Tag Archives: holidays

Christmas without food

foodIt’s not until you find yourself in a situation where you need to avoid food that you realise just how much of our everyday lives and how many social occasions revolve around meals or other food-based activities.  Just think about it: birthdays are celebrated with a mix of party food, cake, treats for your friends and – when you’re turning 9 – party bags filled with sweets; Easter inevitably includes the requisite chocolate egg plus Easter biscuits and Simnel cake; a catch-up with old friends often starts with coffee and cake and may well move on to drinks and dinner; and Christmas is, quite simply, the time when we all over-indulge and go mad, filling our cupboards and fridge with chocolates, biscuits, mince pies and brandy butter in a manner that suggests there’s a genuine risk that we might run out at any minute.

Our plans for this Christmas itself were relatively simple.  My Mum had suggested that we served a buffet over the festive period, rather than having the traditional mid-afternoon sit-down feast that we’ve all become accustomed to, which seemed a great alternative and allowed us to cater for everyone’s needs.  Much to my surprise, M was keen for the rest of us to sit at the table for supper on Christmas Eve, whilst he sat in the other room watching some Christmas TV and sipped his glass of full-sugar 7-up, one of the few treats he’s allowed alongside his elemental feed.  By Christmas Day, he wanted to have company in front of the TV and Boxing Day saw us eating in shifts, whilst the others played board games or watched films with M. We quickly learned to let M decide where he was happiest being at meal-times and included him in as many traditions as we could – pulling Christmas crackers, sharing the jokes, wearing paper crowns and making the time as normal as possible without focussing all our attention, and his, on the food.

Courtesy of abcnews.go.com

Courtesy of abcnews.go.com

We thought we had covered all the bases this Christmas, or at least, all those we considered to be the biggies, but it was the little things that crept up and caught us unawares.  Our Christmas stockings always include chocolate treats (dairy- and soya-free naturally), a box of tic-tacs, a handful of nuts and a satsuma pushed down to the toe, but none of those could find its way into M’s stocking this year.  I had bought Moo-free chocolate advent calendars and selection boxes for both children before we knew he’d be going into hospital and whilst M had managed to have 4 advent chocolates before his admission and G enjoyed the rest whilst he was in, I had to work out how to give G the selection boxes without rocking M’s world too much.  This was one of those small things that needed a lot of late night planning on Christmas Eve. slices

In stark contrast, Mike and I had considered beforehand the treats that usually adorn the coffee table at home and deliberately didn’t leave out the boxes of Turkish delight or the dates or the orange and lemon slices in their normal home.  Instead, we stored them in a safe corner to be pulled out once both children were in bed as we didn’t want them to be a constant reminder of what M couldn’t eat and yet he objected more to us hiding these goodies away than leaving them on display. “It just isn’t Christmas, Mummy” was his feeling on the matter, without these seasonal delights out for all to share and enjoy.

I’m not sure I know that we didn’t get everything 100% right, but given that we were very much thrown in the deep end with little advice on how to survive the day, I think we did okay.  The biggest lesson learnt was to be flexible on a daily basis and not to expect one day to be like the next, both at home and at school.  Some days M sits and chats with G at the dinner table, enjoying a Foxes glacier mint (another small treat allowed) and a glass of 7-up whilst she eats her meal and yet the next will find him close to tears and hidden away in another room for the duration.  There is no pressure for him to constantly be a part of every meal-time and as long as he spends some quality time with the rest of the family, I’m happy to give him the time-out he sometimes so desperately needs.

Here’s to 2015

That’s another year done, more adventures experienced and new lessons learned.  We’re starting 2015 with a positive outlook – the switch to NG-tube and elemental feeding has already started to see some health improvements for M and we finally have a plan for moving forward that will be looking for the root cause for some of his health problems.  Both children are happy and settled at school and G is looking ahead to moving into secondary school in September. We’ve met and made friends with several of the lovely FABED families and have been able to help raise funds and awareness for this charity and the condition it supports.  I’m not sure what 2015 holds for us all, but, if nothing else, I’ve learned to hold tightly to my hat as it’s certain to be a bumpy ride!

Wishing you all a happy, ssuccessful and peaceful 2015.  May your wishes and dreams be fulfilled. 

 

 

Merry Christmas!

May your Christmas be filled with love and laughter; times of happiness and of reflection; family and friends…

20141222_193603[1]

…and may 2015 be a year that brings new hope, understanding and peace.

20141225_012022[1]

Christmas decorations with a M twist

Whilst we are processing all that has happened in the last 3 weeks – think hospital admission (M), 11th birthday (G), 15th wedding anniversary (Mike and me), Carol services x 4 and metres of wrapping paper – I thought I’d share some quick snaps from a Christmas project that M undertook before he headed into GOSH.

20141126_204723[1]The challenge came from school – to create a unique Christmas tree decoration for a competition – and M knew exactly what he wanted to make.  A couple of weeks earlier, we had been watching a Christmas film (don’t ask me which one as I honestly have absolutely no idea, other than it starred Tori Spelling and was loosely based on the Dickens classic “A Christmas Carol”) and he had been fascinated to see the children threading popcorn into a garland to hang onto the tree.  He was adamant that this was what he wanted to make for the school competition, so Mike popped a saucepan of corn kernels and M and G sat down at the coffee table to start their threading.

20141126_204743[1]Bedtime arrived quickly and M asked if he could continue the job upstairs once he was ready for bed.  As M is rarely asleep much before 11pm on any given night, I swiftly agreed, knowing that this would be a great activity to keep him occupied and stop him bothering G too much, as well as a sneaky way to get 20141127_084222[1]another finger exercise to improve his fine motor skills into his day.   Whilst M was upstairs threading his garland, I was downstairs looking for simple instructions on how to make loom band candy canes to add an extra festive twist.

 

Six feet and six candy canes later, the garland looked amazing and M was proud to enter it into the competition.

20141127_084149[1]

 

(Oh, and that Christmas film we’d watched? – A Carol Christmas.  Well, I couldn’t leave you wondering!)

National Chocolate Week – Part 1

I’ve rather belatedly discovered that this week is National Chocolate Week and what better way to enjoy this amazing celebration, than to review 2 fantastic AND M-friendly chocolate products in my blog?

20140916_170227Tonight’s offering are the wonderful creations from Moo-free.  I discovered this chocolate 2 or 3 Christmases ago, when I spotted it on the shelves of one of my local health food shops. The chocolate is vegan and soya free and is made using sunflower lecithin, instead of soya lecithin, which my hyper-sensitive boy reacts to, even in the tiniest of trace amounts.

The chocolate is rich and delicious and has become a staple of our fridge at home.  They have developed their range over the last couple of years, which now includes the likes of Cheeky Orange, Minty Moo, Bunnycomb, Chocolate Drops and Cranberry and Hazelnuts bars to name but a few.  Their seasonal offerings are equally impressive with Chocolate Santas, Chocolate Advent Calendars and a brand new Chocolate Selection box as well as Easter Eggs on offer at appropriate times in the year.

Moo-free were kind enough to send us the individual bars included in their Christmas Selection box and, needless to say, G and M were more than willing to taste-test each bar and give their marks out of 10:

G M
Cheeky Orange A lovely crunch and just the right amount of flavour

 

Mark:   10/10

Nice, but the orange flavour reminds me of medicine

 

Mark:   9/10

Minty Moo Delicious, the right amount of crunch & an awesome flavour

 

Mark:   10/10

Not quite 10/10 as it tastes a little like toothpaste & I don’t like seeing the mint pieces

Mark:   9/10

Bunnycomb Perfect crunch!  I love it

 

Mark:   10/10

I loved it, great flavour and the perfect crunch

 

Mark:   10/10

Chocolate Santa Nice, but I liked the flavoured ones more 

Mark:   9.5/10

The flavour’s good and the shape is fantastic 

Mark:   10/10

Overall family rating:  10/10

20140916_170326

Both children enjoyed them all and are more than happy to nibble on whichever one is available.  If they’re able to choose, then M would always go for the Bunnycomb as his favourite flavour, whilst G’s top pick is the Minty Moo.  They are readily available in most of the big supermarket chains now, are reasonably priced and the choice is brilliant especially as it is all safe for M.  I’m thrilled by the offer of a selection box this Christmas, the first time either of my children will have been able to enjoy this festive treat.  You can buy these from some supermarkets or can find them on-line at Freefromforkids or other on-line stockists.

 

 *Disclaimer – We were sent this selection of Moo-free chocolate bars for the purpose of an independent review and the views expressed are entirely my own and those of G and M.

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

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

Our fabulous Florida photo round-up

A week filled with appointments right, left and centre has left me with little time to write a full blog-post.  As we process all that’s been said this week, what better way to keep smiling than a photo round-up of our fab time in the Florida sun:

Top Tips for Theme Parks (and some amazing US foods!)

We had an amazing 3 weeks in Florida, even if they do seem now to be a dim and distant memory as we’re back into the routine of school, hospital appointments and work.  Before I file those memories away, however, I want to share some top tips we picked up for when visiting theme parks with children, or with those with a chronic illness, or anyone with food allergies.

  • DISABILITY ACCESS PASS – I was tipped off about these from a lovely lady from my choir and immediately investigated what they were, how to get them and whether M would qualify. Whether you are going to Disney, Universal Studios, Legoland or Seaworld, if any member of your group has a disability or condition that makes a lengthy queue wait a difficult prospect, then you can benefit from these passes. 20140916_182709 The passes allow the holder and their group to effectively bypass the challenge of waiting by giving a return time, which then enables the party to enter the ride via either the exit or the fastpass queue.  To support our request for a pass, I had a doctor’s letter detailing M’s EGID and the associated bowel problems and we were given a pass without problem.  These passes were invaluable as we didn’t have that mid-queue panic of needing to rush off to find a loo!
  • ICED WATER – Don’t spend lots of money on bottled water as you travel around the park.  Instead, pop into the nearest counter-service restaurant or anywhere that serves drinks and ask for a glass of iced water.  Keeping hydrated as you walk around the parks in the hot Floridian sun is important and nothing quenches your thirst like a glass of iced water and it’s somehow even better when it’s free.  Be warned that you may struggle in some places – we could only get ice and no water at Legoland Florida –  but it’s definitely worth the ask.
  • PARK ACTIVITIES – And I don’t just mean the parades, shows and fireworks that everyone knows about.  At Epcot, the kids were given a handset that sent them on a journey around the countries of the World showcase, following clues, completing challenges and seeing some really cool special effects to complete the secret missions set by Phineas and Ferb.  Once that country’s mission was done, we had the option of moving on to another country for another mission or finishing the game then.  20140816_230608In Magic Kingdom, we discovered the delights of the “Sorcerers of the Magic Kingdom“, which was a similar activity to Epcot, but this time saw us collecting cards, defeating well-known Disney villains and finally completing the first level of the game.  M and G loved this so much that we spent an unplanned afternoon back at Magic Kingdom, running around to complete the first level and collect as many cards as we could before we left.  The final activity I’d recommend, and one I’m extremely proud we managed to achieve, was participation in the Jedi Training Academy at Hollywood Studios.  Getting M and G signed up for this involved a very early start to be close to the front of the queue for rope drop, a rush to beat the crowd to the sign-up and absolute focus that that, and nothing else, was our first goal of the day.  The 20 minute session saw them being taught by a Jedi master, before taking on none other than Darth Vader to prove their ability as a young Padawan and their loyalty to the cause.  20140817_152258
  • MAGIC SHOTS – This is something that is specific to WDW, but is definitely a lot of fun.  We had bought a Disney Memory maker package, which allowed our group to have access to any photos taken in park, on rides or in resort by a Disney photographer for one, relatively low price.  PhotoPass_Visiting_Magic_Kingdom_7033012070This automatically gave us easy access to Magic shots, which see Disney characters, amongst other things, to be added to your photograph.  Any Disney photographer not using a tripod can take a magic shot and M and G loved running around, tracking down photographers and asking if they could take a magic shot.  The photographer would pose us and give us instructions for facial expressions before taking the photo and adding it to our memory maker package.  I could then view the images on-line later in the day to see who or what had been added into the photo.  The magic included Tinkerbell, Stitch, Olaf, butterflies and a bunch of Mickey balloons.

Should you be travelling to the USA and come across these delicious treats, I would highly recommend stocking up and enjoying them whilst you can.  G and M loved all of these and the small supplies we brought back home with us are now nearly all gone – must mean another trip to the US soon!

  • Babycakes – these are the most delicious, allergy-friendly cupcakes I have come across and were available in some restaurants in WDW.  20140812_011542Luckily for us, they were included in the dessert options at the Mara restaurant at Animal Kingdom Lodge and we bought enough to see us through our final week spent in St Petersburg.  You can find them at a few other locations across the USA and I would highly recommend searching them out if you’re anywhere nearby!
  • Silk Almond milk drink cartons – these are a great alternative for those who aren’t able to drink either cows’ or soya milk, especially as they come in both vanilla and chocolate flavours.  We discovered them at the local supermarket in St Petersburg and I wish I’d known about them sooner.  M really enjoyed being able to have a chocolate milk with his dinner, especially as G had been having chocolate and vanilla soya milk whilst we were staying in WDW.
  • Enjoy Life cookies & chewy bars – another great hit with M and G, especially the soft-baked cookies.  20140819_034546These were the brand stocked in a lot of the WDW restaurants which meant they could have a pudding with their meals, but we found them easy to buy in the local supermarkets too.  They were such a huge success with my pair that I even brought 3 boxes of cookies home with us – Snickerdoodle, Chocolate Chip and Double Chocolate Brownie.  The chewy bars were equally delicious and G found it hard to choose between the Cocoaloco and Sunbutter Crunch flavours.

Dolphins, Killer Whales and all things underwater

When originally planning our 2 weeks “doing” Orlando, Mike and I made the conscious decision not to visit any of the multitude of water-parks you can find there.  As much as both children enjoy swimming, M’s recent struggles with his bowels meant that we were uncertain of how well he would cope with a day in, out and around the swimming pool, so instead, we opted for 2 other water-themed parks:  Discovery Cove and Seaworld.

Discovery Cove

IMG00002smOne of the things I was keen for the children to experience (and to be perfectly honest me too) was swimming with dolphins and where better to give this a go than at Discovery Cove.  This idyllic haven is hidden away in central Orlando and it transports you away from the hustle and bustle of the theme parks almost as soon as you step through the doors.  We arrived early, booked in for our dolphin adventure and then headed off to the beautiful beaches and pools to find a place to camp out for the day.  The park only allows a maximum of 1,300 people entry on any given day, which ensures that there is room enough for everyone to enjoy what’s on offer. We settled next to a pool where you could swim with stingrays and other tropical fish and then headed off to the main restaurant to talk to the chef about breakfast and lunch.

Discovery Cove is a very different experience to the others in Orlando as your ticket price covers all your food and drink for the day including breakfast, lunch and snacks and they request that you don’t take any of your own into the park with you.  My initial email to their special assistance team had resulted with their Head chef calling us at home to discuss the day of our visit and M’s food requirements.  They were able to offer M and G a good choice of foods for both meals and, even better, had 3 allergy-friendly snack boxes that were readily available at all of the food concession locations and included M-friendly treats such as fruit snacks, Orgran Outback animal biscuits, pretzels and portions of houmous.  Food sorted for the day – and maybe a few extra snacks too – we spent the day lazing in the sun and learning how to snorkel amongst the fish.

IMG00015sm

M and Clipper

The highlight of the day was, quite obviously, our swim with the dolphins.  M had been nervous as he’s not the strongest or most confident of swimmers, but there was no need.  The trainer encouraged both M and G to feed, pet and even kiss our dolphin, Clipper, before their individual swims and they loved every moment of it, despite the cold temperature of the water! M was able to do the “shallow” swim, which allowed his feet to comfortably reach the bottom at all times whilst still being pulled along by the dolphin.  G, Mike and I took part in the “deep” swim and the thrill was exhilarating. All in all, we had an amazing day, M and G were desperate to do it all again and I wouldn’t hesitate to recommend this to anyone.

Marks out of 10: 10 – a real once in a lifetime experience for all the family and the food offerings were impressive too

Seaworld

blue horizonsHaving had such an amazing experience at Discovery Cove, we were keen to see how their neighbour, Seaworld would compare.  The day started well, with efficient service at guest relations to issue our disability access pass and a park map that indicated where allergy-friendly foods could be found.  We set off on our way around the park and G and M were delighted by the various displays and shows we could see.  First, we oohed and aahed at the amazing dolphins and beautiful birds of the “Blue Horizons” show, which instantly drew a response from G that she’s planning to work at Seaworld training dolphins when she’s older; and later laughed and disappointingly didn’t get splashed by the mighty killer whales in “One Ocean“, despite M’s best efforts of sitting us in the splash zone!

Due to the wealth of food available to us at Disney – an opportunity that we’d certainly taken full advantage of – we didn’t feel hungry enough to need to investigate our food options until we got to lunchtime. The children were excited to see an allergy-friendly pizza restaurant on the map and we headed there with our fingers crossed that we might be able to enjoy pizza for a change.  Disappointingly, we once again hit a problem.  The gluten-free pizza base came ready topped with tomato sauce and cheese, instantly rendering it unsuitable for both G and M.  I was surprised to find this was the case, but quickly ushered the children away from there and headed off to the next location.

Photo taken by M

Penguin photo by M

Two locations later, I finally stumbled into the Spice Mill restaurant and met their allergy server and chef, who discussed our needs and what options were available to us.  Both children settled on burgers, served in allergy-friendly rolls with a side of fries for G and a hefty portion of water-melon for M.  We were able to jump the queue and, as we paid, the server prepared our food and brought it to us as quickly as possible.

Lunch finally sorted, we spent the afternoon in Antarctica with the penguins and getting extremely wet on the impressive “Journey to Atlantis” log flume ride, before Mike and I took G and M out on the lake in pink flamingo pedalos.  It was another good day and despite the uncertain start, lunch turned into a great success.

Marks out of 10:  8 – the children loved seeing the shows and the animals, but we were let down by the assumption that gluten-free pizza with cheese could be considered fully allergy-friendly.

Legoland Florida

As well as our successful days at DIsney and our disappointing foray to Universal, Mike and I treated the children to a day out at Legoland Florida20140809_232045We are big fans of the Legoland Windsor resort and had a marvellous visit there last summer with our friends from the wonderful charity, FABED, so were excited to make a visit to the bigger and better (well it’s American so it had to be, right?) Floridian version.  This theme park is situated on the site of the old Cypress Gardens and has kept a relatively small portion of the original park at the centre of the new one.  It’s around a 45-minute drive from Disney and was easy enough to find once we were headed in the right direction.  The park was surprisingly empty upon our arrival and we headed straight to Guest Relations to see if we could get a disability access pass (or their equivalent) for M.  The pass was issued without question and Mike then asked about what allergy information they had available and how we could manage this during our visit. The very helpful guest relations staff member knew there was a hard copy somewhere of this information, but sadly couldn’t put her hands on whilst we were in the office.  No matter, she reassured us, it was all available online.  Great, I thought, I could hop onto their website using my tablet and work out where we could safely eat.  Ah no, Legoland Florida has no wi-fi available in the park, so it was actually impossible to see any of the information we had been advised to access.

20140809_195203

Need a car? What better than a Lego Ford!

Being seasoned travellers with M and G, of course, we had our trusty rucksack full of safe foods and reasoned that we could and would think on our feet when it came to lunchtime. My notes from our day trip record that it was “good, but not the well-oiled machine that WDW is”.  The queues were painfully slow and the service not massively efficient.  Their staff members appeared, for the most part, to not be terribly enthusiastic in their roles and I felt it would benefit from finding more customer service orientated staff.  Mike had to wait for nearly 30 minutes just to get to the front of the queue to ask whether they could accommodate food allergies at that particular food concession unit.  There was a copy of an allergy menu there, but we were disappointed to discover after ordering that the allergy-friendly “plain” burger was served with cheese!

20140809_222723

We each picked our ride of choice from the map and started heading our way around the extensive grounds to make sure we made the most of our one day there.  Many of the rides were similar to those found in Windsor and the children had a great time revisiting some of their old favourites as well as trying out a few of the “new” ones.  20140809_222642We enjoyed the US version of Miniland although I was disappointed at how shabby many of the models appeared, especially as you could easily identify where elements were missing due to the telltale marks  and empty spaces on the surfaces.  Nevertheless, it was fun to see the likes of Las Vegas, Hollywood, the White House, San Francisco and New York depicted in lego.

 

20140809_210205Unfortunately the weather was somewhat inclement and so many of the rides closed for around an hour or so during the afternoon.  We took advantage of the opportunity and explored the original grounds of Cypress Gardens and stood in awe of the amazing Banyan tree that can be found there.  We were hoping to see the Pirates water show as M and G love the “Pirates of Skeleton Bay” in Windsor, but the threat of thunderstorms and lightening meant that the final performance was cancelled.  Despite all of this, we enjoyed our time there and had plenty to keep us all busy for the day.  I would say that Legoland Florida is worth a visit if you, or your children, are lego fans, but in my opinion, Legoland Windsor beats it hands down.

Marks out of 10:  6 – a good attempt, but the queuing system, park maintenance and food available let it down.