Tag Archives: family

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

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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

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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!

A Pizza restaurant success story

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Over the last few weeks, I’ve been blogging a lot about the new recipes I’ve been experimenting with and some fantastic restaurants we’ve found, who have been amazing at providing safe food for M. With food trials proving to be a far lengthier challenge than the medics imagined, the opportunity to gently encourage M back to enjoying eating out on occasion has been one we’ve grabbed with both hands in order to maintain some much-needed sanity and time-out from the kitchen. pizzaOur latest foray was back to an old favourite of ours, Pizza Express, as in the past 4 or so years we’ve enjoyed allergy-friendly meals out, school trips and birthday parties there. I thought it well-worth a return visit to see whether it could now meet our new and somewhat exacting requirements.

Our lunch-time adventures started with a phone-call to our restaurant of choice to see whether they would be able to cope with M’s diet or not. Whilst we don’t always phone ahead, we were going to be in a part of the city where alternative choices were not readily available and we didn’t want to be trawling the streets with 2 grumpy and increasingly hungry children in tow. Mike spoke to a very helpful woman, who was able to confirm that they had plain chicken readily available and would be able to provide the chicken and cucumber parts of the meal. Unfortunately, as we have found in other restaurants, Pizza Express couldn’t cook plain rice for M, but were more than happy for him to eat from our own stash of rice-cakes or crackers whilst the rest of the family enjoyed our lunch.

 

Armed with the reassurance we were after and having convinced a very reluctant M that we really needed to stop for lunch soon, we headed off to the restaurant. Our waitress was brilliant and didn’t bat an eyelid on hearing our requests for a goldstarsgluten-free, dairy-free American pizza with goat’s cheese for G and a plate of plain chicken and cucumber for M as well as Mike and my more normal menu selections. The plates of food arrived and my picky pair set to trying it all out. The top marks out of 10 (an unbelievable 10/10 from M), empty dishes and requests for seconds that quickly followed were a sure-fire testament to the meal itself and we are delighted to have found yet another M-friendly restaurant for us all to enjoy.

Not quite Mickey-shaped…!

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20140818_143459Around about the same time that I started fondly reminiscing about last year’s holiday to Florida, my FB timeline decided to prompt my recollections with this photo of what turned out to be just the tip of the iceberg when it came to the vast array of fantastic M- and G-friendly food in Disney. These Mickey waffles were a huge part of what made our trip so successful and are one of M’s favourite memories about his first visit to “the most magical place on earth“. In fact, they were so popular that they have gained the unenviable status of one of the top 10 foods M is desperate to enjoy once he has a few more foods back in his diet. With so many of the key ingredients for your traditional waffle firmly in the “unsafe” camp, I turned my mind to what the basic ingredients of a successful waffle were and whether I could replace them and produce a waffle that might satisfy M’s longing.

I found a great recipe for egg-free waffles and, confident that I could make a replacement that would at very least look good, even if the taste wasn’t quite all it should be, I insisted on a detour during a family day out to buy my very first waffle-maker. I had previously done some research on the various options out there and once we were in-store, 20150809_184330M helped me pick which one he thought would do the best job – a combined waffle-maker, sandwich-toaster and grill! Shopping done and the day’s activities completed, we headed home and I claimed the kitchen as a child-free zone until my experimenting was done.

The first recipe I adapted produced some amazing waffles and I just wish I had a photo that captured the pure delight on M’s face when he first caught sight of his plate full of M-friendly waffles. Needless to say, he was rendered speechless – something that rarely happens as those of you who know us well will know – and he flung his arms around me, squeezing tight as he whispered “Thank you Mummy, you’re the very best Mummy in the world“. Both children declared them an instant hit and the speed at which those first 4 waffles disappeared from their plates would confirm that to be the case. Mike and I shared a fifth one between us and agreed that as delicious as they were, the rice flour had created a granular taste to the waffles, a problem that I have experienced before when baking with this tricky ingredient. 20150809_185211I have found that making a wetter mix has been key in producing a less granular cake, but couldn’t quite see how to make this work with the thicker waffle batter and the limiting factor of only a handful of safe ingredients.

Not quite 100% satisfied with my first attempt and responding to the following day’s request for “..more waffles please!.” from M and G, this time I searched for a recipe for apple waffles and adapted it to suit our allergy needs. I used some apple purée to not only flavour the waffles, but also to replace the egg and add more liquid to the batter without diluting it too much. This batch cooked as well as the first and proved to be an equal success with my discerning duo. Mike also acted as a taste-tester and reported that the granular texture was considerably reduced with the addition of the apple, though it hasn’t disappeared completely. Whilst I will continue to strive for even better rice flour waffles, for now I’m more than happy to have found a way to replicate those Mickey waffles, even if they’re not quite Mickey-shaped!

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.

 

The Dr Who Experience

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20150725_094348The same weekend we dipped our toes into the Wagamama dining experience, we also visited the Dr Who Experience in Cardiff. This was a trip that has been a long time in the planning and which was the result of M winning the Grand Prize at the Big Bang Science Fair that we attended at the NEC earlier this year. There has been a fair amount of to-ing and fro-ing to settle on a date that suited all involved, but finally the day arrived and the whole family, plus one extra excited 9 year-old, started on our way. We arrived at Cardiff Bay bright and early and meandered our way in the glorious Welsh sunshine towards the purpose-built centre, following an eager M, his friend N and a slightly less certain G.

 

Our visit started with the interactive tour, which led us on an intergalactic adventure to help 12th Doctor, Peter Capaldi, save the universe. It starts in the Gallifrey Museum and weaves it way through various unmistakeable Dr Who locations before reaching its thrilling conclusion. DWS8LondonCapaldiPix2.jpgDespite the initial reluctance of both M and G, neither of whom are fond of loud noises, darkened rooms or unexpected surprises, we made our way through unscathed and N, a much more avid Dr Who fan than M will likely ever be, eagerly took up the challenges we faced. The experience asks that no photos or filming is done during the interactive tour to ensure there are no spoilers out there for future visitors and we were more than happy to oblige.

Adventure completed, we headed into the exhibition hall, which is a veritable feast for any die-hard Whovian who is lucky enough to visit. I could quite happily have spent a couple of hours perusing the costumes, props and other pieces of memorabilia from the past 50 years of this cult TV classic. I was thrilled to see an original Dalek and various incarnations of the Cybermen, the best-loved classic enemies of the Doctor, placed sympathetically amongst their more modern counterparts. There was a fantastic array of costumes featuring not just those of each of the 13 Doctors seen on our screens, but also a selection from some of their ever-faithful companions. Awaiting discovery around every corner were unimaginable treasures including K9, multiple sonic screwdrivers and the iconic Time And Relative Dimension In Space (better known as the TARDIS to you and me) – both inside and out. We spent a happy hour or so exploring all that was on offer, everyone enjoyed the visit and I think I possibly proved myself to be the biggest Dr Who geek of the family!

A taste of Asia

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Belonging to an on-line support community such as FABED is fantastic, but also really something of a mixed blessing. The joy of being able to build friendships, ask questions and sometimes simply celebrate a milestone with others through a deft few keyboard strokes is always tempered by the isolating knowledge that these families, walking a similar path to ours, might live hours away from us and chatting in person is not always easy to do. We have been lucky enough to meet up with some families over the last 4 years and have some amazing new friends who really understand the stresses and strains of living with a chronic illness. By far and away, one of the best benefits has been sharing recipes and restaurant recommendations and it was following such advice from a fellow FABED Mum that we recently ventured into a completely new dining experience for us all.

To say we were impressed from the moment we stepped through the door of our local Wagamama restaurant is no overstatement and not one part of the experience that followed let them, or us, down. I’ve learned to broach the subject of M’s complex dietary requirements at the restaurant door to save heartache all round and their greeter not only made a sensible suggestion based on the short list of safe foods I gave him – Mini grilled chicken noodles minus a few ingredients – but also headed off to talk to both the chef and the restaurant manager to confirm they could prepare a tasty meal for M that would be as free from cross-contamination risks as they could make it. Reassured that they could accommodate his food needs, we took our seats before perusing meal options that would also suit the rest of the family. 20150725_174814Whilst M was hugely excited about having rice noodles for his dinner, G was less keen, but with 3 different types of rice available, even my pickier eater was happy.

The restaurant manager acted as our waitress and was invaluable in helping us make sensible choices for all the family and our differing allergy requirements. The greeter had done a great job of passing the information on to her and she started by addressing how they would prepare M’s meal to ensure it was as M-friendly as possible. As M is only able to tolerate rapeseed and coconut oils at the moment, the chef suggested they steamed him a fresh piece of chicken, which had not been marinated, and which would not have the risk of picking up any food or oil traces from their other pans. They also cooked a fresh batch of rice noodles, again in a clean pot to avoid obvious cross-contamination and served them with a healthy portion of cucumber “noodles” – a meal fit to tantalise our young foodie’s taste buds. The plate that appeared was impressive and M gave the meal a well-deserved 9/10 (he wasn’t so keen on the cucumber noodles and docked them a mark for that presentation!).

G chose a stir-fried rice and chicken dish (Mini chicken cha han) from the children’s menu and we saw, once again, the impressive and extensive knowledge the restaurant staff had about their food when I asked if the dish was both gluten- and dairy-free. 20150725_175253The manager knew without checking that the sauce contained gluten and advised that most of the other sauces they use in their dishes do too. However, she was able to recommend Tamari sauce, which is gluten-free and would add great flavour to G’s meal. G was as delighted as M when her bowl arrived at our table and she awarded them a well-deserved 9.5/10.

Mike and I were not only thrilled to have found a restaurant that was hugely capable of meeting our exacting requirements, but also had great meals ourselves. The service was fantastic and when a small error resulted in the wrong side dish arriving at our table, they prepared the one we’d originally asked for and gave us the wrong one for free. Back in March of this year, there was a furore when newly introduced EU legislations required restaurants to provide information about the top 14 allergens contained in their menus and over 100 top chefs and restaurants condemned the requirements as an unnecessary and inconvenient constraint on the spontaneity and creativeness of their profession. From the faultless service to the extensive menu knowledge, every single thing about our meal at Wagamama screams out that no chef worth his salt need be worried about such demands and I wouldn’t hesitate to recommend this restaurant chain to anyone looking for an allergy-friendly place to eat.

“Wherever you fly, you’ll be the best of the best!”

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This is it.  After 7 years, and more schools than I care to think about, my beloved firstborn, the beautiful G, is finishing Year 6 and heading off into the next adventure of her school career. We’ve cheered at her last Sports Day, been entranced by the Year 6 production of The Lion King and enjoyed all aspects of the Year 6 camp. We survived the stresses and tears of SATs week (just) and this week celebrated an amazing set of results that we’re so very proud she achieved. Tomorrow is her Leavers service and I’ve no doubt emotions will be high, amongst the parents, even if not with the children themselves.  It’s hard to believe that this little munchkin is old enough to go to “big school” in September, but she is and I can’t wait to see what the next steps on her journey will bring:

 

G1st

 

The quote in the title is from “Oh the places you’ll go!” by Dr Seuss.

drseuss

 

 

It takes a village

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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.

Tempting tempura

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I can’t begin to tell you how much I love being able to post new recipes on my blog once again.  Having a fourth safe food has really opened up some exciting opportunities for experimenting in the kitchen and I’ll be sharing the successes over the coming weeks as well as possibly lamenting the disasters.  Today’s recipe is actually one of the first I adapted when we started the process of food reintroductions and, just like my chicken liver pâté, is an old favourite harking back to the days when the children were small.  Arancini di riso, or Italian deep-fried savoury rice balls, have become a firm favourite for M’s tea and G, Mike and I all enjoy them occasionally too.

20150618_171855The key to their success lay in perfecting the tempura-style batter I wanted to use to coat them, as breadcrumbs won’t be seen in my kitchen for quite some time.  Tempura is a traditional Japanese light batter, which is typically made using flour and water, though some recipes include egg too.  I am very much a visual cook, rather than one to strictly follow a recipe and so my first few batches varied massively as I played with the quantities of rice flour and sparkling water used until I reached my idea of tempura batter perfection.  Using sparkling water makes the batter even lighter, but you can easily substitute it with cold tap water and will still end up with a delicious dish.  My final recipe has been carefully measured out and written down to share.

For me, the best bit about cooking Arancini di riso for M is that there are no rules.  Of course there’s a traditional Italian recipe, but you can add whatever you want to suit your dietary needs.  We have graduated far beyond the plain rice balls that I started with and now have numerous successes under my belt.  M’s current favourite is rice mixed with shredded chicken and cucumber and seasoned with salt, pepper and plenty of sage.  With my tempura batter recipe perfected, I have used it to cook M-friendly chicken “nuggets”, which have also been a big hit.  With the addition of apple, I’m planning to try a dessert version soon using stewed apple and some home-made and M-friendly caramel, but that, as they say, is a story for another day!