Tag Archives: GOSH

Rice Two-Ways

When we made the decision to go elemental in an attempt to bring about a reduction in M’s chronic symptoms, I never imagined that the reintroduction of foods would be as fraught and intensely stressful as it has proved to be. In the past 12 months we have made absolutely no progress whatsoever and everyone is stumped about what the root cause of M’s problems actually is, with opinions fluctuating between complications from his EC, “simple” multiple allergies or a physiological problem with his gut. Whilst the teams of medical professionals involved in M’s care try to decide on what direction they should follow next, I’m left stretching my ingenuity to its very limits when it comes to preparing meals for my understandably fed up 10-year-old.

mixed_rice

I’m constantly on the search for anything that will make my cooking life that tiny bit easier and a lot more interesting and love finding products that are both M-friendly and a little out of the ordinary. Like many of you I’ve eaten rice for years, but generally just as boiled rice to go with a tasty chilli con carne or egg fried from the local Chinese takeaway and had never really thought much about it. Since rice has become the staple carbohydrate of M’s diet, I’ve come to love the versatility of this ingredient and continue to be delighted by the many versions of it I’ve uncovered along the way. Rice milk, rice porridge flakes, rice cereal, rice flour, rice crackers, rice noodles, rice pasta, rice vinegar and your choice of plain rice: long grain, brown, basmati, wild or black have an overwhelming presence in my kitchen cupboards and so now do 2 rice-based products that I’ve discovered over the summer.

img_08441First are Blue Dragon Spring Roll Wrappers, which do contain a small amount of tapioca starch, but are predominantly made from rice flour. Having recently perfected my own version of lemon chicken to satisfy M’s longing for some much-missed Chinese food, these seemed like a great addition to the repertoire and I couldn’t wait to make both M and G some M-friendly pancake rolls for dinner. If you’ve never attempted to cook with these before, let me tell you that they are not the easiest ingredient to use, but I suspect that a lot more practice will make a big difference. I set up my workspace next to the kettle, filled a shallow baking dish with boiling water and then painstakingly soaked the wrappers, 1 sheet at a time, before filling them with some thinly sliced chicken, cucumber, apple and pear that I had already prepared. img_08461I cooked them in 2 different ways, interested to see which my discerning duo preferred and was very much surprised by the results when they came in. G loved the bigger roll which was just prepared as I described above, whilst M told me he’d opt for the shallow-fried triangles every time. I am thrilled that the wrappers were so well received by both children and can’t wait to see what else I can cook with them as I’m sure that they are versatile enough to be used to create some sweet treats as well as the more traditional savoury dishes.

img_11031The other is a real store cupboard essential and I can’t begin to tell you how excited I was to discover this item when I was perusing the virtual aisles of the fantastic online supermarket that is the FreeFromMarket. As for when the box of Clearspring Brown Rice Breadcrumbs arrived, nestled in the midst of my other purchases, well, Mike and the children were all summoned by my squeals of joy and then left me to my celebrations, shaking their heads sadly in complete disbelief. I am sure that there are so many ways to use the breadcrumbs in my cooking, but I started by preparing a breaded, stuffed chicken breast along the lines of a more traditional chicken kiev. I made a coconut oil and herb mix, which I carefully squeezed inside the cut I’d made in the chicken breast, before coating it liberally with the breadcrumbs. 25 minutes later and img_11091dinner was ready with a golden brown chicken breast tantalising the taste buds with both its look and its smell. They really were delicious and neither child was very willing to sacrifice a mouthful of their meal for Mum to taste-test herself. Now that the summer holidays are over and we’re heading into the autumn, roast dinners will make a more regular appearance in our household and I’m hoping to use these breadcrumbs to create an M-friendly stuffing for us all to enjoy.

img_08531          img_11101

 

Advertisements

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.

Any plans for the weekend?

We’ve got a weekend in London ahead of us and, being our usual optimistic selves, have planned a whole host of activities to keep us busy at every interval. Thanks to remarkable coincidence, we are able to combine 2 opportunities that have come our way and I’m hoping that Sunday evening will see us back home, exhausted, but also exhilarated by our experiences.

Allergy_Olympia_Logo_2Last year we decided somewhat reluctantly not to make our annual pilgrimage to the Allergy & Free From Show in London as M was in the midst of being tube-fed and had, at that point, only 4 safe foods in hand. Whilst I would have loved the opportunity to explore the offerings we’ve found at these shows in the past, I knew in my heart of hearts that it was more than M would be able to cope with and I wasn’t prepared to put him into what was bound to be an emotion-filled, stressful situation. G and I did toy with the idea of going without the boys, but other events came along and we enjoyed a weekend at home instead. To my surprise, M was incredibly disappointed not to go and was insistent that when this year’s show rolled around, he wanted to attend and was as keen as we have been before. At the start of this year, Mike and I discussed whether we really would go, talked it over at length with M and finally took the plunge and got our tickets for this Saturday. Over this past week or so, M and I have been looking at the businesses that will have stalls in Olympia when the show opens on Friday and he’s already made a note of a few he wants to visit. As I have become more active in the allergy community over the last 12 months or so, especially through friendships built at the FreeFrom Food Awards in February, we are all looking forward to meeting up with some familiar faces during our visit. This show is an amazing event and one that I would highly recommend to anyone living with allergies, or indeed following a vegan lifestyle. You can still get tickets to attend by clicking on this link and the show will be there until Sunday.

GOSH-logoSunday brings a different opportunity and an exciting one for G. When M and I took part in this year’s PLACE assessment at GOSH, I met and got chatting to Fiona Jones, the Children and Young people’s Participation officer at the hospital. One of her roles is to promote the GOSH YPF, or Young People’s Forum, something I had never heard about before, but was interested and keen to find out more. The YPF is for patients, ex-patients or siblings of patients at GOSH who are aged between 11-25 years old and who are interested in expressing their opinions about how GOSH can best support its teenage patients as well as being involved in projects that will help make the hospital experience a positive one for patients and their families. Unfortunately, M is too young to become a YPF member just yet, but Fiona asked if I thought G would like to become involved and I promised to ask her as soon as I could. To my delight, G was excited to be asked to join the GOSH YPF and is looking forward to attending her very first meeting on Sunday. focus-groupBoth children have already been lending a hand by trialling and reviewing an on-line project called Digital Badges, something they have really enjoyed trying out over the last 2 months or so, especially giving their feedback on how this project worked. G will spend her day with this group on Sunday at GOSH, whilst Mike, M and I explore the nearby British Museum and their Sutton Hoo exhibit and I can’t wait to hear all about it during our return journey.

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!

NEAW 2016 – Definition of a hero

image17How do we define a hero?

The dictionary definition describes a hero as “…a person, typically a man, who is admired for their courage, outstanding achievements, or noble qualities…“, but personally I prefer the description given by Christopher Reeve. That man, best known for portraying iconic superhero Superman and his unparalleled physical strength, had to learn to develop a mental strength of epic proportions when faced with the devastation of complete paralysis following an accident that changed the direction of his life in the proverbial blink of an eye. He truly became an individual who persevered and endured and succeeded despite the obstacle of his impaired health and he willingly lent his voice to the campaign seeking a cure for spinal cord injury as well as improving the quality of life for those living with paralysis. An amazing and inspirational man.

Last week’s Invictus Games gave us a glimpse of a different set of heroes, who have survived, and continue to survive, against the most unbelievable odds. Their stories bring a tear to the eye and a lump to the throat and are more than enough to inspire you, and their determination to live life to its fullest is simply awesome to witness. These servicemen and women have taken the tragedy of mental and physical injury and turned it into a stepping stone to reach a new goal. Be they athletes or members of the Invictus Choir, their courage in overcoming challenges that most of us can’t even begin to imagine, as well as being prepared to share their struggles in the public eye, makes them a great inspiration for anyone facing their own silent battles.

So, it seems that M’s recent homework came at an opportune time. He was asked to think of a person who inspires him – famous, family member or friend – and come to school prepared with a picture and a 1 minute presentation explaining what makes that person inspirational in his eyes. With so many varied choices out there, I was intrigued to find out who he would choose, fully expecting him to struggle to decide and wanting to see if his final selection would give me an idea for a blog during #NEAW16. I’ve got my blog post, and it turned out that I was wrong as M knew almost immediately the person who inspires him and the reasons why. This is what he wrote:

IMG_0450

Finley, who is nearly 6, is one of M’s #EGID and #GOSH friends and is unable to eat anything. M often talks about Finley: the uniqueness of his chronic illness and his ever-present smile despite the challenges, so it came as no great surprise to me that M finds him inspirational. For M, Finley is the definition of an EGID hero; but he’s not the only one. We have come across hero after hero in our contact with our extended EGID family, including those young people and adults who, in the way they live their lives, are giving my son something to aspire to and showing him that he can achieve the goals he sets for himself. We’ve celebrated with others as their loved ones have achieved exam success, received college or university places and started out on new careers. Sharing these milestones within our EGID community reflects that these are families like ours, who are trying to make the best of the situation they find themselves in and using their own experiences and successes to encourage and help others whenever they can.

For me, the best response to M’s homework came during his last Stagecoach session as he described Finley to his singing teacher. That lovely teacher turned to my boy and gently said, “You are one of the most courageous and kind-hearted children I know. That reason you’ve just given me for why you admire Finley, is the very reason why you inspire me. Despite everything you cope with, every week without fail you turn up here and have a cheeky smile on your face that cheers me up and makes me smile.” And the look of quiet pride that slowly spread across M’s face as he absorbed that compliment told me everything I already knew: that in his own unique way, M also embodies the very definition of an EGID hero.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

The right PLACE for an opinion

Finally, it’s happened. Finally, I’ve found a place where my opinion matters. In fact it did more than matter, it was requested, recorded and appreciated too and, what’s more, it wasn’t just my opinion that counted that day, but M’s as well and that meant the world to him, and to me.

5729994426_7fbcf8798aAt the start of 2016, not long after we had returned home from M’s December admission, I spotted an opportunity for M and me to volunteer our time to be assessors for the annual PLACE assessment at GOSH. If you’ve never heard of PLACE before, then you’re not on your own as it was also a completely new thing to me, but I loved the idea of being able to give something back to the hospital that has become the focus of the last 5 years of our life in any way we could. To my delight, M and I were both accepted as volunteers and it was then a case of waiting for the crucial email inviting us to the assessment day to arrive. When that email did eventually appear in my inbox, the day was set for early April, which coincided perfectly with school holidays and my day off work – a real win-win situation for us. M and I chatted about what the day would involve and even the unexpected turn of events that resulted in M’s broken leg didn’t stop us as Tammy, the helpful Facilities Manager and PLACE co-ordinator, reassured me that we could still take part, broken limb and all.

PLACE stands for “Patient Led Assessments of the Care Environment” and, to be honest, does exactly what it says on the tin – invites patients and others closely connected to GOSH to assess different areas of the hospital according to a specific list of criteria. Upon arrival we were well-briefed on what was required, including the 5 key areas we would be focusing on: cleanliness; condition, appearance and maintenance; privacy, dignity and well-being; food; and, ironically, a new area for 2016 and one that M was best suited for, disability. We were split into a number of teams with between 3 and 4 patient assessors and a staff facilitator in each, and each team was allocated 2 wards and either a public (or communal area), an external area or an outpatients department to inspect. M and I had discussed the ward options at length ahead of time and despite M’s initial yearning to visit Rainforest, we agreed that our opinions of Rainforest and Kingfisher wards, both of which we have stayed on in the past, would be coloured by our previous experiences and wouldn’t be as unbiased as the PLACE assessment required. I asked if we could perhaps visit one of the newer wards in the hospital as it would be vastly different from our usual haunts and was delighted when that request was met.

focus-on-the-system-theory-y

Our facilitator was the lovely Mark, who had already promised M that he would try to lead our group and would take him in the biggest lift in the hospital – which we did and saw so much more of the hospital that I’ve ever seen before. Everything settled, we headed into the main Reception, our public area, and started looking at the different things and criteria we needed to consider to complete our assessment, from fire extinguishers to hand-gel dispensers and everything conceivable in-between. Once we had finished there, we headed onto our first ward in one of the newer wings of GOSH, where, having completed our assessment of the ward itself, we observed the lunch service before tasting the food for ourselves. Our final stop was back in the oldest part of the hospital, where Rainforest ward can also be found, and what must be one of the smallest wards at GOSH. The contrast between the 2 wards was hugely noticeable and it was fascinating to learn more about the proposed improvements to the hospital over the next 5 years or so. It didn’t seem like a particularly long or overly active day, but by the time we had finished with everything we needed to do and had headed back to the Lagoon to collate our scores and add any further comments, M was completely exhausted. His enthusiastic participation in giving his own opinions and insights into what he could see so soon after breaking his leg tired him out to the extent that he fell asleep in his wheelchair and was completely oblivious to the activity and hubbub surrounding him for the next hour or so.

We both thoroughly enjoyed our experience on the day and M was delighted to discover once he woke back up that an invitation to attend next year’s assessment had been extended to him and that G had been added to the task-force too. I can’t reveal too much about what our findings were until the results are published, but I will say that we did find a problem with the disabled toilet in the main reception area. We were surprised to discover that it wasn’t really big enough to accommodate M, his wheelchair, his extended leg and me and that we didn’t have the space to manoeuvre him from chair to toilet once we locked the cubicle door. It appears that M’s broken leg came in handy on that day, though I’ve no intention in offering a similar expertise to next year’s PLACE assessment day! Since then, M and I have found ourselves sitting in the fracture clinic at our local hospital assessing what we can see surround3-tips-to-improve-the-way-you-write-Web-Contenting us, just as if we were in the midst of another inspection. What’s more, as often comes of these things, some more opportunities for both children to be involved in an ongoing capacity with developments at GOSH came out of that day which is really exciting, but that, as they say, is another story.

Why we should value our NHS

nhs-logoIf you live in the UK, you can’t help but be aware of the current problems faced by the NHS. The continuing debate over contracts for junior doctors has led to 4 strikes in the last 4 months, though the discussion has been raging for much longer, and there are more strikes on the cards if the issues can’t be resolved. Theses issues have been well-documented in the national press and I’ve no doubt that those of us who depend on a very regular basis on the healthcare provided by the NHS have our own opinions about these strikes, especially if we know, or indeed are, one of the 25,000 cancelled operations that have resulted from their action. Whatever your thoughts about these strikes – and believe me when I say that I’ve heard a huge cross-section of opinions from friends and acquaintances – it is impossible to ignore the underlying truth that the NHS is struggling and its future doesn’t necessarily look all that rosy.

Over the last 5 years, our experiences of the NHS have ranged from the outstandingly good to the outrageously awful. We continue to have a very reluctant relationship with our local hospital, who has unquestionably failed M at almost every step of the way and it is only our belief that local support and care is tantamount to his continued health and well-being as well as our peace of mind that has kept us in the battle for a shared care relationship between our local and GOSH. Likewise, whilst we are extremely grateful to M’s GOSH consultant and dietician, who not only gave us that elusive diagnosis 3 years ago, but who continue to advise, support and care for him with the honesty that we requested, the disastrous outcomes of our last admission have tested that “doctor – patient’s parent” relationship to its limits. We have accepted that they don’t have all the answers, nor access to that much longed-for magic wand, but we will keep going back because we have absolute confidence that M’s medical team, at least, will carry on striving to do their best for our medically complex challenge of a child.

Yet, despite all the lows, the high points mean that I can see there is something truly wonderful to be valued about our NHS. I see it in the regular phone-conversations that happen between M’s dietician and me, so that she can keep an eye on what’s going on from a food point of view and monitor how well he’s managing with drinking his E028 now that the NG-tube is gone. I see it when she takes her concerns to M’s consultant and talks them through and agrees a way forward, so that we don’t have to wait months for our next trek to London for an appointment before we act on the problems we’re experiencing now. I saw it in the care given to both M and me during his admission, when the nurses made sure that his best interests were met as far as possible and offered cups of tea when they were otherwise powerless to help. value-620-320I saw it in the frankness awarded to Mike and I during the December debacle, when we asked for an honest opinion about his future health and what we could expect; and it was given.

And I see it at the local level that for most of us is our main contact with the NHS. Not the senior consultants, junior doctors and hospital staff dealing with the chronically ill, but through the GPs surgeries and the doctors, nurses and other staff that work there. I know that we are incredibly lucky with the local medical centre that’s found in our small village and for as long as we have been a part of it, they have gone above and beyond so many times to make things easier and get answers and help whenever we’ve needed it. Recently, I hit an unexpected stumbling block in ordering the E028 formula needed to keep M going, one that had been caused by a lack of communication between the feeding team at our local hospital and just about everyone else. A feeding team nurse had contacted GOSH to confirm whether M still needed regular tube changes and, on being told that he no longer had his tube, she cancelled the monthly orders with the feeding company. Nothing wrong there you may think and I’d agree, except she didn’t advise us that she’d cancelled it, nor did she tell our GP that it was now their responsibility to sort out his monthly prescriptions.

may-arrows-on-a-wooden-post-and-a-white-sign-for-writing-a-message-D6WY0KThanks to past experience and my somewhat controlling approach to always having a supply of E028 in the house, I started chasing about when we could expect our next delivery whilst there was still a good amount of stock in my dining room and spent the next 40 minutes being pushed from pillar to post as I tried to track down who I needed to speak to and unpick exactly what had happened. When I finally established what I had to do, it was my wonderful GP’s surgery that I turned to and their fantastically competent staff. With the help of 1 receptionist, 1 member of office staff and the invaluable pharmacist, we eventually got M’s prescription sorted and marked as an ongoing monthly medication. They phoned, researched, ploughed through reams of medical notes and faxed until it was all sorted – and all with the attitude that they wanted to help, were willing to help and were happy to help, and a ready smile that reassured me I wasn’t being too much of a problem in their already busy day.

That is caring for the patient at its absolute best and that’s why we should value our NHS; for all those staff who get little thanks but make a big difference – or certainly did for this harassed Mum!

Over The Wall

It was last summer when I first heard about Over The Wall and the amazing camps they run across the UK for children with serious health problems. M’s GOSH and EGID friend, R and his big sister, I otwwere fortunate to go to one and the photos and comments about it posted by their Mum, Annie left me determined to find out more and see whether M might similarly qualify for a place.

Over the Wall is a UK-based charity that is part of the international SeriousFun Children’s Network, which is based on an original idea set up by actor Paul Newman in the 1980s. He identified that the popular US summer camps attended by thousands of American school children every year often left out children living with chronic health conditions because of the inability of camp volunteers to cope with the often complex medical needs. His vision was to open up that opportunity to every child, regardless of their health needs, and he helped to provide full support for every child whilst they were away from home. These children got the full “camp” experience as they were unaccompanied by parents or carers and were able to enjoy a touch of “normal” in their otherwise complicated lives. From that simple starting point, one camp spread across the US and into countries across the world and soon followed the realisation that not only did the sick child miss out, but so, all too often, did their siblings and the idea for a separate siblings camp was formed.

I was delighted to learn about the siblings camp and, feeling that this was another great opportunity for G to escape the constraints of a sick sibling and be surrounded and supported by others in the same situation, duly applied; and so it was that a couple of weeks ago, G headed off to deepest, darkest Dorset for a week of serious fun. Just as her Young Carers group gives her the opportunity to have time away from M with other local youngsters in similar supporting roles, G spent the week with other 8-17 year olds from across the South of England and Wales, who all have 1 thing in a common: a brother or sister living with a chronic health problem. IMG_2504It was a week to be herself, not defined or viewed in her role as M’s big sister, and encouraged to take time to focus on herself without worrying about M and how he would feel.

The children who attend are split into 8 groups: 4 colours determined by their age, with orange for the youngest and blue for the oldest; and then each colour split into separate boys and girls teams. Volunteers are a key part of the camps and their numbers match camper numbers, so for the 60+ children on the 2016 South Siblings Camp, there were 60+ volunteers supporting them, encouraging them and making sure they had fun. During the week the teams participate in a number of activities, from swimming to archery and from climbing to arts and crafts and much, much more. Their days are carefully planned with breaks and an after lunch rest hour, which G tells me was strictly adhered to, as well as a cabin chat every evening, where the teams reflect on their days and every member is awarded a bead to recognise what they’ve achieved. IMG_2589Discos, team games, inter-team challenges, morning singsongs, new activities, skills learned, old favourites and even a talent show sum up G’s week away.

G’s enthusiasm about her time on camp has been wonderful to hear and she was keen to teach M the camp songs and share so many snippets of everything she got up to whilst there. I love the fact that there was little or no discussion about their chronically ill siblings, but instead the focus was well and truly where it needed to be – on these children who all too frequently miss out. I was impressed with the array of meaningful mementoes that G brought home with her, as impressed as she was delighted. More than just her purple OTW t-shirt and a black one for M, but also a carefully crafted wooden bird-box, team and camp photos, a hand-print card holding the reflections of the team – both peers and volunteers – on who G is as a person and why they appreciated her, and that precious collection of beads reflecting her achievements during the week, recognised by her team volunteers and accompanied by a written record of why they felt she had earned them. All of these things have built up her self-confidence in those few days away and have helped her feel even more valued within this new group of friends.

For us, it was an unnaturally quiet week in the household and there was a definite sense of something missing from our every activity. IMG_3019M was reluctant to admit to missing having G around to play with and torment, but his move to sleep in her bed every night she was away revealed the depth of those feelings he didn’t want to show.

As a parent, you know you’re on to a good thing when you child asks for more and G has already asked if we can apply for her to go again next year if at all possible. Her enthusiasm about her experience has bubbled over and infected the whole family with M now having everything firmly crossed that his application for a place on the August Health Challenges Camp is successful. That would see him having those same opportunities to enjoy as G in an environment that we can be confident will be safe for him as there are medical volunteers and 1-to-1 support for the chronically ill children. Even better, the children have decided to make OTW the focus of their fundraising efforts during National Eosinophil Awareness Week this May. The one thing I haven’t mentioned is that these camps are offered completely free to those children who attend, making them truly accessible to all, which is a really fantastic part of this charity. Any funds that G and M can raise will help make a huge difference to others like them and if you’d like to make a small donation, you can do so via this link or the button on the right, with our thanks.

12936683_1002729343151582_8009708048299769356_n

Reaching out

I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. social-media-treeMy blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

reach-out

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.

8a165f06e3cedd424f2724dc4a5cc6bc

Happy Easter!