What a performance!

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honkM’s love for the performing arts is something I can really relate to, having spent most of my formative years loving nothing more than singing, dancing and acting whenever possible. Both he and G regularly attend our local Stagecoach theatre school and have not only grown in confidence, but have also developed skills that will stand them in good stead in whatever career path they choose to follow.  G is not a natural performer, but her continued hard work, dedication and determination to be the best she can, has seen her win the lead role of “Ugly” in this term’s performance of the musical, “Honk”.  This isn’t a musical I’m familiar with and I’m looking forward to seeing the chosen extract in a few weeks’ time with my daughter in the starring role.  If her enthusiasm is anything to go by, it will be a fantastic experience.

G has also been spending time focusing on her clarinet and has two big events coming up over the next few months.  The first takes place at the end of March and that’s her Grade 1 clarinet exam.  She has been practising at home as well as at school and I delighted that she is confident enough to take the exam.  Secondly, she is once again performing in our local education authority’s music concert, which brings together instrumentalists from across the county to perform at a local music venue.  She loved doing it last year and is looking forward to playing in it soon.  G has had several pieces of music to learn for these occasions, but she’s determined to perform well at both and is working hard at perfecting the music as best she can.

Courtesy of swanwickhall.derbyshire.sch.uk

Courtesy of swanwickhall.derbyshire.sch.uk

M, on the other hand, was born to be on the stage and demonstrates a natural flair and understanding for direction in his classes.  He loves to take any and every opportunity to perform that comes his way.  It provides him with a focus away from his ill-health and he has had to develop a stamina to perform, no matter how his body is behaving.  After all, as we all know, “the show must go on“.  M is passionate about the stage and would love nothing more than a career on it; but he is also surprisingly realistic that not everyone can succeed and has talked extensively about what other opportunities the theatre could offer him in the future.

Over the last few months, two amazing opportunities have come M’s way and it’s been great to see him keen and able to make the most of both of them.  The first was offered by the Ellen Kent Opera Company, who were looking for child extras to be part of two operas they were performing at our local theatre and approached M’s Stagecoach school to find them. M was, unsurprisingly, desperate to be involved and was selected as 1 of 4 children who would perform a special dance during the performance of Aida.  He had 5 half-hour training sessions to learn the routine and the small group then had just one run through on stage with the orchestra on the evening of the performance itself.  We were nervous as to how M would cope with the extra rehearsals, his nerves and the stamina required, especially given how poorly he was in the run up to Christmas; but we needn’t have worried.

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Like the consummate professional he aspires to become, M worked hard, remained focused and gave a fantastic performance on the night.  The prospect of dancing on a “real” stage in front of a full house (approx. 2,000 people) didn’t phase him at all and we were all so proud to see him shine.  He stayed true to his character of a child slave in Ancient Egypt throughout his time on stage and Mike, my Mum and I all commented that we have never seen him remain so still and so focused for so long in his life.  It was our first experience of opera and we all enjoyed it, even G, who has asked to go and see another one in the future.

oliverIn contrast to this professional production, M has also been working on a local am-dram production of hit musical, “Oliver!”.  He is playing the part of “Nipper”, the cheeky youngest member of Fagin’s Gang, a part that, quite frankly, was made for him.  He takes part in every rehearsal with gusto, even though there have been occasions when he has been crying in pain less than 2 hours earlier.  I am amazed at how much M’s determination to succeed in this role has over-ridden any feelings of pain and discomfort that have been haunting him earlier in the day.  He has picked up the songs and dance routines quickly and now, as the final few weeks of rehearsals are ahead, he’s working on perfecting them as much as possible.

I am so proud of both our young performers and am looking forward to watching them doing something that they so obviously enjoy over the next few weeks.

Another birthday celebration

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Guess what?

Today marks the first birthday of this blog.

First birthday

It seems unbelievable that I have spent 12 months writing about our experiences over the last 8 years and sharing our struggles, our successes and more than a few recipes to boot.  We’ve had our highs and our lows, but with the support of our family, our friends, medical professionals and other bloggers we know we can keep on going.  When I started the blog I wanted to be able to share the story of M’s life and our fight to get a diagnosis for him and the best care and support we could.  My aim was to raise awareness of this rare and little known condition and I always said that if I managed to make a difference to just one other person who was living our experiences, then I would be more than happy.  Amazingly in the last couple of months, I’ve received kind messages that have told me that I have achieved that goal.

A few statistics to share about the last year:

  • Date of first post:                          March 13th 2013
  • Number of blog posts written:    95
  • Number of “followers”:                297
  • Most popular post:                       To whom it may concern
  • Total views of that post:               220
  • Highest number of hits:               165 in one day
  • Number of recipes shared:          27
  • Most popular recipe:                    The best chocolate cake ever
  • Total number of comments:        218
  • Total number of views:                 7,867

As ever, we’ve no idea what lies ahead for M, for G or for us as a family, but the one thing I do know is that I will continue to share our journey with you and every development as it happens.

Our birthday boy

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Over the past few days, we’ve been celebrating young Master M’s 8th birthday.  It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast.  The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up.  Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

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M has become a little boy with a big personality.  Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football.  He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years.  M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

DSC02717He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset.  He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods.  They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

P1010012Perhaps more unusual is his flair for all things theatrical.  M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4.  He loves to perform and is always looking for the next opportunity to do so.  His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order.  M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion.  No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper.  He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour.  He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life.  Yet he nearly always bounces back and keeps going with a positive attitude.  The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

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To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”.  It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

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Pancake party

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Last Tuesday was Shrove Tuesday and time for a pancake party.  In previous years I have used a recipe that makes Canadian style pancakes, which taste delicious with bacon and maple syrup and which I frequently adapt to make sweetcorn fritters for tea.  This year I fancied having a crack at the more traditional British pancakes, which are much thinner than their North American cousins and not dissimilar to the French crepe. pancakes

Now, I knew this wasn’t going to be an easy make, after all the 3 key ingredients of your average pancake are flour, milk and egg, all of which are a no-no when cooking for G and M. I fell back on an old and trusted Delia Smith recipe and simply replaced each item with a M-friendly alternative.  Instead of the listed ingredients, I used rice flour, rice milk and ground flaxseed meal.  My final recipe can be found here.  M was so excited at the prospect of pancakes for tea that he helped me mix the batter and the result was better than I expected. It actually looked a lot like “normal” pancake batter and, as we prepared it the night before, I popped it into the fridge ready for the following day.

Despite the pleas of my hungry pair for a pancake breakfast, I played the role of mean Mummy and instead insisted that they waited for teatime to arrive.  We agreed on a dinner combining both savoury and sweet pancakes.  We started with plain pancakes topped with a little melted butter, bacon, a little cheese and some vegetables and by the time they had devoured those, both G and M were keen to see what I would make for pudding.

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I added some of Antony Worrall Thompson’s Chocolate and Hazelnut spread, which is amazingly safe for M to enjoy, as well as a dash of vanilla essence to the remains of my batter.  I cooked the chocolate pancakes, though I wish I had made them a little smaller as the batter took longer to cook and fell apart when serving.  M had his covered with pomegranate arils, whilst G had hers with banana slices.  Easy to do, quick to eat and a definite winner for a great end to a delicious meal!

Local update

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update-timeYou may remember that back in December, M was referred on an urgent referral to our local hospital based on the advice of GOSH.  He was suffering from chronic constipation, was in considerable pain and was losing weight as his appetite decreased.  Sadly, our local hospital felt it was unable to admit or treat M and instead our only option was to treat him at home, using a strong laxative and bucket-loads of patience as he struggled to recover his health. Our urgent referral resulted in the offer of an appointment with a general paediatrician in February, nearly 12 weeks after the referral was originally made.  We thought long and hard about whether we wanted to take up this appointment or not, given our previous experience with our local hospital, but we knew that local input could make a big difference to all our lives and felt that this could be our way into the local system.

apptFebruary’s appointment arrived quicker than we could have imagined and we went along with an attitude of “hoping for the best, but expecting the worst”.  The symptoms that M was suffering back before Christmas have disappeared and we have had the challenge of changing his diet and his medicines again in an attempt to reach a status quo with the EGID. What we hoped for was a local doctor who would listen to our concerns and who would offer us the helping hand we so desperately need.  We wanted a local doctor who could point us in the right direction at the hospital and would support our search for shared care between our local hospital and GOSH for M.

Instead we got a doctor who, through their less-than-professional manner, vocal criticisms of both our GP and GOSH and obvious impatience, left us feeling let down once again.  They belittled our decision to seek a second opinion when the local hospital had let us down 3 years ago and were unimpressed that we had our own point of view concerning the care given to M.  They reluctantly agreed to refer us on to the gastro team at the hospital, but made it clear that they believed it highly unlikely any of the gastro consultants would willingly take M on a shared care basis with GOSH.  Mike and I weren’t surprised, but we were disappointed that this consultant chose to make their opinions known so clearly in front of our impressionable and sensitive 7 year old.

complaintNeedless to say, we are not letting things drop there.  We have written a letter of complaint to our local hospital and are now waiting for their response to our concerns.  I am writing to our MP to make him aware of how badly M is being let down health-wise locally, to see if he will get involved on our behalf.  We will persist with the onward referral to one of the gastro consultants because we remain strong in our belief that shared care between our local hospital and GOSH is something M needs;  AND we will continue to fight M’s corner to make sure that he is put first and gets the support he needs.

Something nutty for the weekend

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Having tried a variety of snacks over the last few weeks – Dorset apple cake, chocolate chip cookies, ginger cream biscuits and banana bread – I decided it was once again time to turn my hand to something new.  This time I felt inspired by the children’s love for all things peanut butter and decided to venture into the world of peanut butter cookies.  I’ve sampled these delicious treats when visiting family and friends in Canada, but have never thought to bake them at home.  We are extremely lucky that neither M or G suffers from a nut-allergy, so I was keen to perfect this recipe as another addition to my ever-expanding repetoire of M-friendly snacks.

"Perfect" cookies, courtesy of www.alaskafromscratch.com

“Perfect” cookies, courtesy of http://www.alaskafromscratch.com

The recipe I found was easy to follow, easy to adapt and most definitely easy to bake.  The first batch of cookies spread to an unbelievable size, so once those had been devoured – and trust me, they really didn’t last very long at all – I used the remainder of the dough to cook another batch.  This time I popped a spoonful of dough into each well of a muffin baking tray, which produced a more even and crispier version of the cookie.  M loved the second batch even more than the first as he prefers his cookies with a crunch.

You can find my adapted recipe here, but I have to confess that I’m still working on reducing the sugar content as they are extremely sweet and I think could be just as good with a little less sugar.  Enjoy the weekend!

My "not-so-perfect" ones

My “not-so-perfect” ones

School trip!

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WOW!  Haven’t things changed since we were young?  Way back when, I remember the school trips from my Junior school years.  They always seemed to be to places of historical importance or museums and not necessarily to the places my friends and I would have chosen for a day off school.  As I got older, the trips involved a little more travel and even, very, very occasionally, a theatre trip, or suchlike, that required additional financial input from willing parents.  These days school trips appear to have changed dramatically or, at least, that appears to be the case this term for my pair.  They appear to be far more exciting than any school day out that I remember.

M’ school trip happened a couple of weeks ago and, as it fell on a day I didn’t have to work, I tagged along for the ride.  The day itself was grey, wet and miserable, but that didn’t seem to dampen the spirits of the 27 7- and 8-year olds going out for the trip.  We clambered aboard the bus and off we set, amongst much discussion of just how long it would take for us to reach our destination.  Fortunately, a mere 20 minutes later we arrived, disembarked and were ready for the next 2 hours.  Our location? Pizza Express!

Last year, Pizza Express teamed up with the Children’s Food Trust to encourage children to get cooking.  They offer free visits to schools, where the classes are taught about the provenance of the food they eat, learn basic health and safety in the kitchen and have the opportunity to make their own pizza to enjoy.  What was even better, from my point of view at least, is that Pizza Express offers an excellent experience for food-allergy sufferers, which meant that M was able to participate fully on the day itself.

They started with a tour of the kitchens and a quick step into the enormous fridges – if they dared.  We saw the pizza ovens, where we were told that a pizza takes no more than 4 minutes to cook, which certainly left us adults scratching our heads and wondering quite why it takes so much longer when you’re waiting at your table!  This was followed by a food-based quiz, where 1 of M’s classmates impressed me by being able to identify oregano just from a photo and the children were able to taste, if they wanted, some of the ingredients they would be using later.  Next, the pizza chef on site prepared from scratch one of the most popular pizzas, cooked it and offered a slice to everyone there.

Finally, as every child was now nearly at bursting point, they were sent to wash their hands thoroughly before starting to prepare their pizzas.  An impressive array of ingredients was set out on the tables, enough to satisfy even the most picky of eaters, without overwhelming them with choice.  Pizza bases were passed along the lines and the restaurant manager made certain that M’s gluten-free base was on its own tray to avoid the risk of any cross-contamination.  M was given his own spoon and first go at the tomato sauce, so I was confident that his pizza would remain “safe”.

Every Pizza Express restaurant has a reference folder which shows every ingredient used in their recipes and indicates what allergens each contains.  I was confident that the pepperoni provided was M-friendly, but it was fantastic to be able to check so easily and without fuss.  I had prepared some slices of our newly discovered Violife cheese too, which meant M could finally have a pizza with cheese, rather than without which has so often been the case.  M stood happily with his friends, laughing and chatting as they each designed their idea of the perfect pizza.

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Once the pizzas were made, including those of all the teaching staff and parent helpers present, they were popped into the massive ovens to bake.  As soon as they were ready, they were placed into individual takeaway boxes for transporting back to school and each box carefully labelled with each child’s name.  All the hard work done, it was back to the coach and to school, ready for a pizza lunch.

It was great morning out and once again my heartfelt thanks go to Pizza Express for ensuring it was an experience that M could share in too, despite the multiple food allergies.  Not only do they provide great ingredients and plenty of allergen information, but they are clearly conscious of the risks of cross-contamination for food-allergy sufferers and work hard to ensure those are minimised as much as possible.  I was impressed with the birthday party we had there for G and equally so that time and care was taken to make sure that this school trip was 100% successful too.  I have no idea what trip is planned next, but I suspect it will take a lot to beat this one!

Banana bread to rival the Godmother’s!

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Courtesy of minionslovebananas.com

Courtesy of minionslovebananas.com

As part of our recent plan to given M a substantial bedtime snack, M and I sat down to discuss what sort of foods he could choose from before bed.  I originally proposed a bowl of cereal or a couple of slices of toast, but quickly learned that this caused M no end of confusion.  Sometimes M struggles with his understanding of the world, can take things a little too literally and is very much a creature of habit.  Unexpected changes to his routine have been known to throw him for a loop and cereal at bedtime proved to be one such thing.  M very much associates cereal with breakfast and just couldn’t grasp that it would be okay for him to have it again later as a snack.  No amount of patient explanation would persuade my obstinate lad to change his point of view and so I gave in to the inevitable, abandoned that suggestion and hunted around for some “acceptable-to-both-of-us” alternatives.

We agreed on a few staples from the fridge and the store cupboard including Wot no Dairy! yoghurts, Frank* bars and Nakd bars, but I wanted to add something new to the equation too.  Thinking hard, I remembered that M had been requesting banana bread for a while and I wondered if I could once again find and adapt a recipe to satisfy this craving.  Around 4 and a half years ago, one of M’s godmothers, L, looked after him for an afternoon whilst I was at a check-up at our local eye hospital.  I’m not sure she’ll even remember the occasion, but M certainly does, predominantly because that afternoon they baked banana bread together. This banana bread has gained a position in M’s memory as the best, most delicious banana bread in the whole wide world ever and nothing has ever compared, or even come close.  He talks about the amazing smell and delicious taste, whilst the rest of us have, I have to confess, pretty much forgotten all about it,

My challenge, therefore, was set.  To create a loaf of banana bread that not only met M’s current dietary requirements, but that also needed to equal the memory of L’s bake all those years ago and I was ready to give it a go.  I found a relatively simple recipe, adapted it to suit and set about whipping up my masterpiece.  The smell of baking banana bread tantalised both M and G, who were forced to wait patiently until bedtime to sample it.

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Our kitchen was silent as they took their first, and then subsequent bites and Mike and I waited nervously for the verdict.  G declared it instantly as the “best thing she’s eaten, ever” and was full of praise.  M was a little more discerning in his comments.  My banana bread was great, as the empty plates in front of my children attested to, BUT it comes a very close second, as L’s still tops the rankings in his opinion.  So L, if you’re reading this and have even the vaguest recollection of that now infamous banana bread and the recipe you used, please give me a clue, so that I too can bake the “Best banana bread in the world”.

“Nothing can hold us back”

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This week is “Feeding Tube Awareness Week” and a great opportunity to raise awareness and garner support for those brave children and young people who are currently living with a tube to provide essential nutrition.  Their motto for the week is “Nothing can hold us back” and for many a feeding tube allows them to take precious steps forward.  There are a number of different feeding tubes that can be used: NG-tubes, NJ-tubes and TPN to name just a few, and you can find out more information about all of these from The Feeding Tube Awareness Foundation here.  The reasons for a feeding tube are even more varied then the number of tubes available and can include premature birth, EGID, Cerebral Palsy and over 200 other conditions and diseases.

As well as the initial trauma of facing the decision to start your child on tube-feeding and the challenge of placing the tube, families then have to learn all about giving feeds, looking after the tubes, replacing them when necessary and how to deal with the little complications that can make a big difference.  The prospect of tube-feeding can be a frightening one, but these children are able to go to school, play and participate in after-school activities alongside their peers with the right support given by trained medical staff, friends and family members.

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Ms first tube

Whilst our journey so far with M has been tough and continues to throw new challenges at us from time to time, this is one thing that so far we have not had to face.  M has had feeding tubes twice – once when he was first born so prematurely at 33 weeks and secondly, for just a week back in October, when he was admitted to GOSH.  As I recounted then, it took a while for my brave boy to become accustomed to it and to stop worrying that it might fall out at any moment, but he did.  We know that we are extremely lucky as there are a number of EGID children out there who are dependent on a feeding tube to give them the daily nutrition they need.

October 2013 and another tube

October 2013 and another tube

The decision to start your child on such a path is a difficult one for any parent to make and there are no guarantees as to just how long that tube might be in place. At the moment some of our wonderful FABED friends are surviving life with a feeding tube, some have finally managed to say goodbye to that tube and others are contemplating whether a tube may be the next step for their child.  To all those families, this week is for you and about you and the support and understanding you all deserve.

You can read more first-hand experiences here:

Ginger creams

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Since our appointment at GOSH at the beginning of January, I have had to flex my baking muscles in an attempt to create some tasty treats for M.  Some of our old favourites have had to be shelved due to the additional exclusion of potatoes and raisins from his diet and choices have  become limited.  I’ve chosen to work within the constraints of rice flour, despite how granular it can taste, as we are fortunate to receive this on prescription for M.  This means that every new recipe has to not only be delicious, but also moist enough to incorporate the rice flour and disguise its texture.  I can’t imagine that my baking and cooking adventures will continue at the current rate, but this week’s offering is a definite winner and one I’m delighted to be able to share.

Courtesy of thedailybalance.com

Courtesy of thedailybalance.com

One of my all-time favourite treats has to be Fox’s Ginger Crunch Creams, which combine a deliciously crunchy ginger biscuit with a cream filling that has a hint of ginger too.  I’m a big fan of ginger of any kind, always have been and, having been treated to one of those delicious biscuits recently, I decided it was about time I made a version M and G can eat.  I have never made ginger biscuits before, so wanted a recipe that was relatively simple to adapt for M.  I found. and rejected, a number of recipes that I felt had too many steps and ingredients to work in a M-friendly environment, before settling on this recipe by celebrity chef, Paul Hollywood, who is now perhaps best known for his role as a judge on the Great British Bake-off.

As this recipe for his Mum’s ginger biscuits contains just 5 ingredients, I felt up for the challenge and set about making my M-friendly adjustments.  The whole process was quick and easy, and I was very impressed with the results.  I decided to leave a handful of biscuits plain, but whipped up a delicious ginger “cream” filling to sandwich the remaining pairs together.  I used a simple home-made buttercream icing that I flavoured with some ground ginger and created my home-made ginger creams.  20140124_151454

Both G and M enjoyed the biscuits, although I may have added a little too much ginger to the filling for their taste, which was reflected in their scores of 7.5 out of 10.  I have taken their comments on board and will try to remember to reduce the amount of ginger I use the next time I bake these treats.  I am certain that it would be relatively easy to also adapt both the biscuit and cream filling recipes to mimic the others currently produced by Fox’s, or indeed any other flavour that might be enjoyed.  The rest of the family loved them and I can highly recommend them dunked in a nice cup of tea!