“Run, run as fast as you can…”

“…you can’t catch me, I’m the gingerbread man!”

To be perfectly honest, the last couple of months have been challenging ones. When we made the decision last year to move M to the elemental diet, we did so hoping that it would be the answer we were looking for and that he would finally find some relief from the years of chronic pain and constant bowel problems he’d barely been surviving. The great news is that his symptoms improved dramatically and for the first time in a long-time, M felt healthier and happier than ever before. However, despite the best hopes of GOSH that his NG-tube would only be needed for 2 or 3 months, Mike and I held the opinion that it would more realistically be in place for at least a year, if not longer, and we are rapidly moving closer to that 12-month mark. Of course, what none of us had anticipated was the struggle we would have in reintroducing foods back into M’s diet and over recent weeks, he has found the constant disappointment of failed food trials and the frustration of not being able to eat the same as everyone else almost unbearable to live with. With the agreement of our amazingly supportive dietician, we decided to take an extended break from the challenges, allowing M some much-needed time to come to terms with the realities of life right now.

shutterstock_190648280Having had that much-needed rest, M started to lose that haunted look that had been plaguing him for a few weeks and we finally seemed to have turned the corner and be back on track. We agreed on a new short list of foods to challenge in the run up to Christmas and had finally restarted where we had left off, more or less. However, last weekend, with another 3 unsuccessful attempts at reintroductions to chalk up to experience, tensions started to build and emotions threatened to overwhelm the tenuous calm that had just begun to settle. The final straw broke when G asked Mike and me to taste and review her cupcakes for her Food and Textiles homework. With hot, angry tears cascading down his cheeks, M crawled on to my lap to fitfully confide that it “just wasn’t fair” that everyone else could eat cakes when he couldn’t. Gently stroking his back, I offered to whip up a batch of one of the few sweet treat recipes I’ve managed to adapt for him in the last 12 months: Rice krispie treats? Cupcakes? Scones? Sugar cookies? Nothing seemed to quite hit the necessary mark, so I put my thinking cap on, did a little research and came up with the perfect pre-Christmas treat – Gingerbread!

Thanks to a few sneaky “mini” challenges, we have been able to add some extra flavourings to M’s diet and the most recent success was the addition of ginger to the humble pear crumble, so gingerbread seemed to be the logical next step. I started pulling the ingredients from the cupboards and, 20151121_162110as I weighed and measured out everything I needed, M’s interest was piqued and he pulled up the step-stool to stand by my side and help out. He rolled up his sleeves, washed and then floured his hands and, having selected an interesting array of cookie cutters, brandished my trusty rolling-pin to roll out the gingerbread dough on my pastry board. He chose to use the Christmas cutters as well as the odd one or two Mr Men ones, which have survived from my childhood and spent hours planning out to most effectively cut the shapes from the dough in front of him. We ended up with an impressive batch and I am heartily assured by my trustworthy taste-testers that they more than fit the brief and hit the mark!

A Girl’s Best Friend

For as long as I can remember – and trust me, my long-term memory is legendary in our household – G has been passionate about learning to ride. Both she and M did a brief stint at a nearby riding stable when she was about 5, but school, hospital appointments and other hobbies soon absorbed a lot of our time and riding somehow fell by the wayside. G frequently talks of her plans to own horses when she’s older and 20151018_131727has declared on more than one occasion that she has no plans to learn to drive when she reaches 17, but will instead ride her horse wherever she needs to go. Over the last 18 months or so, she started asking about the possibility of riding lessons again and it was then that my Mum came up with the idea of rewarding all her hard work for her SATs with a short course of lessons.

It took careful planning, the odd bit of rearranging and some tentative pencilling-in, but finally everything was sorted and G started her lessons. Her first lesson was a group one, but it quickly became obvious that she would learn more and progress quicker with some more focussed teaching and so we switched to a 30-minute individual lesson every other weekend. To say she is delighted to be fulfilling this long-held dream is an understatement and she has taken to it like the proverbial duck to water. With just 3 lessons under her belt, she is already cantering around the indoor arena 20151018_133210with confidence and impressed not just her riding instructor, but me too, with her sense of balance and ability to trot round with her hands and arms in every position imaginable except where you’d expect them to be.

Needless to say, horse-riding has become her favourite pastime and we have been inundated with requests for lessons as a gift from anyone and everyone prepared to contribute for both her birthday and Christmas. It has been fantastic to see her enthusiasm grow and the wait between lessons proves almost unbearable for her at times. What is even better is that this is something just for G, there is no irritating little brother to steal her thunder, although he has come along to watch her ride once or twice. The consequences of having a brother with a chronic illness mean that all-too-often G has been relegated to the sidelines as we’ve worried about M’s health or agonised over decisions regarding his treatment and diet; but in horse-riding, the focus is all on her: her teachers know nothing about M and his health and those 30 minutes are spent doing something she really, really loves. The lessons have also become an opportunity for G and me to spend some much-needed and precious time together, to chat about school, friends and life in general without the constant demands of M dragging my attention away from her; something I think we both have come to value.


Early arrivals

efcniToday, November 17th, is World Prematurity Day. A day that acknowledges the early arrival of 15 million babies across the world every year, a statistic that increases annually. Pre-term births are defined as “babies born alive before 37 weeks of pregnancy are completed”, but…

What do you think of when you think of a premature baby?

You might recall images of micro-preemies, those babies born so early and so small that they can be cradled in the palm of their parents’ hands. You might think of babies covered with tubes and wires, enclosed in incubators or even tucked into supermarket sandwich bags to help keep them warm enough to survive. You might know of the risks associated with an early arrival and how hard the doctors, nurses and parents fight, with every inch of their being, to get those babies through another day and another long night. You may even have survived the weeks of hoping to get “just one more” week through your pregnancy, knowing that every single hour counts.

The thing is that preemie babies come in all shapes and sizes; the reasons for their early arrival are many and varied; and every family has a similar, but also hugely different story to tell. Each parent and child has their own individual challenges to face and yet premature birth is a common bond that links them all. Let me introduce you to 3 special preemies, each with a unique set of circumstances and a shared experience marking their arrival  :

20131118_191134Of course, you’ve already met the first one: G just crept into the premature category, arriving at 36+6 nearly 12 years ago and weighing an extremely respectable 8lbs. Her delivery was the result of fears about my T1D and the signs that my placenta was beginning to fail, so the doctors made the decision to deliver her to ensure she had the best start in life. Even though she had an initial problem with plummeting blood sugars, G’s stay in SCBU (Special Care Baby Unit) was short at just 3 days and thanks to the wonderfully supportive nurses on the High Dependency ward who looked after us both, Mike, G and I were able to come home a week after she was born and spent our first family Christmas together at home.

M was even more impatient to arrive than his big sister, although his birth weight of 5lbs 12.5oz at 33+1 gestation was equally impressive. M spent his first few days on NICU (Neonatal Intensive Care Unit), although there were times we felt something of a fraud, especially compared to the tiny 26-weeker 2 cribs along, who had been born at exactly 5lbs less than him. We had been warned from the moment I was first admitted at 26 weeks pregnant that once he arrived, M would almost inevitably need to stay in hospital until he reached his due date. It is of great credit to the dedicated doctors and nurses who looked after him that we were, in fact, able to bring him home after just 3.5 weeks and in perfect time for Mothers’ Day.

10329684_10152507367497848_7913075952615166607_oAnd this tiny, but beautiful fighter is B, the second son of our close friends and M’s godparents, L and C. Due to fetal distress resulting from pre-eclampsia, B was born at 27+2, weighing just 1lb 9oz and has had a very different battle so far than either G or M. He had suspected NEC (Necrotising Enterocolitis) in hospital and for a week things were very touch and go. Despite this rocky beginning, B is an incredible battler and even though he came home on oxygen after a long 98 days in hospital, 5 weeks later he had been successfully weaned off that too. 18 months on, he is a happy, loving little boy, who may be on the small side for his age, but is otherwise doing well and I know that his parents, just like us, will be forever grateful to those medics who have helped B fight and win.

image_for_happy_world_prematurity_day_5715493946These 3 precious bundles may not have had the easiest start in their lives, but we are lucky that they have each survived and become an irreplaceable part of our families. With a national health service that is in crisis, the neonatal units where G, M and B and thousands like them are cared for on a daily basis are seriously overstretched and understaffed. These children need an incredible level of specialist care to help them make it through those critical first few days and weeks of life and the doctors and nurses who give it are simply amazing as they offer not just medical care to the babies, but emotional support to the whole family. That is a gift that cannot be easily replaced and we know that we were extremely fortunate to be able to receive it.

Children In Need 2015

Along with the rain, wind and grey skies, November also brings with it the star-studded evening of light entertainment that is BBC’s Children in Need. Last year they launched the theme of “Be a Hero” for the event and my pair decided to dress as their personal heroes of Princess Leia and M’s gastro consultant at GOSH. This year, the dressing up part was a little easier to achieve – G headed off to school in her own wardrobe selection and M wore his “Super Tubie” top as we really couldn’t think of any better superhero for him to represent. You might think that this meant I escaped lightly for this year’s celebrations, but for those of you who know me, or follow me on FB, you will be well aware that my youngest actually had very different ideas about how we should spend the night before the big day itself, and what a long night it turned out to be!

His school decided to hold a “Great Children-in-Need Bake-off” competition as part of their fundraising efforts and naturally M was keen to take part. His first step was to decide what he wanted his cake to look like and eventually settled on cupcakes rather than one big cake as they would be easier to sell as part of the school cake sale after the competition was judged. Instead of decorating a dozen individual cupcakes, 20151111_195743M wanted to use them to create Pudsey Bear’s face as best he could. Design done, Wednesday evening saw M whipping up the cake batter with a little supervision from me and the resulting 24 perfectly baked M-friendly cupcakes were left to cool overnight before he tackled the big job of the icing.

One evening to ice to perfection might sound like more than enough time, but when you take into consideration the after-school archery club requiring late pick-up, the long-awaited ‘flu vaccination appointment, the unavoidable homework and the much-needed dinner, you’ll begin to understand why we couldn’t get started until close to 6.30pm. Of course, having baked cakes that he could eat, M was keen to ice with safe icing too, so my first job was to help him make enough coconut oil icing, tinted a rather fetching Pudsey Bear yellow, to cover them all. 20151112_192831We had already made a simple cardboard frame in the shape of Pudsey’s head to hold the cupcakes securely and,having fitted 10 cupcakes neatly into place, M got started on the icing.

It was his first attempt with an icing bag and I have to say I was impressed. M handled the bag and nozzle like a pro and did what I’d consider to be a really good job for his very first go. Watching him I could see how much his motor skills have improved since he was first diagnosed with dyspraxia and he actually made a relatively fiddly task seem remarkably easy. Yellow icing piped, next came the task of rolling out and shaping the other colours to make Pudsey’s spotted bandage and facial features. He tweaked and adjusted until he was finally satisfied with the end result and I have to say it was a job well done. Whilst he couldn’t quite eat all of the cakes, he could eat those covered just with the yellow icing – the ears! – and for the first time in a long time, M knew he’d be able to buy a cake at the school cake sale!


Now, for most people that would be a great place to stop; but oh no, not in our slightly mad household. Whilst we’d been browsing cookery books and the internet for ideas for his final cake design, M had spotted some Pudsey Bear cake pops and was keen to see if we could make some of those in a M-friendly version too. Cue some hurried reading on my part accompanied by much scratching of my head as I tried to work out a recipe that didn’t involve chocolate in some shape or form. I couldn’t find a single chocolate-free cake pop recipe, so did the next best thing and came up with my own.

20151112_204555I crumbled 8 cupcakes into a bowl and was delighted to see that the grated apple and pear in the cake mix gave enough moisture to form balls. M cut up some drinking straws as I carefully moulded our cake balls and stuck them to the sticks to create the lollipop shape. My full recipe is here, but let’s just say it took multiple moves between table and freezer as well as some much-needed help from all family members on hand to achieve the final look. The ones M decorated for school were not safe for him to try as we ended up using fondant icing, but we did try a few attempts with the coconut oil icing and I reckon with a few more tries, we might have those sussed.

20151113_082414It turned out to be a later night than planned, but M ended up with 2 entries to the school competition he could be proud of and was delighted that nearly all of his cakes sold at the fundraiser on Friday.

Station X

date (2)It might have been a damp, chilly October morning when we left home, but we didn’t let the weather deter us from completing our “top-secret” mission for the end of half-term – a visit to Station X, otherwise known as Bletchley Park. The purpose of our weekend away was actually to visit one of my Godmothers in nearby Milton Keynes, but the opportunity to take the children to see the home of unparalleled code-breaking during WWII was too good to miss. It was something of a last-minute plan, but I was confident that M would be fascinated by the history of code-breakers and spies that is so intricately woven into this beautiful Manor House and, what’s more, 20151031_115918it fitted wonderfully well with some of the English home-work G had been set over half-term.

From the moment we drove in through the front gates, the children’s interest was piqued as we were questioned at the gate as to the reason for our visit and directed to the nearby car park. Members of staff were on hand to make sure we headed to the entrance and didn’t wander into any areas that are still in use today and not accessible to the general public. We started by picking up our multimedia tour packs, before heading into the grounds of Bletchley Park itself. M was keen to follow the guide exactly and so we started by the lake whilst listening to an introduction to all there was to see there, which believe me, is a lot. Once we had circumnavigated the lake, we were then taken around the rest of the site: starting at the Manor House, around to the garages and cottages, via the memorial to the Polish men and women involved in code-breaking during WWII and on to the restored Huts; 20151031_130649all before ending up at the Block B Museum.

The Multimedia guide was absolutely brilliant and I’m really glad we stopped to pick them up despite G’s initial reluctance. Mike, M and I all chose the adult version, whilst G opted for the family friendly one. The map showed the key places for starting the audio recordings and you could then choose how many additional subject areas you wanted to listen to on a variety of different topics. The screens were all interactive and M had great fun “wiping off” the current images to reveal how each location would have looked during the 1940s. G had the added bonus of interactive puzzles to complete and loved working out how to break each code. The guides were included in the price of the entrance ticket and whilst they weren’t integral to our visit, they certainly revealed more of the story than was on display,

I would be hard-pressed to state which was my favourite part or indeed choose which I think the children enjoyed the most. There was just so much to see, so much to read and almost too much to absorb. From the history of Bletchley Park which led to its use during WWII, to the interactive displays of the Bombe machines in Hut 11, the Enigma machines on display in Block B and the children’s corner with puzzles and dressing up supplies, as well as an extensive area showing some of the props and costumes used to20151031_125114 film last year’s blockbuster, “The Imitation Game“, there really was something for everyone. Sadly our few hours there simply weren’t long enough and we didn’t manage to explore either the National Radio Centre or the National Museum of Computing and its rebuild of Colossus, both located at the same site. No need to worry however, as it simply means that we will have to try to squeeze a revisit in and, as our entrance tickets give us admission for a full year, I’m sure we’ll manage it one way or another

Apple crisps – a mixed success

When I first discovered my own potato intolerance, there were a few things I knew I would miss. Mashed potato I could do without and chips had never been a particular favourite of mine, but the prospect of a life without roast potatoes or crisps seemed a grim one. Of course, 7 years on and the reality of all that M has had to give up from his diet, my occasional longing for a crisp butty pales into absolute insignificance; butStar Wars the one thing it has given me is the insight into how much M might be missing his favourite foods and it made me determined to search high and low to find him a safe alternative to that much-loved part of any child’s lunch-box: a  bag of crisps.

With rice an early staple in M’s new diet, we quickly included rice cakes as a regular part of his lunch-time routine and the discovery of Rude Health Mini Rice Thins was a success that continues even now as M really enjoys munching on these during his lunch-times at school. Great as they are, the rice crackers don’t quite replace the crisps and I continued to look for something else that might just fit the bill. Rice was quickly followed by chicken and cucumber, but neither really opened up any viable alternatives and it wasn’t until the successful reintroduction of apples into his diet that we finally had a whole new realm of options to investigate.

20151104_081555Thanks to the advice of a couple of my fantastically supportive #EGID Mums, we heard all about Perry Court Farm Apple Crisps and couldn’t wait to try them out. I bought a mix of both their sweet and tangy varieties and the moment the box arrived, M eagerly grabbed a bag to try out. The sharpness of the tangy crisps proved a little too much for his particular taste-buds and he refused to eat more than one or two crisps from that original pack. Fortunately, the sweet ones proved to be more palatable and M enjoyed the addition of some crisps to his daily packed lunch. Sadly, I have to be honest and say that these haven’t been our most successful find as M isn’t keen on the after-taste he is convinced is there and has now stopped eating them completely. They do, however, satisfy my cravings for my much-missed crisps and I’ve really enjoyed them as part of my lunch-box choices for work.

M’s marks:  3.5/10                                                                                                                                    My marks: 9/10