Tag Archives: love

Return of the Prodigal Cat

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Do you remember the story of the Prodigal son?  The one who returns home, down on his luck after years of partying and living the high life with little regard for the family he left behind.  He is greeted with open arms and tears of joy from his father and a fatted calf is prepared to celebrate his return, whilst grumbling in the wings is his much relied on and increasingly disgruntled older brother.

No tale of cats is complete without mentioning M's precious Cat

No tale of cats is complete without mentioning M’s precious Cat

Last week, our household was the unexpected location for the return of our very own prodigal, G’s cat Misty.  Misty has been part of our family for a couple of years, but is considered the pain-in-the-neck younger member by our elder statesman family cat, Jet and M’s “fat” cat, Ginger.  When we returned home from our summer sojourn in the Florida sun, there was no sign of Misty and despite hours of calling, this errant puss appeared to have moved on from our humble abode. It seemed so unfair that once again it was G’s cat who had gone, as the last kitten we lost to the neighbouring A-road and a large milk tanker was also hers, but he was also the most independent of our feline trio and was often lured by the bright lights of the nearby farms.  We kept hope alive for a while, but there came a tearful hour one Sunday after church, when I had to explain to G and M that I thought it unlikely that Misty would be back.  I regaled them with a story from my own childhood, when our much-loved cat, Delilah – and yes, we also had her brother Samson – returned home after months away from the fold, saying it was possible he could return, although I thought it unlikely.  I was careful to make no promises and hoped that eventually the sorrow of his leaving would diminish.  As time passed, both children appeared to have moved on and even though G still occasionally called to him from the kitchen door when summoning the others inside for a cuddle, she seemed to have accepted his loss and had even added a new “kitten/hamster/gerbil” to the top of her birthday/Christmas wish list.

20140722_075343So, you can imagine my surprise and the children’s delight when, getting home from school last week, who should saunter around the car in the driveway, but Misty.  I’ve never seen G move so fast or heard her squeal so loudly than when she caught sight of her beloved pet reappearing as if he’d never been away and couldn’t understand what all the fuss was about.  In the 10 days since his return, G has taken every opportunity to shower love and fuss on this cat and both children anxiously ask every day at pick-up if I know whether Misty is at home or not; and he’s lapping up every moment of their unfaltering devotion.

You may wonder why I’m sharing this story with you.  It’s partly because our life isn’t all about EGID, there’s a lighter side to it that we strive to grab hold of much of the time and partly because it made me consider the impact of pets on our family life.  I’ve grown up with cats as an integral part of the family and so have G and M.  These cats have become a key part of our household and bring immeasurable comfort and enjoyment to us all.  There is nothing more soothing to me than a cat curled up on, or next to, me as I work or watch TV or read.  When M is feeling under the weather and is struggling with his EGID symptoms, he takes huge amounts of comfort from having any one of our cats alongside him and we have found that it has even helped him calm down and settle to sleep at the roughest moments. 20140803_200241The simple, unassuming acceptance by our family pets of my boy’s sometimes turbulent moods has been an unexpected blessing and Mike and I have been known to usher one cat or another towards him when nothing else can break through his tantrums.  G thrives on the peace that being curled up on the sofa with her book on one side and her beloved cat on the other brings.  Both children have learned to take some responsibility in looking after their pets and G can often be found dishing up their dinner in the evenings without being asked.  I know we’re not alone in experiencing the companionship and joy that pets can bring, nor the life lessons of love and loss that have been taught as our children grow up.  Our prodigal cat might not have been fed with a fatted calf, but we’re all delighted to have him back home, especially my beautiful girl.

A Birthday Treat – Lemon Meringue cupcakes

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This time last year, M was admitted into GOSH for scopes and he and I spent Mike’s birthday away from the birthday boy himself, leaving him to celebrate at home with the rest of the family.  There was a point this year when I thought history was about to repeat itself as we’re once again waiting for an admission date for M, who needs further testing to try to sort out the games his body is currently playing.  However, Mike’s birthday came, and went, with no sign of a phone-call from GOSH and I finally had a chance to make a long-awaited attempt at the Lemon Meringue cake I’d been dreaming of making last year. lemonmeringue

Lemon Meringue pie is Mike’s favourite dessert and there was a time, many eons ago, when I’d actually make him one from scratch for his birthday treat.  With the arrival of G and M, the general busyness of work and juggling the school-run alongside business meetings and the general day-to-day running of the household, I don’t think I’ve turned my hand to such a dish for at least a decade.  Add into the mix, the newer challenges of egg-free meringues and MEWS-free pastry and it’s not been the easiest pudding to make.  I attempted a cheesecake version for Fathers’ Day this year, but that didn’t quite go as planned, so I put my thinking cap on to see if I could figure out an alternative format for this popular dessert.

I settled on lemon drizzle cupcakes topped with vanilla butter-cream icing and small meringues.  I’ve made Lemon drizzle cake before, but found that the rice flour made the sponge taste very granular and I was keen to see if I could improve the texture.  I found a lovely recipe for vegan lemon drizzle cake and read around the options for replacing the flour to make the cake both gluten- and potato-flour-free. 20141015_194117 My final recipe included gram flour – an ingredient that’s been lurking in my cupboard for a while, but which I had yet to brave using – rice flour and tapioca flour and the end result was infinitely better than the last time, though some further tweaking to create the perfect lemon drizzle cupcake is needed.

I whipped up a small batch of my vanilla butter-cream icing and used it to secure the mini egg-free meringues to the top of each cupcake.  I was delighted with how these cakes looked and M spent most of the day, and evening, before Mike got home from work, begging to try one to “just check it’s okay for Daddy!”  I am assured by the family that the cupcakes were a huge success and so that’s another recipe added to my ever-increasing repertoire.

 

National Chocolate Week – Part 2

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Despite arriving late to the delight that is National Chocolate Week, we have been lucky enough to receive another fantastically M-friendly chocolate product to try and then review.  As I mentioned in my last post, Moo-free chocolate bars are a staple in the fridge at 7yearstodiagnosis HQ and this latest find might soon become another permanent fixture in our store cupboards.

chocshotI had never even heard of Sweet Freedom foods until I came across a stray comment on Twitter last month that pointed me in the direction of their allergy-friendly product, Choc Shot.  This chocolate syrup is made in the UK from “Sweet Freedom® (natural fruit extracts; apples, grapes & carob), water, cocoa, rapeseed oil, natural chocolate flavour” and promises to deliver great taste for a low calorie and GI content.  The website includes a wealth of recipe suggestions for using Choc Shot and I couldn’t wait to see whether it could do all that it promised.  M tried it first, opting to have it spread sparingly on a piece of toast, a rare treat in our household.  He liked the flavour, but didn’t love it, finding it quite rich and not overly sweet.  I could quickly tell that it didn’t quite hit the mark here as he hasn’t asked for a second helping at all.

Mark:  A tentative 7/10

20141007_182950However, I was keen to see whether we would fare any better if I used the Choc Shot to cook with and here is where this product really comes into its own.  I decided to whip up a batch of my Canadian-style pancakes for pudding and chose to deploy the Choc Shot in 2 ways to see which worked best to satisfy my hungry hoards.  The first lot was pancakes made with a generous helping of frozen forest fruits  – think cherries, blackcurrants, grapes and blackberries, all the things G wouldn’t usually touch with a barge-pole – mixed into the batter and drizzled with Choc Shot to serve; the second round saw me incorporating both the fruit selection and the Choc Shot into the mixture to produce delicious-looking Chocolate and fruit pancakes.  I dished them up and waited nervously for the reports of my discerning children.  Two rapidly emptied bowls soon appeared on the table, accompanied by requests for more pancakes, even from G, who barely blinked when I told her what fruits were included in her dessert.  I was delighted with this result, not least because the Choc Shot added a delightful chocolate flavour to the pancakes without making them overly sweet.

Mark: A resounding 10/10

20141017_122336The final test was to try the Choc Shot as suggested on the bottle itself – to make Hot Chocolate.  I heated mugs of rice milk in the microwave, added a generous squirt of the Choc Shot and topped it off with some boiling water.  The end result was fantastic – rich enough to feel indulgent, but not too sweet.  It was quick to make and was, by far and away, the best M-friendly hot chocolate I’ve been able to make since diagnosis.

Mark:  10/10

I was impressed with Choc Shot and wouldn’t hesitate to recommend it to anyone looking for an allergy-friendly alternative for chocolate to use in cooking.  It is readily available from most supermarket chains and is reasonably priced at around £3.50 a bottle.

 

*Disclaimer – We were sent bottles of Choc Shot and Sweet Freedom for the purpose of an independent review and the views expressed are entirely my own and those of G and M.

The Message from “My Man” at the BBC

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Three weeks on from that episode of the BBC’s hospital drama, Holby City and I’m still reeling from the amazing response to my blog post and the unexpected bonus of two phone-calls with series producer, Simon Harper.  When I penned my heartfelt response to what Mike and I had watched on-screen, I expected to reach a few more than my usual readership and dared to hope that I might beat my previous “top score” of 186 readers in a 24-hour period with my letter to our local hospital.  I never dreamed that over 2,000 people across the world would read, comment on and share that plea for responsible portrayal of chronic illness in the mainstream media.  As well as sharing my thoughts through my blog, I made a formal complaint to the BBC and, through the wonder of Google, managed to track down Simon Harper and sent him an e-mail, expressing my concerns about the inaccuracies about EGID portrayed in that episode.

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

I didn’t expect to hear anything back, so you can only imagine my surprise and absolute delight when Simon not only replied to my e-mail, but also offered to pick up the phone and discuss the matter with me.  We agreed a day and time to talk and I spent the week making notes and talking to fellow EGID parents through FABED and other on-line forums to get their points of view on what I needed to raise in my conversation.  That first phone-call lasted for around 30 minutes and at no point did I feel that Simon was keen to close down the conversation and finish the call,  He was genuinely interested in learning more about EGID and understanding why this episode had caused such distress in the on-line community. We spent a long time discussing the difference between “intention” – what the program was trying to portray – and “perception” – what the viewing public understood – when it comes to producing a drama for television viewing and here Simon explains it in his own words:

The intention: “the guest character’s general allergies were a dramatic smoke screen to the actual underlying cause of his pain, neuralgia – but that in no way were those allergies supposed to suggest a condition as specific and, as I now know from talking to you, severe as EGID.  In no way was the story supposed to say that EGID was in fact just neuralgia!“.

The perception: “I think it comes down to one scene where Zosia (the doctor) mentions that Nigel’s eosinophils are up –  due to his general allergies – and she then goes on to mention “his eosinophilic gastro-enteritis”.  What I can see maybe wasn’t clear was that Zosia, excitedly bandying round theories and possible prognoses at this stage of the story, is in fact supposed only to be raising EGID at a possibility at that moment.  perceptionA possibility that, in fact, turns out not to be the case.  But I can see that the phrasing “his” – combined with the fact that dramatically speaking, we never see Zosia rule out EGID (a moment we assume happens off-screen) – could have given the wrong impression.  It’s a tough call with medical drama – you never play on-screen every single beat of medical treatment that would happen in real life, choosing the moments which best serve the story,  and sometimes rely on the audience’s imagination to assume and deduce. It’s a delicate balance, and there is definitely a lesson to be learned here, because evidently, missing out that moment has in this case given the wrong impression.”

I also mentioned my concerns that a range of inflammatory bowel diseases had appeared to be ruled out through a simple ultrasound, whilst those of us living with this family of illnesses know, from our first-hand experiences, that endoscopies, colonoscopies and biopsies are the only reliable ways to confirm a final diagnosis.  The conversation ended with an agreement that Simon would spend time investigating what research was done, talking to the consultant concerned and checking out the ultrasound situation before phoning me back a week later to talk some more.  I was struck by his commitment to unpicking where and how things went so wrong and have to confess to being cheeky enough to send another e-mail, thanking him for his honest discussion with me and pointing him in the direction of various EGID websites, so that he could truly understand what our families deal with on a daily basis.

A week later and that second phone-call happened.  Another 30 minutes valuably spent clearing up those outstanding points, including his agreement that the discussion regarding the ultrasound came across as far more definitive than was their intention.  I have to say I’m impressed with the research into EGID he had done during that week and appreciate that he took the time to properly review the research done originally for the program.  Finally, and definitely most importantly, he has sent a huge apology to our EGID family and I truly believe it is a heartfelt one.

apology

Courtesy of psmag.com

“I repeat,  I  am absolutely aware that despite all this, an upsetting impression was given due to the way EGID was referenced and never ruled out on-screen and there is absolutely a lesson to be learned there for the future.  I can’t undo any upset caused, I realise, but do so hope I have been able to reassure you that we take the medical research aspect of HOLBY with the utmost seriousness and that in this instance, it truly was not an instance of inaccuracy, but, I think, a point of clarity that had an unforeseen impact on how the story came across.

 I truly have enjoyed our conversations, as not only did I get an education on the condition that  your son,  you, your family and many others are so courageously living with, but, as a producer, it is always absolutely invaluable to get insights on how our story intentions actually translate to an audience member –  that gives us great help in the way we tell our stories for the better to make HOLBY an entertaining but hopefully also stress-free hour!  And I do hope that you will continue to watch and enjoy the show.“

A big thank you to Simon Harper for his willingness to be open and honest about the research done for this storyline, the errors of judgement made in the production, to talk to me not just once, but twice and his apology for the upset unintentionally caused.  As one of my fellow EGID Mums asked (and I wholeheartedly agree):

“Any chance they’ll get Mr Allergy (grrrrrr) back and do a proper episode on EGID?“

Simon, I wait for your answer!

“Out of difficulties grow miracles” – Jean de La Breyere

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stormyThese last few months have been, well, interesting; and yes, that’s one of those euphemisms you use when you really don’t know how else to explain what’s been going on.  In many ways life was reduced to a whole new level of hell in our household; one that I’ve hesitated to discuss because of the nature of our experience.  Sometimes I need to delay publishing my posts to give us all time to process what we were dealing with before revealing it to the outside world, to allow the storm to pass and to let those memories start to fade.  Now, I’m – we’re – finally ready.

The reason for it all has been M’s ongoing issues with his bowel.  When the pellet study was done a year ago at our local hospital, the x-rays indicated that he had developed what is termed “mega-rectum” and “mega-colon“, caused in all likelihood by ongoing and previously undiagnosed impaction.  The priority at the time was to clear out his system and keep it clear, but unfortunately, for reasons still unknown, M has limped from one bout of constipation to another over the last 15 months.  The constant flow of problems has taken its toll on the whole family, but most noticeably on M, who is finding it tough to be positive when he feels that nothing is making a difference.

Our first meeting with our local consultant led to a long discussion about what, if anything, we could do to try and ease this problem and how we could help M’s bowel to recover.  He suggested a course of treatment that sounded extreme, but which he felt would encourage this troublesome body part to start to repair and would therefore hopefully alleviate some of the issues.  He proposed starting M on yet another laxative, called Bisacodyl, which would be administered by a daily suppository each evening.  This would cause an immediate response, thus reducing the likelihood of ongoing impaction and hopefully M’s bowel muscles would eventually recover some of their elasticity.  This treatment was not to be a long-term one and we would start doing it daily for just 4-5 weeks before being assessed in clinic again.

willowtreeOf all the medicines that M has endured over the last 3 years, this is, by far and away, the worst one we’ve had to put him through.  Day 1 was tricky as he was incredibly nervous and had no idea what to expect.  The subsequent week was hell and the nightly battles as I gave my boy this medicine accompanied by his incessant crying and pleading took an almighty toll on the family.  Job being done, a nightly cuddle was needed to reassure and comfort us all.  Due to unexpected problems during that first week, M experienced a heavy bleed and we were advised to take a week’s rest before restarting and finishing the course of treatment.  Unsurprisingly that was even more difficult to do, in fact almost impossible, but we persevered and carried on until our next appointment.

Mike and M had their hopes pinned on the medicine stopping then, I was slightly more sceptical and sadly I was proved right.  There had not been sufficient progress in that 5 week period for our new consultant to be satisfied and he wanted us to keep going until the start of the school holidays.  At that point, he asked us to double the dosage, administering the medicine both morning and evening until we flew to Florida.  I think that everybody’s heart sank at that point, although M cheerfully focused on his idea of a silver lining – he got to stop taking the Senakot, which was his least favourite medicine and that it would all stop as soon as we got to Florida.  How we got through those 8 weeks, I really don’t know and I hate knowing that we might be told to restart the medicine again in the future.  Worst of all, we won’t know whether this treatment has been of any help for a while yet, which is discouraging, but we will continue to keep our fingers crossed and hope that out of that difficult time, we really will start to see small miracles grow.

hope

A Chocolate-Lover’s Birthday

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Recently someone posted a link to this easy cake recipe on one of the EGID support group forums I belong to on Facebook.  I was soon drawn to its simplicity, not least because it was already dairy-, soya- and egg-free, but also because the comments that followed suggested it could be easily converted to a gluten-free recipe too.  What was even better was that I had the perfect occasion to try the recipe out – my Mum’s birthday.  As you may recall, we had planned a special afternoon tea at the Grand Floridian whilst we were on holiday, but the actual date was now approaching and we had a family lunch booked for the day itself.

chocsI think it would be fair to say that my Mum is an avid chocolate-lover, one might almost say a chocoholic and there used to be a time when you’d be hard pressed to find her without an emergency chocolate bar stashed in her handbag, glove box or on the top shelf of the fridge.  Bearing that in mind, it was something of a no-brainer to decide on a cake that would satisfy her idea of chocolate heaven.  The bigger challenge was in making that creation both deliciously decadent and M-friendly.

20140912_225331I doubled up the quantities in the chocolate crazy cake recipe and chose to mix the ingredients in a bowl, rather than in the cake tins themselves as I wanted to make 3 individual layers to sandwich together.  I replaced the flour with a blend of rice and tapioca flour and added a pinch of xanthum gum to help it on its way.  The cakes that came out of the oven appeared to be beautifully moist and not too granular, although Mike’s first comment on tasting some of the trimmings was that they were a lot sweeter than my usual bakes.  I swirled vanilla butter-cream icing with spoonfuls of Grandma’s strawberry jam (all the way from Canada) and used this to sandwich the layers together.  Lashings of home-made chocolate butter-cream icing then covered the entire cake, before I finished it all off with a generous sprinkle of pearl drops, moo-free chocolate buttons and shavings of moo-free orange chocolate.

It looked like my idea of a chocolate-lover’s dream birthday cake and tasted good too.  My Mum thought adding raspberries would have added a little sharpness to cut through the sweetness of the chocolate, but there wasn’t much left after her meal, which is always a sign of a good bake!

Dear BBC Controller

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Sometimes something happens that leaves me lost for words.

Having heard the furore on Facebook from fellow EGID parents, Mike and I sat down last night to watch Tuesday’s episode of “Holby City” on the I-player.  To say that I was speechless as the drama unfolded would be an under-statement; to say that by the end I was fuming would be a gross denial of the feelings that it had caused.  My hackles started to rise from the moment we were introduced to the character later described acerbically as “Mr Allergies” and we both sat in stunned disbelief as the storyline ended with everything being cured by a rapid diagnosis and a special injection.

For those of you who aren’t Holby City fans, or who didn’t have the misfortune to catch it when it aired on Tuesday night, let me give you a quick precis.  A young man, portrayed from the start as little more than a time-waster and with a list of allergies as long as your arm, is admitted into the hospital.  Nobody can pinpoint what’s wrong, but the doctor in charge of his care recognises that his symptoms fit with EGID.  She performs that little-known-as-highly-reliable diagnosing tool of an ultrasound (!) to rule out Crohns disease and Diverticulitis and comes to the conclusion that it could possibly be EGID, but is more likely to be a mental health issue due to him craving being a “rare” individual and the attention that obviously affords him.  On the basis of all this, and having given him leaflets about planning his own funeral, she tells him it’s a previously unidentified trapped nerve, gives him an injection and within minutes he’s up on his feet, completely cured and feeling better than he has in years.

If only M’s life were that simple.  If only a simple injection could take away the pain and acute discomfort that M struggles with on a daily basis.  If only I could tell him that the magic wand we both are longing for has finally appeared and all his hurt and frustration and despair will be gone, just like that.  If only it was likely that since he was small, my distraught 8 year-old has been craving nothing more than extra attention by being a medical rarity.  If only I’d known that it was all in his mind, or, more likely, all in mine as I’ve known from babyhood that there was something very wrong.

It has taken 7 years for us to reach a diagnosis, bypassing multiple doctors who thought it nothing more than a bad case of toddler diarrhoea and a somewhat neurotic mother.  Even though we now know his chronic illness by name, lack of funding and research means that we still don’t have any answers and every step taken with GOSH is a step of faith that something will help at some point. Every day I meet with people who have no idea what EGID is and the impact it can have on the family as a whole, let alone on my 8 year old himself.  Most of the medical staff we see have never heard of the illness, do not understand the subtle nuances of this hidden disease and have no idea how much we all need their help.  And we’re not on our own.  There are over 300 other families who look to FABED for support and share the highs and lows of this illness with each other, as we can understand like no outsider can; and that’s just in the UK.

 I’ve done my bit:

I’ve made my complaint known – via Twitter, via Facebook and via the BBC online complaints system – and I’ve written this blog.  BUT the damage is done.  Nothing is going to be able to take away their careless portrayal of EGID to the 5 million who watched Holby City on Tuesday night.  I would love to meet the researchers and writer for Tuesday’s episode to understand who they spoke to and where their information was sourced.  The daily battle that M and other EGID children struggle with bears no ressemblance to what was shown, but sadly that is the viewpoint the public will now hold.  I would love for them to spend time living life in the shoes of an EGID family, even for a day, so they could experience a fraction of the living hell that that life can be at times.  To comprehend the heartbreaking decisions we EGID parents have to make and the challenges of restricted foods, bowel problems, chronic pain and a multitude of daily medicines our babies deal with.  This type of inaccurate and frankly irresponsible representation of a serious illness is not what I associate with the BBC and it is left to parents like me, who have enough daily battles to fight, to raise awareness and voice our concerns.

You can do your bit too:  Just share this blog.  Make your family; friends; colleagues; strangers in the street aware of it and the rare illness that affects children like M and families like mine.  I don’t mind how you do it – RT it; link it to your Facebook page; send it out to your email address list; print it out and pin on noticeboards around your town; or get it emblazoned across the sky – but please do it and help us get our voice heard.

Allergy Adventures

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adventureIn my recent blog about the Allergy and Freefrom show in London, I mentioned in passing the wonderful Allergy Adventures, who M was keen to visit during our day at the show.  We first discovered Allergy Adventures at last year’s show and were so impressed with their products that we’ve kept going back for more.

Allergy Adventures was set up by the lovely Hailey, who explains her reasons for starting the company on her website.  She produces beautifully illustrated children’s books that take the reader on a magical journey inside their lunchbox, accompanied by a character with the same food allergy as them as they look for safe foods to enjoy.  Each book focuses on one main allergen and teaches the child “how to tell others about their allergy and stay safe around food.” These books are bright and colourful and drew M’s attention last year as we wandered the stalls of the Allergy show.  Whilst he and G joined in with some paper-plate crafts – an absolute godsend to any parent who wanted a break from complaints of aching legs due to the amount of walking needed – Mike and I flicked through the books.

Stickers_5_largeUnfortunately, due to the extent of M’s allergies, there isn’t one particular book that we could buy for him to enjoy and to share with his friends, but there was another product that caught my eye and which I snapped up in an instant.  These fantastic “stickers” have proved invaluable in labelling any pots, products or boxes that go into school for M’s use.  His lunchbox, water bottle, medicine pots and individual tupperware containers all have a sticker, indicating that the contents are M-friendly and for his use only.  Even the children’s swap-boxes have a couple of “Hands off” stickers, so that everyone knows that they are specifically for G and M.  What I particularly love about these stickers is that they create a positive association with his food for M.  Rather than focusing on the “free-from” label and listing what he can’t eat, they instead stress that the food is special because it belongs to M or G and not to anyone else – a great message for my allergy-challenged boy.

Earlier this year, Allergy Adventures also produced an amazing allergy-friendly cooking guide, which lists out easy substitutions that can be made when baking or cooking for someone with food allergies.  Not only does it make sensible suggestions about replacement products to use, but the notes highlight key areas to consider when using alternatives.  Best of all, this has been produced as a free resource and can be found by following this link. With plans afoot for creating more resources to support children with allergies both in hospital and in schools, this is definitely one to watch.

After our first hour or so at the show, we finally listened to M’s request and headed for the Allergy Adventures area.  Once again both G and M created paper-plate masterpieces, whilst resting their aching feet and Mike and I had a break from their moans, for a few minutes anyway.  I grabbed the opportunity to catch up with Hailey, who I chatter with on Twitter and 10outot10also the fabulous Vicki, the FreeFrom Fairy, another Twittersphere friend.  Once G and M had finished their creations, they were captured on film for the Allergy Adventures video all about the 2014 Allergy show.  There’s really nothing more to add.  This is a great set of resources for anyone with a child with food allergies and I would really recommend you spend some time exploring everything Allergy Adventures has to offer, it definitely won’t be time wasted.

 

A Grand Day Out

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granddayoutIf you’re a sports fan, then last weekend was the weekend for you:  Wimbledon finals, the Tour de France in Yorkshire, World Cup quarter-finals and the Formula 1 British Grand Prix.  Under normal circumstances, I’d be trying to grab glimpses of the tennis whilst dealing with the never-ending demands of homework and food, admist the cries of “Do we have to watch the tennis?” from G and M.  This year however, saw a break from the norm and instead Saturday found me browsing the shelves of Milton Keynes’ library on my own as Mike and the children spent the day at Silverstone.

20140705_164656This amazing opportunity to watch the qualifying races for the British Grand Prix was thanks to the GOSH events and charity team, who work with Bernie Ecclestone and his team at Silverstone to fundraise for the hospital.  They have been working together to raise much needed money for 10 years, raising a whopping £4million for the hospital.  Each year they offer 30 GOSH patients and their families the chance to visit the race track over the 3 days of the Grand Prix event.

I first heard about the event on Twitter, where 140 characters offered parents and family of GOSH patients the opportunity to contact the charity’s office and apply for tickets for the event.  I wasn’t convinced we’d get the tickets given there must be hundreds of children who’d love to attend, but I came to the conclusion that there was nothing to be lost in making the application.  I filled the form in, contacted M’s gastro team to ask for an email supporting our request and confirming that he was fit and well enough to attend the day and emailed the completed form back in with my fingers tightly crossed.  I hoped we might have a good chance as M said he wanted to go on the Saturday as 1) he wouldn’t miss school on the Friday and 2) he didn’t want to go on race day itself as we weren’t sure whether there’d be as much to do during the day.

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20140705_105949We didn’t have long to wait and were delighted when Mike got the phone-call to say the application had been successful and 3 tickets for the Saturday were ours.  M was very excited to be going and the opportunity couldn’t have come at a better time for him as he’s been struggling with some big flare-ups from the EGID recently as well as the introduction of 3 new medicines to his daily regime, which has been challenging for us all.  The day had become a real focus for him and he was determined to have a great time there.  It was also fantastic to be able to include G in the day out as she rarely benefits from M’s illness and is frequently relegated to second place as we try to deal with him.  She was as excited as the boys and I hoped she would enjoy herself as much as I knew Mike would!

20140705_112530So, whilst my lucky trio spent their day meeting the likes of Eddie Jordan, exploring the Paddocks and the garages, polishing a F1 car and experiencing everything that Silverstone had to offer, I spent a quiet day on my own in Milton Keynes.  I explored the shops, enjoyed lunch at John Lewis and spent a few idyllic hours peacefully writing my blog and reading in the library.  The children have hardly stopped for breath since Saturday, telling me tale after tale about their grand day out and it’s all thanks to the hard work and generosity of those at both Silverstone and GOSH.

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