Tag Archives: tube feeding

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.

“Run, run as fast as you can…”

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“…you can’t catch me, I’m the gingerbread man!”

To be perfectly honest, the last couple of months have been challenging ones. When we made the decision last year to move M to the elemental diet, we did so hoping that it would be the answer we were looking for and that he would finally find some relief from the years of chronic pain and constant bowel problems he’d barely been surviving. The great news is that his symptoms improved dramatically and for the first time in a long-time, M felt healthier and happier than ever before. However, despite the best hopes of GOSH that his NG-tube would only be needed for 2 or 3 months, Mike and I held the opinion that it would more realistically be in place for at least a year, if not longer, and we are rapidly moving closer to that 12-month mark. Of course, what none of us had anticipated was the struggle we would have in reintroducing foods back into M’s diet and over recent weeks, he has found the constant disappointment of failed food trials and the frustration of not being able to eat the same as everyone else almost unbearable to live with. With the agreement of our amazingly supportive dietician, we decided to take an extended break from the challenges, allowing M some much-needed time to come to terms with the realities of life right now.

shutterstock_190648280Having had that much-needed rest, M started to lose that haunted look that had been plaguing him for a few weeks and we finally seemed to have turned the corner and be back on track. We agreed on a new short list of foods to challenge in the run up to Christmas and had finally restarted where we had left off, more or less. However, last weekend, with another 3 unsuccessful attempts at reintroductions to chalk up to experience, tensions started to build and emotions threatened to overwhelm the tenuous calm that had just begun to settle. The final straw broke when G asked Mike and me to taste and review her cupcakes for her Food and Textiles homework. With hot, angry tears cascading down his cheeks, M crawled on to my lap to fitfully confide that it “just wasn’t fair” that everyone else could eat cakes when he couldn’t. Gently stroking his back, I offered to whip up a batch of one of the few sweet treat recipes I’ve managed to adapt for him in the last 12 months: Rice krispie treats? Cupcakes? Scones? Sugar cookies? Nothing seemed to quite hit the necessary mark, so I put my thinking cap on, did a little research and came up with the perfect pre-Christmas treat – Gingerbread!

Thanks to a few sneaky “mini” challenges, we have been able to add some extra flavourings to M’s diet and the most recent success was the addition of ginger to the humble pear crumble, so gingerbread seemed to be the logical next step. I started pulling the ingredients from the cupboards and, 20151121_162110as I weighed and measured out everything I needed, M’s interest was piqued and he pulled up the step-stool to stand by my side and help out. He rolled up his sleeves, washed and then floured his hands and, having selected an interesting array of cookie cutters, brandished my trusty rolling-pin to roll out the gingerbread dough on my pastry board. He chose to use the Christmas cutters as well as the odd one or two Mr Men ones, which have survived from my childhood and spent hours planning out to most effectively cut the shapes from the dough in front of him. We ended up with an impressive batch and I am heartily assured by my trustworthy taste-testers that they more than fit the brief and hit the mark!

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.

The Start of a New School Year

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

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

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

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

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

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.

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.