Category Archives: Family

The missing element

With only the occasional exception of the odd batch of chicken liver pâté, M has been consuming more than his fair share of dry rice cakes on a daily basis over the last 14 months. What started as a necessity because of his limited diet and the lack of finding a delicious and safe spread to use, continued because, however I looked at it, I couldn’t see a way to create that missing spreadable element. The recent discovery of a great rice cream which could be spread a little like butter has meant that things seem to finally be on the up as it not only provides a tasty addition to an otherwise inarguably bland food, but also adds some much-needed extra calories each day. Arsenic-levels-in-rice-crackers-and-Rice-Krispies_strict_xxlEven better, that upward trend continued this past weekend when, as Mike prepared some toast with lemon curd for my breakfast, my mind was drawn back a few summers to when I realised that I could make dairy- and soya-free lemon curd for the children to enjoy and I wondered whether I could take that original recipe a step further and produce one that would achieve M-friendly status.

To my delight, this looked to be one of the easiest recipe adaptations I’ve had to tackle in the last 15 months as there were only 3 ingredients to be replaced and all could be done in the simplest of fashions. My coconut milk became rice cream, the cornflour mix replaced by rice flour and the safe margarine could be substituted by coconut oil. Refusing to tell either M or G what I was planning, I sent them out on an errand to buy some more lemon juice from our corner shop and achieved a much-needed break from the near constant bickering we’d been subjected to so far that day. It was a beautifully sunny spring afternoon and I knew they’d benefit, not just from the feeling they were doing something useful for Mummy, but also from some sun, fresh air and a stretch of their legs. M was somewhat confused by my request as he was insistent I had more than enough lemon juice in the fridge already, but he was readily swayed by my demand for more and the promise of a special treat if it all worked out.

The process of making the lemon curd was actually a lot easier and quicker than I remembered. I have vague memories of making “proper” lemon and raspberry curd when G was in Reception as an end of year gift for her class teachers and remember standing at the hob, stirring the hot mixture until my arm both arms felt tired. I’m not sure why this recipe and method don’t take so long, but I’m definitely grateful for anything that takes less than 30 minutes to whip up these days. To my surprise, despite their initial interest, G and M soon became distracted by other activities and so I was able to finish the preparation and get the 2 jars into the fridge without them noticing. The distraction of a dairy- and soya-free chocolate fondue for pudding – my desperate attempt to use up as much of the leftover Easter chocolate as possible as sadly it’s not been a success for M – proved invaluable and Mike and I were able to hold off the big reveal until it became Sunday teatime. IMG_0277[1]The flavour is very sharp and not overly sweet and M has loved every mouthful, demanding it on a near daily basis for either lunch or a bedtime snack. G says she enjoys it too, though I’m certain she won’t be asking for it on anything like as regular a basis as her brother. Most importantly, it provides a break from the dry mouthfuls of rice cakes that M has become accustomed to and that, in my world, is absolutely priceless.

When inspiration strikes

With the busy-ness of March almost behind me and M trialling cocoa, and therefore dairy-free chocolate, over Easter, you’d have thought that it was definitely time for me to take a step back and relax a little over the long weekend. However, as I’ve found so many times in the past, when inspiration strikes, I just have to respond as quickly as possible or lose the opportunity to act. Call it providence if you will, but the stars most certainly appeared to align on Thursday with the perfect timing of Easter, a different food challenge and a tempting photo on Facebook. It all started when a lovely friend from my Thursday choir shared a photo of the delicious-looking hot cross buns and Easter biscuits she had baked on Thursday. 20140418_154823I made some MEWS-free Easter biscuits a couple of years ago, but I’ve never attempted baking hot cross buns before, so you might wonder, given the complexity of M’s current restricted diet, why I would even begin to contemplate trying to now.

Whether it was the realisation that last week’s food challenge of grapes meant I could possibly create a bake that bore more than a passing resemblance to the “real” product itself, or the addictive sense of achievement that I get when I see the pleasure on M and G’s faces from the taste of something they haven’t enjoyed for a long time, I don’t know, but either way, hot cross buns made in a M-friendly fashion seemed to be a sensible use of my time on Good Friday afternoon – or at least, they did when I was lying awake thinking about it in the early hours of Friday morning itself.

Thanks to the amazing Nathalie of the Intolerant Gourmand blog, I had a fantastic starting point for my hot cross buns recipe. Nathalie’s recipe already replaces some of the main allergens, but M’s list of safe foods meant that I needed to make some more all important tweaks to produce a recipe that would be fine for him to eat. The hardest adaptation for me was replacing the yeast as obviously that’s what gives the bun it’s bread-like texture. IMG_0256[1]After some frantic, yet focused internet research, I found that it was theoretically possible to replace the yeast with a mixture of baking powder and lemon juice and so decided to give it a go.

The dough was surprisingly easy to make and came together really well. I carefully added the cross to the top of the finished buns, popped them into the oven and then spent the next 20 minutes distracting M from what was baking. The end result was not quite as springy as a typical bread dough, rather being a little more like scones, but despite that, the flavours were all Easter and really reminiscent of that popular seasonal treat. I can’t remember the last time that M was able to enjoy a hot cross bun, which probably explains the time it took for him to realise exactly what I had baked – it took me pointing out the cross on top for him to work it out! However, both children enjoyed them and I have to confess to be quietly satisfied with the final bake when I tasted one for myself. Sadly, grapes have not proved to be a resounding success for M, but I’m glad that, when inspiration struck, I took the opportunity to bake him something a little different to eat before reaching that conclusion.

Limping towards the Finish line

bucket listDo you remember that long, long list of things that I was facing at the beginning of March? With the month-end in sight, I am, quite literally, limping towards the finish line, just thankful that the long Easter weekend ahead means the opportunity for some much-needed lie-ins and down-time; but how did March go in then end?

World book day and required costume x 1 – M decided on what can only be described as something of a left-field choice for your average 9 year-old and dressed up as Ford Prefect from Douglas Adams’ well-loved trilogy of 5 books, “The Hitchhiker’s Guide to the Galaxy“. It was one of the easiest costumes he’s ever asked me to make and to our delight, he won a £5 book token for the best WBD costume in his class.'Oh yes we're very proud of him. He's in publishing you know!'

Parents evenings x 2 – Both evenings went extremely well and we are so proud of the strides both children have made during this school year. M has been working hard at beating the challenges of his dyslexia and dyspraxia and is developing some beautiful handwriting when he remembers to try. G has settled well into Year 7 and was described to me as a “conscientious, hard-working, empathetic and focused” member of her tutor group. I was delighted to hear that her confidence has grown throughout the year and that she is developing into a well-respected and natural leader amongst her peers too.

School book fairs x 2 – Attended and books bought.

M-friendly croissants – Recipe adapted, croissants baked and hugely enjoyed as part of the school’s French role-play activity. I achieved above and beyond what I thought was possible with so little notice.

Mothers Day – We enjoyed a quiet day together, although sadly my Mum was unwell and not able to come out for lunch with us. We ate at one of our favourite M-friendly restaurants and were once again impressed by the phenomenal memory of the restaurant manager and the care awarded to both children by all the staff. Well done Wagamama!

Riding lessons – G continues to ride every other weekend and her passion for this hobby is growing. Her latest lesson saw her not only trotting and cantering with confidence, but beginning some preparatory steps to get her ready for jumping – scary stuff but she’s loving every moment.

A 10th birthday and a class assembly – These happened on the same day and were both celebrated in style. It’s hard to believe that my little bean has reached the end of his first decade and I can’t begin to imagine what the next one will hold.IMG_1765

Birthday celebrations – M chose a reptile-themed birthday party and I braved holding a tarantula to help encourage G to beat her fears and do it herself. We combined the day into a double celebration and headed out to a local trampoline park in the afternoon with a couple of friends for a belated marking of G’s 12th birthday too.

Dentist and hair appointments – These both happened as planned and really there’s not much more to say.

GOSH appointment – Mike, M and I headed to London for our first appointment at GOSH since the disastrous admission last December. We weren’t quite sure what to expect, not least because the gastro department is currently in a state of great upheaval. M is doing well, even though we haven’t managed to introduce any more foods safely into his diet since last summer and continues to impress us all by drinking the 400mls of E028 necessary to supplement his limited repertoire of food. His weight has dropped on the centile charts and will need some careful monitoring over the next few months as we continue to search for some more safe foods for him. There is, at long last, a chance of some shared care between GOSH and our local gastro team, which would add some much-needed local level support for our family and the next step is really to wait and see when and if that happens.

School play – Thankfully M’s role as Poseidon meant that I could re-use his toga from Stagecoach last year, so that was one costume crisis off my hands. He was only able to take part in one performance as the matinée was on the same day as his GOSH appointment and unfortunately I wasn’t able to see his evening performance as it clashed with G’s parents evening. However, Mike and G went to watch and told me it was great fun and he did really well.

Performing Arts Exams x 2 – Taken by one very-tired G and one determined-to-do-well M. We won’t know just how well they’ve done until mid-April, but I’m told that they both worked hard and performed well on the day. Having watched their performances the week before, I can’t wait to see if all their efforts paid off and are reflected in their marks.index

Spa day – This was a late birthday celebration, a treat that Mike had sorted out for me and my dear friend, and M’s godmother, L. We had a lovely afternoon being pampered, drinking coffee and chatting without interruption by small people, before enjoying a delicious dinner and a few bubbles to mark the day.

Events linked to school topics – This term M’s topic has been India and part of the school experience was to share an Indian meal from a local restaurant. Thanks to previous experience from G’s time in Year 5, I had been anticipating this one for months and a few mini trials of herbs and spices meant that I’ve been able to create a curry-esque meal that’s suitable for M. A mix of cumin, coriander, ginger and rosemary combined with our new discovery of rice cream created the sauce for his staples of chicken and rice. It might not be an authentic dish, but he loves it and it’s meant that he has been able to join in a meal with the rest of his class.

Preparations for G’s sibling camp – I haven’t quite started on this one, but the weekend’s going to be busy as G goes off to camp on Monday. She’s been looking at the list of things she needs and chatting to a friend via e-mail as she prepares for a week filled with fun and activities away from the hustle and bustle of home. She also went to her first Young Carers meeting this week and seemed to settle in really well. There are some other girls the same age as G, including one from her school, who have just started too and she’s looking forward to an afternoon at a local trampoline park during the Easter holidays. Watch this space for more of an update once she’s back and has shared all the news with me!

Easter – Preparations are sorted, food trials are planned, eggs have been bought and I’m looking forward to a peaceful family weekend at home.

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Happy Easter!

 

A Birthday* surprise (*cake recipe included!)

11009339_10152614451586123_8225188594845865541_o20140912_225331Six months ago I tackled the challenge of a birthday cake for M, where the only ingredients he could eat safely didn’t lend themselves to whipping up a tasty sponge and he ended up with a 3-tier Cluedo-themed “fake” cake. Six months before that, I adapted a crazy cake recipe to create a M-friendly chocolate masterpiece for my Mum’s milestone birthday.

Somehow it seems fitting that we’ve come almost full circle in our cake journey and I’ve recently found myself facing the task of another birthday cake for Mum and, more than that,  one which could be eaten and enjoyed by us all. The apple and rice flour cupcakes I’ve been making have been a real winner with the children, but the ever-persistent problem of a granular taste to these bakes, no matter what I’ve tried, meant that I was desperate to find an alternative and better recipe to mark this special occasion. Despite frequent google searches, that recipe was proving to be irritatingly elusive and it was only when we finally achieved a fifth safe food for M that I struck birthday cake gold.logo-eureka-01

To be perfectly honest, it really all came as something of a surprise success as I had no great hopes of yet another search turning up a rice flour cake that would 1) accommodate M’s restricted diet and 2) taste delicious. Despite my doubts, I thought it worth a look with our new ingredient of pear added to the mix and came across this easy recipe for pear and rice flour cupcakes that were not only gluten- and dairy- as advertised, but also egg- and soya-free too. I decided to do a test run and made a quick batch whilst G and M were in school. By the time they arrived home, the house was filled with the tantalising smell of fresh baking and M’s nose instantly went into impressive action as he begged to know if he could taste-test the cakes I’d been preparing that afternoon. Three cupcakes quickly disappeared from the cooling rack and I was thrilled to discover that there was none of that unpleasant granular taste that I’ve come to associate with rice flour baking. With an instant hit on my hands, I now needed to decide whether to attempt a cupcake tower for my Mum or see if I could cook a more traditional cake using the same recipe.

Due to an abundance of apples in our household at the moment – the benefit of apple trees conveniently located at my Mum’s, my office and at a friend’s – I tweaked the recipe to include some apple and reduced down the original quantities of oil and syrup as the original cupcakes had been a little too sweet for my liking. I waited nervously as the cakes baked, fingers tightly crossed that the larger layers would turn out as well as the cupcakes had and I needn’t have worried. The cakes looked impressive and I now have yet another great recipe to add to my list. Having left them to cool in the fridge (no #GBBO-style “wafting” in my household!) I sandwiched them together with some home-made apple purée before turning my mind to the knotty subject of how to decorate it all.

appleswansNow, if I had seen at that point episode 7 of #GBBO, I might have taken my inspiration from Paul’s amazing apple swans and spent my afternoon carving the intricate decorations to top the cake, but fortunately, or maybe unfortunately – I suppose it depends on your point of view – that episode had yet to air and instead I found myself using my time much more wisely: I was back on google trying to work out if a dairy-free buttercream icing was at all possible. To my delight and complete surprise, I found a way to adapt a recipe and create my very own coconut oil icing, which would tick all the boxes when it came to M’s dietary requirements. Whilst he is unable to eat coconut milk or flesh, he is able to tolerate the oil and I was over-the-moon to have the chance to finally bake a cake that actually looked and tasted like “real” cake for him to try for the first time in nearly a year. I took a tentative and small first mouthful to check the taste before spreading it across my cake. It has, unsurprisingly, a strong coconut taste, but this complimented the apple and pear flavours of the cake and was beautifully easy to use.

The icing was easy to make and I’ve no doubt I’ll be making more the next time a M-friendly cake is required. To make my recipe, I used:

  • 250g solid coconut oil
  • 200g icing sugar
  • 2tsp vanilla extract
  • 3tbsp rice milk
  1. Put the “solid” coconut oil – it should not be liquid at room temperature – into a bowl and blend until smooth 20150912_185526
  2. Slowly add the icing sugar and vanilla, continuing to beat the mixture 20150912_185815
  3. Finally add the rice milk, 1 tbsp at a time until you reach the consistency required. You can add more or less rice milk depending on how spreadable you want the icing to be 20150912_190502
  4. At this point I added some food colouring, one drop at a time, until I got the colour I was after – I’m not too sure about the green icing I ended up with, it was Mike’s suggestion and I’m not convinced it was the right one!
  5. Use to decorate cakes or cupcakes. Whatever your opinion of the colour, the finished result looked spectacular and I’m pleased to say it tasted amazing too!20150912_204048

NB – you can add any other safe flavours or colourings instead of the vanilla

This recipe is an entry into the #Swearbyit challenge with Vita Coco. Find more great coconut oil recipes and tips on using coconut oil at http://www.swearbyit.com”

 

 

 

A Wild 10th birthday!

This week I’m planning to take a break from any suggestion of a complicated bake – after 3 sets of birthday “cakes” last week and croissants the week before, I really think I deserve it. IMG_1731I have to confess to keeping it simple on the big day itself as M had huge ambitions for the day of his party and so a cake-stand full of rice krispie treats seemed to fit the bill. I did jazz them up a little by splitting the batch in two and adding chopped apple to one half and crystallised ginger to the other. The birthday boy seemed delighted with my choices and with that success firmly under my belt, I moved on to the next phase of my baking challenges for the week: the party cake!

M has been fascinated by the natural world for as long as I can remember, hence the arrival of Leo in our household just after Christmas. He loves watching wildlife programs on television, reading nature-themed books, be they novels or factual, and appears to absorb the facts he hears in a sponge-like fashion, ready to share at any given opportunity. So when Mike suggested a wildlife party for his birthday, M leapt at the chance and immediately asked if I could make a bearded dragon cake for it. I tentatively agreed, with my usual proviso that I couldn’t guarantee anything before the day itself and he would just have to accept it, no matter the end result. I researched and found a company who would bring a selection of reptiles and insects to our party location and would teach the children about each one as well as allowing them to touch and hold them if they wanted. It wasn’t my idea of a perfect birthday treat, but M was hugely enthusiastic and so I booked the party session, having somewhat madly decided to hold it at our house to make life a little easier.

12670399_10153297404071123_3934501200587725837_nParty booked and themed party favours ordered, next came the matter of the cake. For once I decided to learn from previous experiences and didn’t leave decorating the cake to the last moment as I usually do. The prospect of a 2am finish really didn’t appeal, especially if I was battling with creating the perfect bearded dragon cake topper and so planned to start a week earlier, with the hope of finishing at a much more reasonable time the night before. I found some images on-line and, with “Les Miserables” blaring in the background, carefully copied the individual body parts before attempting to put them together. Given Leo’s rather vivid orange skin tones, I chose to make a bright orange dragon and whilst it might not have been the most realistic coloured one, I was thrilled with my crafted copy. I carefully covered and stored it away from peeking eyes, determined that M would be left guessing until the last possible moment.

Fast forward a week and Saturday afternoon found me whipping up a batch of stone grey coconut oil icing to recreate a rock, having already baked a M-friendly pear and apple cake, which was now sitting on a bed of brown sugar “sand”. With icing, dragon and cake now all ready and waiting to be assembled, I turned to the matter of some un-birthday birthday cupcakes for G. As you may remember, for the second year in a row M was in hospital over G’s birthday and we were unable to celebrate the day with her. Last year we held a joint party for them both and had a lot of fun at their Cluedo-themed extravaganza, but I wanted to do something separate for G this year. Taking advantage of our tradition that each child has a friend at the other’s party, 12790894_10153315764351123_4961913402772457111_nwe decided to hold a small event on Sunday afternoon for G and invited her 2 friends to M’s party in the morning as well as 1 of his to hers in the afternoon. Given it was a very much belated birthday celebration, of course we needed more cake and I decided a batch of cupcakes would hit the mark and decorated them with some rather glamorous silver icing and snowflake patterns for my December baby.

10441207_10153315937021123_5876452706470659349_nSunday dawned with the most glorious weather and an anxious countdown to the party starting by M. The 8 boys and 3 girls spent their time racing around our back garden, bouncing on the trampoline and admiring the varied animals that arrived to entertain. M, of course, held all that he was allowed and G beat her fears to hold the tarantula, despite shaking hands and the occasional tear. The cakes were greatly received and M declared my bearded dragon the “best cake ever!

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Double digits

And, just like that, the last member of our family has left the years of single digits behind him and has joined the ranks of those celebrating double digit birthdays. As well as celebrating the first decade of M’s life, we’re also marking 10 years of astounding challenges, amazing courage and unbelievable joy. Happy 10th little bean xxx

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“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.”

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!

My One Constant Companion

HS_Birthdays_30thToday I’m celebrating a very special day, a milestone birthday of a very different kind. Google has revealed that Steve Jobs, Ben Miller and Kristin Davis were all born on this day, but as interesting as that is, I’m not really celebrating their birthdays. Today is my Godmother’s birthday, but it’s much more than that too. Today also happens to be my birthday, but, according to my birth certificate and my Mum, both of whom I trust implicitly, I’ve got another 366 days to wait until I reach my next noteworthy milestone, so my birthday celebrations this year are relatively low-key. Despite all these great reasons to celebrate, today I’m marking 30 years of one of the most significant events in my life:

30 years of living with T1D*

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This is me, the Christmas before I was diagnosed

With a less than auspicious twist of fate, my life changed completely on the day I celebrated my 9th birthday and, believe it or not, 30 years on I can say that it arguably changed for the better. Don’t get me wrong, I would give anything to not be living side-by-side with a chronic illness, but the events of that day enabled me to return to much improved health and, most importantly, haven’t stopped me doing pretty much anything I’ve wanted to since then. After months, and maybe even years, of displaying what are now the well-recognised symptoms of undiagnosed diabetes – think excessive, unquenchable thirst; massive weight loss; increasing and unexplained lethargy and a constant need to wee – an unexpected collapse at school led to an emergency hospital admission, a fear-filled night as my parents had to face the unimaginable possibility of losing me and finally a diagnosis that would shape the way my future unfolded. Without even knowing it, and certainly with little regard for my opinion, this uninvited visitor came and took up permanent residence in my body, where it has lived in varying degrees of co-operation since the mid-1980s.

The last 30 years have seen amazing developments in the care of T1D, but the most momentous event actually happened 65 years before my own diagnosis. Before 1921, my parents’ worst fears of that night would have been realised as, until the discovery of insulin at the University of Toronto by Banting and Best, SAM_0827those diagnosed with diabetes mellitus had no chance of survival and could only delay death from the illness itself by starving the body instead. Their discovery followed on from the hard work of  other scientists and medics from around the world such as Oskar Minkowski, Joseph von Mehring and Paul Langerhans, for whom the cells in the pancreas were named, and I doubt that any can deny the life-changing impact that the discovery of insulin has had on those of us living with T1D.

My first decade with T1D was heavily influenced by the incredible mind of my consultant, Professor B, who was compassionate, understanding and impressively forward-thinking in his approach to my care. One great example of his progressiveness is reflected by the DAFNE (Dose Adjustment For Normal Eating) approach to T1D management, which teaches PWD** to “…match their insulin dose to their chosen food intake on a meal by meal basis…“, and which was introduced to mainstream diabetes care in 1998 as a somewhat revolutionary new step. I somewhat nonchalantly shrugged my shoulders at the announcement as I’d been following that regime for around 10 years before it was accepted as being effective by the rest of the diabetes world, all thanks to Professor B and his focus on helping to improve my teen struggles with T1D.

IMG_0139[1]

My collection of Novopens!

Likewise, within 2 or 3 years of diagnosis, my “futuristic” disposable syringes and bottles of insulin, which had replaced the glass syringes and metal hypodermic needles of the 1950s that needed constant sterilising and re-sharpening, had themselves been replaced with one of the first models of the Novopen. This was the first insulin pen injector of its type and combined syringe, needle and insulin bottle in one unit. I worked my way through several upgrades of the Novopen and these days use a combination of a pre-filled disposable pen injector and the last pen injector that I had, a green Novopen 3, which still works in impeccable fashion nearly 20 years on from when I was first given it. Two decades on and I’m so excited to have embarked on another adventure, this time with the relatively new innovation in diabetes care, the Freestyle Libre system for blood glucose monitoring. Whilst I’m not at the forefront of PWDs trialling its use, I have offered to collect data concerning my usage for a research student looking to compare blood glucose monitoring behaviour following the use of the Freestyle Libre, a study that I would hope would encourage some NHS funding for these short-lived sensors which really could revolutionise T1D for many.

To put the last 30 years into context, I worked out some quick statistics of what 3 decades living with T1D has meant for me:

  • An average of 3-4 BGLs measured a day, sometimes a lot more and sometimes considerably less, adds up to around 43,838 blood sugar tests…
  • …and assuming equal use, though the truth is anything but, each of my fingers has been pricked nearly 4,500 times.
  • There’s been in the region of 41,636 injections to keep me healthy…
  • …most of which have in my thighs, bum and upper arms…
  • …although, after 25 years of steadfast refusal to consider anywhere else, I now inject almost exclusively in my stomach and have the bruises to prove it!
  • I’ve been involved in several research projects since almost day 1, including one which resulted in the longer-acting insulin I now use on a daily basis…
  • …and more medical students, visiting foreign doctors and interested consultants than I care to remember…
  • …and the involvement of both G and M in current research to investigate a possible genetic marker for T1D.
  • One amazingly fantastic juvenile T1D consultant, considered to be one of the top men in the diabetes world, around the world
  • …and another who I remember joining my team as a junior doctor at our local hospital and who is now a Professor in this field in that same hospital…
  • ..as well as the care of another unrivalled T1D consultant during both my pregnancies to ensure the safe arrival of my babies and my continued health too.
  • And there have been the inevitable times in hospital, particularly during my emotion-ridden years and fortunately only 1 major complication resulting from my teenage rebellion stage.

A cure may not yet be in sight, but with the amazing developments of the last 100 years, who knows what the next 30 years will bring?jdrf-ndam

 

*T1D – Type 1 Diabetes                                                                                                                      **PWD – People With Diabetes

Blind Date with a Book

Books HDThere is nothing G loves to do more than read; she really is her mother’s daughter when it comes to that particular pastime. Whenever she has a spare 5 minutes, and even if she doesn’t, you can usually find her with a book in hand, curled up somewhere quiet in the house. In fact, if you ever need to track G down, the best place to start is her bedroom as the chances are you’ll find her on her bed, engrossed in the story unfolding before her and completely lost to the outside world. Mike and M will willingly tell you that I am no different, much to M’s disgust, so the occasional times when it’s just G and me in the house can be surprisingly quiet.

read-for-my-Not long into the new term, G’s secondary school announced that they were taking part in  Read For My School 2016 organised by the Book Trust, which encourages children in Years 3-8 from across the UK to see how many books they can read between Christmas and Easter. Every school that takes up the challenge is given access to the RFMS website and each pupil registered has an on-line diary in which they can record the books they’ve read, make recommendations, write book reviews and even access some books on-line to read. G was excited by this opportunity and has been faithfully updating her reading record on a weekly basis, not least because both RFMS and her school library have offered the incentives of prizes for various achievements to the students taking part. I have asked G to be completely honest about the books she adds to her list and only include those she has actually read since Christmas, telling her that others may be a little unscrupulous when it comes to winning prizes, but that I want it to be an accurate record of her reading habits.

As well as this reading challenge, the school library has been running other events throughout the year to encourage their pupils to read, an approach which has really impressed me. At the start of the school year, G wrote her reasons for wanting to meet author Huw Powell and during 20160210_160919the recent half-term, she penned an acrostic poem as part of another competition to mark Harry Potter night in early February. These initiatives not only encourage the children to read, but also help them develop key writing and literacy skills in a fun way, something which really benefits G as, despite her passion for reading, she struggles to capture her imagination and express her thoughts on paper.

Just before half-term, G came home absolutely buzzing with excitement about the “Book Blind Date”, which she had taken part in during her day at school. This time the school library had wrapped up a number of books and added a tag which simply contained 3 or 4 words hinting towards the theme of the story. G had chosen one which intriguingly stated:

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and was desperate to see what book she had picked. She waited until we got home and then, with great fanfare and both M and me watching, she ripped the paper from the front cover to reveal her selection. Her choice, 20160210_160938“Shipwrecked” by Siobhan Curham, was something she’d probably never have chosen for herself, but this fantastic idea of a blind date with a book really appealed to her and offered her a new author to experience and perhaps a new genre to further explore. I loved this particular event as it grabbed G’s attention and those of her friends, as evidenced by the flurry of text messages that followed the grand reveal as they compared titles, and even appealed to M, who is desperate to know whether he’ll have the chance to take part when he’s in Year 7!

The Bionic Woman

For the last 6 days Mike has taken to calling me the “bionic woman”. Needless to say, I have not recently had a skydiving accident which has led to bionic modifications to my broken body resulting in amplified hearing, a right arm with the strength of 10 men and the ability to run at speeds over 60mph; in fact, there has been no incident of note and my 1 broken body part, my pancreas, remains well and truly broken. Rather there has been a conscious decision on my part to finally fully embrace a relatively new technological development that I hope will make a significant difference to my diabetes care.

I first became aware of this new bit of kit through M’s school friend, F and his fantastic parents, L and I. I can’t remember quite how we got onto the subject, but I’m reasonably certain that it had something to do with school Sports Day, the challenge of T1D vs. the active child and watching L check his blood sugars simply by waving a black box over his arm. To be fair, M had been wittering on telling me for quite some while about the “white, circular sensor-thingy” attached to F’s arm that enabled him to test his blood glucose levels (BGLs), but the lack of clarity in his description combined with my own lack of relevant knowledge meant that I had absolutely no idea what M was talking about and had dismissed the subject without really giving it a second thought. However, my interest was piqued through that chance encounter on the school field and it led to the opportunity for an enlightening conversation about what this thing was.

The Freestyle Libre (FSL) is marketed as a “flash glucose monitoring system” with a tagline of:

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and I was intrigued enough by this to want to find out more and discover whether this might be for me, or not. I read their website, researched on-line for users’ reviews, joined the FB forum for FSL users and wondered if it was too good to be true. I’ll be honest, when I first looked into whether it would be a benefit to me and my T1D care, I loved how easy it appeared to be and, having spoken at length to L and I on more than 1 occasion, could see just how revolutionary it could be, especially for children with T1D.IMG_0131[1] But, and believe me when I say it was quite a big “but”, the sticking point sadly was the price. This type of technology is not available to anyone through the NHS as yet and funding the sensors alone would cost in the region of £100 a month. I know that you cannot put a price on good health, but as a Mum to 2 children with multiple food allergies and an already increased monthly bill due to the high costs of free from food, the challenge of finding that extra £100 each month (£125 extra earned pre-tax) felt quite daunting and I shelved any thoughts of such an investment for the time being.

However, even though the price was making me think twice, I was reluctant to dismiss the option out-of-hand and, given the lengthy UK waiting list, decided to add my name and wait to see what happened in the meantime. The daily events of life with M and G quickly overtook everything else and the FSL soon dropped far down my list of priorities, though it was never far from my thoughts. I’m not exaggerating when I say months passed, but at long last, in January 2016, I saw the message I’d been waiting for: the news that monitors and sensors were once again readily available in the UK and I decided to bite the bullet and order a starter pack to finally see if the FSL’s claims were all true.

IMG_0135[1]The concept is a simple one and reassuringly easy to use. You insert a small sensor with a thin, 5mm needle into the back of your arm and, although the initial instructions for applying it appear quite complex, it really was quick and easy to do. I didn’t find it painful at all and whilst it takes some time to get used to the constant presence of this sensor on my arm, I’ve had no problems with it. The sensor measures what is called the interstitial fluid glucose levels, which are not identical to BGLs as this is the fluid found between the cells, but are considered accurate enough for monitoring what is going on. To find out your BGL, you simply wave the scanner over your arm and it gives you the result almost instantaneously. IMG_0129[1]The sensor continually reads the changes in the glucose levels and, as long as you scan at least once every 8 hours, the easy-to-read graphs given on the screen indicate what has happened during the times you didn’t test. As with most CGM systems (Continuous Glucose Monitoring), it is recommended that the FSL user occasionally uses a standard glucose monitor to test their blood sugars and check that reading to the one given by the FSL – my tests have shown a difference of less than 0.3 mmol, which is incredible.

I can’t begin to tell you how impressed I am with this small device. It really was easy to understand how to use it and the whole family – Mike, G, M and even my Mum – have taken their turn in testing my BGLs for me. Everyday I sit with the scanner amongst the rest of my accountancy paraphernalia in front of me on my desk IMG_0128[1]and am able to discreetly test whenever I want or feel the need. The amount of information available is vast and you can look at enough graphs, bar charts and log books to satisfy even the biggest techno-geek. It has become strangely addictive to do and has already started to give me an even greater understanding of what my T1D is doing than I’ve ever had before. The non-invasive nature of the testing means that it would be easy for a parent to do during the night with no fear of disturbing their child’s sleep, and similarly for Mike to do if he ever feels that my blood sugars are dropping overnight – no need to wake me to ask me if I’m going hypo and then having to survive the often stroppy response his concerns are rewarded with, whether they are or not – yes I am precious about my sleep! I also have no doubt that it would appeal to every tech-savvy under-18 out there, which would no doubt reduce the chances of non-compliance and teen rebellion that so many young T1Ds experience,IMG_0130[1] thereby similarly reducing the risk of complications from poor control. I really can’t speak highly enough of my experience so far with the Freestyle Libre and wouldn’t hesitate to recommend it to every T1D out there. It has been a struggle to find a down-side other than the price, which is due to the £50 sensors needing to be replaced every 14 days. My personal solution to that is to fund 1 sensor a month for the time being, or at least until the point I finally win that elusive lottery jackpot!

 

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