Author Archives: bluesingingdragon

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About bluesingingdragon

Mum to an EGID son and a food allergy daughter. Full-time accountant and supporter of Over The Wall.

Big Bang Science Fair

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Last weekend we travelled to the Big Bang Science Fair at the NEC, Birmingham for a day full of science, maths and electronics fun.  This isn’t an event we’ve been to before and I have to confess that it wouldn’t necessarily have been one that would have even registered in our consciousness before this year.  Since last September, M has been attending a weekly Electronics Club after school and he loves every moment of it.  During the past few months, he has learnt to program a Raspberry Pi, has become an expert with circuit boards, has written his own computer games using Scratch, built a crawling microbug and is now embarking on his latest project, a turning frog.

M getting hands on with one of the exhibits

M getting hands on with one of the exhibits

Electronics has quickly developed into one of the great passions in M’s life and his recent birthday gifts reflected this new-found interest. From solar-powered robots to salt-water cars and night-sky constellations to a build-your-own robot arm, there’s been an awful lot of “building” going on in our household on a nightly basis.  So, when the Electronics Club mentioned a possible day-trip to the NEC for the Big Bang Science Fair, M leapt at the chance and soon had the rest of the family on board too.  We arrived at around 11am, split into small groups and started making our way around the huge number of exhibits that were there.  There was a brief hiatus for lunch and then it was back to exploring the space before the show finished at 4.30pm.

G working hard to power the lightbulbs

G working hard to power the lightbulbs

Mike and M were in one group, whilst G and I were in another and we followed different paths around the hall.  G loved her opportunity to generate enough power to light up some lightbulbs through pedal-power, whilst my favourite exhibit was playing musical vegetables, thanks to a piece of music software and some clever wiring.  M, on the other hand, has been hard pressed to choose his favourite activity, although he is very proud of his memento of a rock-hard silicone glove, created by mixing some chemicals together (don’t ask me which, neither Mike or M can remember!).  He also become the subject of discussion with some university students working there, when a medical student spotted his NG-tube and called her colleagues over as they had never seen a tube in situ before.  Mike was also impressed that one of the nurses working on the ambulance display had not only heard of EGID, but also knew a little about it.

2015-03-14 16.24.25It was a fantastic and fascinating day out and M has already requested a repeat visit next year, with just one proviso:  that we get there right at the start of the day in the hope those extra couple of hours might enable us to see everything there is to see.

“Magic never dies. It merely fades away.”

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This time last week one of my heroes died.  I was saddened to hear that Discworld-creator and Alzheimer’s advocate, author Sir Terry Pratchett OBE had sadly lost his battle against this unrelenting disease and I was left with the sense that our world had become just a little less colourful as a result.  With typical Pratchett-esque humour, a series of tweets, written in his own incomparable style, announced his passing, taking a lead from one of my favourite of his characters, Death:

I first discovered the Discworld and its diverse cast of characters in the late 1980s and quickly found myself reading, and re-reading, his books as I waited, often impatiently, for the next one to be published.  My Dad and I shared a love for the Discworld and my Mum often commented that she knew when either of us was reading one of Pratchett’s books as they caused us both to laugh out loud, something no other author had ever done.  Our joint appreciation for Pratchett’s fantasy world is one of my fondest memories and even now, I find myself transported back 20 years, to times spent sharing our newest discoveries in his latest novel whenever I revisit these tales these days.

tPratchettIt’s difficult to explain what made Terry Pratchett’s books just so un-put-downable to me.  His clever play on words frequently made me laugh out loud – who can forget Twoflowers’ explanation of an “Inn-sewer-ants-polly-sea” in “The Colour of Magic“?  His unashamed use of characters or plots from other authors was delightfully skilled – and the 3 Witches in Shakespeare’s Macbeth were not a patch on Granny Weatherwax, Nanny Ogg and naive Magrat Garlick in “Wyrd Sisters“.  His sense of humour was evident in almost every word he wrote.  I loved nothing more than waiting to see the plot twists and turns that each new storyline would take and spotting the sometimes obvious, sometimes more oblique references to popular culture.  And in every step of my adult life; be it at university, in the work-place, waiting at the school gates or in our EGID world, he has oft become the common bond that starts a friendship or fills a gap in the conversation.

In the days following his death, Terry Pratchett’s fans have given him tribute by taking ideas from his books to create a fitting memorial.  The first was a petition asking Death to “Reinstate Terry Pratchett” because Terry himself said that “There are times in life when people must know when not to let go. Balloons are designed to teach small children this” and already nearly 30,000 people have added their names to this request.

The second took an idea from his 33rd Discworld novel, “Going Postal”, which saw the advent of a communication system, somewhat comparable to the internet.  When a key character dies, a message bearing his name is sent down the lines on an unending journey to ensure that it is kept alive indefinitely because “A man is not dead while his name is still spoken.” Keen Pratchett fans have developed code that is being embedded on websites to ensure that his name is similarly forever encoded on the internet.x-gnu

In the past few days, I have started to revisit his books, many of which reside on my book-shelves, and have found myself to be once again amongst old, familiar friends.  The humour never fades and with each reading, I discover a small nuance that I hadn’t noticed before.  Rincewind, Granny Weatherwax, Captain Vimes and the Discworld have been a part of my life for nearly 30 years and I look forward to introducing both G and M to these adventures in the not-too-distant future.

luggage

“No one is actually dead until the ripples they cause in the world die away…”

– Reaper Man

Photographic evidence

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It was a busy weekend.  So busy that I haven’t had time to write it up (yet), so I thought some photo evidence might be in order.  From the successful face-painting for Friday’s Comic Relief to the Big Bang Science Fair on Saturday and Mothering Sunday, there’s photos of it all!

Just one more dress-up challenge!

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20150301_144602These past 2 weeks have been filled with one dress-up day after another for our household. Of course, it all started with the Cluedo party we held to celebrate G and M’s birthdays, where we invited guests to come in optional fancy-dress to match their character if they wanted.  The key word was “optional” as I was well aware that not all of M’s friends are as big a fan of fancy-dress as M is, but we were impressed with the range of costumes that arrived on that Sunday afternoon.  We had “Reverend Green” sporting a dog collar and a striking pair of bottle-green jeans; “Earl Grey” in pinstriped waistcoat, bowler hat and monocle and “Admiral Azure” had a home-made pair of epaulettes that would cause envy in the heart of any member of the armed forces.  Not to be outdone by the costumes of the boys, many of G’s friends joined in, wearing dresses to reflect the glamour of “Mrs Peacock”, “Mrs White” and “Lady Lilac”.  Dress-up challenge #1 – done.

20150305_083738Just a few days later came the first of our dress-up days at school, World Book Day.  Refusing to give in to M’s demands for a custom-made costume this year, I instead insisted he wore the army captain’s costume that we had bought for his representation as “Captain Emerald” at their birthday party and suggested he went as “Captain Nicholls” from Warhorse by Michael Morpugo.  We have recently enjoyed the stage production of Warhorse whilst it was on tour around the UK and M had bought himself the book for his admission to GOSH before Christmas, so he leapt at this chance, though in typical M style, he chose to be the lesser-known “Major Stewart” because he “got to ride Topthorn and not Joey, Mummy.”  G also wore a costume she had in her wardrobe and despite dicing with the idea of being “Dorothy” (Wizard of Oz) for the 3rd year in a row, ended up going as the “Princess” from Aladdin, wearing the Disney outfit from our Florida holiday last year.  Dress-up challenge #2 – tick.

20150306_154905The day after World Book Day, M had his Roman “Wow” day at school, requiring, naturally, a Roman costume.  He had originally toyed with the idea of going as a Celtic slave, but when the morning dawned, he had a change of heart and out came my trusty needle and thread, one of Mike’s white t-shirts, G’s plaited belt, M’s old white karate trousers and one of my red pashminas.  Less than 30 minutes later, our very own Roman-esque citizen made his way up to school – not bad for a quick Google search and 15 minutes of hurried sewing!  Dress-up challenge #3 – survived by the skin of our teeth!

 

20150311_210916I had a quick breather over the weekend, which was time enough to celebrate M’s 9th birthday itself and to gather the necessary base materials and trimmings for the next fancy dress requirement – a Greek toga each for the end-of-term Stagecoach performance.  Fortunately we were provided with a set of instructions on how to make a simple toga and G had acted as a model during Stagecoach a couple of weeks ago, so I had already had a sneak preview of how to put the costume together.  The togas themselves were simple enough to make, but then came the lengthy task of adding trim to suit the needs of my demanding duo and the trickier job of making the togas fit.  It might have taken a (very) late night, but the end result was fantastic and I can’t wait to see them perform on stage at the end of March wearing these masterpieces.  Dress-up challenge #4 – future success.

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And so it’s on to just one more dress-up challenge as tomorrow is Comic Relief and the challenge to “Make your face funny for money”.  The costume is the easiest part of the day as they just need to wear their own clothes to school, but the challenge will come early tomorrow morning, when we need to be up at the crack of dawn to give me time to face paint them both.  G wants a tiger and lion on her cheeks, so we’re going to cheat slightly by using M’s tiger feeding friend stickers on one cheek.  I’ve promised her a lion’s face on the other side as long as she’s happy with a cartoon style decoration.  If we have time, I’ll also do her hair in a funky style and, fingers crossed, both will last her throughout the school day and tomorrow evening’s Stagecoach session.

Courtesy of blog.partydelights.co.uk

Courtesy of blog.partydelights.co.uk

M’s face will take a little more work, but I wanted to do something a little different to his tube for the day.  The plan is to cover his tube with both the tegaderm dressing and then a layer of safe micropore before I get to work with the face-paints.  We’ve agreed on a snake design, which will hopefully see me camouflaging his tube as the snake’s tail as it winds around the back of his head, with the snake’s head, complete with sticking-out tongue, appears on the opposite side.  Whether it will work or not, we will just have to wait and see, but I promise a photo if all goes well!  Dress-up challenge #5 – still to be decided.

9th celebrations

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“Sometimes,” said Pooh, “the smallest things take up the most room in your heart.”

– AA Milne

I can hardly believe our beautiful, cheeky and courageous little man has turned 9.  He continues to amaze us and I have no doubt that this year, just as in years past, he will carry on stepping out bravely with his indomitable spirit intact.  Happy birthday little bean – we love you.

…to this

Piece of cake

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20150225_231442 sr_162935_largeThese photos are of the supplies I needed to create this year’s  birthday cake masterpiece for Master M as, after all, this had to be a birthday cake like no other I’ve ever baked before.  In the same way that I had discussed my plans for the food we would serve at their Cluedo party with M, we sat together to talk about the various options for his birthday cake.  I could bake a “normal” cake for him to give to his friends, I could use polystyrene dummy cakes to create an authentic-looking, but totally M-friendly cake or we could try something completely different.  A friend had suggested using small bottles of 7-up to create a tiered cake and then giving every party guest a bottle to take home, which I thought an inspired idea as it’s one of the few things M has been able to enjoy since his NG-tube was passed, but M disagreed.  He preferred the idea of the polystyrene “fake” cakes and we headed off to the shops over half-term to source the cakes, decide how many tiers he wanted and get all the art supplies I might need.

20150225_200407Every year I try to create birthday cakes that either echo the themes of the parties themselves, be that mini-golf, magic or minions; or that are innovative and something the children have never seen before, such as last year’s pinata cake for G.  This year’s Cluedo theme offered me a wealth of ideas and I just needed to decide how to put them into action. I settled on a black base layer and ever-grateful to avoid the nightmare of icing a free-from cake, attacked our 3 tiers with a sturdy brush and bottle of black paint.  “Cakes” fully covered, I liberally sprinkled some silver glitter over them all before the paint dried, positioned the silver 9 on the top and added an emerald green ribbon trim for that touch of old-fashioned glamour and to fit with M’s role as party host, “Captain Emerald”.  I stuck the tiers together using PVA glue and then inserted some wooden skewers, just to make sure there was no chance the cake would fall apart before the day itself.

20150225_210001Next came the fun part of adding the decorations.  I had previously printed out silhouettes to use for the characters and images for each of the murder weapons and had a number of them left-over after I had prepared the cards for the party itself. Choosing carefully, I glued the weapons to the bottom layer and a selection of characters to the middle layer, making sure I included the image of G’s character, “Countess Pearl”.  My final step was to stick Captain Emerald’s silhouette to a piece of black card that I had already covered generously with more silver glitter and added this, leaning against the top-tier of the cake, before leaving it all to dry.

20150227_132323M’s cake sorted, I moved on to the preparation of a cake for G.  Much as I had enjoyed exploring the “crafts” side of my personality, this was the moment I’d been waiting for since Christmas.  Not so much the baking of a cake, though I love decorating birthday cakes to wow my children, but more because I finally got to use the best Christmas present I had received and one that was completely unexpected.  I’ve been drooling over the KitchenAid food mixers for years, imagining one gracing my kitchen counters and last year started saving towards buying one of my own.  To my delight, and absolute surprise, my wonderful Mum invested in a Ice-blue model as my Christmas/birthday present and it’s been sitting in the kitchen, taunting me daily with its absolute beauty, whilst I’ve waited for a chance to take it for a test-run.  All I can say is thank goodness I needed to whip up 24 G-friendly cupcakes as well as the birthday cake itself as I flew through the first task and loved every moment spent doing it!

20150227_141709My birthday cake challenge was easier this year as although G has allergies of her own, I was able to use eggs, an ingredient I haven’t baked with in over 3 years.  I used a simple gluten- and dairy-free recipe and then split the mixture between 5 bowls.  Inspired by both the colourful characters in the Cluedo game and a recent episode of Great British Comic Relief Bake-Off, I added 5 different food colourings – 1 to each bowl – and then marbled the cake mix in the baking tins.  20150228_114150As I waited for the cakes to bake, I turned to my trusty laptop to search out some ideas for how to decorate G’s Cluedo cake and settled on recreating the board itself out of icing.  Working late into the early hours of Sunday morning to finish this final part of the party preparations and when I finally fell into my bed at around 3am, I was delighted with the end results.

The big reveal of my “showstopper” cakes was a huge success.  Both G and M were thrilled with their cakes and liked the fact that even though they were completely different, they both fit our Cluedo theme perfectly.  The cakes had pride of place at the centre of our Dessert buffet table and were a real talking point for children and parents alike.  A job well done, though I’m not rushing to make 2 cakes for the same occasion again any time soon – my nerves just can’t take it!

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A Whodunnit birthday!

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In the past 3 months, we’ve conquered Christmas, survived the return to school, managed the mysteries of the NG-tube and, most recently, started to tackle the tricky business of food re-introductions,  Now it was time for my biggest challenge yet:  M’s birthday party.

20150301_143337As G turned 11 back in December when M and I were in GOSH and we didn’t get to mark it in any great way,  I wanted to make sure she could celebrate her day with her friends albeit belatedly.  By the time Christmas had passed, the new year was in and we got round to making plans, half-term was fast approaching with M’s birthday hot on its heels.  I tentatively suggested we threw a joint party, not at all sure what response I might get and was delighted when they leapt at the chance.  Next came the trickier job of agreeing what to do and even though many ideas were bandied around, we struggled to come to a compromise that suited them both. With M keen to do LaserQuest or rock-climbing and G hankering after bowling, a final decision seemed impossible to reach until, in a rare moment of like-mindedness, they put their heads together and came up with the idea of a Cluedo-themed birthday party.

20150210_225626The first step was to set the scene for the murder of Mr Black by choosing enough character names, crime scenes and potential murder weapons to accommodate 16 children.  We started with the original lists of the game itself and added to them, ending up with 10 weapons, 10 rooms and 16 characters, which G and M allocated to each of their friends in turn.  I designed and then created the invitations to be handed out at school, inviting the children to join in the birthday celebrations for Captain M Emerald and Countess G Pearl.

Naturally, the finer details of exactly how the party would be run were left to me, but I loved the idea of a murder-mystery style party based on this classic board-game and have spent much of the last 4 weeks planning, preparing and perfecting each element of the day.  The children had lots of ideas about what they wanted to do and we ended up with a series of games, activities and refreshments that would prove to keep the most picky of 11 year-old girls and most active of 9 year-old boys happy for 2 hours.  Each game was attributed to one of our 16 characters, so the guests had the opportunity to test their skills with a Nerf gun at Colonel Mustard’s Shooting range or joined in the pottery painting classes run by Mrs Peacock and Lady Lilac.  We wanted the children to still experience the original aim of the game and work out the who, where and how of the murder, so every activity they did gave them the opportunity to reveal more cards to eliminate suspects from their lists.  This could be as simple as decorating a cupcake for Reverend Green’s church fundraiser to see 2 cards, or as revolting as delving deep into Mrs White’s giant trifle to pull out another one. Everybody had a chance to try their luck at each of the games and they all had a whale of a time.

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As M is still very limited with the foods he is currently able to eat, I decided to avoid a traditional party tea and instead served a dessert buffet, which included pineapple and Foxes glacier mints, both of which are safe for him.  He was also involved heavily in the decision-making about which cakes, biscuits and sweets would be on offer to his friends, which meant he was aware of what his friends would be eating and was happy to sit with them and chat as they all helped themselves to the selection of treats.  20150301_155523The final party game was “Pass the revolver”, which saw the children completing forfeits to see the final 2 Cluedo cards before they had to reach their conclusions and share the results of their investigations.  Nobody successfully worked out all 3 murder cards, though there was a small cohort who managed to work out 2 of the 3 elements correctly.  We finished with the traditional rousing renditions of “Happy Birthday” and then sent our guests on their way.  Both G and M loved every moment of their Cluedo birthday party and the text messages I’ve since received have assured me that their friends had a great time too.  In the words of one of M’s friends, it was “the best birthday party EVER!“

“I like rice…

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..Rice is great if you’re hungry and want 2000 of something.”

– Mich Ehrenborg

I never realised just how daunting food could be until we embarked on our dietary journeys with our children.  It might sound ridiculous, but having achieved such a resounding success from M’s move to the elemental diet, the prospect of food reintroductions caused my heart to beat a little faster, my palms to grow a little sweatier and several middle-of-the-night awakenings to contemplate just how the whole process would work.  A big part of the problem was the lack of useful any information from the dietetics team about…well about anything I wanted to know.  I like to have a clear plan to follow and needed to understand how we would choose which foods to start with, how each food should be prepared, how much to give and how often.  The vagaries of sweeping statements such as serve M “a portion”, with no hard and fast details of the specifics drove me insane, but with lots of discussion, frantic e-mailing and a move back to our old and trusted dietitian rather than the one I’d had run-ins with during M’s admission, we finally got the answers we were after.

Courtesy of alternative-doctor.com

Courtesy of alternative-doctor.com

The decision was to begin with rice, commonly considered to be hypoallergenic and therefore a great starting place for M.  Whilst many children reintroducing foods following the elemental diet might trial potato first, this was one of the known triggers for M’s allergic reactions and so we needed to find a basic food that was likely to be safe.  Despite being told that we could comfortably start with a “portion” of rice, I chose instead to take things slow and M had just 1 tablespoon of plain, boiled rice on that first night.  He enjoyed his mouthful and, looking forward to having more the next day, carried on somewhat oblivious to the anxious monitoring I was trying desperately to hide.  The evening passed without event and we all went to bed happily – well, the rest of the family went to bed happily, I went battling the usual Mummy-paranoia that accompanies anything and everything that involves my children and their welfare.

Courtesy of smartwebsite.ru

Courtesy of smartwebsite.ru

Since that day, around 4 weeks ago now, we have been able to gradually increase the amounts of rice M eats each day and have branched out to include rice milk, rice cakes and gluten-free rice cereal – a veritable feast!  This week I even managed a rice batter, using rice flour and sparkling water and made some deep-fried rice balls to tantalise his taste buds.  M has shown an occasional atopic reaction to the rice as it triggered a rash across his shoulders and back, although the hives have now calmed down as his body has become accustomed to eating once again.  Despite this rash, we have seen no reaction in his bowels and are able to count rice as a “safe” food for him.  Even better, we have also been able to add chicken to the mix and this week have been trialling pineapple, though the jury is still out as to whether this may be causing a mild behavioural reaction akin to the one we’ve seen him experience before to soya.  Assuming all is well with the pineapple, we have plans to trial pork, cucumber and carrot over the coming weeks and may even have time to squeeze in another carbohydrate before we head back to GOSH in April.

E028 – the success story

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When we started this new chapter in M’s life 10 weeks ago, we approached it with the attitude of “hope for the best, but prepare for the worst”.  We hoped that the move to an elemental diet, consisting of 1500mls of E028 each day, would bring some much-needed relief to his bowel and body and that, from that recuperation would come a way forward that would improve M’s quality of life.  And whilst we were well prepared that there was a chance it might not work; that it might not bring the recovery M desperately needed and that we might have to look to even more extreme measures to reach our end goal of improved health; that wasn’t a prospect we were prepared to spend too much time on, yet.  It was far more important to be positive about the route we had chosen, which wasn’t an easy choice to make and had its challenges from the start: be they passing the NG-tube at GOSH or figuring out our new routine at home.

Courtesy of nameonline.net

Courtesy of nameonline.net

Despite the roadblocks thrown in our path, we’ve kept plodding on, negotiating our way skilfully around the inevitable melt-downs, tantrums and even those tempers that lead to a tube being pulled out accidentally.  We’ve all learned valuable lessons – don’t storm off in a temper following a sibling argument leaving your pump behind being a key one for M – and we’ve survived as a family and, dare I say it, grown stronger as one too.  We have laughed, cried and got angry together.  We’ve used that laughter to overcome the depths of despair and we’ve focussed on the important things in life.  Mike and I have long been a team, since the disastrous surgery on my left eye for diabetic retinopathy 17 years ago just weeks after Mike had moved to the UK and before we were even married.  We may not always see eye to eye, but we have grown together and take turns in being the strong one when the other is feeling weighed down by the world.  Now we have 2 children who are learning those same lessons and this experience has shown me just how amazingly strong our children are. They’ve coped with all that life has thrown at them and whilst they may have been knocked down occasionally, they’ve learned to pick themselves up, to brush themselves off and to keep going along their paths. The last 10 weeks have seen them grow in their empathy for others and they too have taken turns in being the strong one when faced with adversity.

Courtesy of artiwards.com

Courtesy of artiwards.com

The best news of all is that we now know that every exhausted step has been worth it and I’m thrilled to be able to share that, for M, the E028 has been his success story.  Within days of the switch to a food-free diet, the near constant diarrhoea that has been the bane of the last 9 years of our lives stopped.  Just like that. No magic potions, no magic wands, no tricks and, so far, no looking back.  M has become the fun-loving, caring, well-behaved little boy we all knew was hiding somewhere within himself.  His joie de vivre has returned and his humorous outlook on life is much more evident.   As each day passes, we are slowly and surely making more and more progress and his confidence has grown as evidenced by his abandonment of his daytime reliance on pull-ups for the first time in a year.  It’s not been a perfect cure by any stretch of the imagination and his weight is once again giving us, and the medics, cause for concern, but it’s a massive step, a giant leap in the right direction.  We are lucky that this proved to be the way forward for M and we are truly grateful for that as we know so many other families who have not found it to be the answer to their health problems and are still battling on.

Meanwhile, the next step is the big one for us: food reintroduction.  We need to work on getting food back into M’s diet without upsetting this balance that he has found right now.  There’s a “sort-of” plan from the dietitians about how we go about trialling each food with M, but for the most part it’s going to be driven by us.  Having finally got my lad to the point where “I feel better Mummy, my tummy’s less grumbly and I just feel…well…feel so much better in myself“, I refuse to be hurried and I’m going to protect this new sense of well-being with all my strength and determination.

 

Pump action

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pumpHaving sussed making the elemental feeds, and NGT management having quickly become second nature, our final challenge was to learn all about the small piece of equipment that is going to become a key member of our household for the next few months – the pump.  M has the Flocare Infinity pump from Nutricia, which has proved to be easy to handle and quick to program.  I was trained in just 40 minutes whilst M was still admitted at GOSH and even though it all felt rushed, it was actually all I needed and I was just about confident enough to go home with him 2 days later.  Our excellent Nutricia nurse, from their local community nursing team, came out to train Mike the day after M was discharged and she has also held a training session at school to ensure key members of staff are up to speed with what they need to do during the school day.

The set-up is easy.  The first thing we have to do is set the volume of the feed – either 1000mls or 500mls for M – and the rate in ml/h, which we set to 150 ml/h.   The pump retains the information from the previous feed, so it is important to check that these 2 figures have been set correctly for the feed you’re giving.  I then press the “info” button, which tells me the exact dosage that was given to M in his previous feed and clear this number from the pump’s memory.  This records how much of the required volume has been given since the pump was started, so if you don’t take care to delete the previous information, you could find yourself giving a lot less than the required amount.

The pump is then attached to the feed bottle via a feeding kit, which is a length of tube that joins the bottle to the NGT via the pump itself.  We were provided with a small plastic stand, which holds the pump at the bottom with the bottle hanging upside down above it, firmly strapped in place.  The feeding kit is attached to the top of the bottle, threaded around the pump stand, carefully avoiding getting it trapped between pump and stand, and then looped around the mechanism inside the pump.  Before connecting the loose length of the feeding kit to the NGT. you need to fill the entire length of the feeding kit tube with the feed to make sure you’re not pumping air into your child.  We were shown to do this using the “fill set” button, which runs at the fastest rate possible and takes seconds to fill up.  Once this is done, it’s simply a case of attaching NGT to feeding kit tube and pressing start.  All being well, the feed is now underway and, in an ideal world, you can leave the pump alone until the feed is finished.

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However, reality is very different and you will quickly become attuned to the beeping of the pump alarm.  It can and will beep for any number of reasons: there’s air in the tube, the tube has become kinked or blocked on the way into the pump mechanism,  the tube between the pump and your child’s NGT has been kinked/blocked/sat on/folded tightly between your child’s fingers such that the formula has no place to go or sometimes, just because.  Sometimes the alarm is easy to resolve, simply a case of stopping the pump, removing the air/blockage/kink and restarting; but sometimes no amount of jiggling wires, shaking formula bottles or removing everything from the bag and the stand will stop that alarm sounding every 5 minutes or less.  We’ve even tried that old IT support favourite of switching it off and then on again and have had limited success in silencing the beeping for more than 5 minutes.  Both G and M know how to switch the alarm off, but both are guilty of occasionally forgetting to make note of what fault featured on the digital display, leaving it to my superior Mummy detective skills to work out exactly what might have caused the problem that time round.  Nevertheless, the odd mad beeping episode aside, the pump generally does what it should and copes in an admirable fashion with being bounced around on M’s back for 10 hours a day.

Courtesy of minionlovers.weebly.com

Courtesy of minionlovers.weebly.com

So this little purple pump has become our new best friend.  Just like a favourite fashion accessory, we rarely leave the house without it or the trusty back-pack.  M can do almost everything whilst wearing it and has become adept in the art of adapting to its very presence in his everyday routine.  And whilst it is ever-present, we’ve learnt to have a laugh and have attributed it with its very own personality.  Some of the lovely FABED family shared that naming the pump helped make the whole experience easier and more fun for their child and one Mum even said that the pump reminded them of a minion.  This latter idea made all of us smile because we knew instantly what she was referring to: the incessant beeping of the alarm which is hard to distinguish from the “Bee-do bee-do” heard from the Fireman minion who helps put out Gru’s office fire.  Of course, even though M’s pump bears more resemblance to one of the evil purple minions from Despicable Me 2, bent on a path of destruction, it’s hard work and support in providing M with the means to have the nutrition he needs is far more comparable to their loveable yellow counterparts.

Disclaimer:  I am not a medical expert and this blog does not constitute medical advice. I have detailed how we have been taught to run M’s pump by the professionals involved in his care. Please note that any questions concerning a feeding pump and the associated kit should always be directed to your medical team.