Tag Archives: lessons

Family Storytellers

FM-logo-new-07-15-copyDuring my judging stint at the #FFFA16 earlier this year, I got chatting to the lovely organiser of these awards, Michelle about the possibility of an ongoing working relationship between the organising body, Foodsmatter and 7Y2D. Always keen to promote my blog through any networking opportunities out there, I was as enthusiastic to explore the options as Michelle and eager to see where it might take us. One of the ideas we discussed was the introduction of a new diary looking at EC and food allergies on the Foodsmatter website and newsletter, to run alongside the well-established Coeliac and Allergy ones already there. Michelle proposed a different twist on the subject and asked if I thought G and M would like to write these regular entries to give a child’s perspective on life with food allergies. It didn’t take long for me to accept on their behalf, even without discussion, as I knew M in particular would leap at the chance to get his views out there, especially after his tube-feeding contribution to “Complete Nutrition” at the end of last year.

When I got home, M, G and I discussed at length this request and all its implications. Whilst both were as eager to agree immediately as I expected, I needed them to fully understand the commitment they were signing up to and reminded them that if they then decided to go ahead, I would be making sure that they kept to it every step of the way. I was keen to see G and M take up this fantastic opportunity for so many reasons and felt that with some focus they could really make something valuable of it. Both children are quietly fascinated by my blog and I have never hidden from them that I’m writing it or the reasons why. From time to time, one or the other will ask me to “..take a photo for your blog Mummy..” or “..will you be writing about this?..blogI know that M occasionally takes a peek at what I’ve been writing and G has expressed a passing interest in getting more involved at some point too. Writing these diary entries for the Foodsmatter newsletter would give them a voice to express and explore their own attitudes, opinions and feelings about life where EC and food allergies are ever-present.

However, I strongly believe that there is much more to be gained by them than simply sharing their experiences with a wider audience and, as important as that is, these other life lessons have great value and will teach them well for their futures. The original proposal was for them to work in collaboration to produce a monthly diary entry to be included in the newsletter. They will have to learn to work as a team, sharing ideas, taking turns to write it down and, most importantly, listen to and recognise the value in each other’s opinions. I stressed that there would be no bad or wrong ideas about what each post should be about, simply thoughts that might need discussing and refining without argument or insult. 284454_10151027743256123_703224883_nSome months their entries might be a joint effort and for others, one might end up taking the lead with little or no input from the other, The responsibility of monthly articles is theirs, and theirs alone – I will not be stepping in if they leave it too late or can’t agree on what to write.

Having committed to writing every month, G and M need to make sure that they meet their deadlines and have an article ready for me to review and send before the publishing date. This requires a level of organisation that, for the time being at least, I will be helping them achieve as well as gently nagging them if the deadline is creeping ever closer. I suggested making a list of possible subject areas they might want to cover in their diary entries and reminded them that preparing this would mean that they could, if either was so inclined, get a head start and make notes for a future piece, thus saving themselves stress and heartache when time is running short. Flexibility, of course, is key and ideas can be shelved for a future edition if something more interesting, or relevant happens that they want to comment on instead. After 3 years of writing my blog, I know well the difficulties of having little to say when I want to post a new piece and how having something simmering in the background is always a real blessing at those times.

Most excitingly for me is waiting to see just how their writing voices and styles develop over time. M, despite the challenges of his dyspraxia and dyslexia, has never struggled with his imagination and is able to dictate fascinating stories that are filled with his character and sense of humour. In comparison, G has always found literacy a difficult topic to conquer and despite her breadth of reading and extensive vocabulary, struggles to express herself in the written word. I’m hopeful that the experience of writing this diary will help them both achieve more than they ever thought possible when it comes to their writing skills. If the giggles that floated downstairs to Mike and me as they wrote their first piece together are anything to go by, they really will enjoy this opportunity and I look forward to reading more from both of them.

For a taste of their contributions so far, you can read their entries for March and April here:

The diary of Galaxygazer and Marvin

And if you enjoyed those and want to keep reading on a regular basis as well as other great articles, you can sign up to the Foodsmatter newsletter here

 

March comes in like a lion

Ever had one of “those” days? You know, the ones where you’re already insanely busy and barely have time to breathe and yet everything that could conceivably go wrong, does go wrong to an unbelievable extent, plus those few extra and unexpected hiccups and challenges that appear along the way. After the last 48 hours, I appear to be heading into not just one of “those” days or even one of “those” weeks, but more realistically, one of “those” months. The next few weeks promise to be extremely busy and I’m beginning to wonder how I’ll get everything done on time and in the right order. You know it’s a sad state of affairs when we’re only on the third day of the month and I’m already counting down to the start of the next one.

Wales from space, courtesy of UK astronaut, Tim Peake

Wales from space, courtesy of UK astronaut, Tim Peake

The month started with our rather low-key marking of “Dydd Dewi Sant”, or St David’s Day for those of you not au fait with the Welsh language. Fortunately, this simply required some frantic scrabbling around my drawers hunting out the daffodil brooches that the children and I wear every year and remembering to pin them securely to school jumpers before heading out the door. The children were both keen and proud to wear their daffodils, though equally unimpressed that their friends didn’t know why they wearing them and so took the opportunity to quickly educate their classes. If I’d been more organised, I might have posted on the day itself, but I wasn’t and I didn’t, so this is me recognising that celebration of my heritage now.

But after that gentle start to the month, things have already started to ramp up. The next four weeks include:

Gotta love my left-field boy - who better than Ford Prefect from HitchHiker's Guide to the Galaxy!

Gotta love my left-field boy – who better than Ford Prefect from HitchHiker’s Guide to the Galaxy!

  • World book day and required costume x 1
  • parents evenings x 2
  • school book fairs x 2
  • M-friendly croissants (eek!) for French role-play at school with just 3 days advance notice to attempt adapting my MEWS-free recipe
  • Mothers Day
  • riding lessons
  • a 10th birthday (how did he get to be a decade old?)
  • birthday celebrations, including themed party and cake
  • class assembly x 1
  • dentist appointment
  • hair appointment
  • GOSH appointment
  • Easter
  • Performing Arts Exams x 2
  • school play, which translates into costume provision, rehearsals and performances
  • Spa day – a late birthday celebration which will be much-needed as it comes in the middle of the busiest week
  • events linked to school topics which will undoubtedly require some inventive cooking from me
  • preparations for a sibling camp for G, which gives her a week away with other youngsters in similar situations and, more importantly, a week away from M

gin-and-tonI’m sure that there will be things I’ve already forgotten and likewise, there’s no doubt that there will be more items added to my list as March passes by. Needless to say, I will be blogging about many of these occasions and just how I overcome the challenges of taking my M-friendly cooking and baking a step further than I ever imagined possible. Once all of these things are out of the way, it’ll be time for a well-deserved drink and, in case you’re wondering, mine’s a large gin!

Feeding Tube Awareness Week – Day 1: Choosing to raise awareness

7beb7940ed39bc80ce6cb39710abb740If anyone was going to describe the last decade of my life, the one indisputable conclusion they’d end up reaching is that it’s been anything but boring. Thanks to a pair of children who have thrown more than their fair share of life challenges into the mix, we’ve weathered more storms than I ever believed possible and, for the most-part, we’ve come out the other side still smiling and relatively unscathed. We’ve survived a lot of challenges, met a whole host of amazing people and learned a great deal along the way; and if I had to pick just one lesson that constantly resonates, I’d have to say that we now know to never take things for granted as they can change at the drop of the proverbial hat. Two years ago I wrote about our limited experience with feeding tubes and then, less than a year later, I found myself blogging about my brand new super-tubie. Another year on and the NG-tube has gone for the time-being and the only thing I can say with absolute certainty is that I have no idea if or when it will make a reappearance in M’s life.

The lessons that the last 12 months have taught us all have been huge and I have come to love and hate that feeding tube in equal measure. For the first time in his life, the reality of M’s chronic illness and multiple food allergies was outwardly visible and finally people understood from a glance that there was more to him than initially met the eye. The constant presence of the NG-tube opened up more conversations and opportunities for me than ever before and I’ve been able to share experiences, offer support and educate the wider community about EGID. M and his froggie friendWe all felt the benefits of that visibility to start with and I no longer felt the underlying pressure to defend the true extent of M’s illness and food allergies whilst my outwardly healthy-looking youngster was intent on tearing around practically making a mockery of every problem and pain we said he was suffering.

Of course, the flip-side was that ever-present tube. The one that there was no escaping or avoiding, no matter the event or occasion. Christmas, birthdays, performances and holidays, the tube was M’s constant companion and he became increasingly aware and conscious of the curious glances that were thrown his way by adults and children alike. His wonderful classmates and our village took it in their stride and quickly became so accustomed to it that M was never subjected to a second glance, but the wider world could stare until he disappeared from view. As well as the tube, we had the problems of M’s face reacting to the unavoidable medical tape and it took us several attempts to find a tape that didn’t burn his cheeks. Even when we finally found the best solution for him, at times he was left with red, sore and sensitive skin that only time tube-free could heal.

Looking back, 2015 was a year unlike any other in our family’s life, but I don’t regret a single moment of it. From that difficult decision to place the NG-tube and start M on an elemental diet, we have seen tremendous growth and an improved health that exceeded all our expectations. Most of all, we now have an opportunity to help raise awareness from the standpoint of personal experience and a road well-travelled, something that, believe it or not, I wouldn’t change for the world.

Our first lesson in Elemental feeding

Courtesy of shutterstock.com

Courtesy of shutterstock.com

The last 11 years have been filled with one parenthood-survival lesson after another and it has to be said that the majority of those can be attributed to M.  I’ve now honed my parenting techniques to become, not just referee, cheer-leader, taxi-driver and chief bottle-washer, but also self-made expert in rare gastro conditions, skilled negotiator with both small children and medical professionals alike and ardent advocate for (my) children’s rights.  Our latest, and steepest, learning curve carries an uncanny echo of the challenges my own parents had to conquer nearly 30 years ago when faced with the diagnosis of my Type 1 Diabetes (T1D).  They had to learn fast all about blood sugar monitoring, counting carbohydrates and, perhaps most daunting of all, how to give insulin injections.  There could be no question of whether they felt comfortable in doing these things because they knew that their new role in my life was not just as parents, but as the front-line defenders of my everyday health.  I have hazy memories of learning to inject on an orange and know that those oranges were subject to the first faltering attempts of my whole family.

Courtesy of soteriapublishinghouse.com

Courtesy of soteriapublishinghouse.com

We’ve had to learn how to feed our child via NG-tube, a process known as enteral feeding and similarly there’s be no time to stop and question whether we were ready, willing and able to do this because M’s health demanded it of us.  Each step is not particularly complicated in itself, but the anxiety of remembering what we had to do and when was overwhelming in the first couple of weeks and I was scared of getting it wrong.  Due to a desperate need for M’s bed in the long-term gastro ward at GOSH, I had no choice but to learn as much as I could as fast as I could, so as not to be left struggling once we were back in our own home.  We have the support of an excellent nursing team from Nutricia, the company who provide M’s pump, feed and medical supplies, but that’s it.  Mike and I have quickly had to become experts in this new part of M’s journey and the extraordinary has now morphed into the routine.

For those of you who have never had to do enteral feeding, or who are learning about it for the very first time, my next couple of blog posts will cover the process in a “step-by-step” approach, which will hopefully give some useful tips on managing tube feeding.  I would also highly recommend reading this blog post by fellow blogger, MumAnnie123 – it was my “go-to” article when we were incarcerated at GOSH and gave me lots of tips and advice about maintaining my sanity as we ride the NG-tube feeding roller-coaster.  The one thing I’ve quickly learned is that everyone will have a slightly different approach, be they parents or medical staff, so make sure you follow the basic rules, adopt recommendations that meet your family’s needs and adapt to a routine that suits you and your child the best.  At the end of the day, you are the people living with the elemental feeding and need to have a system that works for you – alter the feeding routine to work with and around your life at home.

20150203_082342Following a timetable that is hugely reminiscent of our days with a baby, each day actually begins the night before, when I have to make up the bottles of M’s feed alongside the preparation of G’s packed lunch for the next day.  Each evening as I boil the kettle, I gather everything needed to make his feed – packets of the Elemental E028 powder, scoops (1 blue, 1 yellow), a 1 litre plastic measuring jug, hand whisk and 2 sterile packs containing the 500mls and 1000mls plastic feeding containers, also more glamorously named “reservoirs”.

We have a detailed “recipe” for M’s E028 feeds, which was calculated by the GOSH dietetics team to provide the calories and nutrients he requires daily based on his age, height and weight and I carefully measure the required scoops of the formula into the measuring jug.  Next comes adding the boiled water, which was surprisingly trickier than it sounds as Mike and I both made mistakes on our first weekend at home.  What hadn’t been made clear to us in the hospital was that the water added is enough to make the required amount , in M’s case 550mls, and NOT, as we both first read it, add 550mls of water to the mix.  Whilst this sounds a fairly inconsequential error, the nuance was important and the outcome was that we ended up with a lot more formula that M could drink and at a lower concentrate that he needs to remain healthy.  I add the boiled water whilst it’s still warm as I’ve found this dissolves the powder more thoroughly and a good whisk ensures that there are no lumps poured into the feed bottles.  This is important as those miniscule lumps can be enough to block the tube and cause the pump to alarm.

20150203_160111Feed mixed and bottles filled, we then store them in the fridge for up to 24 hours, following the advice of both our dietitian and the community nurse, who reassured us that this was safe to do and is a shortcut that makes my life a whole lot easier.  M hates having his E028 cold, so I make sure that the bottle is taken out of the fridge at least 30 minutes before his feed is due to start and warm it in a bowl of hot water – a great tip shared by the nurses at GOSH.  The first few days felt chaotic as I rushed around making up feed, storing bottles and trying to make sure that we were doing everything we were supposed to do.  Now I’ve found we’ve fallen into a steady rhythm as I’ve found my feet in making this process work for me and that was the key to our success.