Tag Archives: support

Impractical Jokers – Birmingham 2017

The last month or so has been filled with an unusual number of opportunities for Mike and me to take a little time off from our jam-packed lives at home and have some much-needed time to relax, rejuvenate and re-find ourselves as a couple. We’ve been fortunate that, just as she did last June when we enjoyed my surprise holiday win to Italy, my Mum was willing to take charge of G and M for the duration and we’ve been celebrating our 40th birthdays in style. Our first treat involved a road trip to Birmingham, an overnight stay near the Barclaycard Arena (previously the National Indoor Arena) and an evening spent laughing, courtesy of the tickets I had bought for Mike as part of his 40th birthday present.

img_13471Just over a year ago we discovered the American hit comedy show, Impractical Jokers and have spent many hours curled up in front of the TV, often with the children added to the mix too, giggling and guffawing at the escapades we’ve watched unfold in front of our eyes. For those of you who have never heard of the Impractical Jokers, this hidden camera show follows 4 childhood friends from Staten Island, Sal, Joe, Murr and Q, as they play a series of practical jokes on each other and the unsuspecting general public. In a hyped-up version of “Truth or Dare”, they challenge each other to complete a string of ridiculous tasks, knowing that failure to complete or achieve the goal will result in the biggest loser of that episode having to undergo a punishment at the hands of their friends.

The Jokers usually do not know the details of the pranks until the moment they have to do them and are often pushed to say and do things that are well beyond most people’s normal comfort zones. From saying outrageous comments when serving customers at one of the many stores, fast food joints or cafes featured from New York, to having to convince strangers that they have met before in the most unbelievable set of circumstances, the pranks nearly always have us all laughing out loud. I’d be hard-pushed to say which part of each show we most enjoy, but the final punishments are almost always as funny as the pranks themselves and go from the sublime to the ridiculous. img_13531In many ways, it’s seeing the response that adds to the humour of the situation. My Mum freely admits that she can’t see what makes us laugh so much and perhaps it’s true you require a certain quirky sense of humour to enjoy the half-hour episodes.

Having missed out on tickets for their first UK tour in February 2016, I was determined to get some for January 2017 and was delighted when I managed to secure 2 great seats at the Birmingham Barclaycard Arena. It took some strategic planning with my Mum – well, I had to check she’d be in the country to look after G and M for the night! – but we got there in the end and I even managed to keep it a secret until the big reveal on Mike’s birthday in October. M was not so impressed with our planned night out, but Mike was as thrilled as I was and the time just flew past until we found ourselves taking an afternoon off from work and bombing down the motorway towards our final destination. We found a great place to stay – City Nites Serviced Apartments – within walking distance of the Arena that included a secure location to park the car and enjoyed a delicious dinner at Thai Edge before the show itself started.

We were hoping for a great night out and weren’t disappointed. The Jokers, also known as The Tenderloins comedy troupe, have been performing stand-up for years and their show was filled with a skillful mix of scripted jokes, some improv and the inevitable reveal of previously unseen clips from their successful TV show. I’ll be honest, a few long days and nights on UK tour had obviously taken their toll on all their voices and a heavy drinking session meant that one member of the group in particular was not as sharp as he usually is on-screen, but my favourites, Sal and Joe, were in fantastic form and made the night for me. Mike loved being at yet another live comedy show, having already enjoyed seeing Josh Widdicombe and Dave Gorman for previous birthday treats. It was a brilliant overnight break from the children and one that we both needed after the medical stresses that had stalked us at the end of last year.c2dvr6txeaan_op

Young Carers Awareness Day 2017

Today is Young Carers Awareness Day, a national day for the recognition of the estimated 700,000 Young Carers in the UK. I’ve written before about Young Carers and how G was finally recognised as one last year. She now regularly attends our local carers support group and has developed friendships with a couple of other girls who are in her year at her secondary school. Young Carers can care in a number of ways, the most obvious being giving physical help to family members, but, as we discovered with G, the emotional and psychological support given is just as important to recognise and can take just as big a toll on the young person. Organisations such as the Carers Trust, Barnados and Over The Wall all work to ensure that these young people are given the same opportunities as their friends and have time to be a child. This support is vital to ensure that G, her friends and others like them have as happy, healthy and balanced a childhood as they can.

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Top Chips!

You know you’re getting old when your Christmas presents start bordering on the practical, rather than the fantastical, and you know you’re a parent when those practical presents can be used to the benefit of your children rather than just for pampering yourself. I’ve been on the receiving end of the former for a fair few years now – welly boots and coffee machines spring to mind – but this year I received not one, but two of the latter, indicating that I really am well and truly heading towards a rather significant birthday celebration frighteningly soon.

Interestingly, whilst one was an item I’d requested myself, the second was actually a gift that M picked out for me, evidently in the hope that it would help me make some more interesting variations of his foods for him. Back in the summer, we attended the Allergy and Freefrom Show held over 3 days at the amazing venue that is Olympia Kensington for the first time in a couple of years. Whilst there we discovered the wonderful and tasty treat that is Emily’s Fruit Crisps, a great new snack which M almost instantly fell in love with and devoured so quickly that the dozen packs we bought at the show soon disappeared. img_13601I hadn’t got round to restocking the larder as M’s interest in the crisps appeared to wane and I didn’t want to fill my cupboards with yet another safe snack that would end up forming part of Mike’s packed lunch for months because M no longer wanted them.

However, the novelty of fruit crisps obviously hadn’t worn off as much as I thought it had and this was reflected in his choice of present. In the months leading up to the festive season, M spent hours, like most children his age, pouring over a variety of catalogues and gadget magazines searching for the perfect present that would tick all his boxes for what he could possibly want for Christmas and seeking a little added inspiration along the way for what he could buy for the rest of the family. With a little technical help from Mike which came, much to M’s disgust and dismay, in the days following Christmas day itself because somehow ordering my present had got swept up in the chaos of too many hospital appointments and health challenges to contend with, my present finally arrived at our address and M rushed off to check it out before handing it over, in all its unwrapped glory.

img_13551This week saw the first outing of this piece of kit as I finally got round to trying out my brand new kitchen gadget, the Mastrad Topchips Kit complete with a “slicer” to cut the fine slices needed to make the perfect crisps. We tried out both apple and pear with varying levels of success. The slicer was scarily sharp and I refused to let my somewhat clumsy child anywhere near it, rather preferring to take the chance of slicing my own finger and not his. The process is remarkably simple: peel the fruit, slice it, place single slices on to the rubber sheet and microwave for anywhere up to about 5 minutes, depending on the type of fruit or vegetable you decide to use. I did start with stacking both trays in the microwave as it suggested, but found it taking a long time to do…well to do anything, so instead started again using just 1 tray and allowing a little more time img_13591than suggested in the instructions booklet. The apple crisps worked well, though it would have been good to know that they aren’t immediately crispy when the cooking time is finished, but actually need a couple of minutes to stand and crisp up. Both children declared them as delicious and the plateful quickly cleared in front of my eyes. The pear was less successful as the one I used was evidently far too juicy to crisp up properly and we declared it an unmitigated disaster, although M conceded that it “…wasn’t bad for your first attempt Mummy..!” The trays are delightfully easy to clean and store, which is always an added bonus in my somewhat crowded kitchen.

Would I recommend the Topchips kit to others? Yes, I think I would, with the proviso to not be surprised if it takes a little practice to work out the fruit and vegetables that work best and the ideal cooking time in your individual microwave. Our first foray into making fruit crisps for M was a definite hit and I’ve no doubt that we’ll be using the equipment again, and soon.

Marks out of 10: 7.5 – a great result, but the instructions could be improved

Beating the Blues

Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

Giving something back

23567358210_2327dd548d_mAs we counted down the days to Christmas within the confines of GOSH last year, one of the seasonal highlights for both M and me was the carol-singers that we encountered during our stay. Hearing the gentle strains of familiar carols outside the main entrance, within the beautiful chapel and along the hospital corridors helped us feel a part of the excitement building in the outside world, even though M was ward-bound for so much of the time. I was fortunate enough to be able to go to the Carols by Candlelight service at St. George’s Holborn, a church just across the road from the hospital itself 23104290053_5ffd34741a_zand M, Mike and I had great fun another evening joining the choir from All Souls Church, Langham Place as they sang their way around GOSH, serenading patients with their cheerful Christmas singing.

Knowing how much those experiences lifted our spirits during a difficult and emotional time away from home, I leapt at an opportunity this year to give a little back. One of the choirs I sing with was invited to spend an afternoon singing carols and Christmas songs at a regional Children’s Hospice, whilst one of the local football teams delivered presents and spent time talking to current patients and their families. It had been an occasion that I’d been hoping to take part in last year, so as soon as I heard we were invited back this year, I knew that I just had to be a part of it if at all possible.

img_13021Yesterday was that day and what a truly magical experience it was. A small group of just 9 of us gathered and spent the afternoon singing carols and Christmas songs to the children and their families, who are so dependent on this Hospice to provide some precious moments of respite during the year. I took the opportunity during our visit to speak to staff members, parents and even some of the children themselves and gleaned just a small insight into how important this Hospice is to them all. There were no tears yesterday; just a celebration of the individuals gathered in those rooms and an opportunity to make memories that will last a lifetime. When favourite songs were requested, we gladly sang them to bring a little extra cheer to what was already an amazing party. I gently persuaded – ok, 15578155_10154311119488790_2228089488536286007_operhaps, more honestly, I coerced with a cheerful smile and a little Christmas spirit – some of the footballers to join us for a rousing rendition of “The Twelve Days of Christmas”, which ended with friends, family and staff also singing along and sharing in the joy of that moment.

We received thanks for our attendance again this year, but the truth is that we received from the experience far more than we gave. It was a huge honour to be able to be even a small part of a fantastic event and, for me, a real opportunity to give something back to families that are living through a reality that reminded me just how lucky our family truly is. Not everybody can sing; not everybody will be able to offer practical help, but if you can find a way to #givesomethingback this Christmas season and beyond, please do.

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Breaking the curse

Reaching today feels like something of a landmark moment. We’ve had our fingers crossed that we’d get to yesterday’s date without so much as a hiccup to stand in our way and we’ve not only reached it unscathed, but have surpassed it with no sign of looking back. Saturday was December 3rd and we were all feeling more than a little nervous about it. The date might not ring any bells with you, but in our household, hitting midnight on the 3rd at home felt like a huge achievement. For the last two years, that date has signalled the start of a hospital admission for M and we were desperate that history wouldn’t repeat itself for the 3rd year in a row. Of course, in both 2014 and 2015 we knew that the admissions were planned and it was just a case of waiting for a bed to be available for him, but nothing prepared us for the unlikely scene of déjà vu when the phone-call came summoning us to London once again, exactly one year to the day of the previous one.

There was no reason to think it would happen again, not least because there are no further admissions planned at GOSH and we had already told our local hospital that we wouldn’t even consider a December admission this year, but the fears of our “December 3rd curse” were there anyway. I’d like to say that the weekend passed without event, which is really what we would have preferred, but as ever in the 7Y2D household that isn’t quite the case. There have been unplanned hospital visits and unexpected procedures discussed for family members other than M over the last week, and the implications of those are still being mulled over as decisions have to be made and soon. However, most importantly, today is December 5th; M and G are at school, Mike and I are at work and that’s just the way it should be.

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Now we can start to enjoy Christmas!

UnSATisfactory Pressure

Since the introduction of the National Curriculum to UK education in 1989 and the creation of the Standard Attainment Tests (SATs) in 1991, everybody has had an opinion about them and few are afraid to make that opinion known. For 25 years, controversy has raged about the value of these tests and who, in fact, the tests are really testing – is it the children or the schools? The one thing that is not in any doubt is that these tests put our children under a huge amount of pressure to perform well, even when their skills perhaps lie in a different direction and little allowance is made for those who find formal testing an unbearable strain.

Even though it’s been 2 years since G was in Year 6, I can well remember the stresses and strains that the prospect of the year-end SATs put on her. Small, but telling signs of the pressure she felt were revealed through changes in her behaviour at home and her already shaky confidence in her literacy ability took a further battering as she struggled to understand what the tests were demanding of her. Her homework steadily increased to ensure that all maths and literacy elements were taught, revised and well-established by the time the tests themselves actually happened and she spent Saturday mornings working with my 29Mum, a retired Year 6 teacher, to fine-tune those skills that were proving a little elusive to my school-loving child. Her hard work and focus throughout the year stood her in good stead and we were all proud of her year-end results, most of all because they rebuilt her belief in herself. Despite that previous experience, I knew that M’s start in Year 6 would herald a very different set of experiences and that’s absolutely proved to be the case.

M has been expressing his worries about the SATs since well before he even reached Year 6. He loves reading and his imagination and vocabulary are impressive, but the ongoing struggles with his handwriting and spelling due to his dyspraxia and dyslexia have really knocked his confidence when it comes to his literacy skills. This September saw the very real manifestation of the stress and pressure he’s put himself under and pieces of homework and classwork alike have left him in tears. I realised just how bad things had got when I received an email from his class teacher expressing her concern about his wobbles in the classroom. She knows him well, having been the school SENCo since he started at this school in Year 3 and also his Year 4 teacher when he had his NG-tube, so she’s fully aware of his additional educational needs and personality quirks and felt that his response was completely unlike him.

We have been working hard with M to develop the basic knowledge that is missing due to the delay in getting a diagnosis for his learning needs and are seeing a slow, but steady improvement. He attends weekly lessons at our local Dyslexia centre and his teacher there is working on his phonic and spelling knowledge in particular. We have agreed with school that he will only learn the spellings set by the Dyslexia centre as there is a greater need to ensure he has a good base on which to build his literacy skills, than worrying about the finer nuances of prefixes and suffixes for the time being. M uses the Nessy computer program, which was developed to teach reading, writing and spelling skills through a series of fun store_icon_nessyreading-01and interactive games and challenges. He has access to this both at home and at the Dyslexia centre and will soon be able to use it during some of his intervention group sessions at school. I have also just invested in the Nessy Fingers course, which will teach him to touch-type, a skill we are all agreed will be of huge benefit to him, especially when he moves on to secondary school next September. The ability to make notes on a laptop or tablet will ease some of the angst he already feels about the workload he will face in Year 7 and we are hoping to investigate some dictation programs that will also make his life just that little bit easier.

During Year 4, M’s occupational therapist came into school and taught a series of lessons focused on improving his handwriting and teaching him how to form his letters correctly. He now has the most beautiful joined up handwriting and, whilst it may take a lot of time and effort to do, he shows great determination to produce a well-written, well-structured and well-spelled piece of work. Even better, M recently received a certificate at school recognising his hard work with the diary entries he had been asked to write and congratulating him on some great ideas and marvellous handwriting. He was so incredibly proud of being awarded that certificate and his confidence and self-belief soared as a result. All too often over the last few years, M has been praised for his courage in dealing with his EGID diagnosis, NG-tube and food allergies, so it was great to see him receive recognition for the hard work he’s been putting in to improving his handwriting over the last 12 months.

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Truth be told, at the end of the day it really doesn’t matter what M’s SATs results are. They will not be a reflection of the bright, brave, cheerful boy that he is or of the huge strides he’s already made from an educational standpoint. They won’t show his breadth of knowledge on random topics such as the Illuminati, or expound his theories on anything Star Wars or his opinions about Brexit and the American Presidential race. They will never reveal the medical and health hurdles he’s overcome since the day he was born. Rather they will be a single snapshot of the ability of my 11 year-old to perform under certain pressures on a given day in May and will have no bearing on the journey he will eventually embark on for the rest of his life. They really are an unnecessary and unsatisfactory pressure that M and his friends could do without.

Eyes on Diabetes

jdrf-t1dfootprint2016 has marked 2 significant milestones in my life, both of them linked by 1 common factor: Type 1 Diabetes. Back in February I celebrated my 39th birthday and my 30th diaversary, something I can never ignore as they fall on the same date, but this year has also marked 18 years of living with a complication of that disease, diabetic retinopathy. As a rebellious and angry teen, I never anticipated that the years of refusing to accept and manage the illness that set me apart from my peers would ultimately result in near complete loss of sight in my left eye. Of course I knew that the risks were there, but I didn’t fully understand that the problems could, and in my case would arise when I finally stepped up and took control once again, determined to make T1D only a bit player in the story of my life. I now have to live with a permanent reminder of just how damaging this illness can be.

For those who don’t know, diabetic retinopathy is caused when the fluctuations in blood glucose levels cause changes in the blood vessels in the retina. New blood vessels may grow on the retina to improve the blood supply there and in turn, these weaker vessels can swell and burst leading to a detached retina or, in some cases, complete loss of sight. If the symptoms of this complication are identified early enough, careful monitoring of the eye can help reduce the need for further treatment and the risks of the problem spreading further. stages-of-diabetic-retinopathyFor those with already well-developed retinopathy, laser eye treatment can be given to prevent those new vessels growing further and reduce the chance of new vessels growing too.

Regular diabetic eye screening should be done on an annual basis and can be carried out at your local optician as long as they have the facilities and expertise to do so.The screening tests are not invasive as they simply require photographs to be taken of the retina and a thorough examination of your eye. In my case, a regular eye examination at my opticians  picked up the signs of retinopathy in my left eye and I was immediately referred on to our local eye hospital for further assessment. What happened over the next few days is still shrouded in something of a blur as consultants were summoned, examinations carried out and advice sought from Diabetes UK as to what my next step should be. The laser treatment I needed to stop the progress of the rogue vessels was done and that really should be where my story ends with lessons learned and an altogether wiser individual moving forward into the exciting new challenges of career choices, married life and parenthood.

Unfortunately, I was not so lucky.

I had the misfortune of being treated by an over-zealous medic, who wanted to ensure that the retinopathy was stopped well and truly in its tracks and that no further intervention was required. Instead of treating the eye with the recommended number of burns, a huge amount more was administered leading to the partial detachment of my left retina and leaving me with less than 5% vision in my left eye. blurred-eyechartThe 18 years since that fateful day have been filled with twice yearly eye examinations at our local eye hospital, regular eye checks, cataract surgery, prism lenses to reduce double vision and the resulting headaches, and the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment. I am still able to drive, though my licence now has to be renewed every 3 years following a specific eye test to ensure that the loss of vision in my left eye won’t impact my ability to drive safely and I can still be independent in the things that I do. I have travelled, got married, had children and continue to build my career as an accountant and my eyesight hasn’t stopped me doing any of those things. My night vision is poor, my depth perception almost non-existent and my colour perception drives the rest of the family mad, but I am fortunate that I can still see.

I am one of the lucky ones in so many ways.

Back in 1991, the International Diabetes Federation (IDF) and World Health Organisation (WHO) created World Diabetes Day as a global opportunity to raise awareness of both types of Diabetes, the reality of living with this disease and the escalating health risks resulting from these conditions. That’s why I’m pleased that this year’s World Diabetes Day (#WDD2016), celebrated today on Sir Frederick Banting’s birthday, has taken “Eyes on Diabetes” as its theme, focusing on two key areas:

  • The importance of screening for early diagnosis of Type 2 diabetes; and
  • The treatment needed to reduce the risk of serious complications.

Statistics suggest that at least 25% of those diagnosed with both types of diabetes will suffer from diabetic retinopathy in their life, with some sources quoting figures as high as 90% of those who have been living with it for 20 years or more. These are statistics that can be reduced and I truly believe that education is key in making that difference. What I hadn’t understood was that a rapid improvement in blood glucose levels can lead to a worsening of retinopathy and my approach to improving my control should have been to do so gradually to ensure that my body had time to adapt. There are always lessons to be learned from the experiences of others and I just hope that my story can add to that education process.

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From all angles

The last few months have been busy ones in all areas of our life, which I haven’t been shy in talking about, but the one aspect that I haven’t mentioned for quite some time is where we are health-wise with M’s EGID. You could view the reason for the radio silence as a good one – we haven’t really been making any significant progress and everyday continues to be a battle to see if we can reach and maintain some semblance of status quo for a decent length of time. I’ll be honest, since March things have been quite challenging as we have had little medical support and we have felt, at times, as if we’ve been cut loose and are paddling desperately to make some headway by ourselves. The reason for the missing input is that we are in the process of trying to build a shared care relationship between GOSH and our local hospital once again and at long last do appear to be making bmd6e7zcyaef7disome progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.

It may well come as something of a surprise that we are even considering transferring some of M’s gastro care back to our local given the  numerous problems we’ve had in the past, but this time we were encouraged by the fact that his new gastro consultant is a registrar that we got to know whilst at GOSH and someone we trust implicitly when it comes to M and his health. Dr W, who has invited us and M to be on a first-name basis with him, was instrumental in getting M admitted 2 years ago when we made the decision to move to elemental feeding and so is someone who knows something of M’s background and understands where we, as his parents, stand when it comes to treating this disease. We are also keen to gain some local support for M because, when crisis hits, it is very difficult to get any immediate care from GOSH due to the distance we live from the hospital and the inability to just pop along there for them to review his current state of health. There is a standing agreement that we can phone and discuss him with any one of his consultant’s team, but sometimes that isn’t enough to resolve the issue as quickly as we all need. supportDr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous admission and he understands that there is a trust issue between us and our local hospital that he and his team will need to work hard to re-establish – something that is so critical to M’s well-being.

With a little prodding, it didn’t take too long for Dr W to give me a call and then for an initial appointment to arrive on our doormat and Mike, M and I met with them in the middle of June. At this point, M’s broken leg had unleashed an unexpected level of havoc on his body and we were struggling to manage the ever-fluctuating bowel issues as well as his increasing reluctance to drink the E028 and huge disappointment that we couldn’t undertake any food trials whilst he was so unstable. The team was great, but it really was just a conversation about what we were looking for and what they felt they could do for us. A few interesting insights and suggestions about M’s diagnosis were thrown out, but there was no opportunity to ask questions about them and now, 3 months on, our reflections have left us wondering about what the next steps will be. What didn’t come as a surprise was the question mark over whether M is truly suffering from so many genuine food allergies or rather if there is an underlying problem with his gut and/or bowels which means that he is unable to tolerate so many foods at the moment. This has been a question that has been stumping his GOSH dietician too, who has freely admitted to finding M one of her most challenging patients ever and is hoping our local will provide a fresh pair of eyes when it comes to considering how best to treat him. Dr W also expressed a concern that 20150203_082342M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.

Just before our Portuguese holiday, I contacted our GOSH dietician to discuss with her the lack of progress we’ve been making with M and asking for her input as to what we should do next. The email reply I had came as something of a concern as she explained she was under the impression that all care had been moved to our local hospital and she was surprised that I was looking to have a further conversation with her. I fired off a considered response, copying in both the GOSH and local consultants, advising that whilst we had met with the local gastro team in June, we had heard absolutely nothing since and really needed some medical advice once September started, although somewhat ironically we have had our next GOSH appointment booked – September 2017! Thankfully the strong relationship we have built up with this dietician since M first went to GOSH 5 years ago meant that S was happy to step in and gave me a call just a few days into September. She was as concerned as I was about the lack of medical care being given to M at the moment and during that lengthy phone conversation, worked with me to put a plan into place for food trials over the next 4-6 weeks. She also offered to chase both Dr W and our GOSH consultant to find out what was happening regarding the transfer of M’s care and try and speed up the process to ensure that M is seen before November if at all possible. I’m not quite sure what strings she pulled, but within a week of speaking to S, Mike received a phone-call from Dr W to tell him that a plan had been agreed between the two hospitals and an appointment would soon be forthcoming. Delighted to hear that a plan would soon be put in place, Mike asked whether we could be privy to the discussion they had had, so that we too were on board with whatever next steps they were expecting to make. Another lengthy conversation later and at long last, we finally had some idea of how M’s care will be handled until the end of the year at least.

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The most critical aspect of looking after M right now is that no-one really understands what is going on with his body, his bowels and gut in particular, and there doesn’t appear to be any logical explanation why we seem to be stuck at just 5 safe foods. Add to that the added complications of the massive downturn in his health that happened as a result of his broken leg and the resulting failure to find ourselves in as good a position as we were a year ago, the medics all agree that they are more than a little stumped. So, rather than rush into more tests or a radically changed approach to his treatment, our local gastro team have booked monthly appointments for the next 3 months, where they will be assessing and observing him without getting too involved in the medical decisions. Obviously any problems that we do encounter during that time will be addressed, they won’t leave M to suffer unnecessarily, but they are leaving us to work with GOSH in terms of his food challenges and medicine tweaks. They have also recognised the need for psychological support, not just for M, but for the whole family and are proposing that we start with weekly appointments, split into fortnightly appointments for M and the alternate weeks for Mike and me. We have long argued that the diagnosis of his EGID has a huge psychological and emotional impact on M and have frequently seen the outpouring of that in the home environment. The added stress of his SATs this year is already showing at both home and at school and so I am hopeful that with these regular sessions in place and the support of us and his teacher, we will ensure he makes his way through Year 6 relatively unscathed. With this kind of all-encompassing care in place and the availability of local support for any admissions or longer term treatment changes that might be needed, the strain on the family will hopefully be reduced a little too, although it will obviously never fully disappear. We don’t know what the future holds for M and that is the most daunting thing we have to face as a family. What is encouraging is that there is already an open dialogue between some of the many people involved in M’s day-to-day care and our hope is that can only prove to be the best thing for him.

The many faces of friendship

Good friends have become a valuable commodity for our family over the years, something I have written about before and no doubt will write about again, but a few events over the last couple of months have made me realise yet again just how important these friendships are to us. In each case, the thoughtfulness of those friends turned what could easily have been difficult experiences into ones that were a little less stressful, something I always appreciate, but most of all at the moment as we deal with new school years, new medical teams and new jobs. Some of these are old friends, people I’ve known since my own school days who still play an important role in our lives, whilst others are those we’ve got to know as G and M build their own relationships with their classmates, but it doesn’t matter how long we’ve known them, they’ve been there to make a difference when it mattered.developing-friendship-machines-working-word-building-up-concept-construction-black-alphabetic-letters-forming-isolated-31326540

The first event was one of the most stressful I’ve had in a long time and even with this wonderful friend stepping in to help out, it was an experience I would have much preferred to do without. My Mum was away enjoying the wonders of Russia, Mike’s parents had flown home to Canada and Mike was back at his work, which is over an hour away from home even when the trains are running in his favour. For once I hadn’t left leaving work to pick up the children from school to the last possible minute and everything seemed to be under control, so naturally that was the point when everything suddenly went horribly wrong. My car wouldn’t start. Not only would it not start, but even with the engine turned off, the electrics seemed to have a mind of their own and the ignition refused to release my key. Even on the best of days this wouldn’t have been a good thing, but poor G had already had to disappear to the school library for an extra hour after school and I was now left with the dilemma of how to get home and get both kids without a car. Thank goodness for a good friend in our village, in the shape of the Mum of one of G’s friends, who kindly agreed to pick up M from his school, send her daughter to rescue G from their school and hold on to them both until either Mike or I was able to take them home. Her calm acceptance of the situation worked wonders on my frazzled nerves – I had by this point already phoned Mike in tears to tell him that not only had my car broken down, but that I was close to breaking down too – and reassured me that there was no need to panic as all I needed to do was get myself safely home. A couple of hours later I’d been rescued by our local garage and I rescued this friend from having to put up with my excitable duo for too much longer. It probably didn’t seem like much to her, I know it’s something I’ve more than willingly done for other Mums in the past, but it really did make a car-wont-start-186299740-e1431698432132bad situation a whole lot better and helped dampen my panic down to just concerns about how exactly we would manage without a car at all, given we’ve become a 1 car family over the last 6 months (and yes, I can be something of a “glass half empty” person at times and this was definitely one of them). Fortunately, the problem was nothing more than a flat battery and within 24 hours, it had been replaced and normal service had been resumed.

Fast forward a few days to when one of M’s friends brought a smile to his face with a small gesture that made the world of difference to my currently very sensitive lad. As I’ve mentioned recently, M has a well-stocked swap box in the classroom to ensure that he never has to miss out when his classmates bring sweets or treats into school to celebrate their birthdays. M has
become accustomed to swapping out the sweets for a non-edible treat of his choice, but I know that he misses the days when he used to be able to join in just like his friends and could eat a far wider range of foods. He had already brought home a number of Hero Attack trading cards for other birthdays, but I was met at the gate last week by a small boy hqdefaultwith the biggest smile on his face. This good friend and his thoughtful Mum had remembered that M can safely eat Foxes Glacier mints and so had taken a handful of those in for M, whilst the rest of the class enjoyed another brand of sweets. M was thrilled about being treated just like everyone else, his teacher was pleasantly surprised by this thoughtfulness and I was touched by this small step to include him in the thrill of the celebration.

Finally, we come to a recent Sunday afternoon spent with old friends and their family enjoying the chance to chat, play and share a meal. This is a friendship that has lasted over 25 years and which made them an obvious choice when we were choosing G’s godparents nearly 13 years ago. We arrived early afternoon allowing the children plenty of time to hang out and play together, whilst the adults enjoyed some much-needed catching up of their own. We talked about recent job changes, secondary school decisions and summer holidays as well as the ongoing saga of M’s health and hospital care; and before we knew it, dinner time had arrived. To our surprise, and M’s absolute delight, this wonderful couple had decided to cook a dinner that was completely M-friendly for us all and so we sat down to enjoy chicken kebabs, chicken goujons, rice, cucumber and some delicious applesauce together. friends-meal-jpgM felt a part of the proceedings in a way that was fantastic to see and when pudding arrived on the table – a safe baked rice pudding with more lashings of the applesauce – he was beyond ecstatic. That simple show of solidarity with our boy was amazing to see and whilst they didn’t think twice about doing it, was a thoughtful gesture that made an impact on us all. M didn’t feel that he was missing out on anything the others was eating and it perhaps gave them a small insight into what he lives with everyday.

As you can see, friendship has many faces and each of them, in their own particular way, makes a difference. I don’t think any one of those individuals thought they were doing anything out of the ordinary or extreme, but without those gestures our life would be far more challenging and a lot less fulfilling and colourful than it is.