Tag Archives: feeding tube

NEAW 2017 – The journey continues

NEAW 2017 is drawing to a close, but for those of us living with EGID the journey doesn’t stop here. Everyday will continue to involve taking a number of medicines, examining food labels, careful food preparation, monitoring symptoms and hoping that the next day will be even better. Small hiccups might become major hurdles to leap, or may pass by almost unnoticed as we breathe a sigh of relief that they didn’t become something more. Parents will continue to find last-minute solutions to unexpected activities at school, plan trips out with military precision and pull together paperwork, photos and lists of symptoms to take to the next hospital appointment. We will comfort our children whatever their battle, be their most ardent cheerleaders and be prepared to tackle anything and everything to get them the very best healthcare and support. Despite the increasing uncertainty about the EGID diagnosis, we will continue to raise awareness and, more importantly, we will never stop believing in our children.

This is the short film G and M made 2 years ago to explain EGID to their classmates. Whilst M does not have his feeding tube any more, the message is as clear now as it was then and I wanted to share it again:

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

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The impact of mental health

In a world that is frighteningly open as people regularly share their location, activities and even the contents of their lunch box via social media, there is still a huge reluctance to linger on anything that hints at emotional instability or mental distress; but the sad truth is that matters of mental health are a huge part of living with a chronic illness and not just for the individual concerned. Today is World Mental Health Day, a day that is seeking to raise awareness of mental health conditions in an open and honest way, to encourage individuals to understand more about how these problems can affect just about anyone at one time or another in their lives and how others can support them. There is a tendency to make light of the language used when referring to mental health issues, after all, how many times have we heard someone say that they’re feeling depressed about having to go back to work after a holiday or the break-up of a particular pop group1-in-6-wmhd, when what they really mean is that such events have saddened or upset them rather than the total immobilisation that comes when you struggle with depression on a daily basis. I am not devaluing the emotions they may be experiencing when those things happen, but are they really akin to the overwhelming nature of depression? I think not.

I don’t speak lightly as I have been dealing with the constant presence of recurring depression since my teenage years. I know what that “black dog” is like and just how much it can impact on your ability to function on a day-to-day basis in the real world. As a teenager living with T1D, I struggled with accepting that this was a reality that was never going to change for me, that the need for regular injections, sensible eating and facing the risk of serious complications was never going to disappear. I didn’t handle it well. Though few of my peers may have realised it at the time, I refused to do what I needed to do to maintain my health, not because I wanted to cause myself problems, but because I couldn’t see a way to live like my friends and not feel isolated by my T1D diagnosis. I know that I was not alone in my reaction to my chronic illness and my family and I owe a great deal to my fantastic consultant who worked hard to help minimise what often felt like insurmountable differences as I went through those troubled years. With time and support, untitledI did eventually come to terms with my diagnosis, though sadly my determination to get my T1D control back on an even keel brought with it an unexpected complication with my eyes, which in turn has led to even more serious implications than I could ever have imagined when I was 13 and feeling very much on my own in a battle against the rest of the outside world.

Move forward a few years and I found myself back in the mental health fight when I was diagnosed with post-natal depression following the difficult pregnancy and early arrival of M. This time I was more open to receiving help and my diagnosis, when it came, proved a huge relief as I didn’t have to actively speak out and ask for that support. Having struggled with counselling as a sole answer to my depression as a teenager, I readily accepted the suggestion from my GP that I be prescribed with low-level anti-depressants for the first few months and am not ashamed to say that those helped me through some very dark times indeed. Anti-depressants are not for everyone, just as much as counselling hasn’t always proved to be a success for me. There should be no stigma attached to needing that medicine to survive the battering of a mental health problem. It is a necessity for some, just as insulin keeps me alive or a feeding tube and elemental feed proved to be what M needed to help him regain better health.

I have learned over the years to identify when I start to feel a little low and my ability to cope with the everyday becomes more of a strain. Mike and my Mum have developed their own sixth sense to pick up when I am beginning to struggle and offer me their unfailing support as I try to find my way back out of the pit. Our 7 year journey to get an initial diagnosis for M and the ongoing challenges in keeping him fit and well have taken their toll and there have been times when tempers are frayed and relationships fractured because of it. 1-in-3-traumatic-event-wmhdThat strong support network of family and friends who are constantly surrounding me is invaluable and the knowledge of what is really important – M and G – keeps me getting out from under the duvet every morning and making my way through each day.

Even more importantly, my own experiences with chronic illness mean that I am well-tuned to the impact that his own diagnosis will have on M. It is a frightening reality to face that your own child might end up fighting the same demons that you did at that age, but it also gives me an insight that lends a level of trust and understanding between M and me that is unlike the relationship he has with anyone else. I can fully empathise when life seems unfair and unjust and he can allow his emotions to pour out because he believes that I get it. We have long been arguing for psychological support for M and finally, thanks to a developing shared care relationship with our local hospital, that seems to be being put in place. Our new gastro consultant has fully acknowledged that the EGID diagnosis will have not only shaped the person M has become, but also had an effect on G and on our family dynamics. He wants to adopt a holistic approach to treating M and the next few weeks will tell if that is a solution that will make a significant difference going forward. I know that recognising the signs of mental stress now are really important when it comes to M’s ongoing mental health, especially as there can be no denying that he already struggles with mood swings, anxiety and feelings of isolation, not just due to his EGID, but also because of his dyslexia and dyspraxia. Early recognition of those symptoms will help us and the medical professionals find a way to put into place coping mechanisms that will serve him, not just now, but into his adulthood too. He already has a good cohort of friends surrounding and looking for him, but they are young, only 10 years old. Just as with any other child as they grow up, he will learn to distinguish those who will stand by him through thick and thin and those who are just there for the fun times. Most importantly to me, 70300is that he doesn’t feel ashamed or embarrassed by the times when he’s not able to cope emotionally, or mentally, or even physically with the pressures that his diagnoses will have on his life, and that he learns to openly acknowledge them; and that he realises that he’s not on his own in that regard.

Likewise, we can’t ignore the reality that having a chronically ill sibling has a massive impact on G and her mental health too. The Young Carers meetings that she has attended over the last few months have covered the areas of anxiety, facing fears and anger management, which are all inextricably tied up with the role of being a young person caring for another. Those sessions have taught her strategies for dealing with her yo-yoing emotions and provide an outlet for them in a safe and understanding environment. She has made stress balls and relaxation jars to bring home and use as she needs. I hope that the proposed psychology appointments at our local will not only look to support M, but also to help G in her own right as well as us as a family. These are all things you don’t want to even consider that your children might ever need to deal with, but there is no escaping the reality of chronic illness and mental health, and we need to accept our responsibility to help them both. That is the key message of today’s World Mental Health Day – that we all have a role to play in supporting those around us as best we possibly can.black-dog-step-on-you

A Survival Guide For School & Allergies

The end of August always seems to be something of a surprise in our household. We arrive home from our holiday feeling relaxed and calm and then almost immediately face a madcap race to reach the finish line of shoes bought, uniform named, PE kits found and bags packed before school starts. In years past I have also had to make sure provisions are packed, discussions had and medical notes updated for M, but, for the first time ever, this year I wasn’t trying to squeeze in a critical meeting alongside my own new start with a new job. img_11331I know that next year when M moves up to our local secondary school it will be a very different picture, but after 3 years of working with the teaching community at our junior school, and with no major changes to contend with, M was able to start in Year 6 without this over-anxious Mum hovering in the background.

Without a doubt we have been incredibly lucky with the amazing support given by the fantastic teaching staff at our local school, but we have also had more than our fair share of bad experiences and teachers who don’t care in the past and I can well remember the anxieties and hours of meticulous planning that heralded the start of every new school year. The novelty of not having to head into the classroom before the end of M’s first week back has still not worn off and I’m certain that it’s thanks to the hard work that’s been put in on all sides to formulate strategies that meet M’s needs and to develop a strong working relationship between home and school that is reliant on open communication that flows both ways.

Over the last few weeks, there’s be a lot of chatter in the online allergy community about the fears that surround the milestone of starting school and, with over 8 years of “parenting-a-school-child-with-allergies” experience under my belt, I’ve been asked what tips I would give to any parent facing this situation for the first time. In all honesty, M’s first few years at school were difficult and certainly not the positive experience we would have liked. We had to deal with a SENCo, who trivialised his allergies because they “…wouldn’t have to call 999 if he ate something he shouldn’t…” and refused to recognise how important it was to communicate his allergies and health issues to any member of staff dealing with him and not just his class teacher, which led to numerous occasions of him being offered food he couldn’t eat. His teachers lost their focus in teaching him because they felt he already had a lot to cope with with his regular appointments at GOSH and his education suffered as speech impediments, dyslexia and dyspraxia were missed by those who worked with him on a day-to-day basis.

Fast-forward to the start of Year 3 and all our negative experiences became a thing of the past. The year actually began at the end of Year 2, when I met with the Head, SENCo and class teacher of his new school to discuss all of M’s health and educational needs and worked with them to put practical solutions into place before the term started. They understood the value of seeing him as more than just his EGID and food allergies, circle-timebut also knew that his health problems were a big part of his everyday life and couldn’t be ignored. At the end of his first week there, M’s teacher held a circle time in class where she shared about M’s ill-health and restricted diet with his classmates. It was done in such a nurturing and non-confrontational manner that by the end of the session M was willing to answer any question that his new friends had about what they had been told himself and has being doing so ever since.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As for his swap box, it has proved to be an invaluable tool in the classroom setting and is something that is really easy to implement. The idea behind the swap box is a simple one – it contains a selection of safe items, be they edible or non-edible, that can be swapped for those unexpected treats that sometimes come into the classroom to celebrate birthdays or other special events. When M’s swap box came into being, it was filled with a mix of Haribo sweets and the odd Lego minifigure and the choice was his as to what he chose to take. Since going elemental 2 years ago, the box now contains Lego, trading cards and other fun small toys and ensures that M never feels that he is missing out when his friends celebrate. What’s more, his teachers have taken inspiration from it for their own purchases of small gifts at Christmas or the end of term and given him something he can enjoy.

I think the biggest secret to our great experience with our Junior school is communication. The lines of communication are always open and actively work in both directions between home and school through meetings, phone calls, e-mails and the home/school book. The willingness of so many of the school staff to learn to support M to the best of their ability has created a level of trust unlike any other and means that I am ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery class in the school. When he left his Infants school, he was a child reluctant to talk about his food allergies or hospital appointments because he was scared of being isolated and bullied because of how different he was to everyone else. These days he has an incredibly strong friendship group who look out for him during school hours and think about him when he’s had to be in hospital, and he never thinks twice to share what’s going on with his friends.

If I had to sum it up, I guess I would say this:

Be open, be honest, be available. Keep communicating and tell them how they can make it better if you need to. Do what you can to help them out and don’t forget to say thank you when they get it right.

Day 3: Nutrition and teaching the experts

Back in November, I offered my help to PINNT to write an article for a nutritional magazine on the subject of being a parent to a tube-fed child. I wanted to share our experiences of the last 12 months and, upon reading the questions asked, I felt it was a real opportunity to reach out and teach the medical professionals who work with families like ours. The potential impact of this article is huge as the magazine has a UK readership of over 13,000 health professionals and is the only nutrition magazine that reaches across the nutrition profession.

magsIn addition to virtually every practising dietician in the UK, it is mailed directly to all senior gastroenterologists, all nutrition nurse specialists and all nutrition pharmacists, as well as lecturers, industry professionals, consultant dieticians and students.

 For day 3 of Feeding Tube Awareness week, I thought I’d include the transcript of my article here:

When did you first learn that your child would need to be nutritionally supported by enteral nutrition?

After four years of increasing food exclusions and a raft of daily medicines, M was still massively symptomatic from his EC and the decision was taken in November 2014 to move him to an elemental feed. His NG tube was passed in early December.

Reflecting back to this stage in your life, what thoughts and emotions were going through your head?

The possibility of a move to enteral feeding had been on my radar for over a year and I had become increasingly certain that it was the best way to try to ease the ongoing symptoms and pain that he was experiencing. The heartbreak of holding my sobbing child at 3am, with tears streaming down my own face, as I struggled to find the words to bring him the comfort that nothing else could bring at that moment in time, had left me willing to try anything to ease his pain.

It took Mike longer to come to terms with the prospect of feeding M via a tube, but by the time we agreed with his consultant that we needed to give it a go, we both felt that it was the chance to give M and his body some much-needed relief. The short-term plans we’d been following for the past three years had been all well and good, but we now needed a longer-term care plan put into place as we just couldn’t keep limping from one appointment to the next with different problems constantly cropping up and nothing really being resolved. The consultant warned us that the enteral nutrition might not be the answer we were looking for, but we were desperate enough to still want to try it and stubborn enough to believe it would be what M needed.

At the time of your child commencing on enteral nutrition, what support and information where you provided with from health professionals, and did you feel this support and information was enough?

AdviceWe weren’t provided with any information about enteral feeding beforehand from the health professionals involved in M’s care and I found most of our information came from online support groups, such as PINNT and FABED. Disappointingly, we then had very limited support from the hospital as the dietician and consultant were both keen to get him discharged as soon as possible and ignored my concerns that we had no local support from our home hospital. Fortunately the nursing staff helped me fight his corner and made sure that both Mike and I were relatively confident in how to manage his tube and work his feeding pump before we went home. M was discharged just 10 days before Christmas and I was really concerned that we would have difficulties accessing any support over the festive period – it was thanks to the wonderful support group parents, the hospital nursing team (who gave me their direct phone number on the ward) and our community nurse that we not only survived, but managed to enjoy Christmas as a family in our own home.

Since being on enteral nutrition what type of long-term care and support has your child received from hospital/community health professional team?

We have a somewhat complex 3-tiered support system in place:

  • The overall plans for his enteral feeding and the slow re-introductions of food into his diet are managed by his consultant and dietician at Great Ormond Street. I speak to his dietician every 3 weeks to review what’s going on and tweak his care; and we see them both every 3-4 months.
  • His tube changes are done every 6-8 weeks at the CIU (Clinical Investigations Unit) at our local hospital, who have listened to his needs and help make the appointments run as smoothly as possible with the involvement of play therapists to help distract him.20141207_124217
  • Our community nurse has helped provide training as needed and is regularly in touch to help and advise as we need.

It may be a somewhat “clunky” approach, but nearly one year on, it’s close to a well-oiled machine and works for us.

How has having a child being fed via enteral nutrition affected your family unit as a whole (thinking about siblings, time in hospital, holidays, etc.)?

Having a child with a chronic illness affects family dynamics and adding enteral feeding to the mix just meant a few additional, albeit significant tweaks for us. The regular hospital appointments do interrupt our daily routine, so I work hard to make sure that life is as stable and as “normal” as possible the rest of the time. M obviously has to take time off school for his appointments, so I try to make sure that he doesn’t miss more than is necessary. I do worry that G gets side-lined at times as our focus so often has to be on M and managing his feeding needs. 20150208_181917We’ve encouraged her to get involved as much as possible and as much as she wants, and she is now very capable of helping with his feeding pump. She’s recently started horse-riding, which is something M doesn’t do and gives me some time to spend just with her. As for our holidays, in the past we often went abroad, but didn’t feel confident enough to try it this first year with his tube. Instead we went to Cornwall this summer, with our car packed full of all the necessary medical equipment and enjoyed an amazing week away. We’re now feeling much more able to cope and are hoping to go to Portugal next summer.

When thinking about nursery/schooling, have you come up against any barriers or obstacles (if applicable)?

The impact of M’s ever-changing health has been particularly profound over the last couple of years and there is no doubt in my mind that the unfailing support of their school has been a steadying force not just for G and M, but for the family as a whole. They were willing to have M in school as normal within days of coming home from hospital and 5 members of staff were trained on the intricacies of his tube and feeds so that he could take part in every planned activity with confidence. The positive attitude of the teaching and support staff has also rubbed off on the children and his classmates have been brilliant at accepting his tube at face value and now don’t even seem to see it.

How and when did you first hear about PINNT?

I first became aware of PINNT through the EGID support group, FABED, and other parents of children receiving enteral nutrition, who all recommended PINNT as a great source of support. I then had an invitation to our local PINNT group’s next meeting.support

How has PINNT supported you?

Whilst we were waiting for M to be started on enteral nutrition, I researched and read as much as I could about elemental feeding and NG tubes – most of that information was on the PINNT website and explained it in a really accessible way. I love getting the newsletters and reading about people on all forms of enteral feeding. Similarly Mike has found huge reassurance in learning that there are people out there who have not only lived on enteral feeding for years, but have thrived on it and that moving M to it could be a positive step. It helps knowing that we’re not on our own and that there is always somewhere to get advice and support from those living on enteral nutrition whenever we need it.

If there was one piece of advice you could provide other parents with, who have a child commencing on enteral nutrition, what would this be?

When you first hear that your child needs to start on enteral nutrition, it’s almost inevitable that you will feel a great sense of failure and a huge fear about what the months ahead will bring. It’s so important to remember that enteral feeding doesn’t mean you failed your child, but that their health needs mean they need that extra boost to get them through each day. After nearly a year on his NG-tube, M has become the fun-loving, caring and somewhat cheeky little boy we all knew was hiding somewhere inside him. Feeding him via his tube has become second nature to us and it hasn’t stopped him, or the family, doing anything we’ve wanted to. The best news is that we’ve just enjoyed the most “normal” year of our lives ever.

If there was one recommendation that you could make to health professionals, involved in the care of patients on enteral nutrition, in order to improve patient care, what would this be?

I wrote this impassioned plea to medical professionals in my blog earlier this year and feel it encapsulates what I want to say to all healthcare providers:

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 when 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 living in fear about our children’s health and life and future, so they don’t have to.

 

pancake*I can’t let today’s post pass without a nodding acknowledgement that it is, in fact, Shrove Tuesday; the day when many of us enjoy a pancake or two before the start of Lent. I can’t even remember whether we managed to eat pancakes last year as M had only just started to trial foods after his 8 weeks on E028, but there’s a sneaking recollection that maybe my Mum cooked some for G, whilst the rest of us ignored the day to the best of our ability. I’m excited that this year I will once again be able to cook pancakes for the whole family and, just in case you need an allergy-friendly recipe to cook for your loved one, I’ve got the perfect one here. Enjoy!

 

A pain scale for every season

My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

painG’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

charlie_brown_pain_scale-170452A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

legoThis third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

Signal LightAt G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.

A Numbers Game

Tomorrow’s Tubiversary marks:

20141207_12421712 NG-tubes and the accompanying tube changes, which included…

2 tubes pulled out by accident and 3 that broke unexpectedly;

4 pump backpacks worn out and replaced (and number 5 will be needed soon);

approximately 70 Feeding Friends stickers and 60 strips of Tegaderm used to keep that tube firmly stuck to the side of his face;

and at least 3 other tapes tried, tested and rejected;

1 Christmas, 1 Easter and several birthdays survived and celebrated;

11026157_10152614450811123_382817830123987117_oNearly 1 whole school year achieved with only a few days off;

1 week away in Cornwall enjoyed;

4 weekend trips planned, packed for and successfully negotiated;

5 safe foods and 2 safe oils identified and back in his diet, resulting in…

…around 15 new recipes adapted and perfected…20151121_162110

4 new kitchen gadgets invested in and well-used…

…and impressively 16 restaurants found to be amazingly able and willing to accommodate the trickiest of dietary requirements

 

Not forgetting:

20150212_082048

M's daily batch of medicines

410 litres of E028 pumped

12 daily medicines reduced to just 3;

nearly 3kg of weight gained

5cms of height grown

 

And including:20141216_121143

12 months of stock counting, and rotating, and checking, and ordering

52 weeks of new syringes and dressings

365 days dealing with pumps beeping – …on…off…start…stop…blockages…settings…errors…”just becauses”!

8,760 hours of making sure Pictures July 06 019the tube is tight enough, taped enough, in the right place enough…and not getting caught on anything

525,600 minutes of longing to be able to hold or stroke or kiss that precious little face without the tube getting in the way

Countless tears shed, hugs shared and frustrations vented

 

All amounting to…

One year of the best health ever

20150208_181917

 

 

 

Easter weekend

Last year, Easter weekend was all about…

20140419_203912

A slice or two of this

20140418_154823

  …several of these

moo free

….and quite a lot of this!

This year, it’s more about this…

20150402_183827 20150402_183532

Happy Easter!

Big Bang Science Fair

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.