A taste of Asia

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.

And so the holidays begin

We’re nearing the end of the first week of the summer holidays and what a busy week it has been:

G has been taking part in the Explore week arranged by her new secondary school, which allows the current Year 6s and 7s to meet each other, build some new friendships and orientate themselves around the school. 20140523_000817She has had lots of fun learning more about CSI techniques, photography and archery, with pottery, media and innovation and a Mini-Olympics still to come. I suspect G would be hard pressed to name her favourite, but the cookery session got a huge thumbs up from me. I had warned her in advance that, as I had no idea what they would be cooking, it would most probably be a case of preparing the food, but not being able to taste it herself. However, the amazing staff had made note of her allergies and provided gluten-free flour and a dairy-free alternative to the margarine for the cupcakes as well as gluten-free pasta for the pasta sauce they made. I needn’t have worried and couldn’t have asked for anything more.

cache_2460432896Whilst G has been engrossed in the numerous activities at school, M has been equally busy at the week-long holiday club organised by our church. Every year for the last 20+ years. around 250 children from our community have attended this holiday club, which is supported and run by our church. They take part in a whole range of activities from puppet-making to electronics, go out on a day trip and are entertained daily with songs and skits based cleverly on a set of themed Bible stories. M and G have been attending the club for a few years and M couldn’t wait to go along again this year. It’s been a different year for him with G choosing to do something else, but he’s loved every moment so far and can’t wait for the rest of the week.

Mike has had the week off work to support M and be one of the very many volunteers helping lead the groups and look after the children at the holiday club. Having survived the day’s activities, it has been a case of coming home for a quick tea before heading off with G to be a leader at the church’s youth club equivalent of the daytime holiday club, which runs every evening of this week. So far, he has splashed in the open air pool, had a cake built from raw ingredients on his head and indulged in a lengthy water fight. As for me, well, it’s been business as usual and after doing the “school-run” with G each morning, I’ve headed into my office to do a full day’s work. My evenings have been a little quieter than normal as once dinner is out of the way for us all it’s been just M and me to enjoy some time together before bed. All in all, a great start to the rest of our summer.

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

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:

 

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

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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.

Perfect pancakes

During our recent GOSH appointment, the conversation naturally turned to the food I’m cooking for M these days and how we could continue to vary the options available to him with such limited ingredients. The subject had turned to our plans to introduce white fish and whether there were any M-friendly free-from fishfingers on the market, which there aren’t. I was just saying that I had perfected a rice-flour tempura batter, which would be ideal for making fish bites, when M, without looking up from the handheld computer device he was engrossed by, piped up to inform them that “…Mummy cooks me chicken nuggets and deep-fried rice-balls and flatbreads and pancakes…” before carrying on with his game. The conversation paused briefly as the dietician took note and then carried on from there, but it made me realise that I had never shared my rice-flour pancake recipe and I vowed to change that as soon as I could.

20141007_173343Pancakes are one of those recipes that I attempted very early on in our free-from journey and are still a family favourite 4 years on. I make the big, fluffy ones most associated with North America and use the batter as a basis for other savoury treats such as corn or courgette fritters. The basic recipe contains very few ingredients and proved easy to convert to the updated M-friendly version that you can find here. I flavour them with a variety of green herbs and they form a tasty accompaniment to any meal, enjoyed by the whole family, not just M and I even cooked them recently when he had a friend round for tea, where they proved to be a hit.

One of the best things about these pancakes, other than how quickly you can whip up a batch, is just how versatile they can be. With a few careful choices about flavours, they can be either savoury or sweet and both have proved popular with M. They will also form the perfect platform for our mini-challenges on spices and flavourings over the coming weeks, which I know M can’t wait to try.

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.

A cake for every occasion

We might have had Christmas, Easter and at least 2 birthdays since M first had his NG-tube, but they’ve all been celebrated without a morsel of cake passing his lips for 7 months.  He enjoyed Foxes Glacier mints for Christmas lunch, a “fake” cake for his birthday and a passable rice-flour biscuit for Easter; but we were all fully aware that none of them could possibly replace the role of cake in so many celebrations.  PV-2The harsh reality of so few ingredients has meant that even at my most inventive, a successful cake replacement has just not been achievable, but with the re-introduction of apple in the last couple of weeks, M’s dream of cake could, and has, finally been fulfilled.

It is all thanks to one of the lovely Mums that I have become friends with through FABED and whose son, under the care of the same consultant as us and who M met during his hospital stay last December, is a few weeks ahead of M with his food reintroductions after time on the elemental diet.  R and I have spent time chatting, texting and e-mailing about the boys and where we each are along our respective journeys, sharing stories and giving tips whenever possible.  Having gained the advantage of those few extra days, R has had some useful tips when it’s come to preparing food for M, the best one being this M-friendly cake recipe that I was able to try out at long last.20150626_144401

Apple purée is a popular egg-alternative, though not one I have previously used in my M-friendly baking as I have preferred to bake with ground flaxseed meal or mashed banana. With banana being a definite no for the time-being and flaxseed being low in our priorities of new foods to trial, it was finally time to put apple purée to the test. The first job was to prepare some apple purée before having to deal with the tough task of stopping M devouring it all at each and every opportunity that arose until I had a chance to actually try out the cakes. Despite his best efforts and enjoying lashings of purée with his rice pudding, there was just about enough leftover for these delicious apple and rice flour cakes.  The recipe is simple, easy to follow and perfect for anyone with such limited safe foods and, what’s more, I’m certain that it would be easy to replace any of the ingredients with an alternative that suits your particular dietary needs. The cakes are deliciously moist and have been a huge hit with M, who is asking for them morning, noon and night and are definitely a great addition to his school lunch-box.