Tag Archives: dance

Carnival Magic

Never being one to let something get in my way, I’ve tried to instill that same determination to succeed in both G and M. This time last year was the perfect example of this, when M took part in our local carnival parade, albeit in his wheelchair, and G stretched her self-confidence to become one of the dance captains leading their Stagecoach school as they danced their way along the carnival route. Kitted out in their 70s-inspired costumes, with the likes of Tragedy, Night Fever and Disco Inferno blaring out to get not just the kids, but all the spectators dancing too, they definitely captured an essence of Rio de Janeiro on the day.

This year we were back again, though our carnival offering really couldn’t have been more different to the party atmosphere of 2016. G and M were both keen to be a part of our church’s carnival float and relished the opportunity to choose the characters they wanted to portray from that classic fairy tale, Beauty and the Beast. With her long dark hair, G was perfectly suited to playing the part of “Belle” and suited the yellow costume I managed to pull together in the 10 days leading up to the event itself. M in the meantime, conspired with his best friend at church and agreed that he would play “Lumière“, whilst C would be “Cogsworth“. M’s final outfit certainly did the job, though the glorious June sunshine made for one very hot and slightly grumpy child once the parade was over. The carnival float itself looked amazing and the children loved being able to sing along, dance and wave to everyone as it carried them down the street. I love being part of such a fantastic local tradition and can’t wait to see what next year brings for yet another repeat performance.

All the Fun of the Fair

There’s no doubt that the weeks since April have dragged past at snail’s pace for a certain young man and his broken leg. 10 weeks into having that leg encased in plaster, and all of M’s hopes were pinned on the sarmiento cast finally being removed and allowing what must now be a skinny, white limb see some summer sun and fresh air. Unfortunately, the last fracture clinic appointment did not go according to M’s plan and the x-rays showed that the bone regrowth had slowed down and was not at the level the orthopaedic consultants were expecting it to be after over 2 months in a cast. The news that he has to survive another 3 weeks of limited mobility was not well-received and, having seen him stoically accept the verdict before crumbling once we left the unit, it was a massively disappointed and heartbroken little boy Mike and I had to take back home. The next 30 hours or so saw him at a lower point than we’ve experienced for a long time and it was only thanks to his sense of commitment and phenomenal strength to keep fighting the fight that we managed to convince him to go to his school’s summer music concert that evening, where he disguised his emotions well and took part on his cello and in the choir with reasonable gusto.

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What we needed was something to cheer him up and fortunately that something was already pencilled in on our calendar for that very weekend. It might not have looked too promising during Stagecoach on the Friday night as M broke down in tears about not being able to dance with everyone else, but thanks to much encouragement and enthusiasm from his big sister as well as a determined spirit that won’t be kept down, by early Saturday morning, things were looking a lot brighter and it looked like we had weathered yet another health storm.

The reason? The song and dance routine that their Stagecoach school were going to be performing as part of our local carnival’s parade and a huge serving of 70s disco to boot. We had always planned for M to be part of the parade in his wheelchair, knowing that the mile and a half long route would be too much for a newly healed leg.

IMG_0502[1]The preceding weeks had been busy with costume preparations and plans to pimp his wheelchair for the event and his decision to ask for a 70s themed cast at the previous fracture clinic meant that we were all set for the parade. Mike and I had also been roped in to help out for the day and I had even managed a few tweaks to our own clothes to make sure we were part of the 70s disco theme. All of the children were fantastic as they sang and danced their way towards the town’s football club and entertained the crowds, who joined in with the familiar moves of “Night Fever” and “Tragedy”. I was particularly proud of G, whose hard work and dedication to her dance saw her selected to be one of the 2 dance captains and she led the group with a flair and sense of fun that I rarely see from her when she’s performing. She really stepped up to the mark and the smile on her face showed just how much she enjoyed it.

And M enjoyed himself too, despite his insistence he wouldn’t. He and I showed off our moves as we grooved our way down the High Street and he waved right and left as friends called out and cheered our group as we went past. Of course the disappointment of not being able to participate as fully as he would have liked was still there, but he was caught up in the excitement of the day and really did enjoy all the fun of the fair!

 

So, how is your leg now?

“Still broken!”

That question has been directed a lot at both M and me over the last couple of weeks and yes, I’m afraid that is the answer we’ve almost flippantly begun to give in reply. As we head into our 8th week of a left leg in plaster, the initial pain and shock that gradually gave way to the novelty of the cast has all but disappeared and we are now well and truly into the “fed-up of it all and ready to move on” stage of his recuperation. M has borne the last 8 weeks with the fortitude and strength of spirit that we have come to expect of our youngest. They haven’t been the easiest, but he continues to persevere at finding the best in any given situation and whilst there has been the inevitable tears of frustration and angst, there have also been moments full of laughter and jokes and M’s unparalleled sense of humour. IMG_0308[1]With hopefully only another 2 weeks or so to go until the leg might finally reappear from underneath the protective plaster, I thought it about time I give you all a proper update.

After 10 days in the plain white, full-length, backslab cast with squishy top, M was upgraded to a lightweight, rock-hard, full-length cast in camouflage just as he had decided on that very first night in our local A&E. Fortunately, the green camouflage plaster ran out after img_03921M’s leg was finished, rather than before, although that day’s orthopaedic technician did offer him the alternative of pink camouflage with sparkles whilst she was checking that stock levels were enough to cover his entire leg. 6 weeks later, and following regular fortnightly fracture clinic appointments with x-rays, the bone growth was considered enough to move M to a sarmiento cast – something we’d never heard of and instantly googled the moment it was first mentioned to us. This cast reaches up over M’s knee at the front, but below it at the back, enabling him to freely bend his leg without allowing it to twist. This is particularly important for M as he has a spiral fracture of his tibia, which needs time to fully heal correctly. Upon hearing his newest cast would need to be in place for at least 4 weeks,IMG_0479[1] M requested a “70s Disco” theme for reasons that will later become clear, and believe me when I say that the bright orange and neon yellow stripes with added silver glitter certainly meets his somewhat unusual brief.

From a medical viewpoint, the fracture is mending well and in the latest set of x-rays we could clearly see the new bone growth that has formed. The latest orthopaedic consultant was fantastic and not only explained what was going on, but pointed it all out on the x-ray for M and me to see too, which meant that we both had a clear understanding of what he was talking about. M’s GOSH consultant and dietician have raised a concern over M’s bone density and health given the severity of this break and his previously broken arm, and have requested that a DEXA scan is carried out at our local hospital to check that all is as it should be. We are very much aware that the delay in reaching a diagnosis, the initial concerns about malabsorption issues during his early years and the subsequent increasing restrictions to his diet could have compromised the levels of both calcium and vitamin D in his bones. Hopefully this scan will reveal the current situation and indicate what additional steps should now be followed to improve his bone health.

Unsurprisingly, the shock of the break on his body caused an unwelcome flare of his EGID at the most inconvenient of times and the combination of flare and his necessary immobility meant that we took some massive steps backwards in terms of his general and bowel health in those first few weeks following the accident. As a result of this, all food challenges have had to be put on hold for the foreseeable future until we can regain the status quo we had worked so hard to achieve in the last few months. Coming so soon after we had finally recovered from the challenges of his December GOSH admission, this has been something of a bitter pill to swallow for us all, but M remains upbeat about the situation and continues to plan his upcoming hit-list of possible food contenders with gusto. This relapse has reminded us of just how precarious the balance is when it comes to M’s health and just how easily he can be tipped into a downwards spiral.

Naturally, the hardest impact of a broken leg has been the inability to move around freely, which for my very active lad has been absolute torture. Progress has been slow, but M has worked hard at each level meaning that he is finally beginning to master the set of crutches he was given when his cast was changed to a sarmiento one. The first 2 or 3 weeks saw M use almost exclusively a wheelchair to get from place to place, something that was only possible thanks to the British Red Cross, who lend wheelchairs on a 6-week basis for a small voluntary donation. This is an invaluable service, especially as the hospital wasn’t able to give us one and it has made going to school so much easier than it might otherwise have been. We quickly introduced a walker – think miniature Zimmer frame – to him too and the ability to use his walker to travel short distances as well as climb up and down stairs was key to his discharge from our local hospital after the break. Once the initial anxiety about re-hurting his leg disappeared, M has adapted to his one-leg status remarkably well and can move at astonishing speeds both on his walker and shuffling along on his bottom when the occasion demands. IMG_0506[1]The crutches have taken longer to adjust to, not least because M now needs to start putting some weight on to his leg, something he has been very reluctant to do. We finally seem to be breaking through that last mental barrier as he builds his confidence by beginning to stand unaided, though his walker is always close on hand should he need it.

Poor M has been forced to miss out on a number of activities as a result of his leg, though whenever possible, we have worked hard to involve him as much as we can. The first and biggest disappointment was that he was unable to act in a touring stage production at a regional theatre, something he loves to do and had been looking forward to for weeks. However, never one to let life get him down for too long, M insisted on going to watch the play instead as some of his friends were also involved and the production company kindly arranged for him to meet some of the other cast members following the performance. He did spend a lot of time talking about what he should have been doing, but his love for the theatre and the strength of his friendships saw him enjoy the afternoon regardless.

He also had to cope with his school’s Health and Fitness Week, where lessons are more or less put on hold whilst a number of visiting instructors as well as the staff introduce each class to a number of new sports activities. M was nominated “class photographer” and enjoyed spending his time cheering his friends on as well as capturing the week on film. His favourite activity turned out to be wheelchair basketball, booked months before but ironically apt for him and he has expressed an interest to training with the wheelchair basketball squad – once his leg is better! The end of that week culminated with school sports day and sadly, despite refusing to let his tube stop him participating last year, M’s leg made it impossible this. However, his fantastic school made sure he didn’t feel left out and he took charge of ringing the bell between events as well as announcing the scores throughout the morning. I am so grateful yet again that we have such an amazing school that has supported us all through the ups and downs of M’s 3 years with them. IMG_0439[1]He has not missed a single day of school due to his broken leg, other than for necessary appointments and that is due to the willingness of the Headteacher and his teaching team to accommodate M’s needs in a safe way and involve him in the classroom as best they can.

Nor has being confined to a wheelchair stopped M’s extra-curricular activities, even if it might have limited them somewhat. He has continued with his weekly cello lessons at school, again thanks to a fantastic music teacher who has worked around his worries and allowed him to either play his cello or hone his oral skills as he has chosen. We experimented at home until we found the most comfortable position for him to be in to practice his instrument and he has been encouraged to take part in the school music concert in a couple of weeks time. As for the “70s disco” theme plaster, this specific request is because he, G and the rest of their IMG_0499[1]Stagecoach school are performing a 70s tribute routine in a local carnival parade in the middle of June. He has once again been to every Stagecoach session this term, and so have I, and knows both the songs and the dance routine by heart, even though dancing it has been an impossibility. There is every chance that his cast may actually be off his leg by the time the parade happens, but we wanted to show wiling and be prepared “just in case”. Given the length of the parade route, M will unfortunately still be restricted to his wheelchair as his leg won’t be strong enough to walk its length, but we have some other suitably funky 70s ideas in mind to pimp both his costume and his wheelchair to fit the party vibe!