Tag Archives: music

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!

A day in the life of my tube-fed child

Ever wondered how having a tube impacts on everyday life?  Here’s a little insight into a typical day in the life of my tube-fed child:

20150212_0801256am – 8am –  Whilst we try to leave M sleeping as late as possible, our day starts much earlier.  Mike’s alarm sounds at 6am and then follows a perfectly honed routine of taking M’s 1000mls feed out of the fridge, warming it in a bowl of boiling water, aspirating his tube (hopefully with as few interventions as possible), fitting the bottle, feeding kit and pump together and then starting the feed itself at as close to 6.30am as can be managed.  Allowing M to continue to snooze for another hour or so, with his pump fully supported and protected in his bed and the tube taped securely to his back to avoid accidents, is necessary for all our sanity, not least because he still hasn’t mastered falling asleep much before 11pm each night.  Once M’s feed is started, it’s the turn of the rest of us to get up and make sure we’re washed, dressed and eating breakfast before I wake M at 8am.

20150212_0820488am – 8.30am – This 30-minutes window is dedicated to M – getting him up, washed and into his school uniform, whilst negotiating his tube and the pump without too much interruption to the feed going in.  M is evidently a natural contortionist and has not only worked out how to thread his pump and tube through the neck of his clothes whilst still attached, but also how to do it the right way round – no mean feat for a child with dyspraxia and a challenge that has been known to flummox this Mummy more than once.  However, on school mornings I take the easier option of stopping his pump for 5 minutes and disconnecting his tube to allow him freedom of movement and giving me time to put the pump-stand securely into his back-pack.

20150212_0823258.30am – 9.30am – Pump attached and back-pack secured ready for school, we head out of the door and race off to meet up with the walking bus to get G and M to school on time.  Depending on the day, we have to make sure we have the correct selection of bags and other extraneous items with us – school bag, packed lunch for G, water bottles for both, cello or clarinet plus music, PE kits, swimming bag, my packed lunch, my “M” bag (containing spare NG-tube, spare feeding kits, pH strips, 60mls syringe, cooled water for the flush, spare tape and his lunch-time medicine), the 500mls feed for the days when my Mum picks up from school, handbag, office keys, house keys and car keys; oh and mobile phone, mustn’t forget the all important mobile phone!  Once at school, G and M go their separate ways with their friends, I pass on any useful information to key members of staff and then head off back to my car for the 5-minute commute to my office.

9.30am – 1.30pm – Fingers crossed this 4-hour slot should be a quiet one.  Whilst I’m busy working away in my office and partaking in the occasional cup of tea, M is enjoying a morning at school with his backpack firmly attached to his back at all times.  We’ve worked with the school to make some adaptations to allow him to participate fully in all lessons and he’s finally garnered the confidence to run around with his friends at play-time.  He will sometimes request a break from the pump if his tummy starts to ache and the school have been trained to know how to switch his feeds and the pump on and off.  This 1000mls feed takes nearly 7 hours to give and so I head back up to school for the end of lunchtime play to switch the feed off, disconnect M from the pump and flush his NGT through.  The last few weeks I have been working alongside 4 members of staff, who are now fully trained and proficient in M’s needs and they will be taking this role on fully after half-term, meaning less disruption to my working day.  Pump and backpack abandoned and medicines administered, M now has the rest of the school-day “pump-free” and I head back to my office.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

3.30pm – End of school and on to the next part of our day.  On the days when G and M go back to my Mum’s house after school, she first drops M at my office, where I reconnect him to the pump and the 500mls feed begins before I send them on their way and carry on with my work.

4pm – 5pm – If I’ve been the one to meet them at the school gates, then this signifies the busiest part of my day so far.  We start with music practice for both children before they’re allowed to even consider asking for time to play on their tablets or to watch TV.  As the gentle strains of music float down the stairs to the kitchen, I’m busy prepping everything for the hour ahead.  I take the 500mls bottle out of the fridge and start heating it up, ready for a 4.30pm start time.  I boil the kettle to make the feeds for the next day, running between kitchen and dining room to gather up all the necessary sterile medical supplies from the stockpile we have hidden in there.

Courtesy of shutterstock.com

Courtesy of shutterstock.com

I prepare the 2 mixes of medicine for M to take the following day and store both those and the feeds on the top shelf of the fridge.  In between the kettle boiling and the feeds being made, I will hopefully have managed to check M’s NGT placement and will get the feed started on time.  Next it’s on to making packed lunches for G and me for the next day, alongside prepping dinner for G and almost inevitably dealing with the requests for a drink, a snack and tablet time from both children.  If I’m lucky, I’ll also have managed to wash the syringes and medicine pots, washed the empty feed bottles for the recycling, pulled out G and M’s homework books and might even have had time to take my work shoes off and pull my slipper boots on!

Midnight music practice is the way to go!

Midnight music practice is the way to go!

5pm – Bedtime! – The rest of the evening is spent convincing M and G to do homework, hearing them read, monitoring their screen time, peace-keeping, deciding on dinner for Mike and me and any one of a million other tasks that parents across the world are having to complete on a school night.  Friday nights include a 3-hour stint at Stagecoach for G, M and currently for me too as I need to be on hand to tape down his NGT for dance, attach him to his pump during singing and drama and just generally monitor that nothing goes wrong whilst he’s there.  Twice a week that list includes choir rehearsals for me as well as the monthly PTA meetings and the not-so-regular book club meetings I enjoy (assuming I’ve found time to read the book!).  We start the bedtime routine at around 7.30pm and insist that lights are out for G by 9pm.  M then spends the next few hours until somewhere around 11pm reading books, playing his cello, composing music on his ukulele, playing games and listening to music.  He will finally go to sleep once I’m upstairs and going to bed myself and, if Mike is lucky and times it perfectly, by the time he’s put M’s pump on to charge, tidied up the kitchen, put the cats out, set the alarm and come up himself, M will be fast asleep alongside me and it’s a simple case of moving him back to his own bed.  On a good night, we might then get 6 hours of uninterrupted sleep until our day starts all over again.

Musical interlude

Music expresses that which cannot be put into words and that which cannot remain silent

                                                                                                                             – Victor Hugo   

Everybody needs a release for the stresses and strains of day-to-day living.  For some it may be sitting down in front of the television with a large glass of something cold, for others it could be something more active to challenge the body to see just what they can achieve.  For me, there are three things guaranteed to lighten my load:  a good book; a successful bake; and music.

piano

For as long as I can remember, music has been a huge part of my life.  When I was growing up, my parents always said they knew when I was finding life tough because the music would slowly disappear from my daily routine.  I would no longer sit at the piano and sing, until eventually that dark cloud would pass and I could let the music back in.  It is amazing to me how certain songs or tunes can evoke powerful memories and the emotions come rushing back.

clarient These days, whilst the piano sits proudly in our sitting room as an important member of our family that I cannot imagine being without, I rarely find the time to bash out a tune or two.  All too often, I find myself surrounded by small children who want to play alongside me, but who don’t have the patience to allow Mummy to teach them the basics.  However, despite a certain reluctance to put in much practice at home, both G and M have chosen celloto learn instruments to play.  We were recently treated to the school summer music concert, which saw both children playing solo pieces, though I’d be hard-pressed to say who had the greater look of concentration on their face – G with her clarinet or M with his cello.

I am delighted that both G and M love to have music in their lives, a fact that I like to attribute to my incessant playing of specially selected compilation albums during both of my pregnancies.  They both listen to CDs at night to help them settle to sleep and we almost always have a CD playing in the car, even for the shortest of journeys.  I maintain that there is a song for every occasion and have been known to coax M out of the darkest of moods by my rendition of any song that springs to mind, often with a slight change to the lyrics to suit the situation.

My biggest musical passion is, and always has been, singing.  Over the years I have had the opportunity and privilege to sing with some wonderfully talented musicians, from my competition-winning school choir to the history-making Cathedral choir and many more along the way.  I have sung with women-only choirs as well as mixed voices and have had the heady experience of performing on my own in addition to singing with groups that have varied in size from less than 10 to over 200.

choir

My current choir is a wonderful group of anywhere between 10 and 20 ladies, who meet weekly to share our love of music.  Each Tuesday I abandon Mike and the children for an hour’s worth of music, laughter and the most amazing friendships I could imagine.  This group of ladies bring a smile to my face without fail and this week’s rehearsal found me giggling so hard that I couldn’t get any semblance of a note out of my mouth.  I was transported away from the week’s dramas with M and instead could just enjoy some time without that pressure overwhelming me.  No matter what the song, we have a great time and it’s been a pleasure to see the choir grow over the last couple of years.  Sometimes the lyrics of the songs really strike a chord and help me express something I had no idea how else to explain.  At our recent concert, one of the other choirs performing sang the song “There’s a hero” by Billy Gilman which really spoke to me of our journey with M and how I feel about our family.  If you don’t know this song, you can listen to it here.

 

 

Our Girl done good!

I’m delighted to say that we found out today that G passed her Grade 1 Clarinet exam with flying colours.  Despite nerves and a few last minute panic-stricken tears, she performed well and though she would have liked to do better, I’m proud that she did so well on her first attempt.

Well done G!