Category Archives: School

NEAW 2017 – No man is an island

Sometimes, when you’re stuck in the midst of the relentless demands and emotional turmoil of a chronic illness, it’s difficult to see beyond your immediate reality and nearly impossible to believe that anyone else can even begin to understand how you’re feeling at that moment in time. It is no surprise that the one with the diagnosis often becomes self-centred and self-absorbed as their illness dictates every facet of their life and it can take a long time to really grasp that there are others out there who can empathise because of their own struggles and experiences. It’s all too easy for the focus of family, friends and the outside world to be focused fully on the individual and often the others affected by the diagnosis are left to struggle on their own by the wayside.

Over the years we have worked hard to try to give G the attention she deserves and it’s heartbreaking to realise that there are more times than I care to admit where we have absolutely failed to get that balance right. M’s ill-timed admissions over G’s birthday for 2 years in row were a bitter pill to swallow for us all and nothing could really make up for the disappointment of spending her 12th birthday too many miles apart. Encouraging G’s involvement with our local Young Carers group and the GOSH YPF as well as applying for her to be a part of the Over The Wall siblings camps have all been important steps in recognising the impact that M’s health challenges have had on her over the last 13 years and supporting her to find her own identity that is completely independent from him. It is an ongoing process for us and Mike and I will continue to strive everyday to support G as much as she needs, especially as the emotional roller-coaster of her teen years starts.

Just as our family is affected by M’s EGID diagnosis, so too is the community that surrounds him. I have mentioned so many times the amazing village school that both G and M have attended and everyday am grateful for their unfaltering support. Since M arrived at their gates nearly 4 years ago, they have willingly taken on the responsibility of dealing with a child with complex additional needs, not just medical but educational too. They have allowed both children, and us, to promote NEAW and their continued support with our fundraising efforts has been fantastic. I regularly read about the problems other parents with EGID children are facing in their schools around the UK and I know that we’re incredibly lucky to found this little gem. M has been able to attend school with a feeding tube, a broken leg and an extremely restricted diet and his attendance is remarkable for a child who has been through so much in so short a time. His Year 6 teacher has been fantastic at encouraging him this year when the prospect of SATS has caused him unbelievable anxiety and she has put up with a plethora of emails as I’ve tried to iron out the biggest wrinkles in a stress-filled few months. His classmates have similarly been an irrefutable source of encouragement and his move up to secondary school in September will be eased by their presence in his life.

We do not live in splendid isolation and every action we take has a ripple effect that can stretch out further than we can ever imagine, especially as a child. We are extremely lucky to have a community that works with us to help both children have the childhood that they are entitled to enjoy, one that is all too often marred by the difficult reality of chronic illness. As G and M grow older, my hope is that the realisation slowly dawns that whilst everyone’s life is unique, there are moments that teach us all lessons that can help us reach out to and empathise with others. Going to Over The Wall camps has shown both children that, despite those times when they feel isolated, there are others in the bigger world that do understand what they’re feeling, what they’re living and who can perhaps help them learn to survive even the darkest of emotions; and that when they have survived their own dark place, they can reach out to others who need to be brought back into the sun.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

#NEAW2017

May 8th: No matter what’s going on, there’s no escaping #EGID or leaving it at home, even for one day. For all those facing exams over the coming weeks, their EGID will be just one more challenge that they have to survive.

Today, this is for M – and his schoolmates and the other Year 6s across the country who are taking their SATs this week. We’re so proud of you: of the obstacles you’ve already overcome and your determination to succeed. Just remember, the results really don’t matter.

Thermos-inspired lunches

There are 2 things that are promising to totally transform the look of M’s packed lunches for school in 2017. The first is the reintroduction of parsnips to his diet as I’m finally able to cook a crisp-like addition for his lunchbox, which makes them seem a lot more like those of his friends after a long time of feeling so very different. 9270635_r_z002a_uc1440961The second was thanks to a somewhat last-minute Christmas present from good ol’ Father Christmas, which M is absolutely thrilled with and can’t wait to try out now that the new term has started – an individual thermos flask complete with a folding metal spoon tucked neatly into its top.

He’s been considering the matter at great length and has already come up with a long list of meals that he is keen to try out over the coming months. From pasta dishes including lasagne, to risotto and stir-fry, the options are endless, but today’s maiden meal was new-found favourite, parsnip and apple soup. This simple meal is beautifully easy to make, which is something I’m extremely grateful for now that I’m back to work full-time and every second saved cooking is a second gainfully employed somewhere else. Even better, the range of herbs and spices that I can safely add to M’s meals means that I can img_12781create enough subtle flavour differences to his soups to provide some much-needed variety and keep him engaged in the novelty of his first hot school lunches in a long time.

For the launch of our experimental hot meals at school, I made a spicy apple and parsnip soup and included a few of the Rude Health mini rice crackers that have become an integral part of many of M’s lunch and snack times. Whilst nothing can really compare to the unquestionable delight of dipping some crusty French bread into a bowl of rich, creamy soup, the portion of homemade, and safe, parsnip and apple soup accompanied by a handful of rice crackers was everything that M was longing for it to be and that meant it was a resounding success. Over the coming weeks I’m looking forward to experimenting a little more with texture and flavour and will be looking at replacing the apple with pear as well as changing the herbs added to each bowlful. Most of all, I’m hoping that M continues to be excited about the prospect of enjoying a mix of hot and cold meals during the next few months of the school year.

Looking ahead

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The start of a New Year is always an opportunity to reflect on the things that have passed, but more importantly, to look ahead to the adventures that are yet to come. We had a 2016 filled with as many highs and lows as we’ve faced in previous years and I don’t doubt that 2017 will be equally challenging in ways that are both startlingly similar and scarily new. I’m looking forward to a year that will investigate new possibilities for M’s diet and seek potential answers for what’s going on in his body as well as watching as G tries out new opportunities and starts thinking ahead to the school subjects she wants to study for GCSEs – a conversation that has filled our end-of-holidays walk this afternoon. We don’t know exactly what this year will bring, but it’s always good to look back on everything that has brought us to this place:

A Bento Box Journey

packed lunch

Packed lunches can easily become boring

Have you ever seen a picture of something on-line and be so impressed that you just wish you’d known about it sooner? 18 months ago, a friend and fellow FABED Mum started posting on FB photos of the most incredible Bento boxes that she had been putting together on a daily basis for her daughter’s school packed lunches. Contending with a limited diet as well as other sensory issues, this Mum wanted to create an appealing meal that would encourage her child to eat whilst at school and ensure that she didn’t feel like she was missing out because of her restrictions. On a regular basis, I see updated photos of her most recent creations and I love how she tailors the themes of the boxes to match events at school or in the outside world. I can’t imagine anything better for a child than opening this lunch box at school to discover what food has been included and the theme that has been picked for that day, and I’m sure she must be the envy of many of her friends. To be frank, I’m quite envious as I would love to have these bento boxes for my own lunches too!

 Are you wondering exactly what I mean? Well, take a look at these amazing boxes that have come from N’s kitchen over the last year:

 But why take the time to make your child a bento box meal like these? Without a doubt, a creative lunch may take a little bit of forward planning, but I’m certain that the benefits gained far outweigh the extra time and effort needed each day. Children with food allergies often have an unavoidable sense that they are missing out because they can’t enjoy the same crisps or chocolate or even sandwich fillings as their friends, but when their safe meal can suddenly become as appealing, if not more so, than that of their peers, that disappointment can start to disappear. 12662534_10153359363278176_2469231552454213776_nA child with sensory issues or a reluctance to taste new foods and textures may be tempted to take a bite when faced with a Minion banana or a star-shaped piece of cheese. Of course, there’s no guarantee that your hard work will reap immediate rewards, but as with most things, a continued effort may make all the difference in the long run.

 I just wish M and G were back at the stage of just starting school as I can well imagine how delighted they would have been to eat lunches as inventive as these, but I think we’ve probably passed that window of opportunity, although I am tempted to ask M if he’d like them during his final year of Junior school. As you can see from the pictures I’ve shared above, what helps make the boxes so special is the various pieces of paraphernalia that can be bought online from Bento box company, Eats Amazing. There is an astounding amount of bits and pieces available, from mini cutters to letters and accessories, all there to help turn the run of the mill into a work of art. I suggest that you give yourself plenty of time to discover all that the website has to offer and choose items from themes that will not only appeal, 10629611_10153108516363176_8999877504252818384_nbut can be used on more than one occasion. At first glance, this isn’t a cheap hobby, but by picking a few strategic pieces and taking inspiration from everything that’s available, I am sure that this would be a sound investment for anyone wanting to make their child’s lunchbox something really special. I suspect it would have even tempted my pickiest of eaters when she was a few years younger.

 I am so grateful to N and her family for sharing their bento box journey and showing how a little creativity can make a big difference to a child surviving food allergies and issues in the school environment.

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UnSATisfactory Pressure

Since the introduction of the National Curriculum to UK education in 1989 and the creation of the Standard Attainment Tests (SATs) in 1991, everybody has had an opinion about them and few are afraid to make that opinion known. For 25 years, controversy has raged about the value of these tests and who, in fact, the tests are really testing – is it the children or the schools? The one thing that is not in any doubt is that these tests put our children under a huge amount of pressure to perform well, even when their skills perhaps lie in a different direction and little allowance is made for those who find formal testing an unbearable strain.

Even though it’s been 2 years since G was in Year 6, I can well remember the stresses and strains that the prospect of the year-end SATs put on her. Small, but telling signs of the pressure she felt were revealed through changes in her behaviour at home and her already shaky confidence in her literacy ability took a further battering as she struggled to understand what the tests were demanding of her. Her homework steadily increased to ensure that all maths and literacy elements were taught, revised and well-established by the time the tests themselves actually happened and she spent Saturday mornings working with my 29Mum, a retired Year 6 teacher, to fine-tune those skills that were proving a little elusive to my school-loving child. Her hard work and focus throughout the year stood her in good stead and we were all proud of her year-end results, most of all because they rebuilt her belief in herself. Despite that previous experience, I knew that M’s start in Year 6 would herald a very different set of experiences and that’s absolutely proved to be the case.

M has been expressing his worries about the SATs since well before he even reached Year 6. He loves reading and his imagination and vocabulary are impressive, but the ongoing struggles with his handwriting and spelling due to his dyspraxia and dyslexia have really knocked his confidence when it comes to his literacy skills. This September saw the very real manifestation of the stress and pressure he’s put himself under and pieces of homework and classwork alike have left him in tears. I realised just how bad things had got when I received an email from his class teacher expressing her concern about his wobbles in the classroom. She knows him well, having been the school SENCo since he started at this school in Year 3 and also his Year 4 teacher when he had his NG-tube, so she’s fully aware of his additional educational needs and personality quirks and felt that his response was completely unlike him.

We have been working hard with M to develop the basic knowledge that is missing due to the delay in getting a diagnosis for his learning needs and are seeing a slow, but steady improvement. He attends weekly lessons at our local Dyslexia centre and his teacher there is working on his phonic and spelling knowledge in particular. We have agreed with school that he will only learn the spellings set by the Dyslexia centre as there is a greater need to ensure he has a good base on which to build his literacy skills, than worrying about the finer nuances of prefixes and suffixes for the time being. M uses the Nessy computer program, which was developed to teach reading, writing and spelling skills through a series of fun store_icon_nessyreading-01and interactive games and challenges. He has access to this both at home and at the Dyslexia centre and will soon be able to use it during some of his intervention group sessions at school. I have also just invested in the Nessy Fingers course, which will teach him to touch-type, a skill we are all agreed will be of huge benefit to him, especially when he moves on to secondary school next September. The ability to make notes on a laptop or tablet will ease some of the angst he already feels about the workload he will face in Year 7 and we are hoping to investigate some dictation programs that will also make his life just that little bit easier.

During Year 4, M’s occupational therapist came into school and taught a series of lessons focused on improving his handwriting and teaching him how to form his letters correctly. He now has the most beautiful joined up handwriting and, whilst it may take a lot of time and effort to do, he shows great determination to produce a well-written, well-structured and well-spelled piece of work. Even better, M recently received a certificate at school recognising his hard work with the diary entries he had been asked to write and congratulating him on some great ideas and marvellous handwriting. He was so incredibly proud of being awarded that certificate and his confidence and self-belief soared as a result. All too often over the last few years, M has been praised for his courage in dealing with his EGID diagnosis, NG-tube and food allergies, so it was great to see him receive recognition for the hard work he’s been putting in to improving his handwriting over the last 12 months.

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Truth be told, at the end of the day it really doesn’t matter what M’s SATs results are. They will not be a reflection of the bright, brave, cheerful boy that he is or of the huge strides he’s already made from an educational standpoint. They won’t show his breadth of knowledge on random topics such as the Illuminati, or expound his theories on anything Star Wars or his opinions about Brexit and the American Presidential race. They will never reveal the medical and health hurdles he’s overcome since the day he was born. Rather they will be a single snapshot of the ability of my 11 year-old to perform under certain pressures on a given day in May and will have no bearing on the journey he will eventually embark on for the rest of his life. They really are an unnecessary and unsatisfactory pressure that M and his friends could do without.

School Dinners

One of the roles that I’m most proud to have taken on in the past few years is that of Allergy Ambassador for the wonderful restaurant review website, Can I Eat There?, not least because we are a family who enjoys to eat out and embraces the challenge of finding somewhere safe for both M and G. We have to accept that there a some places that we just can’t visit as a family because of their allergies and whilst that causes the occasional moments of heartbreak, we’ve learned to avoid them as best we can. In similar fashion, we have had to adjust our thinking when it comes to the matter of school lunches for both children. G’s food allergies have been a part of our lives for long enough that we’ve always had to make special provision for her lunches at school and, whilst her first school was prepared to buy gluten- and dairy-free alternatives to cook for her on a daily basis, it became increasingly difficult once we made the decision to move away article-1052305-0283dca100000578-744_468x306from the independent sector to a school with external caterers. We did manage for a couple of years once M had started at school by making sure that G and her teachers knew to pick the safe option from the choices given, but once M went MEWS-free in 2011, school dinners became a thing of the past and packed lunches were the way forward.

I was recently talking to a good friend when the subject of school lunches came up in the conversation. If I’m honest, I can’t quite remember what led us to that topic, but I was really interested to hear about the steps her daughter’s school was taking to make more than adequate provision for those with dietary needs. The school in question, Ashcombe Primary in Weston-Super-Mare, runs their own kitchen and work hard not just to maintain their healthy school status, but also to use local produce and to minimise waste. They are also keen to be inclusive in their approach to cooked school lunches and ask parents to talk to their kitchen manager if there are specific dietary requirements or allergies, menuso that they can work together to provide a healthy and nutritious alternative menu customised for that child. I’m sure that they cannot be the only school to make such efforts, but they are certainly the first I’ve heard about from someone in the know and I was impressed by what she told me they offer.

However, when I saw this sample menu that she e-mailed across to me, I was even more impressed. This school kitchen has really taken on board the requirements of the 2014 changes to EU legislation concerning allergens and their monthly written menu reflects them. Every single item on the menu indicates which of the top 14 allergens are included in the dishes and as each day offers 4 alternatives, that is no mean feat and shows a level of dedication to getting this right that is admirable. The steps this school has already taken in making this effort would reassure me, as an allergy Mum, that the kitchen manager knows her stuff when it comes to catering for children with allergies and that is something that is, without a doubt, absolutely priceless. Of course, I don’t know how successful they are in preparing freefrom alternatives when needed and would be fascinated to discover if their encouraging start actually delivers in reality.

Do you know of a school that offers a similar service or have firsthand experience of one? I’d love to hear from you and be able to share and celebrate these individuals who are working hard to be inclusive and not exclusive when it comes to lunch-times at school.

A Survival Guide For School & Allergies

The end of August always seems to be something of a surprise in our household. We arrive home from our holiday feeling relaxed and calm and then almost immediately face a madcap race to reach the finish line of shoes bought, uniform named, PE kits found and bags packed before school starts. In years past I have also had to make sure provisions are packed, discussions had and medical notes updated for M, but, for the first time ever, this year I wasn’t trying to squeeze in a critical meeting alongside my own new start with a new job. img_11331I know that next year when M moves up to our local secondary school it will be a very different picture, but after 3 years of working with the teaching community at our junior school, and with no major changes to contend with, M was able to start in Year 6 without this over-anxious Mum hovering in the background.

Without a doubt we have been incredibly lucky with the amazing support given by the fantastic teaching staff at our local school, but we have also had more than our fair share of bad experiences and teachers who don’t care in the past and I can well remember the anxieties and hours of meticulous planning that heralded the start of every new school year. The novelty of not having to head into the classroom before the end of M’s first week back has still not worn off and I’m certain that it’s thanks to the hard work that’s been put in on all sides to formulate strategies that meet M’s needs and to develop a strong working relationship between home and school that is reliant on open communication that flows both ways.

Over the last few weeks, there’s be a lot of chatter in the online allergy community about the fears that surround the milestone of starting school and, with over 8 years of “parenting-a-school-child-with-allergies” experience under my belt, I’ve been asked what tips I would give to any parent facing this situation for the first time. In all honesty, M’s first few years at school were difficult and certainly not the positive experience we would have liked. We had to deal with a SENCo, who trivialised his allergies because they “…wouldn’t have to call 999 if he ate something he shouldn’t…” and refused to recognise how important it was to communicate his allergies and health issues to any member of staff dealing with him and not just his class teacher, which led to numerous occasions of him being offered food he couldn’t eat. His teachers lost their focus in teaching him because they felt he already had a lot to cope with with his regular appointments at GOSH and his education suffered as speech impediments, dyslexia and dyspraxia were missed by those who worked with him on a day-to-day basis.

Fast-forward to the start of Year 3 and all our negative experiences became a thing of the past. The year actually began at the end of Year 2, when I met with the Head, SENCo and class teacher of his new school to discuss all of M’s health and educational needs and worked with them to put practical solutions into place before the term started. They understood the value of seeing him as more than just his EGID and food allergies, circle-timebut also knew that his health problems were a big part of his everyday life and couldn’t be ignored. At the end of his first week there, M’s teacher held a circle time in class where she shared about M’s ill-health and restricted diet with his classmates. It was done in such a nurturing and non-confrontational manner that by the end of the session M was willing to answer any question that his new friends had about what they had been told himself and has being doing so ever since.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As for his swap box, it has proved to be an invaluable tool in the classroom setting and is something that is really easy to implement. The idea behind the swap box is a simple one – it contains a selection of safe items, be they edible or non-edible, that can be swapped for those unexpected treats that sometimes come into the classroom to celebrate birthdays or other special events. When M’s swap box came into being, it was filled with a mix of Haribo sweets and the odd Lego minifigure and the choice was his as to what he chose to take. Since going elemental 2 years ago, the box now contains Lego, trading cards and other fun small toys and ensures that M never feels that he is missing out when his friends celebrate. What’s more, his teachers have taken inspiration from it for their own purchases of small gifts at Christmas or the end of term and given him something he can enjoy.

I think the biggest secret to our great experience with our Junior school is communication. The lines of communication are always open and actively work in both directions between home and school through meetings, phone calls, e-mails and the home/school book. The willingness of so many of the school staff to learn to support M to the best of their ability has created a level of trust unlike any other and means that I am ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery class in the school. When he left his Infants school, he was a child reluctant to talk about his food allergies or hospital appointments because he was scared of being isolated and bullied because of how different he was to everyone else. These days he has an incredibly strong friendship group who look out for him during school hours and think about him when he’s had to be in hospital, and he never thinks twice to share what’s going on with his friends.

If I had to sum it up, I guess I would say this:

Be open, be honest, be available. Keep communicating and tell them how they can make it better if you need to. Do what you can to help them out and don’t forget to say thank you when they get it right.

When September arrives

img_11331September can really only mean one thing: the start of the new school year and all that that entails. This year it has been just that little bit more hectic than usual as some things have changed significantly, whilst others have remained strangely static. G has moved up into Year 8 and is already embracing the addition of 3 new subjects to her timetable,very much enjoying the extra lessons of French, Dance and Drama as well as the move from Food and Textiles to Product Design. With the new school year, so there is also a new school uniform and whilst G is still a little sceptical about its appeal, I am delighted with how smart she looks, though only time will tell if that will last for the full year or not. M is at the start of the final year of his Junior school career and I still can’t quite believe that my baby is  now one of the oldest in the school. We know that this year will be full of challenges from an educational point of view, but with the continued support of his teachers at school and a full year of specialist lessons at our local Dyslexia centre, we are confident that he will be able to achieve his very best.

This September has also signified some major decisions about my own career after I was made redundant out of the blue at the end of the last school year. I am incredibly fortunate that my accountancy training meant that I was offered a new job within a remarkably short time-frame and I started that position the week before the children headed back to school. I felt encouraged by my new role and yet the last 2 weeks IMG_0743[1]have been filled with unexpected angst as one of the other positions I had applied for requested an interview and then offered me the job. After hours of deliberation and discussion and numerous sleepless nights, I have decided to accept this second role as it is an incredibly exciting and challenging position that I believe I would regret turning down. I am really looking forward to starting this new job at the beginning of October, which will bring some significant changes to our household as I will be back to working full-time hours for the first time since G was born, although I am lucky that they are happy to give me flexible hours and everything I need to sometimes work at home.

img_11381September has also been the month where we enjoyed a flying visit from Grandma and Grandpa, Mike’s parents, from Canada. G and M were so excited to see their grandparents for the first time in 4 years that they created a banner to welcome them when we went to collect them from our local airport. img_11431Mike finally finished the renovation job on our 4th bedroom, a task that had been started back in April,
but was interrupted first by the whole saga of M’s broken leg and then the demands of work and our summer holiday in Portugal. The room looks great, but his parents never got to sleep there as Mike had a last-minute panic that the futon bed might be too low for them and instead they slept in G’s room, whilst our gorgeous girlie moved to the freshly painted spare room for a few days. G, M and I all had to be at school and work as normal, but Mike spent some precious time with his parents before they returned home. It was a busy few days for us all, but we managed to squeeze in some family meals and board games where we could.

In the midst of all that busyness, there is one thing that has remained relatively static and that is the current position with M’s health, a real mixed blessing. The last year has been filled with numerous food trials, including during our disastrous admission at GOSH last December, but M is still stuck at just 5 safe foods and despite our hopes to start challenging him again soon, he is not even close to being symptom-free, something we’ve been striving for since his leg came out of plaster at the start of the summer. We are surviving in limbo with minimal medical input as the plan to start some shared gastro care with our local hospital has not yet materialised and we are not due back to GOSH for another couple of months. It is very difficult to see where the next few months will take us, particularly when you add in the added stresses of his Year 6 SATs, and so Mike and I are hoping for the best, but preparing for a bumpy ride.

M’s happy ending

M had been anxiously counting down, fretting that the day might never come, but finally it arrived with just over a week to go until the end of term and I had left him at school that morning absolutely buzzing with excitement about everything planned for the day. It had been marked as an important day ever since his last fracture clinic appointment 3 weeks before, which you may remember showed that the break was not mending as quickly as the orthopaedic consultants would have liked and left M sporting his rather snazzy sarmiento cast for a few more weeks. IMG_0506[1]During that unexpected extra time, M had really made the effort to use his leg even more and became scarily fast and adept at using his crutches in every situation. The last week saw even more development as he more or less abandoned his crutches at home and finally started putting his full weight on his left leg. All this to ensure that that cast would well and truly be removed that afternoon and be needed no more.

Our afternoon started with a DEXA scan at the rheumatology department of our local hospital to assess M’s bone density. The severity of both this break and his previous broken arm alongside the longer than anticipated recovery time had rung a few alarm bells for his gastro team and they wanted to check that his restricted diet and years of malabsorption issues hadn’t had a detrimental effect on his bones. Although the blood tests done during his December admission at GOSH had suggested his calcium levels were fine, this additional test would give us a clear picture of his bones and hopefully put our minds at rest. I had been warned that M would need to lie still for up to 45 minutes, something I doubted would be do-able without a lot of persuasion, by which, of course, I mean bribery, but he promised to try his hardest as he realised how important it was to get these results. Fortunately, the scan itself actually took less than 10 minutes to complete and whilst M did have to lie very still, he closed his eyes and tried to relax as the bed and scanner arm twisted and turned around him to take images from all the necessary angles.

DEXA scan over, we had just enough time to walk across to the outpatients department for his fracture clinic appointment. With our timing near on perfect, it was almost straight into the x-ray suite, where M chatted away with the radiographer as if he was an old friend and went through all the motions to get the perfect set of pictures of the fracture site. From there, it was straight into clinic and minutes later into the plaster room to have his sarmiento cast removed. Ear defenders were quickly put into place before the saw was started and M’s expressive face reflected his nerves and the mild discomfort as the plaster technician cut through the cast and the vibrations disturbed his sensitive leg. The front half was removed and trimmed as M wanted to bring it home as a memento of the last 6 weeks and I flat-out refused to bring home the back half, covered as it was with layers of dirt, sweat and oodles of dead skin.

IMG_0777[1]M and I sat waiting for the orthopaedic consultant to look at his x-rays before giving us his opinion, so I tentatively peeled back the tubigrip stocking that had been the only barrier between his leg and the plaster for the last 3 months. His left leg was a little skinnier than his right, though not as much as we had feared it might be, but was also incredibly hairy, something we hadn’t anticipated at all. A little research told us that when a cast is in place for an extended period, it causes constant irritation of the skin and so the hair grows to form a protective layer between the skin and the plaster cast. It was a completely unexpected insight into what M might look like when he eventually hits those dreaded teen years and puberty – and he really wasn’t impressed! In stark contrast to his skinny, white and very hairy leg, M’s foot was almost orange in colour and as scaly as his bearded dragon thanks to 13 weeks of no washing and hot weather. I snapped a quick photo to show it to M and the entire fracture clinic must have wondered what was going on as he and I dissolved into fits of giggles as we tried to decide the best way to remove layer after layer of the dead, scaly skin. For the first time ever, M couldn’t wait to get home and jump into the bath and he stayed in it for a long time that evening in an attempt to remove both dry skin and hair.

IMG_0783[1]We were sent home with a walking boot and crutches to help ease him back into the routine of walking and exercising without his leg in a cast and within 3 weeks both had been abandoned to one side. We’ve been back for our final fracture clinic, where M was discharged with a clean bill of health and permission from the consultant to participate in as many of the activities as he wants at next week’s activity camp. Unbelievably there is no physiotherapy available for M through the NHS, but we have an excellent private physio in a nearby town and M will have a couple of sessions there to get him well on the road to recovery. He is having to learn to pace himself, something my hyperactive 10 year-old is not very good at doing, but the aching leg that results from a couple of hours running around our garden with G is a harsh reminder that his leg won’t just bounce back to where it was at the start of the year. It will take a few months to recover the strength, muscle tone and mobility that M is used to, but some hard work and focus will get him there in the end.

Most importantly, M got the happy ending he’d been hoping for since that miserable day in April. He was able to spend his last week of Year 5 back in school without crutches and even had some time back outside in the playground with his peers. And nothing will beat the absolute joy I felt as I watched him disappear from the classroom surrounded by his supportive friends on the last day of term.