently in all environments, improving his gait pattern, core strength, hip strength….jumping; dare we say …running- who knows?
There are still challenges ahead of course. The bone structure in his feet is a concern, and likely to need surgery. This won’t be until he is 9 or 10 though, so we’re to put that out of our minds for a while. All we can do is support his ankles as best as we can whilst also allowing his muscles to grow. As Thomas’ surgeon said – he can fix bones, but he can’t grow muscle.
Before the operation, his leg muscles couldn’t even grow naturally, because of the spasticity. Post-op, they can, although daily stretches will still be a critical part of enabling this.
Even though stretches and physio continue, it feels like we’re moving to a new phase. We’ve spent a long time thinking of Thomas as a patient, always thinking of the medical needs. But now we have some space to connect with life. We can’t “fix” Thomas’ CP, but we can let him be a child, let him find his own strengths and interests… That is our priority now: connect, be present and enjoy.
Looking back, going ahead with SDR took a huge amount of courage, but we got it right. It has unlocked his potential. So thank you to everyone for your support and belief. Because of you, we’ve done all we can to give Thomas the best future possible.
Thomas – and Dylan – have defied the odds. Miracle babies born 11 weeks early, weighing the same as a bag of sugar.
Because of them we’ve learnt to keep some room in our hearts for the unimaginable.