Category Archives: Chronic Illness

Dinner Plans

The beauty of staying in the amazing Applause apartments in East Aldgate was the ease with which we could accommodate M’s current dietary requirements at mealtimes. Every morning, he and G enjoyed a bowl of safe cereal and rice milk for breakfast, whilst Mike and I had coffee and brioche before we headed out for the day. Once breakfast was done, the children and I would finish getting ourselves ready and Mike would make and pack lunches for us all. The ability to prepare packed lunches was just what we needed as not only were we able to meet M’s extreme food requirements, but also the dairy- and gluten-free needs of G.

On our first day there, we stumbled across a fantastic shop called “Planet Organic“, where we were able to pick up some previously undiscovered M-friendly bits and pieces, including mini rice-cakes, which are perfect for his lunchbox. Of course, with the packet now nearly empty, the race to find them closer to home is on before he finishes them off. The brown rice noodles have also been a massive hit and make mealtimes just that little bit more interesting than they have been over the last 3 months. Sadly, the one thing we had been hoping to find, rice pasta, was sold out and so my search for that alternative continues.

The more interesting task was that of our evening meal. One of the things we have always loved to do is eat out as a family and it is one of the things that M in particular has found hardest about having his tube. We have had a wealth of experience over the last decade of finding restaurants that will accommodate the ever-changing dietary needs of G, M and even me and we had settled on a few firm favourites that we knew would almost always meet our requirements. Of course, the option to cook dinner where we were staying was great to have, but Mike and I were both looking forward to having a break from the monotony of 3-ingredient dinners and decided to do some focussed research before we even left the comfort of our own home. We spent hours one evening trawling the internet, finding restaurants in the areas of London we were likely to be near at meal-times, looking at their menus and investigating whether they had allergen information readily available to read then and there. To our delight, we found a few where we knew we could cater for G and where it seemed probable we would also be able to order safe food for M, and we couldn’t wait to put our selection to the test.

Our first was Giraffe, which is just round the corner from GOSH and a popular choice for our post-appointment dinners. When we got to the restaurant, I asked the waitress at the door whether they would be able to cook safe food for M before she had time to find us a table and the response was fantastic. She turned out to be the restaurant manager and headed off in the direction of the kitchen to talk to their chef and find out exactly what our options were. The chef assured us he could cook plain, boiled rice and grill a chicken breast for M without using any oil, so, feeling hopeful that this could prove a success, we found a table to enjoy our first family meal out for 5 months. M was delighted with the plate of food that arrived for him and had no allergic reaction to any of it, reassuring us that Giraffe is a safe choice for the future.

As it turns out, Giraffe was the only restaurant we ate at that was able to cook plain rice for M, but we enjoyed 2 other great meals out and both restaurants were more than happy for M to munch away on his own rice-cakes to accompany his chicken and cucumber. The second restaurant was Bella Italia, a popular restaurant chain found across the UK and we had dinner at their St Martins Lane branch. Again, our waiter worked with the chef to ascertain exactly what could be prepared for M and this amazing plate of food arrived – M joked that he thought they had cut him up a whole cucumber to make up for the lack of variety on his plate. We were also impressed with how much their gluten-free offerings had improved since the last time we ate there as G was able to enjoy some GF garlic pizza bread alongside her GF margherita pizza with pancetta and ham with goats cheese.

My final recommendation is Jamie’s Italian and I can’t begin to tell you how impressed we were with the excellent service provided at their Canary Wharf restaurant. From the greeter who listened to our initial needs to the manager who came to answer our questions before we even got to the table, they were keen to reassure us that they could meet all our requirements. As for our amazing waiter, Tom H, he listened carefully and patiently to what we needed, made sensible suggestions based on M’s safe foods, checked with the chef that everything could be prepared safely and treated M just like any other child eating in the restaurant. He was delighted with the plate of food that arrived at the table as it was presented in the exact same way as G’s dinner and his unparalleled attempt to eat almost all of the food served earned him the same prize that G was awarded for eating her salad – an achievement that we rarely manage at home.

All in all, our trip to London proved to be a fantastic and unexpected success when it came to our dinner plans for our stay. We found 3 restaurants who were prepared to go the extra mile, make the effort and help us enjoy some great meals out. Even better, M had the opportunity to feel more “normal” than he has done in a long time, which, for us, was absolutely priceless.

Back to work for a rest

A tri-umph of rice-themed goodies!

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Recently I’ve been spending my time baking and cooking up a whirlwind as the days ahead have been looking busy. With a day for G and M at the holiday club run at Mike’s work, an appointment with M’s consultant and dietitian at GOSH to review his progress 4 months post-tube and a planned short stay in London to see the sights and to dip our toes into the world of being away from home with NG-tube in tow, a plethora of safe snacks and treats for M were much in need. I prepared rice pudding, rice-flour sugar cookies and rice krispie cakes to satisfy the appetite of my youngest and to reassure myself that we would have some things with us to feed him whilst the rest of us enjoyed some much-missed meals out. I also used the opportunity whilst trialling banana to add some to the mix and made some banana sugar cookies too.

The recipes can be found in the everything-free recipes section and are so easy to follow that next time round, my plan is to be sitting back with a cup of tea, whilst G and M get on with the task of creating their own delicious masterpieces!

Who knew you could make so much from rice, sugar, rice milk and canola oil? Any other suggestions for simple recipes will be very gratefully received!

Hotel Chocolat – New “Dairy-free” Chocolate range (Hint – it’s not!)

Easter weekend

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Last year, Easter weekend was all about…

A slice or two of this…

…several of these…

….and quite a lot of this!

This year, it’s more about this…

Happy Easter!

“Muuummm, what’s for tea tonight?”

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Oh how this resonates..

If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house. Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all. And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears. Does any of that sound familiar or is it just my household?

For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”? For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease. I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar. Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.

Rice-flour sugar cookies

In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding. My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner. It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks. What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.

My victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain. It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef. Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.”

Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment, I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.

Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

The big challenge was always to cook M-friendly food and these days that task has become even more testing. In my opinion, these rules will have little impact on spontaneity or ingenuity – try cooking or baking when you need to avoid wheat/gluten, egg, dairy, soya and potato to name but a few. Ingenuity comes when you try to prepare a meal that makes your child feel that they’re not missing out and that’s something I feel I’ve proved is possible, even for an amateur cook like me.

“Magic never dies. It merely fades away.”

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This time last week one of my heroes died. I was saddened to hear that Discworld-creator and Alzheimer’s advocate, author Sir Terry Pratchett OBE had sadly lost his battle against this unrelenting disease and I was left with the sense that our world had become just a little less colourful as a result. With typical Pratchett-esque humour, a series of tweets, written in his own incomparable style, announced his passing, taking a lead from one of my favourite of his characters, Death:

AT LAST, SIR TERRY, WE MUST WALK TOGETHER.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

Terry took Death’s arm and followed him through the doors and on to the black desert under the endless night.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

The End.

— Terry Pratchett 🖤 🤍 (@terryandrob) March 12, 2015

I first discovered the Discworld and its diverse cast of characters in the late 1980s and quickly found myself reading, and re-reading, his books as I waited, often impatiently, for the next one to be published. My Dad and I shared a love for the Discworld and my Mum often commented that she knew when either of us was reading one of Pratchett’s books as they caused us both to laugh out loud, something no other author had ever done. Our joint appreciation for Pratchett’s fantasy world is one of my fondest memories and even now, I find myself transported back 20 years, to times spent sharing our newest discoveries in his latest novel whenever I revisit these tales these days.

It’s difficult to explain what made Terry Pratchett’s books just so un-put-downable to me. His clever play on words frequently made me laugh out loud – who can forget Twoflowers’ explanation of an “Inn-sewer-ants-polly-sea” in “The Colour of Magic“? His unashamed use of characters or plots from other authors was delightfully skilled – and the 3 Witches in Shakespeare’s Macbeth were not a patch on Granny Weatherwax, Nanny Ogg and naive Magrat Garlick in “Wyrd Sisters“. His sense of humour was evident in almost every word he wrote. I loved nothing more than waiting to see the plot twists and turns that each new storyline would take and spotting the sometimes obvious, sometimes more oblique references to popular culture. And in every step of my adult life; be it at university, in the work-place, waiting at the school gates or in our EGID world, he has oft become the common bond that starts a friendship or fills a gap in the conversation.

In the days following his death, Terry Pratchett’s fans have given him tribute by taking ideas from his books to create a fitting memorial. The first was a petition asking Death to “Reinstate Terry Pratchett” because Terry himself said that “There are times in life when people must know when not to let go. Balloons are designed to teach small children this” and already nearly 30,000 people have added their names to this request.

The second took an idea from his 33rd Discworld novel, “Going Postal”, which saw the advent of a communication system, somewhat comparable to the internet. When a key character dies, a message bearing his name is sent down the lines on an unending journey to ensure that it is kept alive indefinitely because “A man is not dead while his name is still spoken.” Keen Pratchett fans have developed code that is being embedded on websites to ensure that his name is similarly forever encoded on the internet.

In the past few days, I have started to revisit his books, many of which reside on my book-shelves, and have found myself to be once again amongst old, familiar friends. The humour never fades and with each reading, I discover a small nuance that I hadn’t noticed before. Rincewind, Granny Weatherwax, Captain Vimes and the Discworld have been a part of my life for nearly 30 years and I look forward to introducing both G and M to these adventures in the not-too-distant future.

“No one is actually dead until the ripples they cause in the world die away…”

– Reaper Man

Just one more dress-up challenge!

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

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

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

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

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

Courtesy of blog.partydelights.co.uk

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

9th celebrations

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“Sometimes,” said Pooh, “the smallest things take up the most room in your heart.”

– AA Milne

I can hardly believe our beautiful, cheeky and courageous little man has turned 9. He continues to amaze us and I have no doubt that this year, just as in years past, he will carry on stepping out bravely with his indomitable spirit intact. Happy birthday little bean – we love you.

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…to this

Piece of cake

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These photos are of the supplies I needed to create this year’s birthday cake masterpiece for Master M as, after all, this had to be a birthday cake like no other I’ve ever baked before. In the same way that I had discussed my plans for the food we would serve at their Cluedo party with M, we sat together to talk about the various options for his birthday cake. I could bake a “normal” cake for him to give to his friends, I could use polystyrene dummy cakes to create an authentic-looking, but totally M-friendly cake or we could try something completely different. A friend had suggested using small bottles of 7-up to create a tiered cake and then giving every party guest a bottle to take home, which I thought an inspired idea as it’s one of the few things M has been able to enjoy since his NG-tube was passed, but M disagreed. He preferred the idea of the polystyrene “fake” cakes and we headed off to the shops over half-term to source the cakes, decide how many tiers he wanted and get all the art supplies I might need.

Every year I try to create birthday cakes that either echo the themes of the parties themselves, be that mini-golf, magic or minions; or that are innovative and something the children have never seen before, such as last year’s pinata cake for G. This year’s Cluedo theme offered me a wealth of ideas and I just needed to decide how to put them into action. I settled on a black base layer and ever-grateful to avoid the nightmare of icing a free-from cake, attacked our 3 tiers with a sturdy brush and bottle of black paint. “Cakes” fully covered, I liberally sprinkled some silver glitter over them all before the paint dried, positioned the silver 9 on the top and added an emerald green ribbon trim for that touch of old-fashioned glamour and to fit with M’s role as party host, “Captain Emerald”. I stuck the tiers together using PVA glue and then inserted some wooden skewers, just to make sure there was no chance the cake would fall apart before the day itself.

Next came the fun part of adding the decorations. I had previously printed out silhouettes to use for the characters and images for each of the murder weapons and had a number of them left-over after I had prepared the cards for the party itself. Choosing carefully, I glued the weapons to the bottom layer and a selection of characters to the middle layer, making sure I included the image of G’s character, “Countess Pearl”. My final step was to stick Captain Emerald’s silhouette to a piece of black card that I had already covered generously with more silver glitter and added this, leaning against the top-tier of the cake, before leaving it all to dry.

M’s cake sorted, I moved on to the preparation of a cake for G. Much as I had enjoyed exploring the “crafts” side of my personality, this was the moment I’d been waiting for since Christmas. Not so much the baking of a cake, though I love decorating birthday cakes to wow my children, but more because I finally got to use the best Christmas present I had received and one that was completely unexpected. I’ve been drooling over the KitchenAid food mixers for years, imagining one gracing my kitchen counters and last year started saving towards buying one of my own. To my delight, and absolute surprise, my wonderful Mum invested in a Ice-blue model as my Christmas/birthday present and it’s been sitting in the kitchen, taunting me daily with its absolute beauty, whilst I’ve waited for a chance to take it for a test-run. All I can say is thank goodness I needed to whip up 24 G-friendly cupcakes as well as the birthday cake itself as I flew through the first task and loved every moment spent doing it!

My birthday cake challenge was easier this year as although G has allergies of her own, I was able to use eggs, an ingredient I haven’t baked with in over 3 years. I used a simple gluten- and dairy-free recipe and then split the mixture between 5 bowls. Inspired by both the colourful characters in the Cluedo game and a recent episode of Great British Comic Relief Bake-Off, I added 5 different food colourings – 1 to each bowl – and then marbled the cake mix in the baking tins. As I waited for the cakes to bake, I turned to my trusty laptop to search out some ideas for how to decorate G’s Cluedo cake and settled on recreating the board itself out of icing. Working late into the early hours of Sunday morning to finish this final part of the party preparations and when I finally fell into my bed at around 3am, I was delighted with the end results.

The big reveal of my “showstopper” cakes was a huge success. Both G and M were thrilled with their cakes and liked the fact that even though they were completely different, they both fit our Cluedo theme perfectly. The cakes had pride of place at the centre of our Dessert buffet table and were a real talking point for children and parents alike. A job well done, though I’m not rushing to make 2 cakes for the same occasion again any time soon – my nerves just can’t take it!

7 years to diagnosis

Searching for an answer

Category Archives: Chronic Illness

Dinner Plans

Back to work for a rest

A tri-umph of rice-themed goodies!

Hotel Chocolat – New “Dairy-free” Chocolate range (Hint – it’s not!)

Easter weekend

“Muuummm, what’s for tea tonight?”

“Magic never dies. It merely fades away.”

Just one more dress-up challenge!

9th celebrations

Piece of cake