Tag Archives: Stagecoach

Birthdays, exams and an awards ceremony too

The last 10 days have been busy ones and I for one am glad to be heading into the last week of term, though the dawning of the school holidays definitely does not equate to any time off work for me this year. Looking back at my blog posts from previous years, it does appear that March and April are consistently a hectic time for us and this year was no different. World Book Day passed surprisingly easy, with M heading to school in his own clothes for his school’s Roald Dahl-themed day as he chose to represent “…a material witness at the trial of Goldilocks, Mummy…” in Dahl’s version of that well-loved Fairy tale.

We seamlessly segued from my 40th celebrations to M’s 11th birthday and onto my 4th blogaversary before celebrating Mother’s Day in fine style too. School presented its own challenges to both G and M, with homework tasks, concert rehearsals and posters revising the finer details of grammar and punctuation – fronted adverbials anyone? – filling our evenings and weekends. Next came 2 sets of exams: Performing Arts exams for both children with their Stagecoach school, followed just a few days later by M’s Grade 1 Cello exam, which I’m delighted to say he passed despite a persistent reluctance to give much more than a cursory nod to his daily practice. Continuing with the music theme, G performed with the school clarinet group at her school’s Spring music concert last week, whilst M is singing with his school choir at a regional music concert involving children from Junior schools across our county this week.

On top of all of that, we also managed to squeeze in a trip to London for 4 and an evening spent celebrating the success stories from this year’s FreeFrom Food Awards. Once again held at the Royal College of Physicians near Regent’s Park, the evening was a glittering event designed to recognise some of the fantastic freefrom products nominated this year and was a great opportunity to not only catch-up with friends from the allergy blogging world, but also try those tasty treats that had pipped their competitors to the winning post. Hosted by the fabulous Michelle Berriedale-Johnson, director of the FreeFrom Food Awards, with a helping hand from restaurateur, celebrity chef and awards patron, Antony Worrall-Thompson, the Awards were a real testament to the changes brought about in the Freefrom world over the last few years.

The complete list of winners from #FFFA17 can be found here, but the big winners of the night were Irish bakers, Bfree, whose Sweet Potato Wraps are impressively top 14 allergen free and won high praise from many of the judges for being “…enormously versatile, beautifully soft and pliable, a lovely warm colour and tasting delicious…” This year was the 10th anniversary of the FFFA and to acknowledge this remarkable achievement, nominations had been invited to recognise a Freefrom Super Hero from within the industry itself. There were 5 very worthy nominees, all of whom are, without a doubt, heroes within the Freefrom world, but there could only be one winner and the inspirational Clare Marriage of Doves Farm was chosen for her unquestionable dedication to the production of numerous flour blends that have transformed the lives of those having to bake freefrom.

It was a fantastic night and it was wonderful to be able to mingle with the crowds of fellow freefrom foodies, rather than negotiate them with a small child in a wheelchair as we did last year! G not only enjoyed helping herself to a number of the goodies on offer on the Winners’ Buffet, finding a new gluten-free favourite with Kelkin’s chocolate-flavoured teacakes, but also found the courage to strike up a brief conversation with her very own Super Hero, Lucinda Bruce-Gardyne, the creator of G’s gluten-free bread of choice, Genius. I can’t wait to see what the year ahead brings for the Freefrom industry and am definitely looking forward to #FFFA18!

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!

Limping towards the Finish line

bucket listDo you remember that long, long list of things that I was facing at the beginning of March? With the month-end in sight, I am, quite literally, limping towards the finish line, just thankful that the long Easter weekend ahead means the opportunity for some much-needed lie-ins and down-time; but how did March go in then end?

World book day and required costume x 1 – M decided on what can only be described as something of a left-field choice for your average 9 year-old and dressed up as Ford Prefect from Douglas Adams’ well-loved trilogy of 5 books, “The Hitchhiker’s Guide to the Galaxy“. It was one of the easiest costumes he’s ever asked me to make and to our delight, he won a £5 book token for the best WBD costume in his class.'Oh yes we're very proud of him. He's in publishing you know!'

Parents evenings x 2 – Both evenings went extremely well and we are so proud of the strides both children have made during this school year. M has been working hard at beating the challenges of his dyslexia and dyspraxia and is developing some beautiful handwriting when he remembers to try. G has settled well into Year 7 and was described to me as a “conscientious, hard-working, empathetic and focused” member of her tutor group. I was delighted to hear that her confidence has grown throughout the year and that she is developing into a well-respected and natural leader amongst her peers too.

School book fairs x 2 – Attended and books bought.

M-friendly croissants – Recipe adapted, croissants baked and hugely enjoyed as part of the school’s French role-play activity. I achieved above and beyond what I thought was possible with so little notice.

Mothers Day – We enjoyed a quiet day together, although sadly my Mum was unwell and not able to come out for lunch with us. We ate at one of our favourite M-friendly restaurants and were once again impressed by the phenomenal memory of the restaurant manager and the care awarded to both children by all the staff. Well done Wagamama!

Riding lessons – G continues to ride every other weekend and her passion for this hobby is growing. Her latest lesson saw her not only trotting and cantering with confidence, but beginning some preparatory steps to get her ready for jumping – scary stuff but she’s loving every moment.

A 10th birthday and a class assembly – These happened on the same day and were both celebrated in style. It’s hard to believe that my little bean has reached the end of his first decade and I can’t begin to imagine what the next one will hold.IMG_1765

Birthday celebrations – M chose a reptile-themed birthday party and I braved holding a tarantula to help encourage G to beat her fears and do it herself. We combined the day into a double celebration and headed out to a local trampoline park in the afternoon with a couple of friends for a belated marking of G’s 12th birthday too.

Dentist and hair appointments – These both happened as planned and really there’s not much more to say.

GOSH appointment – Mike, M and I headed to London for our first appointment at GOSH since the disastrous admission last December. We weren’t quite sure what to expect, not least because the gastro department is currently in a state of great upheaval. M is doing well, even though we haven’t managed to introduce any more foods safely into his diet since last summer and continues to impress us all by drinking the 400mls of E028 necessary to supplement his limited repertoire of food. His weight has dropped on the centile charts and will need some careful monitoring over the next few months as we continue to search for some more safe foods for him. There is, at long last, a chance of some shared care between GOSH and our local gastro team, which would add some much-needed local level support for our family and the next step is really to wait and see when and if that happens.

School play – Thankfully M’s role as Poseidon meant that I could re-use his toga from Stagecoach last year, so that was one costume crisis off my hands. He was only able to take part in one performance as the matinée was on the same day as his GOSH appointment and unfortunately I wasn’t able to see his evening performance as it clashed with G’s parents evening. However, Mike and G went to watch and told me it was great fun and he did really well.

Performing Arts Exams x 2 – Taken by one very-tired G and one determined-to-do-well M. We won’t know just how well they’ve done until mid-April, but I’m told that they both worked hard and performed well on the day. Having watched their performances the week before, I can’t wait to see if all their efforts paid off and are reflected in their marks.index

Spa day – This was a late birthday celebration, a treat that Mike had sorted out for me and my dear friend, and M’s godmother, L. We had a lovely afternoon being pampered, drinking coffee and chatting without interruption by small people, before enjoying a delicious dinner and a few bubbles to mark the day.

Events linked to school topics – This term M’s topic has been India and part of the school experience was to share an Indian meal from a local restaurant. Thanks to previous experience from G’s time in Year 5, I had been anticipating this one for months and a few mini trials of herbs and spices meant that I’ve been able to create a curry-esque meal that’s suitable for M. A mix of cumin, coriander, ginger and rosemary combined with our new discovery of rice cream created the sauce for his staples of chicken and rice. It might not be an authentic dish, but he loves it and it’s meant that he has been able to join in a meal with the rest of his class.

Preparations for G’s sibling camp – I haven’t quite started on this one, but the weekend’s going to be busy as G goes off to camp on Monday. She’s been looking at the list of things she needs and chatting to a friend via e-mail as she prepares for a week filled with fun and activities away from the hustle and bustle of home. She also went to her first Young Carers meeting this week and seemed to settle in really well. There are some other girls the same age as G, including one from her school, who have just started too and she’s looking forward to an afternoon at a local trampoline park during the Easter holidays. Watch this space for more of an update once she’s back and has shared all the news with me!

Easter – Preparations are sorted, food trials are planned, eggs have been bought and I’m looking forward to a peaceful family weekend at home.

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Happy Easter!

 

There are no strangers…

“There are no strangers, only friends you haven’t yet met”

W.B.Yeats

Like most people, I have collected a variety of friends over the last 30+ years, picking them up as I’ve ventured down the various paths my life has taken me. Those friends I’m still in touch with these days span the years: from those I met in the playground and classroom during my first decade to those I survived my angst-ridden teen years with; from the few that are still hanging around following university and my accountancy training to finally that group of “Mummy” friends made since we first found out we were expecting G. In the last 5 years, my friendship group has grown massively as I’ve added to the mix those who are travelling alongside us in our current journey; the fellow EGID Mums and GOSH parents we’ve been privileged to get to know in some of the most challenging of times. These are individuals who really understand the daily struggles and ongoing battles that we survive and are always there to lend a shoulder to cry on or offer words of encouragement or advice when no-one else can. What makes these friends so special is that, in many cases, I’ve never actually met them face-to-face, thanks to the rise of the internet and social media, and yet they are unquestionably available whenever they are most needed.friendship-childhood-1024x769

During M’s recent GOSH admission, we received some amazing demonstrations of support and love from my friends, more than I could ever have expected, and which ensured I never felt on my own. Almost every day I received a message via text or e-mail or FB asking how things were going, sharing news from home and sending love, thoughts and prayers to both M and me. Sometimes those messages would become a conversation and sometimes they simply stood on their own as a reminder that other people were thinking of us. Cards and presents were sent to cheer us both and M’s class wrote their own messages to him, keeping him in touch with all that was happening in school.

We were lucky to receive visits from a couple of good friends: one who we met through FABED and the other from a Mum I met on Rainforest ward during our 2014 stay. These visits really brightened up the long days in hospital and I hope our visitors understand just how much their time meant to us both. Much to M’s disappointment, a couple of other planned visits didn’t happen due to our inability to leave the ward due to Klean-prep, last-minute appointment cancellations and at least one epic failure by me and the other Mum to successfully liaise where we were and when; but most importantly, the thought was there. We also got to meet 2 of shhh-gin-and-tonic-in-disguise-mug-p2968-4246_imagethose “virtual” friends from on-line support groups, who during the length of our admission were also admitted to GOSH. The ability to finally put faces to names, with a reasonably comprehensive background knowledge already in place and be able to spend time chatting, laughing, drinking tea and commiserating was priceless.

One of my highlights was the opportunity to reconnect with an old FABED friend and fellow blogger, Annie, one afternoon. Her son, R, had been at GOSH for tests that week, but had been staying at the patient hotel with his Dad. On this afternoon, they had been sent up to Rainforest ward for a final meeting before going back home and were given the bed across from M. Whilst Annie, her husband and I chatted away, catching up on news from the last 9 months, M and R renewed a previously fleeting friendship and spent time talking, constructing vehicles, discussing bearded dragons, watching TV and generally just spent time chilling out together.

The most truly astounding show of support came from another Mum that I’ve never met in real life and definitely wouldn’t know if I bumped into her on the street. She is based in London and has a friend who works as one of the visiting art teachers at the GOSH hospital school. Upon hearing that M was confined to the hospital buildings and that I had little time to get out and enjoy much more than quick foods for my meals, she thoughtfully prepared some home-cooked meals that she tailored for my dietary preferences, packaged securely for storage in the ward kitchen and sent in with her friend. These meals could be easily heated in the microwave and were a real treat after days of utterly uninspiring sandwiches and ready meals. As well as this bag of goodies for me including some much appreciated fresh fruit and biscuits, she also tucked in board games and some hand-made get well cards for M.Picture2

And it wasn’t just the support in hospital that made the difference: there were people keeping the home fires burning on my behalf too. Both schools kept in touch, asking for updates, talking to G to find out how she was coping with it all and keeping me informed of arrangements for the end of that term and the start of the next. Their Stagecoach principal e-mailed through a suggested directing project linked to the new term’s theme, which would provide some much-needed distraction whilst he was confined to his bed and sent text messages to ask how things were progressing, when we were coming home and wishing us a peaceful Christmas. Finally, thanks to the Mum of G’s best friend, N, Mike could keep those work commitments that he simply couldn’t rearrange as she kindly opened her house to G both before and after school to ensure she was looked after and cared for at all times too.

Just one more dress-up challenge!

20150301_144602These past 2 weeks have been filled with one dress-up day after another for our household. Of course, it all started with the Cluedo party we held to celebrate G and M’s birthdays, where we invited guests to come in optional fancy-dress to match their character if they wanted.  The key word was “optional” as I was well aware that not all of M’s friends are as big a fan of fancy-dress as M is, but we were impressed with the range of costumes that arrived on that Sunday afternoon.  We had “Reverend Green” sporting a dog collar and a striking pair of bottle-green jeans; “Earl Grey” in pinstriped waistcoat, bowler hat and monocle and “Admiral Azure” had a home-made pair of epaulettes that would cause envy in the heart of any member of the armed forces.  Not to be outdone by the costumes of the boys, many of G’s friends joined in, wearing dresses to reflect the glamour of “Mrs Peacock”, “Mrs White” and “Lady Lilac”.  Dress-up challenge #1 – done.

20150305_083738Just a few days later came the first of our dress-up days at school, World Book Day.  Refusing to give in to M’s demands for a custom-made costume this year, I instead insisted he wore the army captain’s costume that we had bought for his representation as “Captain Emerald” at their birthday party and suggested he went as “Captain Nicholls” from Warhorse by Michael Morpugo.  We have recently enjoyed the stage production of Warhorse whilst it was on tour around the UK and M had bought himself the book for his admission to GOSH before Christmas, so he leapt at this chance, though in typical M style, he chose to be the lesser-known “Major Stewart” because he “got to ride Topthorn and not Joey, Mummy.”  G also wore a costume she had in her wardrobe and despite dicing with the idea of being “Dorothy” (Wizard of Oz) for the 3rd year in a row, ended up going as the “Princess” from Aladdin, wearing the Disney outfit from our Florida holiday last year.  Dress-up challenge #2 – tick.

20150306_154905The day after World Book Day, M had his Roman “Wow” day at school, requiring, naturally, a Roman costume.  He had originally toyed with the idea of going as a Celtic slave, but when the morning dawned, he had a change of heart and out came my trusty needle and thread, one of Mike’s white t-shirts, G’s plaited belt, M’s old white karate trousers and one of my red pashminas.  Less than 30 minutes later, our very own Roman-esque citizen made his way up to school – not bad for a quick Google search and 15 minutes of hurried sewing!  Dress-up challenge #3 – survived by the skin of our teeth!

 

20150311_210916I had a quick breather over the weekend, which was time enough to celebrate M’s 9th birthday itself and to gather the necessary base materials and trimmings for the next fancy dress requirement – a Greek toga each for the end-of-term Stagecoach performance.  Fortunately we were provided with a set of instructions on how to make a simple toga and G had acted as a model during Stagecoach a couple of weeks ago, so I had already had a sneak preview of how to put the costume together.  The togas themselves were simple enough to make, but then came the lengthy task of adding trim to suit the needs of my demanding duo and the trickier job of making the togas fit.  It might have taken a (very) late night, but the end result was fantastic and I can’t wait to see them perform on stage at the end of March wearing these masterpieces.  Dress-up challenge #4 – future success.

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And so it’s on to just one more dress-up challenge as tomorrow is Comic Relief and the challenge to “Make your face funny for money”.  The costume is the easiest part of the day as they just need to wear their own clothes to school, but the challenge will come early tomorrow morning, when we need to be up at the crack of dawn to give me time to face paint them both.  G wants a tiger and lion on her cheeks, so we’re going to cheat slightly by using M’s tiger feeding friend stickers on one cheek.  I’ve promised her a lion’s face on the other side as long as she’s happy with a cartoon style decoration.  If we have time, I’ll also do her hair in a funky style and, fingers crossed, both will last her throughout the school day and tomorrow evening’s Stagecoach session.

Courtesy of blog.partydelights.co.uk

Courtesy of blog.partydelights.co.uk

M’s face will take a little more work, but I wanted to do something a little different to his tube for the day.  The plan is to cover his tube with both the tegaderm dressing and then a layer of safe micropore before I get to work with the face-paints.  We’ve agreed on a snake design, which will hopefully see me camouflaging his tube as the snake’s tail as it winds around the back of his head, with the snake’s head, complete with sticking-out tongue, appears on the opposite side.  Whether it will work or not, we will just have to wait and see, but I promise a photo if all goes well!  Dress-up challenge #5 – still to be decided.

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.

A Decade of Parenting

By the time this week is over, Mike and I will have completed our first decade of parenting.  I hadn’t really thought of it in those terms until G came home from school a couple of months back and announced proudly that she would be turning a decade old this year.  Now that I have realised the truth in her statement, it seems like an amazing feat and, oh my goodness, hasn’t that time just flown by?

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We’ve learnt so many things over the last 10 years, most of which are lessons all new parents discover sooner or later.  The most important one for me, I think, is that we have made many mistakes along the way and are likely to continue to make them despite our best efforts not to.  The best I can hope for is that there are no lasting scars being left on either G or M.  Equally inevitable is the fact that we’ve made the majority of those mistakes with G as by the time we got round to dealing with M, we had a better sense of the direction we wanted our parenting skills to take us.

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The last 10 years with G have been an absolute delight, albeit there’s been the odd moment of stress or anxiety or frustration thrown our way.  We’ve watched our baby girl (oh how she hates me calling her that!) grow into a young lady who is beautiful both inside and out.  She is kind-hearted, generous, patient and loving, most of the time, although she has her moments of obstinate refusal, which I prefer to call “knowing her own mind”.  She is keen to please and hates to see her friends upset or disappointed and yet is fast learning to stick to her guns and will no longer pander to the whims of those surrounding her.

She loves him enough to share her blanket!

She loves him enough to share her blanket!

G has become a wonderful big sister to M and whilst tney might squabble and fight at home, she always has his back in the outside world.  Living with M is hard and sometimes the pressures on G are immense.  His constant battle with ill-health means that G often has to take the backseat in our priorities.  As is frequently the case, the healthier siblings of sick children can easily become lost in the chaos that is the illness, appointments and hospital visits and we work hard daily to ensure that G’s individual needs are met and that she feels that she gets the time and attention she deserves.  M might be her annoying little brother, but she worries about him whenever we have to travel to appointments and waits anxiously until we’re back home again.  The bond between my children is irrefutable and one that I hope will continue to grow and strengthen over time. DSC01674

G is bright, articulate, funny and able to achieve so much, although the one thing that continues to hold her back in her lack of self-belief.  Last week, G received her green award for 6 years continual attendance at Stagecoach.  We started her at 4, partly to satisfy my own love for the performing arts and partly in the hope that she would develop and build her confidence through the weekly classes.  G has grown incredibly as a performer during her time there and in the past 12 months has amazed us with a willingness to sing solos as part of two Stagecoach concerts as well as play a clarinet solo at school.  These are things she would have actively shied away from in the past and it’s been a real pleasure to see her become so keen to be involved.  As we read through her end-of-term report together, I was impressed with G’s maturity as she quickly identified that all 4 teachers were saying the same thing – that she needs to develop confidence in her own abilities as she has the potential to go far.  I’m excited to see just how she will tackle this new challenge in the year ahead.

8 years on and she's still our Queen of Hearts

8 years on – she’s still our Queen of Hearts

So, as we head into our second parenting decade, there’s not much more to say.  As may have become quite apparent, we are incredibly proud of G and all she’s acheived and survived so far.  All I can add is:

“Happy 10th birthday Floss – we love you very, very much”