Tag Archives: Conditions and Diseases

Another year over

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And just like that, it’s another year over: 12 months of big medical decisions, longer-than-expected hospital admissions and a huge amount of growing up in the 7Y2D household. There’s still lots to share about our December, but that will have to wait for 2016’s posts to start, especially as I need to gather my thoughts and reflect with a clear head and heart about all that happened.

For now, let me simply wish you all a new year filled with peace, happiness and love

from my family to yours, Rxxx

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Déjà Vu

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it-s-like-deja-vu-all-over-again-yogi-berra_designdéjà vu  (noun)
 
  1. a feeling of having already experienced the present situation

Last week, when I penned my blog post marking M’s 1st tubiversary, we were in the midst of a busy week involving Christmas music concerts (G), school Christmas fairs with a choir appearance (M) and my own choir concert; and I was trying hard to avoid an eerie sense of déjà vu that just refused to go away. At the back of my mind I was very conscious that it was one year on from our last GOSH admission and had hanging over me the reality of a long 22 weeks wait for a bed to become available for another one. I can smile about it now, just,  but the stars really were aligned for last week’s outcome: my Mum was abroad again; my choir’s Christmas concert was planned for the Saturday night again; and G’s birthday was fast-approaching again.

So really, when you think about it, I shouldn’t have been surprised that the phone-call actually came when we least expected it. I think I’d been lulled into a false sense of security by the time we got to the Wednesday night. Last year our phone summons came at 1.30pm on the Tuesday afternoon and M and I had to be at GOSH by 11am Wednesday, so with no communication from them at all, other than the information passed on by our dietician that he was now top of the waiting list when Thursday dawned, I thought that was it for another week. I had my Friday planned – pack some birthday presents for G, pick up some bits and pieces for Christmas and pull together the items I’d want to take with me to GOSH when we finally had to head to London; plus some much-needed sorting out in the house to get it ready for G’s godfather and his family to visit for her birthday weekend.

I was, in fact, mid-conversation with a work colleague about what was going on re his admission, when the office phone rang and that was it. The bed was available now and we needed to head to GOSH and Rainforest ward as soon as we practically could. With so little notice, dropping everything to go there and then just wasn’t possible, but fortunately Mike and G were at home as she had an inset day, so were able to speed through a couple of loads of laundry and start pulling out all the essentials for a 2 week hospital stay.7176037017_45f555b6cc_z I started contacting those who needed to know – school, work, his GOSH dietician – and somehow managed to put in another couple of hours at work before heading off to pick M up from school and finish the packing job. The 4 of us eventually set off from home and hit London perfectly in time for the tail-end of rush hour traffic, meaning we finally reached our destination at around 8.30pm.

M and I quickly settled in the bay on Rainforest, not quite the same bed as before, but close and with some old familiar and very welcome friendly faces amongst the nursing staff to help us feel at home. It was almost as if we hadn’t been away, even though it had been 12 months since our last stay. And that was when the real sense of déjà vu hit – we had been here before. It was not just the same situation, the same bed or even the fact that it was the same ward, but on exactly the same day too, something that we could never had anticipated, even though this admission came as no surprise at all.

 

 

A Numbers Game

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Tomorrow’s Tubiversary marks:

20141207_12421712 NG-tubes and the accompanying tube changes, which included…

…2 tubes pulled out by accident and 3 that broke unexpectedly;

4 pump backpacks worn out and replaced (and number 5 will be needed soon);

approximately 70 Feeding Friends stickers and 60 strips of Tegaderm used to keep that tube firmly stuck to the side of his face;

and at least 3 other tapes tried, tested and rejected;

1 Christmas, 1 Easter and several birthdays survived and celebrated;

11026157_10152614450811123_382817830123987117_oNearly 1 whole school year achieved with only a few days off;

1 week away in Cornwall enjoyed;

4 weekend trips planned, packed for and successfully negotiated;

5 safe foods and 2 safe oils identified and back in his diet, resulting in…

…around 15 new recipes adapted and perfected…20151121_162110

…4 new kitchen gadgets invested in and well-used…

…and impressively 16 restaurants found to be amazingly able and willing to accommodate the trickiest of dietary requirements

 

Not forgetting:

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M's daily batch of medicines

410 litres of E028 pumped

12 daily medicines reduced to just 3;

nearly 3kg of weight gained

5cms of height grown

 

And including:20141216_121143

12 months of stock counting, and rotating, and checking, and ordering

52 weeks of new syringes and dressings

365 days dealing with pumps beeping – …on…off…start…stop…blockages…settings…errors…”just becauses”!

8,760 hours of making sure Pictures July 06 019the tube is tight enough, taped enough, in the right place enough…and not getting caught on anything

525,600 minutes of longing to be able to hold or stroke or kiss that precious little face without the tube getting in the way

Countless tears shed, hugs shared and frustrations vented

 

All amounting to…

One year of the best health ever

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One boy and his bike

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It will come as no great surprise to anyone who knows us when I say that M is something of a daredevil. A true speed demon who loves nothing more than racing around at breakneck speed, sometimes with a frightening lack of regard for his own well-being or my nerves. I think his attitude to life could well be described as “why do anything at walking pace when you can run?” He’s always been the same and mastered climbing out of his cot and climbing up anything to hand (think window-sills, wardrobes and shelving units) from an early age. It was something of a shock when he swept into our lives like a whirlwind, especially after 2 peaceful years with G, who took a much more relaxed approach to just about everything in her early years.

Despite M’s continuing love of climbing, which now includes any tree he can get a foothold on, and his passion for being constantly on the go even until the wee small hours, he has struggled to come to grips with the more mechanical methods of moving around. His obvious clumsiness as a toddler and unquestionable difficulties in balancing in gymnastics meant that it came as no great surprise when a few years later he was finally diagnosed with dyspraxia and dyslexia. M didn’t particularly struggle with his hand-eye co-ordination, in fact his nursery commented on how impressed they were with his tennis skills at age 3, but fine motor skills, upper body strength and balance have all taken a lot longer to achieve and are things he continues to work on both at home and in school. spark_2-0_action_3It took a little longer for him to become confident on his scooter, but his determination to succeed on a 2-wheel one, rather than the 3-wheel “easier” option, paid off and earlier this year he saved up enough money to buy himself the new one he’d been eyeing up in the Argos catalogue since last Christmas.

However, the one thing that had continued to defeat him was successfully riding his bike without stabilisers. For years, M has been telling us that all we needed to do was arrange a return visit to Canada so Grandpa could teach him how to ride his bike, just as he had G and the rest of their cousins; and there was little we could do to persuade him that he could actually learn at home. Despite M’s belief that Canada and Grandpa were the key to his success, we’ve continued to encourage him to practice at home and had even attempted removing the stabilisers a couple of times in an attempt to push him into giving it his all, but to no avail. lose-the-training-wheels-logo-new-black-on-whiteWhen M had his NG-tube placed at the start of this year, he was initially a little more cautious about all things even vaguely adventurous and after a couple of failed attempts on his bike, it was relegated to a dusty corner of the garage to gather cobwebs.

I’m not quite sure what changed over the summer, but something obviously did. It may have been seeing G and Mike head out on some   Saturday afternoon bike-rides, whilst he and I played together at home; it could have been his increasing belief that he can do anything he wants with his tube in place; and without a doubt, his improved balance that is so clearly evident as he scoots around and attempts trick-jumps on his scooter also played a part; but a few weeks ago he finally found the courage to take that last step. It came as a something of a surprise and was his response to my somewhat flippant comment one afternoon. He was chatting away to me as I was pulling the washing from the machine in our garage and talking about Mike’s need to tidy up in there. I told him that in terms of sorting out their outdoor toys, maybe we should get rid of his bike as it was just cluttering up the corner and could be put to better use by someone else. He took it as a personal challenge:

“Ok Mummy, I’m going to get on my bike and ride it now!“

and with that comment, on he jumped and wobbled his way out onto the driveway, with his toes barely touching the ground.

I watched from the kitchen door as M persevered to overcome this challenge that has been his nemesis for so many years. There was a look of absolute determination etched into his brow and he just kept on going until, with G by his side cheering him on, he finally managed to put both feet to the pedals and rode the length of our driveway. Elated with his success, both children shouted out in triumph, summoning Mike and me to watch in amazement as M grew in confidence in front of our eyes and completed his victory lap several times over. Since that day he’s improved in leaps and bounds, with his bike being the first thing he pulls out as soon as he gets home fromshutterstock_17311288 school for a few bumpy trips around the garden. We always knew that his premature arrival in the world with the dyspraxia added on top would mean he might take a little longer to master certain skills, but that he would get there in the end; and we were proved right that his refusal to be beaten by anything would eventually lead to an even sweeter success when we least expected it.

Children In Need 2015

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Along with the rain, wind and grey skies, November also brings with it the star-studded evening of light entertainment that is BBC’s Children in Need. Last year they launched the theme of “Be a Hero” for the event and my pair decided to dress as their personal heroes of Princess Leia and M’s gastro consultant at GOSH. This year, the dressing up part was a little easier to achieve – G headed off to school in her own wardrobe selection and M wore his “Super Tubie” top as we really couldn’t think of any better superhero for him to represent. You might think that this meant I escaped lightly for this year’s celebrations, but for those of you who know me, or follow me on FB, you will be well aware that my youngest actually had very different ideas about how we should spend the night before the big day itself, and what a long night it turned out to be!

His school decided to hold a “Great Children-in-Need Bake-off” competition as part of their fundraising efforts and naturally M was keen to take part. His first step was to decide what he wanted his cake to look like and eventually settled on cupcakes rather than one big cake as they would be easier to sell as part of the school cake sale after the competition was judged. Instead of decorating a dozen individual cupcakes, 20151111_195743M wanted to use them to create Pudsey Bear’s face as best he could. Design done, Wednesday evening saw M whipping up the cake batter with a little supervision from me and the resulting 24 perfectly baked M-friendly cupcakes were left to cool overnight before he tackled the big job of the icing.

One evening to ice to perfection might sound like more than enough time, but when you take into consideration the after-school archery club requiring late pick-up, the long-awaited ‘flu vaccination appointment, the unavoidable homework and the much-needed dinner, you’ll begin to understand why we couldn’t get started until close to 6.30pm. Of course, having baked cakes that he could eat, M was keen to ice with safe icing too, so my first job was to help him make enough coconut oil icing, tinted a rather fetching Pudsey Bear yellow, to cover them all. 20151112_192831We had already made a simple cardboard frame in the shape of Pudsey’s head to hold the cupcakes securely and,having fitted 10 cupcakes neatly into place, M got started on the icing.

It was his first attempt with an icing bag and I have to say I was impressed. M handled the bag and nozzle like a pro and did what I’d consider to be a really good job for his very first go. Watching him I could see how much his motor skills have improved since he was first diagnosed with dyspraxia and he actually made a relatively fiddly task seem remarkably easy. Yellow icing piped, next came the task of rolling out and shaping the other colours to make Pudsey’s spotted bandage and facial features. He tweaked and adjusted until he was finally satisfied with the end result and I have to say it was a job well done. Whilst he couldn’t quite eat all of the cakes, he could eat those covered just with the yellow icing – the ears! – and for the first time in a long time, M knew he’d be able to buy a cake at the school cake sale!

20151112_201923

Now, for most people that would be a great place to stop; but oh no, not in our slightly mad household. Whilst we’d been browsing cookery books and the internet for ideas for his final cake design, M had spotted some Pudsey Bear cake pops and was keen to see if we could make some of those in a M-friendly version too. Cue some hurried reading on my part accompanied by much scratching of my head as I tried to work out a recipe that didn’t involve chocolate in some shape or form. I couldn’t find a single chocolate-free cake pop recipe, so did the next best thing and came up with my own.

20151112_204555I crumbled 8 cupcakes into a bowl and was delighted to see that the grated apple and pear in the cake mix gave enough moisture to form balls. M cut up some drinking straws as I carefully moulded our cake balls and stuck them to the sticks to create the lollipop shape. My full recipe is here, but let’s just say it took multiple moves between table and freezer as well as some much-needed help from all family members on hand to achieve the final look. The ones M decorated for school were not safe for him to try as we ended up using fondant icing, but we did try a few attempts with the coconut oil icing and I reckon with a few more tries, we might have those sussed.

20151113_082414It turned out to be a later night than planned, but M ended up with 2 entries to the school competition he could be proud of and was delighted that nearly all of his cakes sold at the fundraiser on Friday.

That’s what friends are for

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

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

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

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

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

Teal Pumpkin Project™ 2015

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

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

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

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

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

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

Merlin’s Magic Wand

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

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

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

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

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

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

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

merlin

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!

Inspired by #GBBO

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

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

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

Why egg you may ask?

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

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

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

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