Tag Archives: Education

“So much time…

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...and so little to do. Wait a minute. Strike that. Reverse it…”

                                                          – Willy Wonka, “Charlie and the Chocolate Factory” (Roald Dahl)

This past week has been busy and there’s still lots more to do, not least of which is a proper blog post.  However, the reality that is choir rehearsals,..SATS revision,..sunflower growing,..Anglo-Saxon house building,..SATS revision,..CAMHS appointments,..food-trialling,..SATS revision and May Bank holiday trips to Legoland Windsor for “Star Wars Day” as well as time spent prepping for EGID awareness week with Powerpoint presentations to perfect and conversations with local media to be had, means that this week’s posts have gone by the wayside, so instead here’s a small photo round-up to give you a taster of all the fun we’re having:

Because #livinginfear is not *just* about the allergies

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I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me.  I quickly realised that #livinginfear is not what I want for M or, indeed, for G.  It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats.  They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid.  They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf.  After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening.  Most critically, I need to teach them how to respond calmly should those reactions occur.

dsc02717However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised.  Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.

The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions.  My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.

No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is:  that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true.  The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief.  I second guess myself at every turn.  I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.

Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true.  Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t).  I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.

I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey.  I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.

willowtreeBeing a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix.  I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment.  I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.

And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything.  As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.

So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too.  For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments.  We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands.  Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one.  Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment.  Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it.  Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.

“Muuummm, what’s for tea tonight?”

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Oh how this resonates..

If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house.  Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all.  And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears.  Does any of that sound familiar or is it just my household?

For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”?  For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease.  I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar.  Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.

Rice-flour sugar cookies

Rice-flour sugar cookies

In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding.  My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner.  It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks.  What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.

Letter-to-the-EditorSqareMy victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain.  It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef.  Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.”

Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment,  I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.

20140818_143459Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

The big challenge was always to cook M-friendly food and these days that task has become even more testing.  In my opinion, these rules will have little impact on spontaneity or ingenuity – try cooking or baking when you need to avoid wheat/gluten, egg, dairy, soya and potato to name but a few.  Ingenuity comes when you try to prepare a meal that makes your child feel that they’re not missing out and that’s something I feel I’ve proved is possible, even for an amateur cook like me.

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.

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.

A day in the life of my tube-fed child

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Ever wondered how having a tube impacts on everyday life?  Here’s a little insight into a typical day in the life of my tube-fed child:

20150212_0801256am – 8am –  Whilst we try to leave M sleeping as late as possible, our day starts much earlier.  Mike’s alarm sounds at 6am and then follows a perfectly honed routine of taking M’s 1000mls feed out of the fridge, warming it in a bowl of boiling water, aspirating his tube (hopefully with as few interventions as possible), fitting the bottle, feeding kit and pump together and then starting the feed itself at as close to 6.30am as can be managed.  Allowing M to continue to snooze for another hour or so, with his pump fully supported and protected in his bed and the tube taped securely to his back to avoid accidents, is necessary for all our sanity, not least because he still hasn’t mastered falling asleep much before 11pm each night.  Once M’s feed is started, it’s the turn of the rest of us to get up and make sure we’re washed, dressed and eating breakfast before I wake M at 8am.

20150212_0820488am – 8.30am – This 30-minutes window is dedicated to M – getting him up, washed and into his school uniform, whilst negotiating his tube and the pump without too much interruption to the feed going in.  M is evidently a natural contortionist and has not only worked out how to thread his pump and tube through the neck of his clothes whilst still attached, but also how to do it the right way round – no mean feat for a child with dyspraxia and a challenge that has been known to flummox this Mummy more than once.  However, on school mornings I take the easier option of stopping his pump for 5 minutes and disconnecting his tube to allow him freedom of movement and giving me time to put the pump-stand securely into his back-pack.

20150212_0823258.30am – 9.30am – Pump attached and back-pack secured ready for school, we head out of the door and race off to meet up with the walking bus to get G and M to school on time.  Depending on the day, we have to make sure we have the correct selection of bags and other extraneous items with us – school bag, packed lunch for G, water bottles for both, cello or clarinet plus music, PE kits, swimming bag, my packed lunch, my “M” bag (containing spare NG-tube, spare feeding kits, pH strips, 60mls syringe, cooled water for the flush, spare tape and his lunch-time medicine), the 500mls feed for the days when my Mum picks up from school, handbag, office keys, house keys and car keys; oh and mobile phone, mustn’t forget the all important mobile phone!  Once at school, G and M go their separate ways with their friends, I pass on any useful information to key members of staff and then head off back to my car for the 5-minute commute to my office.

9.30am – 1.30pm – Fingers crossed this 4-hour slot should be a quiet one.  Whilst I’m busy working away in my office and partaking in the occasional cup of tea, M is enjoying a morning at school with his backpack firmly attached to his back at all times.  We’ve worked with the school to make some adaptations to allow him to participate fully in all lessons and he’s finally garnered the confidence to run around with his friends at play-time.  He will sometimes request a break from the pump if his tummy starts to ache and the school have been trained to know how to switch his feeds and the pump on and off.  This 1000mls feed takes nearly 7 hours to give and so I head back up to school for the end of lunchtime play to switch the feed off, disconnect M from the pump and flush his NGT through.  The last few weeks I have been working alongside 4 members of staff, who are now fully trained and proficient in M’s needs and they will be taking this role on fully after half-term, meaning less disruption to my working day.  Pump and backpack abandoned and medicines administered, M now has the rest of the school-day “pump-free” and I head back to my office.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

3.30pm – End of school and on to the next part of our day.  On the days when G and M go back to my Mum’s house after school, she first drops M at my office, where I reconnect him to the pump and the 500mls feed begins before I send them on their way and carry on with my work.

4pm – 5pm – If I’ve been the one to meet them at the school gates, then this signifies the busiest part of my day so far.  We start with music practice for both children before they’re allowed to even consider asking for time to play on their tablets or to watch TV.  As the gentle strains of music float down the stairs to the kitchen, I’m busy prepping everything for the hour ahead.  I take the 500mls bottle out of the fridge and start heating it up, ready for a 4.30pm start time.  I boil the kettle to make the feeds for the next day, running between kitchen and dining room to gather up all the necessary sterile medical supplies from the stockpile we have hidden in there.

Courtesy of shutterstock.com

Courtesy of shutterstock.com

I prepare the 2 mixes of medicine for M to take the following day and store both those and the feeds on the top shelf of the fridge.  In between the kettle boiling and the feeds being made, I will hopefully have managed to check M’s NGT placement and will get the feed started on time.  Next it’s on to making packed lunches for G and me for the next day, alongside prepping dinner for G and almost inevitably dealing with the requests for a drink, a snack and tablet time from both children.  If I’m lucky, I’ll also have managed to wash the syringes and medicine pots, washed the empty feed bottles for the recycling, pulled out G and M’s homework books and might even have had time to take my work shoes off and pull my slipper boots on!

Midnight music practice is the way to go!

Midnight music practice is the way to go!

5pm – Bedtime! – The rest of the evening is spent convincing M and G to do homework, hearing them read, monitoring their screen time, peace-keeping, deciding on dinner for Mike and me and any one of a million other tasks that parents across the world are having to complete on a school night.  Friday nights include a 3-hour stint at Stagecoach for G, M and currently for me too as I need to be on hand to tape down his NGT for dance, attach him to his pump during singing and drama and just generally monitor that nothing goes wrong whilst he’s there.  Twice a week that list includes choir rehearsals for me as well as the monthly PTA meetings and the not-so-regular book club meetings I enjoy (assuming I’ve found time to read the book!).  We start the bedtime routine at around 7.30pm and insist that lights are out for G by 9pm.  M then spends the next few hours until somewhere around 11pm reading books, playing his cello, composing music on his ukulele, playing games and listening to music.  He will finally go to sleep once I’m upstairs and going to bed myself and, if Mike is lucky and times it perfectly, by the time he’s put M’s pump on to charge, tidied up the kitchen, put the cats out, set the alarm and come up himself, M will be fast asleep alongside me and it’s a simple case of moving him back to his own bed.  On a good night, we might then get 6 hours of uninterrupted sleep until our day starts all over again.

A Super Tubie of my Own

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Courtesy of feedingtubeawareness.com

Courtesy of feedingtubeawareness.com

This week is #feedingtubeawarenessweek, a week that our family is embracing with every ounce of our being this year.  Last year I wrote about our 2 previously brief encounters with a NG-tube, knowing that there was an ever-present chance that M might end up needing one at some as-yet-unspecified point in the future.  Just 12 months on and the state of M’s health due to his EGID means that a NG-tube is now part of our everyday family life.  The aim of the campaign this year is to dispel the myths and misconceptions that surround tube feeding and to show that adults and children can live their lives and have fun with the tube in place.  A tube is often the path to improved health and development and should be embraced as such by us all.  Their theme is “The truth about tube feeding”.

Picture1M’s friends and class-mates have accepted it as very much part of who M is and have been amazing at looking out for him at every turn without leaving him out of their games.  One friend was so intrigued by the tube and how it worked that I spotted him peering up M’s nostril to see where the tube went, just before M opened his mouth wide and pointed out that the tube could also be seen at the back of his throat – how I love the honest interest of 9-year old boys!  He was more bothered by the Year 3 children at school, who he often caught staring at his tube, but he developed his own coping mechanisms and when asked what “that” was – a question often accompanied by a finger pointing towards his nose – he started telling them it was “…nothing, but a mere figment of your imagination…”, before walking off, leaving in his wake a stream of very confused 7- and 8-year olds.

In light of all this, I was chatting to M this afternoon about his tube and people’s attitudes towards it.  I was interested to find out how he feels about strangers staring and what response he would want them to give instead.  His reply fascinated me as it expressed clearly how much more awareness is needed about tube-feeding and the impact had on those living with a tube. He didn’t mind the idea of people asking me about his tube and the reasons for it, but he isn’t yet comfortable with having to deal with those questions himself.  However, the most telling statement was this one:

“Adults should know not to stare, but sometimes they do and I don’t know why”

and that, in turn, made me think about how I feel about M and his NG-tube.  Hospital, home and support groups all exist within a protective bubble, where nothing is unusual and normal is defined by each individual and their particular needs.  It’s only when you go out into the outside world that you suddenly come up against opinion and prejudice and the harsher side of life; against people who don’t understand that this tube is bringing nutrition and healing to my child and who find themselves unable to pull their eyes away from the tube stuck to the side of his small face.

Courtesy of timemanagementninja.com

Courtesy of timemanagementninja.com

We’ve been lucky and haven’t experienced negative comments or unwanted interest.  Yes, I’ve seen the intrigued looks or double-takes as passers-by register his tube, and I’ve received the sympathetic smiles from other parents as they’ve watched me attaching his pump or silencing the alarm, but nothing more.  We’ve been fortunate to have the most amazing support from the families and friends who are part of FABED, many of whom have been in the same boat at one time or another and know how it feels to be suddenly following a slightly different path through life than the one we thought we were on.

Today, I found an article written by Traci Nagy, the founder of the Feeding Tube Awareness Foundation, in 2013 to discuss the importance of feeding tube awareness and thought I’d share with you this excerpt that sums up for me just why awareness matters so much to families like mine:

“It matters that people understand something about feeding tubes other than Terry Schiavo or that silly KE diet.  It matters that they know there are well over 200 medical conditions and diseases that can lead children to need extra nutritional support through tube feeding.  It matters that they realize that these conditions aren’t always visible, and that looking “normal” doesn’t mean there isn’t more going on inside.  It matters that they know that the feeding tube can be thought of like any other medical device in that it helps you do what you can’t do on your own…for now.  It matters that they understand that the benefit is that children get the nutrition and hydration they need to grow, develop and thrive.”

20150208_181917So, this week we’re the family proudly sporting the “I love a Tubie” t-shirts accompanied by the live-wire that is our very own “Super Tubie”.  Stop and say hello and don’t be afraid to ask me questions, but let M get on with whatever he’s doing.  We’re hoping to raise awareness and are happy to start in our community, after all, we know that every journey begins with a single step.

Our first lesson in Elemental feeding

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Courtesy of shutterstock.com

Courtesy of shutterstock.com

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

Courtesy of soteriapublishinghouse.com

Courtesy of soteriapublishinghouse.com

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

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

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

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

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

School – the hospital way

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One of my favourite memories of our pre-admission waiting time is when I asked M to tell my Mum what was going to happen once he was in hospital.  I had, of course, expected him to explain, in depth, all he knew about the NG-tube and the pellet study, but roared with laughter when he said, in a small voice lacking in any great enthusiasm, “…hospital school…”

indexThe first few days of our stay were dominated by the administration of  the huge amounts of powerful laxatives and M felt so unwell that he refused to move from his bed.  By the end of that first Sunday, however, the tedium of not being allowed off hospital premises had taken its toll and he was keen to head off to school on Monday morning.  The hospital school accepts that the children may not be able to attend a “full” day there and is happy for any child to be there for as long as they are able to manage.  Each day is split into 2 sessions:  10am to 12.30pm and 2pm to 3.30pm.  They cover the basics of maths, literacy and science, but also throw in other subjects such as IT, art and even PE.

indexI discussed with the teacher there all of M’s needs concerning his dyspraxia and dyslexia and we talked about all he’d been learning so far at his home school.  He was one of just 4 children in the Key Stage 2 group during his admission and was able to have a huge amount of one-to-one teaching as there were 4 teachers able to work with the group.  They tackled his lack of enthusiasm for literacy by signing him on to the “Bug Club“, an on-line learning resource which tested his reading comprehension skills.  Each time he was able to read a new passage and answer the questions correctly about what he had read, he received a virtual sticker and was moved on to the next text.  He was set up with his own username and password to monitor the development he was making in class and what’s even better is that they have given us all the details needed for continuing with it at home.

M's amazing chocolate Christmas creation

M’s amazing chocolate Christmas creation

Every morning, M was keen to get up, get ready and get down to the classroom for the start of the school day.  I have never seen him so keen to arrive at school and start working! He had a busy week there and he enjoyed every single moment of it.  From History with the Victoria and Albert Museum to Cookery with the Executive Head Chef of the Hilton Hotel, it was a school week unlike any other.  He even took part in the school’s carol concert in the GOSH chapel, where he read part of the Christmas story.  It proved to be a great distraction from everything else that was going on medically and an amazing opportunity for those children who have to stay in hospital.

Beating the Bullies – Anti-bullying Week 2014

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November’s proving to be a busy month, what with Armistice Day (11th), Children in Need (14th), World Prematurity Day (17th) and this week it’s the turn of Anti-bullying week (17th-21st).  The aim of the week is to raise awareness of bullying and encourages children, young people, schools, parents and carers to come together and work towards stopping bullying for all.  There are no official statistics about the prevalence of bullying across the UK, but recent reports state that almost 45,000 children spoke to ChildLine about bullying during 2013, a worryingly high number and one that’s unlikely to scratch the surface of the problem.

Bullying is defined as “Repeated incidents of physical or mental abuse (teasing, taunting, name calling, threatening, isolating) of a weaker person by a stronger person.”  Stronger is not necessarily defined by size, but also includes those who are more confident or more able to pinpoint a weakness in the person they are victimising. The sad reality is that this naturally makes disabled children or those with special educational needs a prime target for bullies and they are more likely to experience bullying in school and in the wider community that other groups.  The focus of this year’s campaign is to eradicate bullying for these vulnerable individuals in particular.

This focus has struck a particular chord with me this week as M has been dealing with some bullying over the last few weeks at school.  Some of the boys in his class have been teasing him about his allergies by saying that they are allergic to him and then pretending to be physically sick. This has had a knock-on impact in the playground, where the same children have then been avoiding playing with him, leaving him feeling isolated and on his own.  He has some good friends, who have stuck by his side and defended him when he’s felt unable to do it himself; and his big sister has lent her support too by watching out for him whenever she can and inviting him, and his friends, to join in games that she’s playing with hers.

Unfortunately, M’s complicated needs – dyspraxia, dyslexia, EGID and food allergies – make him an obvious candidate for attention from bullies, who only need the smallest difference to focus in on and attack. We’ve taught him to stand up for himself without being aggressive or rude, to ignore whenever possible the comments made and to walk away when the going gets tough; but it’s not an easy issue to tackle.  Right now, he’s anxious about their response when he finally has his tube fitted and is even worrying about how things will go next year, once G has moved on to secondary school.  Don’t get me wrong, his teacher and the school have been proactive in dealing with the bullies, but they can’t take away his fears or his belief that he’s not being heard.

Sadly he’s not on his own.  Children with complex medical needs can feel isolated by their illness as they struggle with feeling different and the questions of why they can’t be like their friends or why they are so frequently absent from school.  Even those with better known conditions, such as T1D or asthma, may have limited contact with others of the same age who are dealing with the same issues and I can only imagine how much harder it is for those with rare illnesses, who may know no-one else with the same diagnosis in their area.  A lack of true understanding about their medical needs and the impact on their everyday life can add to their frustration and the sense of being on their own.  Adding bullying to that already tumultuous mix is often a burden too many and these children may head into a downwards spiral that can result in poor self-confidence, depression and even self-harm.

What can we do?  I don’t have an easy answer to that difficult question.  As a parent I can educate my children to respect the differences of their peers and not to belittle those who don’t conform to society’s notion of “normal”.  I can encourage them to enjoy friendships with everyone and not just those who have similar interests or hobbies.  I can teach them that sometimes they won’t see eye to eye with their classmates and that those differences of opinion is what will challenge and shape their own beliefs.

And as a parent to children who stand out from the crowd, I can help them find their feet in our world, to stand strong when challenged and to see the value in their very uniqueness.