Category Archives: Chronic Illness

The Start of a New School Year

In barely the blink of an eye, the summer holidays have disappeared amidst a blur of activities, work and holidays and as we say hello to October and the occasional pumpkin spice latte, we’ve already put the first month of the new school year behind us. This year September has been a little different to most with G moving up to her secondary school and M heading into Year 5 and all the new responsibilities that have accompanied both those events. It’s been a month of mixed emotions as the realisation that my babies are no longer that has hit. They’re growing up fast and whilst it’s been wonderful to see them stepping out with a new-found confidence, there’s been the inevitable tug on my heartstrings as I’ve realised that we’ve moved on to the next stage of parenting, especially when it comes to our little Miss.10865938_887210898036761_1768009436261476122_o

For G, she seems to has quite literally grown up over the summer holidays and now stands a good 2 inches or so taller than her closest friend, whilst developing a new sense of independence too. Every morning I drop her at the local corner shop, where she meets up with a couple of friends for the walk to school. They leave laughing and chatting and seem to pick up various classmates and friends along the way. She’s loving all that her secondary school has to offer, even the drip-feed of homework on a regular basis and is fast learning the importance of being organised and keeping track of her things when there’s no peg or drawer in which to abandon her belongings. Every afternoon she meets M and me at our agreed meeting place, strategically positioned between the 2 schools and is keen to find out how M’s day has been as well as sharing parts of her own.

9781408847558And every evening, once she’s tackled her homework and played outside with M, G spends time helping prepare her packed lunch for the next day and chats away with either Mike or me in the kitchen, giving us precious insights into how things are going as we prepare M’s feed or dinner or sometimes both. Some evenings she’s tired and emotional and a little worn down by the events and demands of the day, but on others she’s buzzing with excitement about what she has learned and the things she has done. I’m so proud that she’s choosing to tackle some of the extended assignments she’s been given in class and her latest effort, to write about why she’d like to have lunch with author, Huw Powell, reaped a much-deserved reward at the start of the week when she and 5 other pupils were selected to actually have lunch with the author himself. It’s wonderful to see her blossom so much in her new environment and I can’t wait to see what the year ahead has in store for her.

M has similarly settled well into his new class and is enjoying being back at school, although he’s not such a fan of the increased homework load that Year 5 has brought with it. He struggled on his first day back, sorely missing G’s reassuring presence at the Junior school with him, but he has soon got used to the new reality and looks forward to meeting up with her every day after school. 9781426755514Despite the hopes and original plans of our gastro team at GOSH, M’s NG-tube is still in place and seems likely to be so for the foreseeable future. His friends continue to take it fully in their stride and are happy to help him remember to bring his feeding pump home at the end of each day, something he still struggles to do even after 9 months of having it in place. We’re not 100% sure of all the challenges that this next school year will bring for M in terms of his health, but we know without doubt that there will be some and are glad to still have our wonderful school and staff supporting him each step of the way.

Risotto – the M-friendly way!

This could come as something of a surprise to some of you, especially when you consider that rice has been a staple ingredient for us since February, but until recently I really hadn’t thought of making a simple risotto for M. We love risotto in our house, which really makes this lack of regard inexcusable: the children have been eating my home-made version since they were tiny and yet I hadn’t ventured down this particular route in my meal creations for him. Keep-It-Simple-Design-SimplicityJust as with the gnocchi – although risotto is absolutely nothing like as complicated to make a those Italian masterpieces – I’ve been keeping to the mantra of “easy meals are best” for weekday evenings and somehow risotto had escaped my attention.

Our dinner out at Trewithen brought this meal back to the forefront of my consciousness, when I enjoyed the most mouth-wateringly delicate and delicious flavours of their prawn and smoked salmon risotto. The perfect balance of strong flavours and the creamy deliciousness of the dish reminded me of just why it has always been a firm favourite of mine and I determined then and there to see if I could create a M-friendly version that might make the grade.

Taking inspiration from the Trewithen marinade for the chicken, which won such huge acclaim from M that I ended up asking the chef for his recipe, I created my very own nod to a stock as M is obviously not able to eat any of the stock-cubes readily available on the market due to their long lists of ingredients. 20150909_173602I cooked off some sage, thyme and parsley with a little salt and pepper in some Cornish rapeseed oil until an aromatic smell arose from the pan and then added the arborio rice and chicken, before adding my final ingredient of rice milk and leaving it all to simmer in my usual “one pot” approach to risotto.

The end result smelt, well, good enough to eat and I was keen to see how my young gourmand rated my first attempt at a M-friendly risotto. He said little, but the resulting request for seconds really told me everything I needed to know and so another recipe has been added to the 7Y2D repertoire!

Merlin’s Magic Wand

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:

merlin

Cornwall restaurants – The good, the bad and the “could try harders”

The Trewithen restaurant in Lostwithiel set such a high standard on our very first night in Cornwall that I wouldn’t blame you for thinking that the rest of the week would naturally fade into a desultory second place when it came to our meals out. However, given the extensive food restrictions that need catering for within our family, we ate extremely well and were more than pleasantly surprised by the mix of menu options that were available for us. I thought I’d give you a quick overview of the other great restaurants we visited during our holiday and what allergy-friendly options they were able to give:

The Galleon Inn, Fowey – this harbourside pub in Fowey gives generous servings of delicious pub grub and features fish and seafood on20150822_130543 both their a la carte menu and their specials board. They were able to serve safe chicken, cucumber and peas (his food challenge for the week) for M and, whilst it wasn’t clear what their other free from offerings were, we were able to order gammon, chips and peas for G, which she loved. Although the staff were friendly and helpful, we couldn’t clarify that the chips were 100% GF, so for anyone who struggles with cross-contamination issues, I would suggest ordering a different side.

Pizza Express, Falmouth – we visited the brilliant National Maritime Museum in Falmouth with G’s lovely Godmama and her family and were able to eat lunch at the Pizza Express situated across the square. We were able to order our usual allergy-friendly fare here and although the service was disappointingly slow and the food not quite as good as 20150823_163118at our local Pizza Express, we were still happy with the meal we had. A definite go-to in terms of national chain restaurants when looking for somewhere safe to eat.

Eden Project, Bodelva – following my perusal of their website and an email exchange with a very helpful customer liaison co-ordinator, we had gone well prepared with a packed lunch and range of suitable snacks for both G and M and I’m definitely glad we did. The queues in the main cafe area in the biomes were horrendously long and their staff disappointingly uninterested in speeding things up to try to reduce the waiting time. Mike and I enjoyed our tortillas and the server 20150824_171621I spoke to advised that it was possible to adapt some menu items to be both gluten- and dairy-free and I struggled to find any snacks that were readily available and obviously allergy-friendly. Given how long we did wait (close to 25 minutes for a mid-morning coffee and snack!), I’m glad we weren’t dependent on that to feed G. We loved our visit, but were disappointed by the food on offer and would take food for us all the next time.

Tate St Ives – this was the surprise success story of the week for G and we even managed an unexpected treat for M too. They had comprehensive allergen information readily available and were able to offer all of their sandwiches on GF bread. G was so thrilled, she ordered an egg mayonnaise sandwich with a helping of GF chips on the side and enjoyed every mouthful. I spotted cucumber sorbet on their dessert menu as part of a Pimms jelly extravaganza and asked if they knew what it contained.20150825_150249 The answer quickly came back from the chef that it was safe and so we were all able to enjoy a pudding. G had an orange and polenta cake that barely touched the sides as it went down and M had a couple of inquisitive mouthfuls of cucumber sorbet, although his final conclusion was that he’s not keen to try it *ever* again!

Sams, Fowey – part of a popular Cornish “chain”, perhaps best known for Sam’s on the Beach, we visited their Fowey restaurant, which I can best describe as a Cornish version of the Hard Rock Cafe! Once again, they were able to cook M-friendly chicken and cucumber, whilst G enjoyed fish and chips. Their system of no booking ahead meant we had almost an hour wait 20150825_203618for our food, but we spent it upstairs in the bar area and the time just flew by. I am not 100% certain of just how safe G’s food was, but am reliably informed that their Polkerris location can cook a mean gluten- and dairy-free pizza, an adventure for another time for us.

The Godolphin Arms, Marazion – our day out to visit St Michael’s Mount ended with a table overlooking the Mount as the sun set and we enjoyed our dinner. I knew that this restaurant could provide GF offerings, thanks to this great blog and the opportunity to give it a go and enjoy the spectacular view was too good to miss. M enjoyed a more complete dinner here as they were able to prepare rice, chicken and cucumber for him and G picked the GF burger and chips. We received great service even though the 20150828_194849restaurant was busy, but had a disappointing cross-contamination risk during dessert. Our request for lemon sorbet for M was met, but unfortunately, once he was half-way through his bowl, we discovered traces of a red sorbet mixed in with the lemon. It was immediately obvious that the kitchen staff had used the same scoop to serve his lemon sorbet, even though the serving staff had made every effort to ensure that the sorbet was safe for him. Our waiter was extremely apologetic, was very concerned about the cross-contamination risk to M, who fortunately hadn’t eaten any of the other flavour when he spotted it and spoke to the manager to ensure that the kitchen staff were reminded to be vigilant with the allergy-friendly meals.

The Malt House Harvester restaurant, Exeter – I’d been wanting to give the Harvester restaurants a try for a while and our return home gave us such an opportunity. I love the salad cart that’s available and knowing that both rice and chicken are almost staples to the menu, I felt confident that it could work. On announcing our allergy requirements on arrival, I was handed a massive and somewhat unwieldy ring binder containing their allergen information, which took me a good 10 minutes to navigate. I eventually was reassured that the chargrilled chicken breast would be fine for M and he was able to have basmati rice and cucumber to accompany it. G picked the baby back ribs with chips which appeared to be both GF and DF and enjoyed selecting her salad from the cart. The ordering process may have taken a little long due to the complexity of their allergen information, but the meals at the end made it all worthwhile.

The Tremendous Trewithen Restaurant, Lostwithiel

We knew this year would be a very different holiday to our last one in Florida or our more regular stints in Portugal, but Mike and I were looking forward to a week off work and hopefully grabbing some last moments of sun before September arrived. As it turned out, we had far more sun than we had originally expected, or as the forecast had suggested and even managed to visit some of the beautiful Cornish beaches as well as our other planned days out. Aside from the weather and the inevitable question of whether we’d get everything in the car (we did – just), my biggest concern was whether we’d be able to enjoy some family meals out during our week away, an integral part of any of our holidays and not least because I was desperate to have some time off from the kitchen and the need to constantly find new ways to tantalise M’s temperamental taste-buds. The time taken beforehand to search out possible restaurants that would be able to cook for M and G proved to be time well-spent and we found some amazing options that we would happily recommend to anyone, food-allergies or not.

Our all-time favourite restaurant and the one we would visit again at the drop of the proverbial hat, was the truly amazing Trewithen restaurant based in Lostwithiel, the ancient capital of Cornwall. I had discovered this restaurant during one of my many sessions on Google (don’t ask me how as I’ve struggled to find that original review again!) and had started the ball rolling by sending an email enquiry to find out if they could cater for M or not.email

This was the fantastic and prompt response I received from Paul, owner and chef, and immediately prompted Mike to ring and make a reservation for our first night there.

Excited by the prospect of a meal that we were confident would be prepared with M in mind, we arrived ahead of schedule (practically unheard of in the 7Y2D household) and were seated in their charming back dining area. The restaurant is set over the 2 floors of a 17th century townhouse, which gives it a cosy atmosphere and you feel like you’re eating amongst friends. The menus arrived at our table and here was the first big tick of our evening. 20150822_190031G was presented with their Junior menu, which had been carefully annotated just for her to show which options could be made both GF and DF as she needed. As she spent time perusing the dishes, M was informed that the chef was busy preparing his dinner – a small touch, but such a thoughtful one as it helped him to feel as much a part of the dining experience as the rest of us. We were given baskets of delicious bread with a variety of butters, oil and vinegar to enjoy whilst we chose our meals and G was thrilled to receive her very own serving of GF bread and DF butter. We had taken some rice crackers for M to nibble on as we enjoyed our starters and, having been informed that they cooked with local rapeseed oil, we asked if he could have his own mini dish of rapeseed oil to dip his rice crackers into – a request that was instantly met and received his great approval.

20150822_194030To our delight, so tempted was G by the menu in front of her, she decided to try something new and picked their Tomato and Basil soup to start, followed by the GF penne pasta with a tomato sauce and goats cheese; and I don’t think I have ever seen her plate empty quite so quickly when out for dinner. M’s meal was equally successful and he enjoyed a “mountain” of rice, strips of cucumber and a beautifully marinated and succulent chicken breast. The waiting staff were knowledgable, polite and helpful throughout our meal and at no point did we feel that our requests were too much trouble for them to handle. The meal was such a success that when asked if we should come back again later in the week, M’s response was an immediate “..of course!..” Even better, we heard what has to be one of the quotes of the week from M that night in response to Mike’s question of whether he wanted to come back because it was “posh”.

Well yes Daddy, of course. Who doesn’t like posh restaurants?

20150826_192901Our return visit couldn’t come quick enough for our impatient duo, who asked almost every day whether tonight was “the night” for going back there and that evening didn’t disappoint either. We persuaded G to try something different and she picked GF, DF fish, chips and peas, which were declared the “most delicious ever” and was able to have dessert of DF vanilla ice-cream. For those of you battling with the need to eat dairy-free, you will understand just how excited I was to see this on their menu as we generally find the puddings are either GF or DF, rarely both and usually not something our little Miss Picky will eat. As for M, well that night he ate like a king and I still have absolutely no idea where he put it all! To accompany his plate of safe foods, the chef had also prepared him some apple ring crisps and deep-fried sage leaves and M was in seventh heaven. He not only cleared his plate, but asked for more and the kitchen was more than happy to cook another chicken breast for him as quickly as they could. 20150826_192854I had taken a dish of home-made safe apple crumble with me for M to enjoy, but had no need to produce it at the table as they had lemon sorbet on the menu, which proved safe for him to eat. Our waitress was fantastic in writing down the ingredients for us so that we could check it was 100% safe and the look on M’s face as he slowly swallowed that first mouthful was simply magical.

And really, I need say no more. The restaurant impressed us from the start with their obvious understanding of food allergies, their knowledge about cross-contamination risks and their attention to the fine details which meant both children really could enjoy an excellent 3-course meal with all the “twiddly bits” on offer too. I loved that the menu was carefully annotated to meet the food needs of every individual customer and that the ingredients in the dishes were listed, so you knew exactly what you were eating and there were no hidden extras. They happily swapped my mashed potato for rice on our second night and willingly went that extra mile when we asked if they could cook more for M. They were even happy to give me the recipe for the marinade used for his chicken, so I can attempt to replicate the dish at home. A big thanks to Paul, Claire and the rest of their team, who made our meals during that week an unforgettable experience. I don’t know when we’ll be back, but we certainly intend a repeat visit if at all possible and they well deserve the phenomenal 20 out of 10 that M awarded them!

Inspired by #GBBO

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

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

village

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

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

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.