Tag Archives: health issues

That’s what friends are for

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Over the last couple of months, I’ve been focusing my blog on new recipes, holiday travels and weekend adventures, but of course, in the background of all that, there have been the ongoing food challenges, unavoidable medical dramas and inevitable hospital appointments that are very much part of our everyday life. Those are the bits that take a little longer to process as we adjust our expectations and plans for the coming months, and understandably are not always the easiest parts to share. However, whilst we’re picking our way through the discussions of our latest appointment, I wanted to share this story with you all.

You see, our most recent GOSH appointment was declared “…the best hospital appointment EVER!..” by M for reasons that had absolutely nothing to do with what his consultant or dietician said, discussed or did; and absolutely indexeverything to do with some amazing friends he has met and made since our journey to a diagnosis started over 4 years ago.

We arrived an hour early for our clinic appointment, something that is nothing short of a miracle given the comedy of errors that unfolded as Mike attempted to connect with M and me mid-route as we headed into London by train. Let’s just say that realising your wife and child are not on the train you’ve just boarded and which is now leaving the station, but instead the one that’s just pulling into that self-same station behind you, probably doesn’t rank very highly in Mike’s top ten of successful travel arrangements, but we did eventually meet up and safely got to the hospital with plenty of time to spare! I knew that good friend and fellow EGID Mum, R was also there with her son, A, who has become great buddies with M since we were in GOSH last Christmas and had already tentatively arranged an attempt to meet up if at all possible. As we trundled through to the waiting room, I spotted R across the room and to my delight saw she was chatting with another old FABED friend of M’s and his Mum, L.

These 3 boys were thrilled to all be at clinic together and spent the next couple of hours sharing their electronic devices, playing games and laughing. Being in clinic with 2 good friends helped occupy M’s time and the lengthy wait just flew past as they entertained each other and we parents took the opportunity to do some catching up of our own. All 3 are on extremely restricted diets and represent beautifully the 3 different faces of elemental feeds: A who bravely drinks his daily; M with his NG-tube; and R with his PEG. It was wonderful to see, especially as all 3 were looking fit, well and really no different to other boys of their age. They looked as 3 friends should do: relaxed, happy and comfortable in each other’s presence.developing-friendship-machines-working-word-building-up-concept-construction-black-alphabetic-letters-forming-isolated-31326540

I’ll be honest, as amazing as it was to watch these 3 lads pick up where they had left off, after however long it has been, without missing a beat, it was also heart-wrenching to see them spending time together in the hospital waiting room, knowing that the reason they were there was a chronic illness that has had a long-reaching impact on each of their young lives. But; in that most perfect of moments for them all as they sat united on the waiting room floor, we also realised just how blessed we are to know such amazing people and how important it is for M to believe that he’s not on his own.

Teal Pumpkin Project™ 2015

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My first real experience of Halloween came during my time as a student at Ottawa University back in the 1990s, when my Canadian friends took pity on a poor uninitiated Brit and introduced me to what is truly an unmissable event on the North American calendar. Every shop has a vast array of costumes to choose from, porches are adorned with carved pumpkins galore, houses are bedecked in lights and decorations to rival those put up for Christmas and entire neighbourhoods take to the streets on the night itself, pillowcases in hand, to offer the traditional “..trick-or-treat..” to the eager participants. Likewise, G and M have fond memories of their own P1000386Canadian Halloween experiences with cousins and friends and their outfits are still hanging up in M’s costume wardrobe as a permanent memento. It was, understandably, a big part of Mike’s childhood, but is not an occasion I ever remember marking in my own upbringing and at home, here in the UK, I can’t quite reconcile myself to the idea of sending my children out in their ghoulish fancy dress to knock on random houses in our village to ask for treats, when, for the other 364 days of the year, I’m drilling into them the mantra to not accept sweets from strangers. Whilst we might not be avid Halloween fans in our household, I know it is a custom that is becoming more and more popular around the country.

Of course, for children with food allergies, trick-or-treating takes on a whole new meaning as frighteningly they risk their health by collecting sweets that could unwittingly trigger an allergic reaction. This year in particular, I am glad that my children have no expectations of going out on Halloween as with M’s slim pickings when it comes to safe foods, I would have to take away every single sweet he was given and swap it for a M-friendly alternative; and would have to do exactly the same to protect G from her allergies too. However, thanks to Food Allergy Research & Education (FARE) in the USA, a relatively new campaign helps raise awareness of food allergies during Halloween season, seeks to ease parental concerns, promotes inclusion of all trick-or-treaters and asks households to pledge to participate in the Teal Pumpkin Project™.teal-pumpkin-project-allergy-friendly-Halloween

This national campaign was launched in 2014 and saw households from 50 states and 7 countries get involved in the Teal Pumpkin Project™ and FARE is hoping that this year an even bigger movement will happen with a target 100,000 households pledging to take part. The idea is simple and incredibly effective: if a household is prepared to provide non-food treats for any trick-or-treaters likely to call, they are asked to paint a pumpkin teal and place it in pride of place in front of their home. Their website also has a free printable sign to indicate there are non-food treats available, which can be downloaded here. Even though this initiative was originally launched in the USA, the project has gone viral through the various social media platforms and allergy parents around the globe are making the pledge for this October 31st.

So, what can you do to be involved? It’s easy, it really, really is and if you’re planning to actively celebrate Halloween this year, I would ask you to please consider taking part:PTPP-2

  • Don’t just buy sweets to hand out from your door, but take a little time to consider those who can’t enjoy these treats and buy some non-food treats for them too. The treats don’t have to be expensive: trading cards, stickers, glowsticks or stationery will all be gratefully received, so visit your local pound or dollar store and see what your money can buy
  • Once you have your non-food treats, paint your pumpkin teal and put it out where it can be seen. There will be many who won’t understand the significance, but trust me when I say almost every allergy parent will know and will appreciate your effort
  • Visit the FARE website and print out one of their posters or signs to put up in your windows to make it clear you’re taking part in this year’s Teal Pumpkin Project™
  • Take the pledge via the FARE website and encourage your family and friends to do the same

And remember, your involvement could make a big difference and ultimately save the life of a child like M. 

More than a smile

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It all started with a simple compliment that was probably given without too much thought, almost a throw-away comment, but the words, planned or not, had a profound effect months ago and still do. I had walked M and G to school after a particularly difficult night with M,  following on from a couple of really tough days and I was tired and emotional as I left the school grounds. Passing their Head at the gates, I gave a small smile, a nod of my head and a quick reply to his question about how M was feeling. His next words stopped me in my tracks and even now continue to resonate in my memory, especially when things are feeling a little more challenging or tiring than normal:

“I just wanted to say that I admire your constant smile and upbeat attitude about everything. Your positivity is reflected in the way both children deal with whatever’s thrown at them in the classroom and in life.”

My garbled response was a variation of my stock answer:

“What else can I do, but smile? If I didn’t I might end up crying, but that won’t help M or G or me; and it won’t change the way things are…” (I shrugged) “…besides, if I don’t smile and get on with things, who else will? That’s my job as Mum.”

“That might be true. but I know a lot of people who wouldn’t be able to smile about it. They’d feel hard done by and resentful of the hand they’ve been dealt, their response would be focussed on complaining – that simply isn’t you or the children.”

I don’t know if the exhaustion of a failed food trial and a bad night’s sleep had made me more sensitive to the world around me, but his words had an impact that I felt resonating deep in my soul and gave a lightness to my step that certainly hadn’t been there 10 minutes earlier. All the way home, with unexpected tears in my eyes, 11987081_10153905230214523_3086822525667980358_nI pondered what he had said to me. After all, am I really that unusual in my response? I don’t feel particularly unique in my attitude and, believe me, I can certainly have a moan with the best of them. I suddenly had reason to reflect on how I present our situation to the outside world and why I smile, even at the most difficult of times.

I smile because, despite everything – the difficult pregnancy, the premature birth, the EGID diagnosis and the decision to tube-feed – I have a lot to celebrate. I have 2 amazing, beautiful, cheeky, intelligent children, my children with super powers, who astound me regularly with their unexpected insights into the world and make me smile. Whilst I might not be able to say truthfully that they are both “happy and healthy”, the wish of every new parent as they await the arrival of their latest addition, they are growing into young people I am proud to say are mine and fascinating individuals in their own right. They might have their struggles to manage, but they are here with me and every day with them is one more opportunity to cuddle, to kiss and to share their lives. As a family we have a lot of fun and there’s always a reason to have a giggle, laugh out loud and just smile together, even at the darkest moments.

Of course the truth is that, in many ways, my smile is also much, much more than a reflection of the joy I feel when spending time with my nearest and dearest. It is also my most effective disguise. If you look hard enough, there will be times when you might notice that the smile doesn’t quite reach my eyes or that my smile is perhaps a little bittersweet. Those are the days when it’s been hard to fight the urge to crawl back under the covers and pull the duvet over my head. The days when getting up, getting dressed and just being is a massive success.12049331_865332913546071_5149015929277272601_n The days when it’s been hard work to put one foot in front of the other and not just get started, but keep going too.

And I’m not alone. Out there in the real world are a huge number of parents who are facing the same struggles, fighting similar battles and often surviving a reality that is far harder than the one we face each day. I have been privileged to meet and get to know some of these superhero parents through our shared experiences and I see that same positive and undeniably brave approach to life reflected in each and every one of them. They are often the parents who just a tiny bit more weary at the school gates, a little more contemplative at the end of each day and a lot more determined to make the most of every moment they have because they know just how precious those minutes are. They will be the ones who will shrug off your questions about their well-being and turn the focus firmly back to you and yours. Not because they don’t want to answer, but because they know that if their emotional floodgates are opened, it will cause a tidal wave that will engulf them and make keeping their heads above water just a smidgen harder to do. And they will be the parents that tell you they don’t consider themselves particularly special or outstanding or unique because this is their life, they know they can’t change it or their children and nor would they want to. M might end up being the cause of many more grey hairs than I’m ever going to admit to, but I wouldn’t have him any other way; he wouldn’t be him any other way; and those parents’ love for their children transcends the unexpected difficulties they’ve been presented with.

I want to finish with a beautiful thought that a friend shared on FB when we were reflecting on this thought-provoking blog post and our own life experiences as special needs parents:

“That’s the thing…we weren’t given these special children because we are special, they make us that way with how amazing they are.”

superhero

Afternoon tea at the Celtic Manor

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ladies-and-redwineAt the end of last year, not long after M had been discharged from GOSH, my Aunt celebrated a milestone birthday and my Mum started talking about a trip to the Celtic Manor in Newport for a celebratory afternoon tea. Fast forward 9 months that have taken us even closer to her next birthday than the one we were actually celebrating and with Mike organised at home to do the school-run and sort the children for the day, the three of us finally managed to become “ladies who lunch” as planned. We booked a table for their Autumn Afternoon Tea at 2pm and arrived a little earlier* (*for little, read 1 hour) than necessary due to my Mum’s anxiety of being caught up in the Rugby World Cup traffic and the pressing need to arrive early, no matter where we’re going.

We spent the first 20 minutes wandering the grounds and browsing in the shops before kicking our celebrations off with a glass of prosecco and a chat until it was eventually time to venture a little further to the Olive Tree Garden Room. As a family we are now well-versed in the world of disability and additional needs due to not just EGID and multiple food allergies, but also the presence of T1D, Parkinson’s Disease and Multiple Sclerosis amongst our members. Everywhere we go is assessed on their ability to cater for all these needs and I’m sorry to say that here the Celtic Manor failed at the very first hurdle. The Olive Tree Garden Room is a 20150918_142930stunning place to relax and enjoy the treat of an afternoon tea, but from every approach it is only accessible by steps and whilst a portable ramp is available, the staff were slow to offer help when it was so obviously needed.

These things aside, we made it to our table in one piece and couldn’t wait to get started on the tempting and extensive menu that formed our afternoon tea. The meal began with a glass of warm Winter Pimm’s – delicious – and the Harvest hamper filled with 4 bite-size savoury treats that tantalised our taste-buds and gave us an inkling to what to expect for the rest of the meal. The detailed menu impressively showed the allergens present in each of the different items on offer and I was pleased to see that gluten-free alternatives were available. On this occasion, we didn’t test their allergy offerings, a real treat for me, but I’d be keen to return to see whether they could cater for G with her gluten- and dairy-free needs and if they favourably compare to the “normal” dishes. 20150918_142925The sandwiches that followed were equally good and sized perfectly so that we could manage the cakes that came next.

The cakes were a sight to behold and it was really difficult to decide exactly where to start before trying each and every one. It was at this point that we all were finally beaten – well 5 cakes and pastries, however mini, is an awful lot for one person – but the Celtic Manor is obviously well-used to this experience and were able to offer us cake boxes to transport those extra ones home to enjoy at a later time. I cheerfully packed my remaining 2 away and eagerly looked forward to the final part of our tea, the scone. After all the other mouthwatering courses, I couldn’t wait to taste the scone with jam and clotted cream, which has to be the best bit of any cream tea in my opinion and I was confident that this one could be nothing short of exceptional.

Sadly I was very wrong and we were massively disappointed with the freshly baked Cherry Bakewell scones that arrived. The scones appeared to be so freshly baked that they were, in fact, under-done and tasted stodgy and sticky in the mouth. The Cherry Bakewell embellishment was a complete step too far and did nothing to add to the taste experience as it consisted purely of a sticky cherry syrup thinly spread across the top and a few flaked almonds added for effect. I struggled to eat it and gave up half-way through as it really wasn’t edible. To make matters worse, our disappointment with the scones was compounded by the poor quality of the tea served with the meal. I’m not sure who had trained whoever made the tea, but my Mum’s Earl Grey was the colour of a strong builder’s tea when poured and even our request for a second pot and then a pot of boiling water, did little to improve the flavour. In comparison, the coffee I had was fantastic and my Aunt much preferred the coffee to her original and fairly unpalatable English Breakfast tea.

I would love to be able to say that my review ends there, but I just can’t. Scones and tea aside, even though they’re fairly integral parts of any afternoon tea, the rest of the food was delightful and we really enjoyed everything else we had to eat; but – don’t pretend you didn’t sense there was a “but” coming – the service we received just didn’t match our expectations of the Celtic Manor. The staff members were not overly attentive and I found myself almost constantly having to grab someone’s attention each time we needed anything, however small. betterThey forgot to take our orders for tea and coffee and excused this surprising fail by blaming it on the “..very busy room..”, even though it was never more than 1/3 to 1/2 full during our visit. I flagged down our requested additional pot of hot water when it was delivered to the next door table, helped myself to extra knives from an empty table behind us when our clean cutlery ran out and even ended up asking the staff to clear our table of empty glasses and dishes to allow space for the cake stands, teapots and cups and saucers still to come.

The last straw really came when I asked for a clean cup for my Mum after her second pot of Earl Grey was delivered to the table and the waitress reached over and removed her cup. Just. her. cup. Not the saucer, not the spoon and certainly not all 3 items together, but the cup on its own and swapped it for a clean one, still swinging the old cup with its remnants of tea sloshing around it from her other hand!

20150918_145226Let me be clear: in no way did this spoil our enjoyment of the afternoon at all and in fact it gave the three of us a fit of the giggles, much to the bemusement of our unsuspecting waitress. We loved our table, even though it was tucked away in a far corner, as it gave us an uninterrupted view of the rest of the room and we all enjoy participating in a spot of people-watching whenever we can. However, given the Celtic Manor is described as a “luxury resort” and has 5-star status, the service was not what we had been expecting or hoping for our birthday celebrations. Would I recommend a visit? Yes, I think, but be warned about their scones and hopefully their service might have improved by the time you get there.

Merlin’s Magic Wand

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Most of you will know the company Merlin Entertainments, who own and run attractions around the UK such as Alton Towers, the London Eye, Warwick Castle and Madame Tussauds, to name but a few; but how many are aware of their linked charity, Merlin’s Magic Wand? It’s certainly not an organisation I’d ever heard of and knew nothing about until the start of 2015. This charitable organisation was set up in 2008 by Merlin Entertainments to “…deliver magical experiences to seriously ill, disabled and disadvantaged children across the world…” and focus their work in 2 main areas:

  • Magical Days Out at Merlin attractions – over 170, 000 children and their families have been able to enjoy a memorable day out through the provision of entrance tickets and, where necessary, travel grants
  • Taking the Magic to the children – recognising that some children are unable to visit due to the nature of their illnesses or disabilities, Merlin has provided areas such as a “Fantastical Castle play area” in the CHASE Hospice, Guildford and a “Legoland play area” at the Kolding Sygehus Children’s Hospital in Billund, Denmark.

At the start of this year, not long after we’d arrived back home following M’s stay in GOSH for his NG-tube and elemental diet, I heard about Merlin’s Magic Wand and decided to investigate a little further. I wasn’t confident whether M would even be eligible for tickets or not, but thanks to their incredibly informative and easy to navigate website, 20150831_073635I decided to give it a go, working on the principle of nothing ventured, nothing gained. Both children are massive fans of Legoland Windsor and had been clamouring for a visit this year, so I selected that as our number 1 choice and, without saying a word to either of them, sent back the form and sat back to wait and see.

Within a couple of weeks of submitting my application form on-line, I had an e-mail to tell me we had been successful and that 4 entrance tickets would soon be winging their way to me. Unfortunately, a slight delay in their arrival meant we couldn’t use them for our Star Wars trip on May 4th, but the problems were soon resolved, the tickets arrived and I pinned them to our kitchen noticeboard, waiting for the right time to put them to good use. A busy summer has meant that finding that right time to go proved more challenging than we expected and we finally settled on the August bank holiday Monday as something of a “last hurrah” for our summer holidays and before G started her new venture of secondary school.

We set off early on that Monday morning, driving through the pouring rain, confident that, if nothing else, the park would not be too busy, or, at least, not as busy as it might have been if there’d been glorious sunshine. Our travels to Florida last year alerted us to the existence of ride access passes and we were delighted that the same exist at Legoland Windsor. Armed with a letter from our GP confirming the reasons we needed this pass, we headed to guest services as soon as we entered the park. 20150831_114557This is a “benefit” that has obviously been subject to some abuse over the years and Legoland Windsor has stringent checks in place to ensure that only those who genuinely need this assistance receive it.

Our day there was as fantastic as ever and we enjoyed all of our favourite rides (some of them twice!) as well as trying out the brand new Mia’s Riding Adventure, one that G was desperate to go on. This isn’t one for the faint-hearted and there was a slightly panicked moment when we discovered that M’s body-weight wasn’t quite enough to keep the seat back in a comfortable, but secure position for him ride. With some excellent help from the staff manning the ride, we managed to get M settled in a position that allowed him to breathe before the ride started and the screams from my excited duo began. 20150831_100610Mike watched from the sidelines as he and spinning rides really don’t get along and waved merrily to us, slightly misconstruing my attempts to flag a staff member down to help as an unusual display of my own excitement about the ride.

Disappointingly we are no longer able to eat on-site as we’ve found that the cross-contamination is too much for M’s sensitive digestive system to cope with and instead we enjoyed a rather soggy packed lunch, whilst watching both shows – the Pirates of Skeleton Bay and Lego Friends to the Rescue. The children were also able to be part of the audience volunteers at the start of each show, which they loved and which has become an integral part of any day we spend at Legoland Windsor. All in all, we had an amazing day out thanks to the generosity of Merlin’s Magic Wand. The charity depends on donations to help make these tickets available to those children who benefit from them and if you want to find out more about how you can help or show support, please visit their website:

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Inspired by #GBBO

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You might have noticed the extended radio silence over the last 10 days or so as we took a much-needed week away from it all down in Cornwall and the lack of wi-fi in our lodge meant that we almost had a technology-free week too. Despite my lack of blog posts, I did manage to keep up with a current TV favourite and I’m sure I’m not the only allergy-parent out there who looks forward to a weekly dose of the Great British Bake-Off (GBBO), which has recently re-started on our screens.  I spend that hour with Mike, M and G drooling over their masterpieces, cringing over their mistakes and pondering on whether I can adapt the recipes to create my own M-friendly #GBBO-inspired entries. Our household is especially excited about the upcoming episode airing on BBC1 tomorrow night (September 2nd) as the bakers will be tackling 3 different “free-from” challenges, though I’m not sure any are as difficult as baking to suit multiple food allergies! One person I’m sure will be watching with equally avid interest is fellow EGID Mum and FABED friend, Dr Berenice Golding, so whilst I’m beavering away to pull together a plethora of posts to tell you just how fantastic our Cornish trip was, I am delighted to be able to share with you this guest blog-post written by Berenice, in which she talks about her attempts at a #GBBO-inspired free-from Madeira cake.

BGIn our house we love everything Great British Bake Off despite the fact that on a daily basis we are dealing with multiple food exclusions. Diagnosed in 2012, at the age of 12, my son is allergic to wheat, gluten, tree nuts (not peanuts but we still avoid), soya, sesame and coconut. We have many other foods we are avoiding, or trialling in small quantities such as tomato, but the list is quite long… He has also, following total food exclusions last summer when he was fed an elemental diet via a NG-tube, been put on a diet that does not include dairy, eggs and fish. Nevertheless, despite the exclusions, #GBBO inspires us as we both like to bake. In fact, baking is a must in our house as it is the only way that safe cake, as a treat, can be made available.

We have trialled dairy re-introduction to no avail, so this summer, rather than re-trialling dairy due to an impending hospital admission, I opted to trial eggs. We have managed to re-introduce small amounts of fish, but egg was my next big adventure due to his rapidly approaching 16th birthday.

Why egg you may ask?

The answer is simple, I have struggled over recent weeks and months with the absence of eggs and trying to find egg replacements that not only work, but are also free from nuts – it has been a challenge. Then, while watching the bakers produce Madeira cake on #GBBO, I was suddenly drawn towards Lemon Madeira cake as a baked egg trial and began my search for an allergy-friendly recipe.

I have a number of allergy friendly cook books; my favourite, albeit American, is by Colette Martin. I have also recently invested in a book by Pippa Kendrick following a recommendation by one of the founders of Families Affected by Eosinophilic Disorders (FABED). I also had a recipe in my recipe folder – I started compiling this when I realised that baking was a necessity and not just for fun! – by Glutafin, but because the flour they produce contains milk powder, we haven’t been able to use their flour recently and so I consulted the internet and found a recipe by Dove’s Farm. Unfortunately, the recipe contained almonds which meant that I needed to modify recipes to make something safe for my son. This is where the fun began.

11900092_10153541906468739_7334883458966317310_oMy 1st attempt, whilst smelling okay, was somewhat disastrous as I had forgotten that I was using self-raising flour and had added baking powder as I was working with the Glutafin recipe. It did not taste that nice – the texture wasn’t right – and there was no discernible crack, Mary Berry would not have been impressed. The first cake made its way to the bin quite quickly. But I persevered and my 2nd attempt was exactly what I had been hoping for – well almost – the texture was a little dry (this time I opted to trial a combination of both recipes) but once topped with icing, prepared by Benjamin, it was actually quite delicious! I still need to work on further recipe conversions as I have yet to perfect this cake and I will share the recipe once I think it is worth sharing.

My thanks go to Berenice and Benjamin for this great post. Dr Berenice Golding is a Lecturer in Social Sciences at the University of Huddersfield. She has a personal and professional interest in the social, emotional and psychological aspects of food. Some of her other posts can be found here and here.

Countdown to Cornwall

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This time last year I had holiday-planned to within an inch of my life and had experienced amazing support from the folks at Virgin Atlantic. We had arrived at Disneyworld Florida, were impressed by the positive approach to M’s restricted diet shown by all and were loving our days in the sun. It really was a trip of a lifetime and we’ve all been reminiscing a lot about where we were and what we were doing this time last year.

Our plans this year have been much less grandiose and much closer to home. When we first started thinking about our summer holiday plans back in November, all we knew was that M was going to be going elemental sometime soon and would have a NG-tube in place. We didn’t know if it would still be there by the time this summer rolled around and had no idea what he’d be able to eat or how we’d all be coping with the change. We toyed with the idea of a holiday in Portugal, a favourite destination of us all, but just weren’t sure how confident we would be if we needed to travel abroad with a tube in place.  20150812_172857Of course, with the benefit of hindsight and nearly 9 months experience, I am sure we would have coped just fine, but the uncertainty of all we’d be dealing with meant that instead we opted for staying in the UK and so we are now on our countdown to Cornwall.

Our front hallway currently resembles a storage facility as I pull out ready for packing, not just clothes and beach essentials, but safe food supplies for both G and M and, of course, everything we’ll need for M’s tube feeds. We have each chosen a day-trip we’d like to do whilst we’re there as well as researching the beaches surrounding Fowey, our base for the week. Mike has spent time looking at various “wet-weather” options as there’s no guarantee of sun in the UK, even in August, and we have been able to pencil in a day with G’s godmother, Godmama C and her lovely family as they will be holidaying there too. We might be staying in a self-catering apartment, but we’re also hoping to venture out to eat and my time has been spent trawling the internet looking for allergy-friendly restaurants and emailing to find out whether they will be able to accommodate M’s current food needs. cornwall-mapThe great news is that a couple have already replied to tell me that they are up for the challenge and I can’t wait to try them out and share our reviews of just how well they did for both M and G with you all. Even better, thanks to timely posts from fellow bloggers such as The Intolerant Gourmand and dedicated websites like Can I eat there?, I’ve been given some great top tips for making this a holiday to remember.

 

It takes a village

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Do you know that quote?  There’s a chance you might associate it with American presidential hopeful, Hillary Clinton and her 1996 book of the same title, but in fact it comes from an Igbo and Yoruba (Nigeria) proverb and has a sentiment that is echoed by numerous other African sayings.  It recognises the great value of having community involvement in a child’s upbringing, not just for the child and immediate family, but for the extended family and local community too.  As I have mentioned so many times before, we are incredibly fortunate to have an amazing community surrounding us, who are unbelievably supportive, and none more so than our fantastic village school.

Since day one, when G first headed in through their gates, we knew that this was a place that would offer our children not just a great education, but also a safe and secure place to grow and develop, all within walking distance of our home.  The children have had the opportunity to build strong friendships with others living nearby that will hopefully continue into their teenage years and beyond.  In the 2 years that M has been there, we’ve seen time and time again just how invaluable the school community is, not just to M, but to G and to Mike and me too. The impact of M’s ever-changing health has been particularly profound in the last couple of years and there is no doubt in my mind that the unfailing support of their school has been a steadying force for us all.

Without the readiness of the Head and other key members of staff to accommodate M and all his needs, we would have struggled to keep his education a priority this year and I doubt I would have been able to continue working.  Their willingness to have M in school as normal and to learn the intricacies of his NG-tube and feeding regime has allowed me to stay in my job, confident in the fact that this is a group of people dedicated to including M in every planned activity and who have taken on that intense in loco parentis responsibility without a second thought. This year in particular has tested their mettle with the demands of not just feeding tubes and complex allergy requirements, but of occupational therapy, dyspraxia and dyslexia added to the mix too.  His teacher, Mrs M, has been amazing and she approaches every new challenge with great positivity and an unparalleled sense of humour. www.amazon.comEven the minor hiccups encountered along the way – non-stop beeping, blocked tubes, leaking pumps and soaking wet clothes to name but a few – haven’t derailed her and that attitude has helped M cope remarkably well with all the changes this year has thrown at him.  I cannot thank her enough for being the rock that M has needed during school hours.

Equally, Miss K, G’s lovely Year 6 teacher has been a real blessing to us as a family and to G in particular.  She has encouraged G every step of the way and helped build her confidence throughout the year.  M’s hospital stay in December was difficult for G as he and I disappeared off to London for 2 weeks and couldn’t be around to help celebrate her 11th birthday or enjoy the end of term build-up to Christmas.  What made a big difference was Miss K, who was fully aware of all that was going on, made herself available to G whenever necessary, understood that emotions were high and made allowances when needed, and stayed in regular e-mail contact with me during our stay and also during the Christmas holidays, so she was as prepared for where things stood with M as the rest of us.  She is moving on from the school at the end of this term and I, for one, will miss her, especially as I was hoping she would be M’s teacher for his Year 6 year.

It’s not just the teaching staff who have done their utmost to give us the support we depend on, but the parents and children too and this past week I was left speechless by the thoughtfulness and compassion of M’s class.  Following his presentation during EGID awareness week, this group of enthusiastic 9 year-olds discussed different ways they could support him and focused their attention on the fact that he has to wear a backpack all morning, which contains his pump and his “food”. This is what happened next:

“We decided, as a class, that we would all wear a backpack for a morning so that we are able to understand a little of what M has to go through each day. Therefore, on Friday 10th July, it would be great if all of 4M could wear their backpack to school and keep it on for the whole morning!  If you can make it weigh about 2 and a half kilograms that will be amazing as that is the weight that M carries around each day.”

20150710_111650On Friday I had the privilege of going into school to see this amazing group plus teacher and teaching assistants with their backpacks on and to express my thanks, not just to the children, but to Mrs M and the school for encouraging and allowing them to show their support in this tangible way. His classmates have adapted well to M’s tube and accept it as an essential part of him.  They’ve asked questions and been interested in the whys and wherefores about it and then just forgotten all about it and carried on with day-to-day life, which is exactly what M has needed.

There have also been shows of support from parents, including one from a Mum I’d never met before and doubt I’d recognise again.  We were travelling back home late from our last GOSH appointment after a long, hot day in London and arrived back at our local train station.  As we reached the stairs of the railway bridge, I became aware of a fellow passenger catching up with us and smiled with her as she chuckled at the inane chatterings of my night-owl.  I paused to let her go past, but she slowed her pace to match mine and started an unexpected conversation:

“I just wanted to tell you that my children are at the same school as your son and came home and told us all about his presentation. They both raved about how amazing it was and how much they had learned from watching it and asking him questions.  I just wanted to tell you how impressed they both were, especially as they now understand a little more of what he’s having to cope with and we all think he’s incredibly brave.”

The conversation carried on until we reached our cars and said a quiet good-night. This for me is the advantage of having not just a child who stands out from the crowd because of his tube,Colorful solidarity design tree but also a community who is brave enough to have the confidence to speak out words of encouragement to a near-stranger because of a shared experience and the desire to add their voice to offer support.

From helping take G to school early in the morning to having my tubie home for tea; and from working hard with M to improve his handwriting to encouraging G to reach her potential and aim for the stars, our school, its outstanding teachers and the families who go there have helped us out along the way. This academic year has been a tough one, but we’ve survived all the bumps in the road with the loving support of the truly exceptional community that we live in.

Quick update

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Stocks-Update-1With 2 weeks left to the end of term, there’s so much going on that I’ve barely got time to sit down and commit any useful thoughts to paper, so I’m afraid this post is just going to be a quick update.  We’ve just had our first appointment in the new “Complex gastro and nutrition” clinic that our consultant and lovely specialist dietician have started at GOSH.  The thinking behind this new clinic is that for children like M, who have a chronic gastro condition such as EGID as well as significant, complex and multiple food allergies, there needs to be regular meetings with both a gastro consultant and a dietician to ensure that everyone is singing from the same song sheet when it comes to treating the health of that child.

Hospital appointments always induce mild nerves in me, but this time round I felt more apprehensive than usual.  We are now into month 8 of the NG-tube, when the initial plans were that M would have it for no more than 3 months at most and I was concerned that there might be discussion about removing the tube in the near future.  M’s health has been so significantly improved since we went elemental in December that I don’t want to rock the boat any more than is necessary until we have a huge improvement with his diet.  generic round label_1265358343With only 4 foods on our “safe” list out of 12 tried so far, it has been a much longer process to reintroduce foods back than any of the medics expected, although, to be honest, Mike and I had always anticipated it taking a full year, if not longer.  At the moment, M is coping well with his tube and is keen to keep trying new foods, so there are no concerns that the presence of the tube is having a detrimental effect on him in any way.

So, in a snapshot, the outcome of our appointment was this:  that on almost every level, his health is remarkably stable right now and even his hay fever isn’t causing too many issues this year; but the area of most concern continues to be his ever-growing list of multiple food allergies.  Our dietician is very worried that M is struggling to tolerate so many foods and now refers to him as one of her “biggest, but loveliest challenges”.  The process of reintroduction has been so slow that until we have at least another 2 or 3 back in his diet, we cannot change the amount of E028 he’s having via his tube and so the tube obviously needs to stay in place.  We have chosen the next 5 foods to try – white fish, pear, GF oats, venison and coconut – and will also be doing some mini-challenges to see if we can have some more spices and flavourings to add into my recipes.  I will continue to remain in regular phone contact with her throughout these trials and we will keep persevering with the food challenges until our next scheduled appointment in around 4 months time.

Another food and an unexpected insight

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This moment has been an awfully long time coming, over 4 months and 7 food fails in a row in fact, but finally we have a fourth safe food to add to M’s repertoire: apple.  The last few months have been emotionally tiring as we’ve worked our way down the list of food challenges agreed with our dietitian and M has systematically, and holy-grailsometimes dramatically, failed each and every one.  It has felt as if that elusive fourth food was our personal Holy Grail and there were times when Mike and I both began to wonder when we would ever achieve it.

One of the complicating factors we’ve had to deal with during the food challenges has been the whole host of reactions that we’ve seen along the way.  We were never told, as far as either of us can remember, that it was possible to see so many different allergic responses to the varying foods M was trialling and we were certainly not advised that he could experience some that he’d never had before.  His severe oral reaction to sweet potato was, in many ways, the easiest one to identify, even though horrendous to see happen, as we knew immediately that it had to be an instant fail; but the others have not necessarily been so straight-forward.

complicatedOur main goal is to maintain the improved health and toileting that M has achieved since he first went elemental back in December and even though that has meant ruling out some foods that would have been great to have back in his diet, I remain firm that his well-being, both physical and psychological, is our primary concern.  At our last appointment, we discussed with both M’s consultant and dietitian our approach to the food challenges and agreed that anything that causes a loss of bowel control, of any description, has to be considered an instant fail for the time-being. These foods are not ruled out permanently – well, sweet potato is as far as I’m concerned! – and we will, without a doubt, revisit them at some future point once we have more safe ones back.

Sadly he has reacted to some of his old favourites, but he has coped admirably well with accepting the outcomes.  He still remains reluctant at times to acknowledge exactly how he is feeling and telling us about the aches and pains we know he must be experiencing, but 9 years of parenting M means that I have become highly attuned to his moods and can sense when he’s feeling under the weather.  His willingness to lose a food again at times has indicated to us that he also identifies when it’s making him feel poorly, especially when he has been prepared to fight for those that he believes he can cope with.

Never was that so true as at the start of our apple challenge.  During the first couple of days, his body reacted with hives and itchy skin, just as we saw when we first reintroduced rice and he also struggled a little with his bowel control.  However, unlike with other foods where he has reluctantly agreed that it was likely a negative response to the challenge, this time round M insisted that the fault was his for not listening to his body and responding quickly enough and that he felt he was still in complete control.

10 days on and he has proved to be right, which is a valuable lesson for us all:

We have spent years fighting for our voice to be heard when it has come to M’s health and each step of the way have been shown to be right in our concerns and our thoughts for his ongoing treatment.  It seems that now we need to start listening to what M has to say too and take into consideration his opinions and insights about his body.  Of course, at 9 he is nowhere near old enough or responsible enough to make his own choices or sway our decisions unduly, but, just as I have spent a long time arguing my place as the expert on the subject of M because I’m his Mum, now as Mum I need to encourage him to be his own best advocate and take an active and involved role in his care.  After all, that’s a key part of my parental role.apples7

And whilst I ruminate on this latest insight into M’s development, I’m eagerly gathering ideas and recipes to incorporate apple, in all its glory, into his diet.  So far, we’ve ventured little further than apple juice, apple slices and apple pancakes, but with the help of good friends, including one whose son is just a few steps further down the food challenge road than M, and great resources such as The Recipe Resource, then apple crumble, apple crisps and apple cakes are all on our horizon.