Tag Archives: parenting

Why we should value our NHS

If 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. I 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.

Thanks 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

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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 otw were 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. It 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. Discos, 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. M 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.

Family Storytellers

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During my judging stint at the #FFFA16 earlier this year, I got chatting to the lovely organiser of these awards, Michelle about the possibility of an ongoing working relationship between the organising body, Foodsmatter and 7Y2D. Always keen to promote my blog through any networking opportunities out there, I was as enthusiastic to explore the options as Michelle and eager to see where it might take us. One of the ideas we discussed was the introduction of a new diary looking at EC and food allergies on the Foodsmatter website and newsletter, to run alongside the well-established Coeliac and Allergy ones already there. Michelle proposed a different twist on the subject and asked if I thought G and M would like to write these regular entries to give a child’s perspective on life with food allergies. It didn’t take long for me to accept on their behalf, even without discussion, as I knew M in particular would leap at the chance to get his views out there, especially after his tube-feeding contribution to “Complete Nutrition” at the end of last year.

When I got home, M, G and I discussed at length this request and all its implications. Whilst both were as eager to agree immediately as I expected, I needed them to fully understand the commitment they were signing up to and reminded them that if they then decided to go ahead, I would be making sure that they kept to it every step of the way. I was keen to see G and M take up this fantastic opportunity for so many reasons and felt that with some focus they could really make something valuable of it. Both children are quietly fascinated by my blog and I have never hidden from them that I’m writing it or the reasons why. From time to time, one or the other will ask me to “..take a photo for your blog Mummy..” or “..will you be writing about this?..” blog I know that M occasionally takes a peek at what I’ve been writing and G has expressed a passing interest in getting more involved at some point too. Writing these diary entries for the Foodsmatter newsletter would give them a voice to express and explore their own attitudes, opinions and feelings about life where EC and food allergies are ever-present.

However, I strongly believe that there is much more to be gained by them than simply sharing their experiences with a wider audience and, as important as that is, these other life lessons have great value and will teach them well for their futures. The original proposal was for them to work in collaboration to produce a monthly diary entry to be included in the newsletter. They will have to learn to work as a team, sharing ideas, taking turns to write it down and, most importantly, listen to and recognise the value in each other’s opinions. I stressed that there would be no bad or wrong ideas about what each post should be about, simply thoughts that might need discussing and refining without argument or insult. 284454_10151027743256123_703224883_n Some months their entries might be a joint effort and for others, one might end up taking the lead with little or no input from the other, The responsibility of monthly articles is theirs, and theirs alone – I will not be stepping in if they leave it too late or can’t agree on what to write.

Having committed to writing every month, G and M need to make sure that they meet their deadlines and have an article ready for me to review and send before the publishing date. This requires a level of organisation that, for the time being at least, I will be helping them achieve as well as gently nagging them if the deadline is creeping ever closer. I suggested making a list of possible subject areas they might want to cover in their diary entries and reminded them that preparing this would mean that they could, if either was so inclined, get a head start and make notes for a future piece, thus saving themselves stress and heartache when time is running short. Flexibility, of course, is key and ideas can be shelved for a future edition if something more interesting, or relevant happens that they want to comment on instead. After 3 years of writing my blog, I know well the difficulties of having little to say when I want to post a new piece and how having something simmering in the background is always a real blessing at those times.

Most excitingly for me is waiting to see just how their writing voices and styles develop over time. M, despite the challenges of his dyspraxia and dyslexia, has never struggled with his imagination and is able to dictate fascinating stories that are filled with his character and sense of humour. In comparison, G has always found literacy a difficult topic to conquer and despite her breadth of reading and extensive vocabulary, struggles to express herself in the written word. I’m hopeful that the experience of writing this diary will help them both achieve more than they ever thought possible when it comes to their writing skills. If the giggles that floated downstairs to Mike and me as they wrote their first piece together are anything to go by, they really will enjoy this opportunity and I look forward to reading more from both of them.

For a taste of their contributions so far, you can read their entries for March and April here:

The diary of Galaxygazer and Marvin

And if you enjoyed those and want to keep reading on a regular basis as well as other great articles, you can sign up to the Foodsmatter newsletter here

The missing element

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With only the occasional exception of the odd batch of chicken liver pâté, M has been consuming more than his fair share of dry rice cakes on a daily basis over the last 14 months. What started as a necessity because of his limited diet and the lack of finding a delicious and safe spread to use, continued because, however I looked at it, I couldn’t see a way to create that missing spreadable element. The recent discovery of a great rice cream which could be spread a little like butter has meant that things seem to finally be on the up as it not only provides a tasty addition to an otherwise inarguably bland food, but also adds some much-needed extra calories each day. Arsenic-levels-in-rice-crackers-and-Rice-Krispies_strict_xxl Even better, that upward trend continued this past weekend when, as Mike prepared some toast with lemon curd for my breakfast, my mind was drawn back a few summers to when I realised that I could make dairy- and soya-free lemon curd for the children to enjoy and I wondered whether I could take that original recipe a step further and produce one that would achieve M-friendly status.

To my delight, this looked to be one of the easiest recipe adaptations I’ve had to tackle in the last 15 months as there were only 3 ingredients to be replaced and all could be done in the simplest of fashions. My coconut milk became rice cream, the cornflour mix replaced by rice flour and the safe margarine could be substituted by coconut oil. Refusing to tell either M or G what I was planning, I sent them out on an errand to buy some more lemon juice from our corner shop and achieved a much-needed break from the near constant bickering we’d been subjected to so far that day. It was a beautifully sunny spring afternoon and I knew they’d benefit, not just from the feeling they were doing something useful for Mummy, but also from some sun, fresh air and a stretch of their legs. M was somewhat confused by my request as he was insistent I had more than enough lemon juice in the fridge already, but he was readily swayed by my demand for more and the promise of a special treat if it all worked out.

The process of making the lemon curd was actually a lot easier and quicker than I remembered. I have vague memories of making “proper” lemon and raspberry curd when G was in Reception as an end of year gift for her class teachers and remember standing at the hob, stirring the hot mixture until ~~my arm~~ both arms felt tired. I’m not sure why this recipe and method don’t take so long, but I’m definitely grateful for anything that takes less than 30 minutes to whip up these days. To my surprise, despite their initial interest, G and M soon became distracted by other activities and so I was able to finish the preparation and get the 2 jars into the fridge without them noticing. The distraction of a dairy- and soya-free chocolate fondue for pudding – my desperate attempt to use up as much of the leftover Easter chocolate as possible as sadly it’s not been a success for M – proved invaluable and Mike and I were able to hold off the big reveal until it became Sunday teatime. IMG_0277[1] The flavour is very sharp and not overly sweet and M has loved every mouthful, demanding it on a near daily basis for either lunch or a bedtime snack. G says she enjoys it too, though I’m certain she won’t be asking for it on anything like as regular a basis as her brother. Most importantly, it provides a break from the dry mouthfuls of rice cakes that M has become accustomed to and that, in my world, is absolutely priceless.

Reaching out

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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. That 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. My 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.

The Sunday Roast

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It seems to be one of those dishes that is quintessentially British and yet its exact origins are not exactly clear. First published in recipe books dating back to the early 1700s, over the last 300-odd years it has become a key component of the Sunday roast, especially when that roast joint is beef. roast-beef-hero-006b0a8d-916f-4b1e-bffe-b6f00c34b96d-0-472x310 Beef is actually the next on our hit-list of foods to trial with M, but when this recipe for vegan Yorkshire puddings caught my eye, posted somewhere that I can’t quite remember, I knew that, inclusion of beef or not, adapting this to a M-friendly version was high on my list of priorities.

Despite numerous food challenges over the last few months, we haven’t been able to find a new safe food for M to enjoy since last August, when pear became lucky number 5. The monotony of only being able to eat the same 5 foods day in, day out has understandably taken its toll on his spirit and it has become something of a life’s mission for me to create new and varied ways of preparing those foods to help him enjoy them as much as possible. That aim has resulted in the absolute flurry of new recipes that has hit my blog over the last few weeks and which will continue to do so, until no stone is left unturned from a culinary point of view.

IMG_0263[1] The recipe was surprisingly easy to adapt and delightfully successful in its bake. M and G had no idea what I was preparing to accompany our Easter lunch and despite some optimistic guesses of chocolate pancakes from M, neither child got close with their hunches. As ever, I was slightly nervous until they took the first bite, but I really didn’t need to worry. My batch of 12 quickly dwindled down to 3 – well Mike and I had 2 each too, just to taste test you understand – and M declared them a hit. He took great pleasure in stuffing each pudding with some of his seasoned rice, which actually led to Monday night’s dinner of the remaining 3 puddings stuffed with rice, chicken and a home-made and M-friendly dressing. The greatest pleasure for me was being able to turn yet another popular dish into a M-friendly equivalent and know that his EGID and food allergies have been driven into the background once again.

When inspiration strikes

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With the busy-ness of March almost behind me and M trialling cocoa, and therefore dairy-free chocolate, over Easter, you’d have thought that it was definitely time for me to take a step back and relax a little over the long weekend. However, as I’ve found so many times in the past, when inspiration strikes, I just have to respond as quickly as possible or lose the opportunity to act. Call it providence if you will, but the stars most certainly appeared to align on Thursday with the perfect timing of Easter, a different food challenge and a tempting photo on Facebook. It all started when a lovely friend from my Thursday choir shared a photo of the delicious-looking hot cross buns and Easter biscuits she had baked on Thursday. I made some MEWS-free Easter biscuits a couple of years ago, but I’ve never attempted baking hot cross buns before, so you might wonder, given the complexity of M’s current restricted diet, why I would even begin to contemplate trying to now.

Whether it was the realisation that last week’s food challenge of grapes meant I could possibly create a bake that bore more than a passing resemblance to the “real” product itself, or the addictive sense of achievement that I get when I see the pleasure on M and G’s faces from the taste of something they haven’t enjoyed for a long time, I don’t know, but either way, hot cross buns made in a M-friendly fashion seemed to be a sensible use of my time on Good Friday afternoon – or at least, they did when I was lying awake thinking about it in the early hours of Friday morning itself.

Thanks to the amazing Nathalie of the Intolerant Gourmand blog, I had a fantastic starting point for my hot cross buns recipe. Nathalie’s recipe already replaces some of the main allergens, but M’s list of safe foods meant that I needed to make some more all important tweaks to produce a recipe that would be fine for him to eat. The hardest adaptation for me was replacing the yeast as obviously that’s what gives the bun it’s bread-like texture. After some frantic, yet focused internet research, I found that it was theoretically possible to replace the yeast with a mixture of baking powder and lemon juice and so decided to give it a go.

The dough was surprisingly easy to make and came together really well. I carefully added the cross to the top of the finished buns, popped them into the oven and then spent the next 20 minutes distracting M from what was baking. The end result was not quite as springy as a typical bread dough, rather being a little more like scones, but despite that, the flavours were all Easter and really reminiscent of that popular seasonal treat. I can’t remember the last time that M was able to enjoy a hot cross bun, which probably explains the time it took for him to realise exactly what I had baked – it took me pointing out the cross on top for him to work it out! However, both children enjoyed them and I have to confess to be quietly satisfied with the final bake when I tasted one for myself. Sadly, grapes have not proved to be a resounding success for M, but I’m glad that, when inspiration struck, I took the opportunity to bake him something a little different to eat before reaching that conclusion.

Limping towards the Finish line

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bucket list Do 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.

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

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

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

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

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

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

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

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

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

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Happy Easter!

Best food trial EVER – and just in time for Easter!

5 Replies

I don’t know what it’s like in your house, but Easter is always one of those celebrations that creeps up and takes me by surprise. I suspect that the general busy-ness of the 6 weeks beforehand plays a big part in my seeming inability to effectively organise for it. Every year I say I’ll be sorted and every year I fail miserably. When you consider the steady pace of events through our household this year: from Shrove Tuesday’s pancakes to Valentines Day, my birthday swiftly followed by M’s 10th and Mothers Day thrown into the mix for good measure, there’s no wonder that having finally paused for a much-needed breath, I’ve once again almost let Easter pass us by,

In previous years both M and G have been able to enjoy dairy- and soya-free Easter eggs, 20150402_183827 although last year was very different as by the time the day arrived, M was only eating rice, chicken and cucumber and our options were limited to plastic eggs and an accompaniment of non-edible treats. Thanks to some strategic conversations with M’s dietician and some canny planning on my part, Easter 2016 is promising to be a much more exciting time for him as we’ve timed to perfection his next food challenge: cocoa and dairy-free chocolate!

M is now counting down to when he can start this food trial and I’ve been frantically exploring the free from market as, believe it or not, there have been some exciting new ventures in the dairy- and soya-free chocolate world that we’ve yet to discover. Here I’ve decided to share some of the great options available for those of you looking for a fantastic dairy-free Easter chocolate treat and hope that you’re able to find the perfect one for you.

Please note: Due to M’s previously identified hypersensitivity, we are avoiding soya lecithin as well as dairy and soya, but not all of these products use an alternative, so I’ve listed any “may contains” listed by the manufacturer.

Plamil Foods – This is a brand that I’ve seen, but knew very little about. easter-eggs-xl They are the oldest vegan company in the UK and as well as not using milk, their factory is also gluten- and nut-free. Impressively they were the first company in the world to make dairy-free milk chocolate in 1983 and the first organic chocolate in the UK. Their Easter products include a variety of Easter Bunny bars and bags of half chocolate eggs as well as the more traditional hollow eggs.

Dairy-, gluten- and nut-free
Uses sunflower lecithin
*May contain traces of soya
Available from Plamil foods, Holland & Barrett, www.goodnessdirect.co.uk, other independent retailers
Prices from £1.25 to £4.95
G’s mark out of 10: 9/10

Moo Free Chocolate – We’ve been big fans of Moo-free chocolate for a long-time, not least because they were one of the first dairy-free brands that I discovered that used sunflower lecithin, making them really safe for M. As well as their ever available chocolate bars, they are selling hollow Easter eggs in 3 flavours: moo-free-3-eggs-diagonal-web-medium Original, Bunnycomb and Orange.

Dairy-, gluten-, lactose-, casein- and wheat-free. Also vegetarian and vegan
Uses sunflower lecithin
*May contain traces of hazelnuts
Available from a number of stockists including Sainsburys, Waitrose and Holland & Barrett. For a full list, click here
Prices from £4.00 to £4.99
G’s mark out of 10: 10/10

D&D Chocolates – This is a new brand to the whole family and I was lucky enough to have a taste at the recent #FFFA16 judging days I attended. As their website shows, they have a whole range of really lovely Easter products from the delightfully named Chuckling bunnies, mini eggs and various felt bags and baskets crammed full of chocolate. choccbunniesHR-big They also sell carob products and have a similarly impressive range of those themed for Easter too.

Dairy-, nut- and gluten-free. Also vegan
Uses sunflower lecithin
*May contain traces of soya
Available on-line as well as Independent health stores
Prices from £2.50 to £29.99
G’s mark out of 10: 8.5/10

Cocoa Libre – These are a relative newcomer to the freefrom market, but impressively have been shortlisted at both the #FFFA15 and #FFFA16. When I first saw their products, I got very excited as they are made with Rice Milk, which is clearly labelled on their packaging, but sadly they also include soya lecithin at the moment.This means that they’re not currently suitable for M, though I’ve no doubt that G would love this box of 10 Easter chicks. UfubKWw9Rb4AWzEU3q0Ot-jlK0Y

Dairy-, gluten-, wheat- and nuts-free. Also vegan
Uses soya lecithin
Available on-line as well as a number of small independent stores around the country
Prices from £1.95 to £4.95
G’s marks out of 10: Unfortunately G didn’t manage to try this one before I published this blog, but the chocolate I tasted at the #FFFA16 earned a 9/10 from me

Booja Booja – If you eat dairy-free chocolate and want to be indulged, you need look no further! Booja Booja makes the most decadent and delicious chocolate, which is perhaps far more suitable for the adult taste than for children, though needless to say,
G and M both loved their champagne truffles a few years ago! They have a beautiful selection of Easter eggs in this years collection and I’d be hard pushed to know which to choose.

organic as well as dairy-, gluten- and soya-free
*May contain nuts
Available from stores including Waitrose, Holland & Barrett and Sainsburys. Other stockists can be found on-line here
Prices from £9.95
G’s marks out of 10: We didn’t try their Easter eggs, but their truffles deserve a richly indulgent 10/10

A Birthday* surprise (*cake recipe included!)

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Six months ago I tackled the challenge of a birthday cake for M, where the only ingredients he could eat safely didn’t lend themselves to whipping up a tasty sponge and he ended up with a 3-tier Cluedo-themed “fake” cake. Six months before that, I adapted a crazy cake recipe to create a M-friendly chocolate masterpiece for my Mum’s milestone birthday.

Somehow it seems fitting that we’ve come almost full circle in our cake journey and I’ve recently found myself facing the task of another birthday cake for Mum and, more than that, one which could be eaten and enjoyed by us all. The apple and rice flour cupcakes I’ve been making have been a real winner with the children, but the ever-persistent problem of a granular taste to these bakes, no matter what I’ve tried, meant that I was desperate to find an alternative and better recipe to mark this special occasion. Despite frequent google searches, that recipe was proving to be irritatingly elusive and it was only when we finally achieved a fifth safe food for M that I struck birthday cake gold.

To be perfectly honest, it really all came as something of a surprise success as I had no great hopes of yet another search turning up a rice flour cake that would 1) accommodate M’s restricted diet and 2) taste delicious. Despite my doubts, I thought it worth a look with our new ingredient of pear added to the mix and came across this easy recipe for pear and rice flour cupcakes that were not only gluten- and dairy- as advertised, but also egg- and soya-free too. I decided to do a test run and made a quick batch whilst G and M were in school. By the time they arrived home, the house was filled with the tantalising smell of fresh baking and M’s nose instantly went into impressive action as he begged to know if he could taste-test the cakes I’d been preparing that afternoon. Three cupcakes quickly disappeared from the cooling rack and I was thrilled to discover that there was none of that unpleasant granular taste that I’ve come to associate with rice flour baking. With an instant hit on my hands, I now needed to decide whether to attempt a cupcake tower for my Mum or see if I could cook a more traditional cake using the same recipe.

Due to an abundance of apples in our household at the moment – the benefit of apple trees conveniently located at my Mum’s, my office and at a friend’s – I tweaked the recipe to include some apple and reduced down the original quantities of oil and syrup as the original cupcakes had been a little too sweet for my liking. I waited nervously as the cakes baked, fingers tightly crossed that the larger layers would turn out as well as the cupcakes had and I needn’t have worried. The cakes looked impressive and I now have yet another great recipe to add to my list. Having left them to cool in the fridge (no #GBBO-style “wafting” in my household!) I sandwiched them together with some home-made apple purée before turning my mind to the knotty subject of how to decorate it all.

Now, if I had seen at that point episode 7 of #GBBO, I might have taken my inspiration from Paul’s amazing apple swans and spent my afternoon carving the intricate decorations to top the cake, but fortunately, or maybe unfortunately – I suppose it depends on your point of view – that episode had yet to air and instead I found myself using my time much more wisely: I was back on google trying to work out if a dairy-free buttercream icing was at all possible. To my delight and complete surprise, I found a way to adapt a recipe and create my very own coconut oil icing, which would tick all the boxes when it came to M’s dietary requirements. Whilst he is unable to eat coconut milk or flesh, he is able to tolerate the oil and I was over-the-moon to have the chance to finally bake a cake that actually looked and tasted like “real” cake for him to try for the first time in nearly a year. I took a tentative and small first mouthful to check the taste before spreading it across my cake. It has, unsurprisingly, a strong coconut taste, but this complimented the apple and pear flavours of the cake and was beautifully easy to use.

The icing was easy to make and I’ve no doubt I’ll be making more the next time a M-friendly cake is required. To make my recipe, I used:

250g solid coconut oil
200g icing sugar
2tsp vanilla extract
3tbsp rice milk

Put the “solid” coconut oil – it should not be liquid at room temperature – into a bowl and blend until smooth
Slowly add the icing sugar and vanilla, continuing to beat the mixture
Finally add the rice milk, 1 tbsp at a time until you reach the consistency required. You can add more or less rice milk depending on how spreadable you want the icing to be
At this point I added some food colouring, one drop at a time, until I got the colour I was after – I’m not too sure about the green icing I ended up with, it was Mike’s suggestion and I’m not convinced it was the right one!
Use to decorate cakes or cupcakes. Whatever your opinion of the colour, the finished result looked spectacular and I’m pleased to say it tasted amazing too!

NB – you can add any other safe flavours or colourings instead of the vanilla

This recipe is an entry into the #Swearbyit challenge with Vita Coco. Find more great coconut oil recipes and tips on using coconut oil at http://www.swearbyit.com”

7 years to diagnosis

Searching for an answer