Tag Archives: health issues

Small businesses too good to miss!

There really is something very rewarding about shopping local and supporting small businesses and that is even more true when those small business owners are also friends, or become friends as a result of their business. We have been extremely lucky over the last few years to develop friendships and therefore fantastic working relationships with food producers who have, as a result of those friendships, readily taken on the challenge of feeding M, even at his most restricted, and succeeded to the absolute delight of us all. I would really recommend getting to know your local farmers and food producers and don’t be afraid to strike up a conversation with them to see if they can help – you might just be surprised by their reply.

Borough 22 is one such success story and someone I love to shout out about on a fairly regular basis as you’ll quickly discover if you browse my blog. Created by the incredibly talented Ryan, who holds the as yet unchallenged place of ultimate superhero in M’s heart, this company bakes the most delicious allergy-friendly doughnuts, which have graced our table on many occasions. I discovered Ryan through the FreeFrom Food Awards a couple of years and he readily accepted my challenge to create an M-friendly doughnut using just the 5 safe foods M had at the time. Not happy with just creating a passable doughnut, Ryan continued to try to perfect the recipe each time we ordered until he produced a masterpiece that has kept us all delighted. With the countdown to Christmas now fast approaching, I will be placing our order for doughnuts soon and would highly recommend you beat the final order deadline of December 12 to add these unmissable treats to your seasonal table.

Another favourite was also a discovery thanks to the FreeFrom family of Awards, though this time the Eating Out Awards, rather than the Food Awards. Café Nouveau near Frome is a worthy three-time gold winner and owner Susan has become another family favourite since we first judged the venue 3 years ago. She has also embraced the challenge of feeding M safely and was delighted to hear this year that his list of safe foods had expanded enough for her to try a new dish when we visited as part of this year’s judging panel. This paragraph is something of a confession to Susan, who I know is a regular reader of my blog, as we had gone on the pretence of a late birthday lunch for Mike, carefully concealing the fact that it was a convenient cover story for our judges’ visit. This anonymity is critical when acting as a judge and it was fantastic to see first-hand that Susan’s care for her customers extended to all who were visiting the café that afternoon and not just those she might have suspected! G loves eating out here as she can happily choose anything from the menu and was delighted by the prospect of safe waffles the weekend we visited, though she was disappointed to learn they had run out of the dairy-free ice-cream she was hoping to sample.

My final shout-out is for a new business to my blog, but one that we are delighted to have found. Ben is an ex-work colleague of mine and he and his wife Mandy have become firm friends over the last few months. They own a small-holding just outside of Bristol and Ben has ventured into the world of producing home-made meat products, including some great gluten-free options, through his business, Ben’s Farm Kitchen. G has been delighted with their delicious GF honey roast sausages and sausage rolls, whilst Mike and I have become big fans of the “normal” and GF scotch eggs, especially the pickled beetroot ones. However, the real success story has been their willingness to try and prepare M-friendly sausages and burgers, which has possibly been one of the highlights of 2018 for M. I worked with Mandy to make sure the ingredients used were as safe for M as possible and the meat mix she created has been a huge hit in our household. M has already asked me to make sure we have a supply of “his” sausages and burgers in for Christmas and that’s a request I’m delighted to fulfil. Not only do we know the provenance of the food we’re eating, but I’m reassured that they want to get it right for the family as much as we do.

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Finishing the summer in style

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.

Quick summer catch-up

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

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

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.

And so it continues….

After last week’s unexpectedly busy week, I was hoping that this week might slow down a bit; or at very least, enough to allow me to draw breath and properly put some thought into my blog posts! However, things often don’t quite work out as planned, especially when you’re me and I’ve found that the roundabout hasn’t quite slowed down enough just yet for me to get off. There’s been little time to stop and smell the roses…or the coffee…the latter of which is probably more apt as it’s been huge quantities of the black stuff that’s getting me through each day right now.

With work full of “stuff” – legal, finance and HR bits and pieces to get my head round; Mike slowly winding down to his last few days in his current job and both children back at home after a fantastic week away for G (hurrah!) plus rehearsals for concerts, fundraising plans to finalise for Over The Wall and some rather meaty health/education issues to tackle for M, I can honestly say I’m looking forward to a quiet-ish weekend to tackle the growing piles of ironing that just don’t appear to be shrinking.

Whilst we’re in the midst of dealing with the challenge of school not really understanding all of M’s educational, physical and mental health needs, I found this wonderful image this week, which truly summaries what I want both him and G to remember and hold on to as they grow up. They really are so much more than their school achievements and exam results #kindhearts #generoussouls #greatfriends

#NEAW2018: E is for Engage

May 26: E is for Engage

It’s a late post tonight, much later that I would have hoped, but I’ve been busy helping out with an anniversary celebration for the charity I’m now working for. It’s been a long day, but a fab one and I’m delighted to now be able to bring you my final post for NEAW.

This week has been, as I expected, a quiet week when it’s come to raising awareness of EGID. There were no big fundraising plans, no local radio interview and no article in our local paper. The children didn’t present anything at school this year and I didn’t plait pink ribbon into G’s hair or attach awareness ribbons to their school bags. Mike and I have stuck to our commitment to eat like M for the whole week and that has certainly led to a lot of conversations with my new work colleagues about M’s diagnosis…and how to pronounce “Eosinophilic”!

I’ve written a blog post every day this week which have been read and shared on by you all and whilst the daily posts will finish now this week has come to an end, I will continue to post an insight and an image on my social media channels right up to the end of month. Life might get quieter on the EGID front for most of you, but please remember that it will continue to be a permanent and unavoidable fixture in M’s everyday.

Thank you for engaging with us this week; for walking part of our journey alongside us and all I ask is that you keep helping us fight the battle to raise awareness of it.

#NEAW2018: T is for Thank

May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

#NEAW2018: A is for Awareness

May 24: A is for Awareness

Today is all about raising awareness for EGID. At home we’ve been working on putting together a presentation for the end of June, when G and M will be introducing Over The Wall at their performing arts’ school’s end of year fundraising concert. We are, as so many others around the world, huge fans of the 2017 smash hit and all round wonderful film “The Greatest Showman” and the song “This is Me” had a particular resonance for the whole family. M and I chose this track to be the backing track for their OTW Powerpoint presentation and I decided to adapt what I’d already made for this year’s NEAW to raise more awareness.

#NEAW2018: C is for Change

May 23: C is for Change

The dictionary defines change as “to make or become different” or “an act or process through which something becomes different“, but what does that really mean in the context of raising awareness about a rare disease?

There are so many things that need changing when it comes to EGID, some of which we can actively work towards achieving and others which can be nothing more than a pipedream at the moment. Educating others about what EGID is and how it affects those diagnosed with it will hopefully bring about a change in attitude in both the community surrounding M and the wider medical profession. Even though this often feels like an uphill battle, it is an achievable target and something we should all keep working towards, chipping away slowly at the seemingly indestructible walls that surround EGID as a valid diagnosis. Those changes in attitude will help M feel less isolated by his health problems and more confident in being the unique individual he is despite his EGID and not because of it.

The 12-year road we’ve travelled since M was born has seen many changes and there is no question that there will be many more to be traversed as he grows towards adulthood. He’s gone from an active, can-eat-everything toddler, through a stage of being a tube-fed child taking 13 medicines multiple times a day to now being a tween eating 9 foods on a regular basis, taking 4 medicines plus a multi-vitamin each day and thriving. The next few years of teenagedom will undoubtedly bring a myriad of changes to be navigated, mostly thanks to those pesky hormones, and which will hit us in ways we can’t even begin to imagine. Who knows how treatments and medical breakthroughs will change as he gets older and the best change we can hope for is that his doctors will find a way to improve his quality of life beyond our wildest expectations.

What are the changes that M would most love to see happen?

  • To be eating as “normally” as possible. What he wants when he wants and with no repercussions at all
  • To be able to go without all of his medicines, especially the E028 drink, and not worry that a reaction could be just around the corner
  • And to not feel different, or alone, or set apart from his friends because of a condition that he can’t predict or control, but can just manage as best he can

What I want is not really a change at all. I want him and G to remember that they are able to live life to its fullest, loving and embracing every moment of it and grasping every opportunity that comes their way and making the most of them all.