Tag Archives: summer

The Triumph of Disneyworld

jamboWe were off to a great start, thanks to the fantastic Virgin team and the successful delivery of my on-line grocery order thanks to gardengrocer.com.  Not willing to leave anything to chance that first day, I had booked dinner at our hotel for the evening of arrival rather than facing the challenge of finding somewhere to feed M and G safely whilst struggling with jet-lag.  I had left it a little late to book and we ended up with a table in the delightful Jiko restaurant at  Jambo House, Disney’s Animal Kingdom Lodge.  Not my first choice for our first evening as  I was afraid we wouldn’t enjoy the delicious menu as much as we could when we were slightly less travel-weary, but needs must and I looked forward to seeing what exactly was on offer for M.

No words are going to be able to adequately express just how amazing that first meal at    Disney was.  I am so used to restaurants struggling to come up with a complete meal for M when we eat out in the UK, that I fully expected to encounter similar problems at WDW.  I couldn’t have been more wrong.  Our server knew about M and G’s allergies and quickly     requested that Chef Tom came to the table to discuss what he could prepare for their       dinner.  SAM_1906He was happy to cook any meat or fish that they wanted and suggested what sides could be safely offered too.  Despite not having sweet potatoes in the restaurant, he went to the other hotel restaurant to find out if their sweet potato fries would be safe for M or not and, when the answer was sadly no, prepared a beautiful dish of plain rice, seared scallops, carrots and green beans for him instead.  Both children enjoyed their meals and fell asleep at the table as soon as they had finished their main courses, before dessert became an issue.

excellenceWhat’s even better is that this experience was not a one-off.  As promised, every booking at Disney was annotated with their food allergies and as soon as we were seated, the serving staff were made aware that we would need to speak to the chef.  During our 2 weeks, G and M enjoyed breakfasts, lunches and dinners unlike any they’ve eaten out in the UK.  We tried a variety of restaurants across the 4 Disney parks and the numerous resort hotels and had equal success everywhere.  Even the counter service restaurants had allergy information to hand and managers who knew exactly what would be safe for both children to eat.  There was no skimping on meals and they were able to enjoy puddings almost everywhere too.

My thanks go to the fantastic staff at WDW – Chefs Tom, Renee, Ricardo, David, Dave, Duane & Brian and serving staff Jamal, Sheldon, Chris and David as well as the others whose names I forgot to note down

the brilliant restaurants – Jiko (Jambo House), Tusker House (Animal Kingdom), Coral Reef (Epcot), Cosmic Rays (Magic Kingdom), Mexico (Epcot), Fulton Crabhouse (Downtown Disney), Mara (Jambo House), Raglan Road Irish Pub (Downtown Disney), Citricios (Grand Floridian), Hoop-dee-doo (Wilderness Lodge), Backlot Express (Hollywood Studios), Fairfax Fare (Hollywood Studios), Crystal Palace (Magic Kingdom), Chef Mickeys (Contemporary Hotel), Sunshine Seasons (Epcot) and the many others we never got round to trying

and to Disney itself for the huge efforts it has made to welcome those with food allergies to its resorts and to make their stay as special as it can possibly be.

It truly is a magical place and one we will definitely be planning to revisit in the future.

Virgin Fantastic!

The time had finally come and the night before we flew, I sent tweets to both Virgin Holidays and Virgin Atlantic to issue my challenge to meet my holiday expectations and both accepted it immediately.

https://twitter.com/VirginHolidays/status/494057894611267585

First up was Virgin Holidays and their Gatwick V-room.  As I wrote back at the end of July, I had been promised a supply of rice milk for M as well as some suitable options for his breakfast and I was keen to see just what would be waiting when we got there.  Upon arrival, we met the fantastic Dominic, who knew all about M and our request for rice milk.  As soon as we found a table for breakfast, he brought the milk over and then spent some time discussing all of M’s allergies and what food they had on offer that might suit him.  I was impressed to learn that they stock B-free bread and although it contains egg and therefore isn’t suitable for M,  G snapped up the opportunity to have 2 slices of toast as part of her breakfast.  Both children also had some cereal with the rice milk and there was fresh fruit and smoothies available for them too.  I was hugely impressed with Dominic’s attitude throughout our time there and at no point felt that we were an inconvenience to any of the V-room staff.  Even better, we were able to take the remainder of the carton onto our flight with us, which meant we could go on our holiday knowing M had a limited supply of safe milk to hand.

It was then on to our plane and it all started well.  The check-in staff had confirmed that the special request meal had been noted on our booking and the cabin crew provided us with a ready supply of ice to keep the cool-bag of medicines cold for the 9+hours we’d be in the air.  I was equally impressed that they offered to place our ice packs in their on-board freezer to ensure that we could keep everything cool until we reached our final destination in Orlando.  Eventually it was time for the meal and here we hit our first rocky point. oops I had requested a gluten-free meal for G which quickly turned up, but there was no sign of the requested meal for M.  The cabin crew searched high and low for it, but couldn’t find it and we were left with the option of whatever fruit they could get their hands on plus the snacks I had packed to keep M’s appetite filled.  Just as I was mentally drafting a letter of complaint to Virgin Atlantic expressing my disappointment at being let down in such dramatic fashion, our air stewardess hurried up with a tray of food and an apology on her lips.  The confusion had arisen for 2 reasons: 1) the meal had been prepared with G’s name on it rather than M’s and 2) it had been assigned to the seat number of another passenger who had also requested a special meal and the names had not been cross-checked to make sure everything was right.

Disaster was averted, but only just.  The meal prepared was exactly what I had asked for – plain grilled chicken with rice and vegetables and a fantastic fresh fruit salad for dessert – and M tucked in with gusto.  We were lucky that the other passenger had not started eating the meal before the mistake was identified and I’m glad to say that our return flight was not plagued with the same problem, although it still appeared that G had 2 meals (both the gluten-free and special request meals being assigned to her name), whilst M had none!  I hadn’t considered that a smaller snack would also be provided on the flight and was delighted Virgin Atlantic had thought further ahead than I had and provided another delicous fresh fruit platter for M to enjoy safely.

Gold stars all round!

Gold stars all round!

I have been really impressed with how well both branches of the Virgin family accommodated our needs and requests on the flights and wouldn’t hesitate to recommend them to anyone going on holiday with special medical needs.  We didn’t run into any unexpected problems with our travel arrangements and I will definitely consider travelling with them again.

 

 

 

122 days and counting….

christmascountdown…til Christmas that is.  No, I’ve not gone completely mad, nor have I forgotten that I need to give a comprehensive update about our summer travels, but when you have an allergy-suffering child, you need to grab the opportunity to buy friendly treats when it arises and Christmas is no exception. So, when an email from the fantastic Freefromforkids dropped into my inbox this morning, prompting me to peruse their Christmas range and place my order before stocks run out, I knew I needed to share it with all of you.

I’ve talked about the amazing Moofree chocolate before and was thrilled to discover their dairy- and soya-free chocolate advent calendars a couple of years ago, although they become increasingly scarce the closer to December you get. moo-free-selection-box-hi-res This year I was excited to read about their introduction of allergy-friendly chocolate selection boxes, a treat enjoyed by so many children and which G and M have never been able to experience. Moo-free have brought out new flavours of their chocolate this year, all of which are included in the selection and which I’m sure both G and M will be delighted to try.

If selections boxes are not your thing,  then Moo-free also offer a range of chocolate bars paired with either a festive themed soft toy or mug. Or you can avoid chocolate altogether and choose Haribos, Goody good stuff sweets or Jelly Bean Factory tubes as they are all great alternatives. Whatever you decide on, check the ingredients to make sure they’re still safe for your child – no-one wants an unexpected flare during Christmas – get your order placed in plenty of time and enjoy the end of the summer before the Christmas mayhem starts!

end of summer

 

Hay fever

dandelionEvery year I’ve had to cope with Mike’s relentless sneezing and G’s sniffles that signal the start of summer in our household.  I’ve never experienced hay fever (also known as allergic rhinitis) and have to confess to being more than a little fed up with the constant coughing, endless nose-blowing and general spluttering that would accompany every summer day spent outside with my family.  Given the rest of M’s allergies, it was something of a surprise that he’d never suffered with hay fever, but definitely a good one.  Naturally, that equilibrium couldn’t carry on and this year he crashed into the world of hay fever with style.

It all started with yet another bout of croup.  M struggles with croup 2 or 3 times each winter and has done since he was tiny.  We were always told he would “grow out of it” in time, but by the time he’d hit 5 and was still suffering, I began to doubt that it would be something we’d be saying goodbye to any time soon.  Last year I read an interesting medical article about “allergic or spasmodic croup“, which is caused by an allergic reaction to substances such as pollen as well as by acid reflux.  It wasn’t relevant to us at the time of reading, but I filed it away in the back of my mind to be mused on at a future point.  This point came after Mike and the children had been away for the annual Dads and Kids camping weekend and M was coughing that oh-so-distinct seal-like bark, which I remembered had developed at the exact same time last year.  I wasn’t sure what had caused the croup to develop, but the coincidence of timing and the memory of that article made me wonder if we were seeing some sort of allergic reaction manifesting itself in M.

stethoscopeWe popped along to see one of our lovely local GPs and put the question of M’s croup to her.  I wanted to be certain there was no underlying infection that needed to be dealt with and was keen to see what she thought it was.  She listened to M’s chest, heard his cough, took his temperature and reassured me that there was nothing untoward going on. Her opinion was that he was suffering from hay fever (tick to the allergic reaction to pollen) and the croup was being caused by post-nasal drip.  She suggested that we’d not seen many signs of hay fever in M before because he regularly takes antihistamines to help manage his EGID, but this year’s particularly high pollen count was too much for those medicines to manage.

M received yet another prescription, this time for a nasal spray to help with the hay fever and I have to say that within days of taking it, his croup cleared up and has yet to return.  So, M appears to have joined the ranks of hay fever sufferers in the family and I’m happy remaining the odd one out on this occasion!

Holiday planning

countdownIt’s that time of year when months, weeks or maybe just days of frantic planning come to fruition and families across the UK enjoy a week or two away from it all.  Whether it’s time in the sun, travels to far-flung shores or even just a few days experiencing something new in the UK, most of us wouldn’t think much beyond making travel arrangements, booking somewhere to lay our heads and throwing the essentials into a bag.  For years my saving grace was the thought that, insulin aside, if I had forgotten anything else even vaguely important, as long as we had money, we could pop to the shops to find a replacement.

Once you have children with chronic illnesses or food allergies, everything suddenly becomes that tiny bit more difficult.  No longer can you risk forgetting any part of the equipment or medicines you need to get your child through each day.  No longer can you assume that you will be able to get hold of the gluten-, dairy- or any other allergen-free food that your child needs to remain healthy.  And you have to consider what you would do if any one of your “what if” worst case scenarios was to actually happen.  With all of these things to complicate what should be a fun and relaxing time away from home, it’s no wonder that many families living with chronic illness choose to holiday at home, or within reasonable spitting distance, so that many of those concerns are alleviated.

Whether you consider it courageous or complete and utter madness, we’ve never been a family to stay close to home.  Mike and I both love travelling and have chosen to nuture a similar passion and willingness to explore the unknown in our children.  Part of that has no doubt been fuelled by our want to go back to Canada regularly to visit family and friends and over the last couple of years we’ve developed strategies to help us cope with travelling with M.  I carry doctors letters and copy prescriptions for both M and me in with our passports and last year discovered that we’re entitled to ask for additional luggage allowance to carry all of M’s medicines and foods with us free of charge.

walt-disney-mickey-mouseWith all this in mind, and our plans for this year’s holiday well under way, I contacted our travel company and airline to discuss our needs.  This year is our “holiday of a lifetime” as we are going to Florida to enjoy all things Disney and Universal before spending a relaxing week on the beach in St Petersburg and I want it to be as straightforward as it possibly can be given the challenges of EGID and multiple food allergies.  Planning for this trip started months ago and I had drawn up a list of things I wanted to find out to make our holiday as stress-free as possible.  My first set of questions was all to do with our flight out and I contacted the Virgin Atlantic Special Assistance team to talk over our needs.  I was quickly reassured that, as before, we could carry all of M’s medicines and foods in an extra suitcase and was advised to make sure I had copy prescriptions and doctors letters with me to make our security experience as smooth as possible.  They’ve also added a note to M’s booking to make it clear to all staff that we are entitled to carry extra luggage free of charge for medical reasons.  A big tick there that there will be no problems carrying M’s medical supplies.

Next the small matter of M’s in-flight meal.  I couldn’t imagine that any of the special meals on offer were going to avoid the wide range of allergens we needed them to, but again the Special Assistance team were able to help.  I sent an email with a full list of the foods M can’t eat and then followed it up with a phone-call.  The lady I spoke to agreed that it would be difficult to accommodate him with their standard meals, but asked what, if anything, would suit him.

Plain chicken and rice,” said I, “with no butter or sauces added and a few vegetables on the side.”

Leave it with me,” she said.

A couple of hours later an email popped into my inbox.  “I’ve spoken to the catering staff and they will make plain chicken and rice as requested for M for the flight.  I’ve passed on a complete list of his allergies for their reference, so please let us know if anything changes between now and your flight.  I’ve added all this information to your booking.”  I was amazed at just how easy adapting a meal to suit M was, but because I’m something of a worrier, I gave VA a quick call last week to confirm everything was okay for the meals.  “Yes absolutely.” said the man I spoke to this time round.  “I can see this meal marked on M’s booking and this list of foods to avoid.  Is that all correct?”  They’d even had the sense to annotate the return flight too, so I can be confident that M will be eating something safe in both directions.  They also suggested we carry a supply of safe snacks in our hand luggage (another extra bag could be carried free of charge if it was necessary), so that M won’t go hungry during the flights.

vroom_header_tcm4-588081The final element was our booking in the V-room airport lounge before we make our flight.  A complete breakfast menu is available to us, but scanning my eyes down the list of food, I could see that there was little on there that would be safe for either child, though G had a few more options than M.  This time I contacted Virgin Holidays as they run the airport lounges and asked what our options were.  I was given a list of foods that are M-friendly and advised to ask to speak to the chef when we arrive at the lounge to discuss what M would like for his breakfast.  They stock gluten-free foods as a matter of course and whilst they had soya milk as an alternative for dairy, this wouldn’t suit M.  Once again I was told that this wasn’t a problem and was hugely impressed to receive a follow-up email telling me that the chef of the V-room had contacted their suppliers and would get in some rice milk just for M on the day of our flight.  What more could an allergy-Mummy ask for?

fingerscrossed

Of course, there are no guarantees that any of this will work out as planned and I am cautious enough to be taking supplies sufficient to meet our needs as we make the trip to the US.  I will, naturally, let you all know how it goes once we’ve made our flight!

Simple Pleasures

When in the midst of dealing with the complicated life that is M, it’s really easy to get bogged down with the problems and overlook the simple pleasures in life.  As the saying goes, sometimes you need to just stop and smell the roses.  Despite the challenges of the last few months, there have been some wonderfully simple pleasures that are a precious reminder of just how good this summer was between the difficult bits:

  • Standing in the back garden with the children and watching the Red Arrows fly overhead

    Courtesy of en.wikipedia.org

    Courtesy of en.wikipedia.org

  • G & M using walkie-talkies made from nothing more than scrap cardboard and their imaginations
  • Drinking an ice-cold glass of home-made lemonade

    Without the "pink"

    Without the “pink”

  • Taking the train into the city and walking around on a local Art trail whilst investigating the area and sights
  • Watching G and M cheer as Andy Murray won Wimbledon

    Courtesy of capitalfm.com

    Courtesy of capitalfm.com

  • Watching G and M then recreate the Wimbledon moment using our washing line and their beach tennis set
  • Late night cuddles with M and early morning ones with G
  • Enjoying some classic Disney films before bed and finding some new favourites

    Courtesy of hdwpapers.com

    Courtesy of hdwpapers.com

  • Home-made burgers cooked on the BBQ SAM_1215
  • Camping in the garden – well this was one for Mike and the kids, I am definitely never, ever going to consider camping to be a pleasure of any kind
  • G & M spending hours out in the garden:  building dens, climbing trees and bouncing on the trampoline
Courtesy of dartmoor-npa.gov.uk

Courtesy of dartmoor-npa.gov.uk

  • Long lazy summer days spent lying on the beach, building sandcastles and splashing in the sea

SAM_1549

  • Perfecting a myraid of free-from, M-friendly recipes and enjoying tasting each and every one!

    Rainforest flapjacks

    Rainforest flapjacks

School’s out for summer!

I have that song by Alice Cooper bouncing around in my mind as I type.  I wish I could have it playing in the background as you link to this blog post, but the best I can do is point you to this You Tube clip.

We’re in the final stretch of the school year and the end is tantalisingly close.  G finishes school tomorrow and M has one last day on Monday.  The promise of 6 weeks of summer (well I can but dream) to enjoy is wonderful.  A time for us all to rest, recuperate, have some fun and hopefully see M return to better health for the start at his new school in September.

The last 2 weeks have been mixed.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Last weekend, Mike took the kids away on a “Dads and Kids” camping weekend, organised by other Dads in our church.  The weather was amazing, they had a great weekend, got to build on some fantastic friendships and I got to have a weekend off!  I wish I could say I spent the weekend doing nothing but relaxing and spoiling myself, but the reality is that I spent the weekend catching up on some long overdue household chores – ironing in this temperature is no mean feat – and trying to stay cool.

Courtesy of export-forum.com

Courtesy of export-forum.com

Unfortunately, M’s hoarse throat on Friday afternoon turned into, well, I’m not 100% certain what it turned into, but it might have been croup or a heavy cold or a chest infection or any combination of the above.  By Sunday evening, his temperature had shot up to over 39 °C and that started 3 days of a very poorly M.  He had a sore throat, high temperature, complete loss of appetite, croup-like cough, no energy to do more than sit and watch TV and felt sick every time he took his new medicine.

The problem is for M that he just has no reserves to fall back on when he becomes ill.  His body can’t cope with the illness and his EGID symptoms will typically flare too.  He has, however, headed back to school today; the lure of the Year 2 leavers’ disco after school being too great for even my poorly boy to ignore.  It is such a shame that he has missed 3 days off this week as he moves on from the school at the end of term and will miss his friends.

Courtesy of yola.com

Courtesy of yola.com

Our plans for the summer holidays are simple.  Mike and I will spend most of our weeks working, whilst G and M spend some time with my Mum.  We are off to Portugal for a week once again and I’m already beginning to plan what foods I will need to take with us.  The time I have at home will be spent playing in the garden, investigating our local area and trying out some new baking recipes that I’ve been given by friends.  Most importantly, we will be trying to encourage M’s body to recover and hopefully see a return of his appetite. The hot weather at the moment isn’t helping, but I would love to see him eating as much as he was even a fortnight ago.  We don’t have any return visits to GOSH planned until October, but I will be putting in another call to the gastro team this week to see if there’s anything else we should be doing or if they do want to see him ahead of the next appointment.

Most importantly, my plans include ice lollies…lots and lots of M-friendly ice lollies!

Courtesy of lovefood.com

Courtesy of lovefood.com