Tag Archives: Conditions and Diseases

Finishing the summer in style

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With Christmas now just 6 weeks away – eek, where has this year gone?! – it’s hard to believe that I still haven’t finished telling the tales of our busy summer. You’d have thought our fairly last-minute plans to fly out to Canada for 2 weeks would have been more than enough to keep us all occupied, but we had even more adventures squeezed in to the final 10 days of the summer holidays before school started back.

We had the return journey from hell with a disrupted flight thanks to a group of rowdy French exchange students, who got into arguments and near fist fights with both the airline crew and other passengers, just rows away from the seats we were sitting in. I have never been so upset on a flight and am just grateful that the children were more entertained by the films they chose to watch, than scared by the events going on around them. This behaviour continued in the Dublin airport terminal and didn’t help the stress of a delayed flight back, which meant we missed our onward flight home by mere minutes. Mike and I were tired, grumpy and so fed up by all we experienced, that we complained long and hard, which fortunately secured us a later flight home, though it was 12 hours later than originally planned, and a hotel room for the day, which gave us the chance to catch up on some much-needed sleep, something that had been impossible on the plane.

We were both back at work the following day, whilst G and M went to my Mum’s for the last 2 days of the week. We rushed through the washing and then found ourselves packing once again for a weekend in Liverpool to see the Terracotta Warriors exhibition that we had missed when we visited back in April and what was, perhaps, the highlight of M’s summer holiday – a week at Over The Wall. Our weekend in Liverpool was a great success, especially as we managed a return trip to both of the fabulous freefrom restaurants we had discovered on our previous visit, something both children were desperate to do. The morning spent at the World Museum was well worth it and we all enjoyed seeing the amazing Terracotta Warriors that were on display. It’s hard to believe that it’s been 17 years since Mike and I first saw them in Xi’an, China and fantastic to introduce G and M to this incredible ancient tribute to China’s first emperor. They also insisted we explored every other part of the museum we could and given the rather miserable weather, it was a great way to entertain them whilst away from home.

From Liverpool, we headed back South, dropping M off at the Midlands OTW Health Challenges camp for what we had no doubt would be an amazing week for him again. I cannot begin to describe the incredible benefits that M gets from OTW and why this charity deserves all the support and praise we can possibly give it. Once again the camp chefs outdid our expectations and created meals for M that went beyond our wildest dreams – and yet again apparently put my attempts to shame. This year, however, I can take great solace in the fact that M shared with the chef that I put my recipes on this blog and he not only took a look at them, but also used them to help cook treats for M whilst he was at camp. Just as with his stay at the South HC camp 2 years ago, M was exhausted after a week of unbelievable fun and challenge and just about managed to survive the very final bit of our seemingly endless summer adventures.

OTW’s Midlands camp is based just minutes away from the National Memorial Arboretum near Lichfield, Staffordshire and it seemed a shame to be so close and not stop there for a relatively quick visit. The NMA is somewhere I’ve long considered visiting and we chose a beautiful day to make the trip. Both children were about studying the World Wars at school and with 2018 marking the centenary of the Armistice, it seemed fitting to spend some time walking the grounds and exploring the many memorials that are found here. It was a remarkable and moving place to visit and I’m glad we made the effort to, despite M’s reluctance and overwhelming tiredness from a week away from home.

A Canadian Treasure Trove

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Whenever and wherever we travel, I also keep a beady eye out for any new foods that are safe for both children. I do, of course, take an ample supply of M-friendly snacks with us as there are no guarantees that we’ll find anything that he can eat, but I always keep my fingers crossed that his hopes are met, if not exceeded whilst away from home. This year I was especially hopeful that we might find a handful of items for them both, though our last visit to Canada showed us how challenging it can be to avoid soya and corn, which can be found in the most unexpected of places.

The good news is that we did found some great snacks and even managed to bring some of them home with us to keep G and M going for a short while at least. We discovered them all at the Independent grocery shore on the shore of Lake Huron and don’t really know how readily available they are elsewhere, but I’d definitely recommend giving them a go if you get the chance. These are just a few from this hidden treasure trove:

Soy-free Vegenaise – G absolutely adores mayonnaise and can, of course, eat “normal” brands without problem. However, M often feels he’s missing out and it’s taken a long time to find a rice-based version which he can eat and even then it’s not that easy to buy it. Discovering this brand just sitting in the fridge alongside other food items was so exciting and something I hadn’t expect to be able to replace during our holiday. M said it tasted great, G was equally happy to eat it and I was delighted to carry a jar around with us for the entire 2 weeks we were there.

Laiki Rice Crackers – another big success with M were these rice crackers, not least because he had a choice between their red rice and black rice versions, something he rarely gets in everyday life when it comes to his food. They proved to be the perfect accompaniment to lengthy car journeys, of which there were several, and were surprisingly moreish, with the pack not lasting long once opened.

Daiya Cheezy Mac – It’s a well-known fact that I am a big fan of Kraft Dinner, a boxed ready meal of macaroni cheese that became a staple of my diet whilst studying at Ottawa University over 20 years ago. G similarly loves macaroni cheese and I was thrilled to find Daiya’s gluten- and dairy-free boxed equivalent for her to try. This was a resounding success with my sometimes picky eater and we brought several boxes home with us, although they’ve all disappeared now!

Made Good Crispy Squares – despite the previous successes achieved, the biggest hit of our holiday was the discovery of these Crispy squares, which came in both Chocolate chip and Vanilla flavours and made M smile for days. They came at the perfect time as we had found several gluten- and dairy-free treats for G, but the prevalence of both soya and corn, neither of which M can tolerate, was making it near impossible to find something safe for him to enjoy. I had promised to make him some banana cookies whilst we were staying at Grandma and Grandpa’s house, and whilst I did that also, the addition of crispy squares to our rucksack each day made a huge difference.

Eating Out with Allergies in Toronto

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There’s very little we love more as a family than finding the perfect places to be able to go out and eat a safe meal together. Having found some wonderful restaurants and cafes in both the UK and abroad since M went elemental 4 years ago, we couldn’t wait to see what Toronto might have to offer. The first part of our holiday spent near Lake Huron with Mike’s parents meant that we ate home-cooked food with a few very welcome additions that we discovered at the local Independent grocery store; whilst at the Beachwood resort we were very grateful to their accommodating chef, who agreed to whip some plain rice, chicken and bacon for M to enjoy.

It was once we were downtown in Toronto that we really had a good chance to get out and explore what restaurants we could find. I had taken the precaution of packing our usual extra suitcase full of safe foods before leaving the UK, had kept it topped up with the new treats we had found and booked to stay in a self-catering apartment fairly close to the lake – just to make sure every base was covered when it came to feeding my hungry pair. Our biggest disappointment was that there are no longer any Hard Rock Cafes in Toronto, so we had to search hard to find a great alternative.

Our day spent at the CNE meant that we didn’t venture too far to find our meals, instead heading into the expansive food building to work out what from the hundreds of offerings might be safe for both G and M to eat. Mike and G went in one direction to find her ideal lunch, whilst M and I disappeared in a different one to find his. My wonderful sister-in-law managed to secure a table in front of the Colossal Onion booth and we all eventually wound our way back there to actually sit down and enjoy some food. M was thrilled to find some apple fries dusted with sugar and I then queued an inordinately long amount of time at the aptly named Bacon Nation to buy a cup of bacon to provide his protein, where I refused to even consider the purchase of the $100 Gold Burger, though I did see someone else carrying one away from the counter. Fortunately, we were carrying a number of rice-based snacks around with us too, so it wasn’t the completely unbalanced meal that perhaps it sounds!

For our one meal out, we chose to go to Jack Astor’s Bar and Grill, thanks to some frenzied internet-searching on my part to find an allergy-friendly restaurant to try. They had a good array of gluten-free offerings to choose from and both children opted for a bacon cheeseburger, without the cheese. Decisions made and food ordered, G and M enjoyed writing and drawing on the paper tablecloths whilst they waited for their meals to be cooked. The plates of food that arrived looked amazing and didn’t last long with either child – a sure sign that the food is good. The portion was as large as we’ve come to expect with Canadian servings, but that didn’t stop them eating it all, although we had no complaints about being hungry for the rest of the evening!

Her Inner Thrill-seeker

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The next stage of our Canadian road trip found us driving over 5 hours east from Lake Huron to the peaceful resort of Beachwood, Lakefield to join a number of our friends and their families for a short summer break. We had been lucky enough to book a room in the main lodge for a couple of nights, which gave us the chance to catch up with these friends who we might otherwise have missed. It was also a fantastic chance for both G and M to catch up with some of their godparents, as 2 of G’s godfathers and one of M’s numbered amongst our friends staying at the resort that week.

G and M were both excited at the prospect of spending a few days lakeside and were delighted to find that they could swim in both the small pool and the lake itself. The resort was amazing and we were easily able to walk between our room and the various cottages our friends were staying in whenever we wanted. Our children were the oldest there and soon became popular, G in particular, with the younger crowd. It came as no surprise that they also befriended some of the other children on site and spent a lot of time moving between pool and lake to play games with whoever was around. As well as the swimming, the children also loved the opportunity to go out in a canoe (or should that be kayak?!) with Mike, hitch a lift on the speedboat when it took guests out water-skiing and spent a huge amount of time climbing and playing on the giant inflatable obstacle course in the middle of the lake. It was here that G started to find her inner thrill-seeker, something that came as a complete surprise to us all and was to develop even more as our holiday continued.

With our couple of days with friends behind us, we travelled south to the town where Mike grew up and our home for the rest of that week. Our primary aim whilst we were there was to visit Canada’s Wonderland, an awesome theme park and one that I had never before been to, despite my numerous visits over the last 20 years! Not only did we have 2 days of incredible fun, but we spent it with the rest of the family we hadn’t yet had a chance to see and both G and M loved every moment of racing around the park and trying out the rides with their cousins. It was here that G’s newly discovered thrill-seeking personality really came into its own as she and her cousin, H, challenged themselves to ride pretty much every roller-coaster or ride they could find. The boys were slightly less keen to ride the bigger rides, which suited my sister-in-law and me just fine, and quickly found themselves enjoying similar experiences, which were very different to those their sisters were undertaking.

G’s confidence in trying out so many different roller-coasters and rides – there’s only 1 I can remember her refusing to go on which the rest of us did – came as a complete surprise to us all. Our trip to Florida 4 years ago found M being slightly more adventurous than his big sister and I really hadn’t expected things to change as much as they did. It was fantastic to see G and H really enjoy the time they spent together, usually with Uncle Dave, though Mike found himself on some rides that he perhaps wouldn’t have otherwise chosen! It really was an amazing time with both family and friends and we could barely believe that we were heading into the final few days of our holiday as we packed up and moved on to our final destination in downtown Toronto.

Back to Canada

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Getting to Canada was not quite as straightforward as we had expected it to be. As I said in my last post, our decision to go had changed fairly last-minute and whilst I had managed to find a great deal for us to travel via Dublin, we had some unexpected last-minute stress when a work colleague mentioned that the rules had changed and Mike and the children might need Canadian passports to be able to enter the country. Fortunately, after a few extremely stressful hours as I anxiously trawled through the pages of the Canadian High Commission’ website, I discovered that we could apply for special authorisation to travel without the correct documents as there wasn’t enough time to process them before we left.

Bags packed, we arrived at our local airport and made our first pit stop in Dublin. Our layover wasn’t long enough to allow us to venture into the city itself, much to the disappointment of G in particular, so instead we explored the airport terminal and managed to find one of the airport restaurants that could make gluten-free bacon sandwiches for both children to help assuage their inevitable hunger. I had naturally packed more than enough food to satisfy their appetites during the flight, but was pleasantly surprised when the Aer Lingus meals arrived for lunch and had made a reasonable stab at providing the plain rice and chicken I had requested, despite the email I’d received telling us that they simply couldn’t accommodate M’s dietary needs at all.

We had left the UK in glorious sunshine and arrived in Toronto to hot weather, but pouring rain, which didn’t impress the children for their first visit in 5 years. However, M in particular was delighted with the huge Ford Explorer that was to be our vehicle for the duration of our 2 week stay and that went a long way to keep them cheerful despite the miserable weather. We headed north, on our way to Lake Huron and Mike’s parents’ house, stopping overnight in Orangeville for some much-needed sleep before we reached our final destination.

The next 4 days were spent with Mike’s parents in their beautiful town on the shore of Lake Huron and we enjoyed a whole host of activities, doing things we’d never had the chance to do before. Walks along the shore and the harbour; swims in one of the Great Lakes; a boat trip to the lighthouse on Chantry Island; stock car racing and time spent making precious memories with both their grandparents and some of their cousins. We did enough to keep us all entertained, but also enjoyed some great time just relaxing with family.

 

Quick summer catch-up

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So the last 6 weeks or so have been filled with these moments and memories. Lots of posts to follow to catch up on all that we’ve been up to.

Exploration through Enrichment

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One of the things I love about G and M’s secondary school is the Enrichment week they run in June. Every year the young people are encouraged to explore new activities and opportunities during the week and try their hands at things they perhaps haven’t had the chance to experience before. When G was in Year 7, she opted for Bush Camp – an African-style adventure that involved 4 nights away from home sleeping out under canvas with campfire dinners, quirky showers and earth toilets for her home comforts. If there’s one thing that proves my daughter doesn’t always follow in my footsteps, this choice was it as I am a reluctant camper at best and it would take an awful lot to convince me that this could be considered as a fun week away from home. However, G loved every moment and couldn’t wait to choose her options for both Years 8 and 9.

Whilst G had determined that this year was going to be the year for a week away at pony camp in the Brecon Beacons, M’s choices were limited by the reality that he wouldn’t be able to spend a week away from home. We made the decision right at the start of his Year 7 year, not wanting to put him through once again the trauma of last-minute decisions and the inevitable disappointment that he experienced when we had to conclude that he couldn’t go away to the end of term Year 6 camp last year. We opted that M would be based at home for the week and instead he had to  the activities that he would participate in during the school day.

M decided on Action Adventure, where he got to try his hands at high and low rope courses, archery, building a trebuchet and bush-craft skills over the first 3 days of the week. Day 4 was designated as a community day, which was designed to give the children an opportunity to understand their role in our local community and to give a little something back. Some children did bag-packing at a local supermarket, others chose sponsored activities to raise money for local charities and M’s group of year 7s built wooden bird-boxes to be put up in the grounds of their school.

On his final day, M was keen to join the trip to the Tamworth snowdome, although he was disappointed that he had to ski, rather than being able to show off his rapidly improving snowboarding skills. He has been learning to snowboard since Christmas and has been coming on in leaps and bounds on the artificial slopes. He didn’t find it as easy to ski as he had hoped and the combination of time spent focused on skiing and ice-skating meant that he and his friend slept on their way back home. Both children had a great enrichment week and I’m grateful that this fantastic opportunity has been available for them both to fully experience, explore and enjoy. Not only am I impressed by the variety of opportunities they have to choose from, but the school did a great job of keeping the parents of around 900 students updated about their return home on the final day, which is no easy feat!

Reflections of an appointment

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I started writing this blog post 12 months ago and had put it to one side then because I wasn’t sure that the time was right to share all that was going on with M’s care at that point, particularly when it came to expressing my hesitation about whether the decisions being made were the right ones or not. Today we find ourselves in an even more emotionally charged situation and are becoming increasingly vexed with the marked lack of progress made over the last year. I revisited this original blog post tonight and decided that it now feels right to express that turmoil and the frustration in dealing with a medical team that appear to have lost their impetus to engage with us and with M. Those words written in italics are about our current experience.

There’s been lots going on over the last 6 months as many of my blog posts about our mini adventures have shown, but the one area I haven’t yet shared is the journey we’ve been exploring with our local consultant as I briefly mentioned last November. The decision to move almost all of M’s care from GOSH to our local hospital has not been an easy one to make, but for many reasons we have concluded that it is possibly the best one for now. Having a complete MDT (Multi-Disciplinary Team) close at hand to discuss all the challenges of M’s health has been invaluable and experiencing first-hand their willingness to see him at the drop of a hat over a 6-week period, where we’ve had 2 “emergency” appointments and 1 planned one, has been a relief, especially when you consider the problems we’ve had with them in the past.

It sounds fantastic doesn’t it? An almost perfect solution to meeting the complex and on-going medical needs of M; and yet, I would be lying if I didn’t admit that we’ve had our ups and downs with some of their suggestions and have not yet found ourselves moving on and making progress from the starting point we had 12 months ago. The overall opinion held is that M’s ongoing problems are not really related to his EGID diagnosis or the numerous foods we have previously identified as being unsafe, but rather a physical problem that is massively affected by psychological influences that are still to be fully explored and identified. We don’t disagree that there absolutely has to be a psychological element to M’s health: how can any child live through the experiences of his first 12 years and not be impacted in that way? But it also feels as if they’re throwing the proverbial baby out with the bath water and ignoring all of M’s physical symptoms from birth to 5, a time when it was impossible for him to have developed any fears of new foods or associations that certain foods would cause certain health problems.

It’s been challenging for us to adjust our thinking and look to embrace their suggestions of how to move things forward for M. Experience is constantly nagging at the back of my consciousness, gently reminding me that so many times I have been proved to know my son far better than the doctors treating him; but Mike and I have both worked hard to be positive about their new ideas because ultimately we want what is best for M and what will improve his quality of life beyond his, and our, wildest expectations.

In August 2017, my thoughts stopped there. I wanted so desperately to believe that things were going to change, to improve for M and it was, I think, a conscious decision to not air my hesitations and doubts because I was afraid to unwittingly jinx the improvements we were hoping would come about. However, nearly a year on and things have not changed at all. I now have a child who has struggled his way through the first year of secondary school and has lost the spark that makes him him. M no longer sees a positive in being treated at our local hospital and just wants to return to the care of GOSH, which is the last place he can actively relate to seeing any major changes to his day-to-day living. He has gained a couple of extra foods, but we are only at 9 (chicken, rice, cucumber, apple, pear, parsnips, bacon, onion and banana) and not the 20 that his consultant expected when we met him at the start of June.

At that appointment, the entire MDT acknowledged that M is not the child they knew 12 months ago and commented on his lost enthusiasm for choosing new foods to trial. I have tried so hard to explain to them that I am certain that M is not thinking his body into failing those challenges, but none of us really knows that for sure. The truth is that there are some foods that cause an unquestionable reaction and with others it’s difficult to judge if they’re causing an issue, or if it’s simply a case that we’re not really giving his body time to rest and recover between each trial. I’ll be honest, we’ve decided to relax the rules a lot at key times because it’s becoming increasingly evident that M needs the emotional boost that occasionally being able to eat more “normally” gives him. However, every decision to eat something we wouldn’t usually allow brings with it a set of consequences that are difficult for us all and not just for M to process.

I don’t know where we’re heading or what the next few months hold for M. The one thing we’re all agreed on is that we can’t keep living the current status quo because every day like this destroys another small part of the confidence we have in his medical team and buries his spark even deeper.

Scotland Photo Round-up 2018

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“10 days” seems to have become a mantra for our holidays over the last few years. Be it Portugal, Greece or Scotland, we’ve had some amazing fun, making memories and just spending time together. Here’s the photographic proof:

Visiting Edinburgh in every weather

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There’s been so much going on in the last few weeks and I have a lot to catch you up on, including some fantastic new recipes that have been a great addition to my kitchen, but I wanted to make sure I also took the time to tell you about the last few days of our Scottish adventures back in March. Having started in Liverpool before travelling on to Glasgow and Inverness, via Falkirk and Loch Ness, it was finally time to start our long journey home and we simply couldn’t miss out the Scottish capital city itself, Edinburgh.

Mike and I have some amazing memories of Edinburgh as it was our honeymoon destination back in 1999 and we were keen to retrace some of our steps and share some of the wonderful sights with the children for them to experience too. We had chosen to spend an extra night there and given the weather we had, it was a good thing we had made that decision. On our first full day, we caught the tram from our hotel into the city centre, before jumping on to the City Sightseeing tour bus and heading towards the castle. Edinburgh is an undoubtedly beautiful city, but we struggled to convince G and M of that as we tramped our way up Castle Rock in the cold, sleety rain and rapidly darkening grey skies.

Despite our warm winter coats, hats, gloves and scarves, M got progressively colder and more miserable as we made our way between the different exhibits you can find within the Castle grounds. One of M’s godmothers is married to a lovely military man and both children were keen to learn more about the various Scottish regiments in the regimental museum. First exhibit done, we acknowledged the need for a temporary break from the wintery weather and headed into the cafe, where we enjoyed hot drinks, some safe lunchtime food and were in place to hear the 1 o’clock gun salute.

Having warmed up enough to bring a smile back to M’s face, we convinced them to traipse around a few more exhibits before we headed back down to the bus, stopping on the way for some dry wool socks and a brand new woollen hat for M. We had originally planned to stop at the Scottish Parliament, but the weather had quite literally put a damper on our travels and instead we completed a full loop and a half, before getting off and heading to the Hard Rock Cafe for an early supper.

However, the next day was almost a complete opposite to the day before and much to our surprise, M’s yearning for a day at Edinburgh zoo was an absolute success, despite the lengthy queue to get in, as we enjoyed a beautiful, sunny and surprisingly warm spring day. G and M were particularly keen to see the pandas, but we also had great fun spotting the lions and tigers and watching the penguin parade. We didn’t perhaps do all that we had wanted whilst we were in Edinburgh, but the children enjoyed the time we had there, even the snow, and would love to go back for another visit and the chance to see a bit more when it’s not so cold.