May your Christmas be filled with love and laughter; times of happiness and of reflection; family and friends…
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…and may 2015 be a year that brings new hope, understanding and peace.
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Merry Christmas!
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Three square meals a day
Last week cooking at school soared to a whole new level and, I have to confess, so did my heart rate when I first heard about it. I love the fact that both G and M have been able to participate in cooking at school this year and have been involved every step of the way to ensure that they’ve been able to eat whatever they’ve cooked – be that by providing adapted recipes, suitable ingredients or, on occasion, a friendly alternative for them to enjoy after cooking with “normal” ingredients. A stream of constant communication between myself, the school secretary, both class teachers and the SENCo has been key to this success.
This time round, however, the plan completely changed. The Square Food Foundation were coming into school to cook with the children, one class at a time and when I asked the obvious question – “What are they cooking?” – the school had no idea what was on the menu. The letter home had asked parents to list any food allergies as they knew that some could be accommodated, so I felt confident that G would be okay, but I wanted to understand whether M would be able to taste the food that was being taken back to the classroom after the session, or if I would need to come up with a back-up plan for him. The Headteacher said that he would be contacting the Foundation himself to ask the question and, armed with the full list of M’s current allergies, he made the phone-call. To my delight, he was reassured that M would be able to take part fully in the lesson and I agreed to be a parent helper for M’s class to make sure that all ingredients used were definitely safe.
The day eventually came, we got to school and here is where I need to make a very big apology to the organisers from the Square Food Foundation. I caught sight of the tables and ingredients set up in the school hall and my heart sank. I saw piles of baguettes, cartons of natural yoghurt and boxes of eggs; and I doubted what they had said. At first glance I couldn’t see how M could possibly be able to taste the food with those ingredients involved and we started the lesson with me quickly trying to work out if I could fit in a quick dash home to pick up something M-friendly for the tasting afterwards. However, I was wrong. As they discussed the different ingredients they’d be using, the children were asked what they thought they could prepare using the eggs and oil:
“Fried eggs“….”something yummy“….”something I can’t eat“
(you can guess who that last response came from)
“Ah yes. You must be the young chap with food allergies. What can’t you eat?“
As I reeled off the list, the man in charge sagely nodded his head, “Then you will be in our houmous team” and with that comment, all become clear. The plan was to prepare 3 different dips – houmous, aioli and tzatziki – and assorted crudites during the 30 minutes cooking time. The class was quickly divided into 3 equal groups and sent to 3 banks of tables, where all the necessary ingredients and equipment were ready and waiting for them. The children had an amazing time. They were trusted to use sharp knives to chop the vegetables and crush the garlic. They drizzled the oil, squeezed the lemons and ground the cumin seeds. 
Finally, they mixed the ingredients together and plated up their finished houmous and crudites for the class to admire and enjoy.
All 3 dips looked amazing and I am assured by M that the houmous was delicious. It was a great morning’s activity and I know that G enjoyed her chance to make aioli later in the day too. So it’s a very big “Thank you” to all the members of the Square Food Foundation who came to the school, taught some new skills to the children and made no fuss about meeting the needs of M in such an amazing way.
Allergy Adventures
In my recent blog about the Allergy and Freefrom show in London, I mentioned in passing the wonderful Allergy Adventures, who M was keen to visit during our day at the show. We first discovered Allergy Adventures at last year’s show and were so impressed with their products that we’ve kept going back for more.
Allergy Adventures was set up by the lovely Hailey, who explains her reasons for starting the company on her website. She produces beautifully illustrated children’s books that take the reader on a magical journey inside their lunchbox, accompanied by a character with the same food allergy as them as they look for safe foods to enjoy. Each book focuses on one main allergen and teaches the child “how to tell others about their allergy and stay safe around food.” These books are bright and colourful and drew M’s attention last year as we wandered the stalls of the Allergy show. Whilst he and G joined in with some paper-plate crafts – an absolute godsend to any parent who wanted a break from complaints of aching legs due to the amount of walking needed – Mike and I flicked through the books.
Unfortunately, due to the extent of M’s allergies, there isn’t one particular book that we could buy for him to enjoy and to share with his friends, but there was another product that caught my eye and which I snapped up in an instant. These fantastic “stickers” have proved invaluable in labelling any pots, products or boxes that go into school for M’s use. His lunchbox, water bottle, medicine pots and individual tupperware containers all have a sticker, indicating that the contents are M-friendly and for his use only. Even the children’s swap-boxes have a couple of “Hands off” stickers, so that everyone knows that they are specifically for G and M. What I particularly love about these stickers is that they create a positive association with his food for M. Rather than focusing on the “free-from” label and listing what he can’t eat, they instead stress that the food is special because it belongs to M or G and not to anyone else – a great message for my allergy-challenged boy.
Earlier this year, Allergy Adventures also produced an amazing allergy-friendly cooking guide, which lists out easy substitutions that can be made when baking or cooking for someone with food allergies. Not only does it make sensible suggestions about replacement products to use, but the notes highlight key areas to consider when using alternatives. Best of all, this has been produced as a free resource and can be found by following this link. With plans afoot for creating more resources to support children with allergies both in hospital and in schools, this is definitely one to watch.
After our first hour or so at the show, we finally listened to M’s request and headed for the Allergy Adventures area. Once again both G and M created paper-plate masterpieces, whilst resting their aching feet and Mike and I had a break from their moans, for a few minutes anyway. I grabbed the opportunity to catch up with Hailey, who I chatter with on Twitter and 
also the fabulous Vicki, the FreeFrom Fairy, another Twittersphere friend. Once G and M had finished their creations, they were captured on film for the Allergy Adventures video all about the 2014 Allergy show. There’s really nothing more to add. This is a great set of resources for anyone with a child with food allergies and I would really recommend you spend some time exploring everything Allergy Adventures has to offer, it definitely won’t be time wasted.
HAPPY CANADA DAY!
To our friends and family from Canada, I hope you’re enjoying your 147th birthday in style!
And now, the end is here…
Today marks the end of an important week for our family. It’s been an interesting week of sharing more about life with EGID with friends and colleagues as well as reminding ourselves of just how tough it can be to follow M’s restricted diet. I’m not usually a snacker, but this week, perhaps because it hasn’t been easy to just go to the cupboard and grab a handful of whatever I’ve fancied, I’ve wanted to snack at the drop of the hat. Even with our cupboards and fridge full of M-friendly foods, the options for breakfasts, lunches and snacks are incredibly limited and I’ve found myself returning to the same things, time and time again because there really is no choice.
This week, a fellow EGID and FABED Mum put together this amazing video to mark National Eosinophil Awareness Week, which includes some of the brave children we’ve had the privilege of getting to know during our journey to get a diagnosis for M. Some of you may already have seen it – the statistics suggest it has already been viewed over 9,000 time through the social media – but take a look again: these are the faces of children and families who battle EGID on a daily basis. These are children like M and families like ours:
One day left to go in our mission to “eat like M” for the week and perhaps the hardest food challenge of all…a BBQ social at a friend’s house!
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A Quintessentially English MayDay Holiday
Picture, if you will, the scene:
Glorious sunshine in a brilliant blue sky with the merest wisps of cloud floating overhead; the gentle strains of traditional music playing in the background; and the company of good friends, all set against the idyllic backdrop of an English stately home nestling in the quiet beauty of the Cotswolds. What better way to spend the May Day bank holiday than this?
And, in all truth, the reality didn’t differ too much from this perfect setting. So, we might have experienced some moments of bitter winds interchanged with the glorious sunshine and the sky might have more frequently been grey than blue. It’s also true that the music may have been drowned out on occasion by the non-stop giggling and high-pitched squeals of my terrible two and their companions; but the day was fantastic.
We celebrated May Day in a traditional Victorian manner at the amazingly beautiful Sudeley Castle and it encompassed everything your quintessential English May Day should; after all, where else in the world could you combine Morris dancing, chimney sweeps, Punch & Judy, Penny Farthings, Maypole dancing and cups of tea in such a seamless way? We spent the day visiting with G’s wonderful godmother, C and her fantastic family and enjoying everything Sudeley had to offer.
Who knew that M would prove to be quite so adept at dancing round the Maypole, astounding and delighting the Morris dancers, who couldn’t quite believe he’d never done it before: and we couldn’t have picked a better place to visit for G, who was enthralled with the Tudor history as it’s her topic for the term.
We enjoyed a peaceful and amazing day discovering this hidden treasure and wouldn’t hesitate to make a return visit when we’re next in the area.
Play-date anyone?
It is amazing how something so simple can make such a big difference to a small child.
As M started a new school this September and is still getting to know the children in his class, we decided to invite a new friend home for tea after school. M chose C, another child who’s new to the school. I ambushed his Mum a couple of weeks ago to broach the subject of whether he’d like to come home for a play, eventually got round to passing on my contact details and finally settled on a day.
Courtesy of gsapublishing.com
This Tuesday I left work promptly to make sure I was in the right place at the right time to pick up M, C and G. The weather held so they could all burn off their energy and excitement by bouncing on the trampoline and tearing around the paddock like wild things. I chuckled quietly to myself as I heard the 3 of them discussing the ghosts in our house and heard C promising that he would bring back his ghost-detector from home once he’d fixed it – a child with an imagination to match M’s, I thought. I fed them everything-free fish fingers, potato wedges and a variety of veggies determined by the preferences of each individual child. We even survived M having a soiling accident and successfully changed him without C being aware it had even happened.
Nothing particularly out-of-the-ordinary or revolutionary, you might be thinking and you’d be right. The bit that made all the difference came when C’s Mum came to pick him up.
“Thank you so much for having C home for tea,” she said, “he’s the happiest I’ve seen him since we made the move.” And then she uttered the magical words, “Would M like to come home to ours for a play-date next Tuesday after school?”
Before I’d even had a chance to reply, she continued “I can cook just plain chicken drumsticks with vegetables for them for tea, or you can pick him before tea if you’d prefer.”
This woman, who has swiftly become a new friend, had unwittingly just rocked my world. In the last 2 years, since we embarked on our free-from journey with M, he has been home to friends’ houses just twice. The prospect of feeding my food-intolerant child was too daunting to so many of the Mums I’d got to know during M’s first year of school that they just stopped inviting him back after school. One Mum had even told M three separate times that she’d talk to me about arranging a day and what he could eat, and then never bothered to make that effort. Needless to say, that was a friendship that quickly fizzled out as M couldn’t understand why the promised invite never came.
So, for someone who’d known us approximately 5 minutes to take M’s situation and tricky diet completely in her stride and willingly offer to have him home from school, has felt like a real blessing. We’ve got to iron out a couple of wrinkles that are playing on M’s mind – chiefly his medicines and the whole “what if I have an accident whilst I’m at C’s house Mummy” concern – but I’ve got those sussed and I think M is reassured that every eventuality is covered.
Which leaves my 7-year old eagerly anticipating the opportunity to fix the broken ghost-detector – “though I’m not entirely convinced he’s not just making the whole thing up Mummy” – and me as one happy Mummy.
*I’ve just found this article “I’m not neurotic, my kid has food allergy” which helps you understand even more about how important this sort of compassion can be to a family supporting a child with food allergies
Fabulous FABED!
We have once again enjoyed a busy weekend. Thanks to the wonderful organisational skills of the dedicated group of parents who set up FABED back in 2005 to support parents and families of children with EGID, we enjoyed an amazing weekend at Legoland Windsor.
What made this weekend so special was that it was organised with our EGID children in mind. A full day to meet other families who are carrying the same load as us and who know how it feels to be fighting a never-ending daily battle that most of our friends just can’t comprehend. An opportunity for M to meet children who are just like him, suffer from the same condition and have to live with multiple food-allergies to a greater or lesser extent. A chance for G to meet others whose siblings are constantly in hospital, or making hospital visits and who are often the focus of so much attention.
We met bright and early on Saturday morning and were delighted to see that there were in the region of 40 families there, all of whom had at least 1 child with EGID, though we got to know one family where all 4 children were affected to some degree. This was our first FABED event, but were instantly made to feel welcome and amongst friends. We recognised some familiar faces from the Allergy Show a couple of weeks ago and both M and G instantly made some new friends.
Unfortunately M suffered a bad day, but we had the advantage of being able to seek refuge in the suite at the amazing Legoland Hotel. There was a dedicated medical room to provide privacy for those who needed it for feeding or medical purposes. The Suite itself had tea and coffee-making facilities for the parents and a play area filled with Lego for the children to enjoy. We took an hour and a half out of the day to give M some much needed downtime and the children enjoyed attempting to build the biggest tower possible with some of their new friends.
The evening showed just how much hard work and thought had gone into making this an unparalleled get-together. A buffet dinner was provided for the FABED families, with full details of all ingredients used to prepare the dishes and options available to cater for even the most difficult of diets. Those children unable to eat were able to spend time in the play area, which was next door but out of sight of the food. M was delighted to be able to choose from such a wide selection of foods and we were reassured that we knew what each dish contained and what he could and couldn’t eat.
As soon as we heard about this day out, we knew we’d be going along. It would have taken something extreme to keep us away. M feels so alone in his allergy world that the opportunity to show that he really isn’t on his own and to allow him to chat and get to know other EGID sufferers was one that we couldn’t turn down. He made particular friends with young R, who is a year older, but feels the same emotions and frustrations as M. They were able to have an honest chat and M values this new friend who is “just like me Mummy, but he can eat even less, sometimes has to be tube fed and has accidents too.” R’s big sister, F, was a great source of comfort to G also as they share the same experiences of a younger brother with EGID as well as struggling with their own food allergies.
I also got to meet the delightful mumannie123, who writes the blog, Food for Thought: Boweled over by food allergies, recipes and advice. We have got to know each other a little over the last couple of weeks through our respective blogs, so it was wonderful to finally put a face to the name and spend some real time chatting. We have discovered that we live in the same part of the world, so I’m looking forward to perhaps being able to meet in person as time allows, as there is nothing quite like having a friend who understands what you’re going through from firsthand experience.
We made the decision to make a weekend of it and stayed the night at the Hotel in an Adventurers Room. The lego models and details in these rooms are astounding:
This weekend has been a truly fabulous weekend and my heartfelt thanks go out to FABED and Legoland Windsor for accommodating such a complex range of needs and ensuring that so many families were able to enjoy as normal a day out as possible when dealing with illness. To this family, at very least, it has made a huge difference and has given us a great resource for support for this journey that we now know we are not travelling on our own.
7 years to diagnosis 