Tag Archives: planning

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.

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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.

But that wasn’t part of the plan

Without doubt, December whirled past in something of a blur. As I’ve already posted, we had been waiting for an admission to GOSH since last July and naturally it came when we were least expecting it. This admission had been planned by M’s dedicated dietician, who was hugely concerned by the continuing lack of progress we were making when it came to successfully reintroducing food back into his diet and she was keen to challenge him within the hospital setting so that they could see exactly what we were experiencing at home. Our initial discussions all those months ago were in terms of weeks: a lengthy admission, perhaps up to 6 weeks, to fully understand how M’s bowel and bplanody respond when food is eaten; a daunting prospect when you have another child to love and nurture at home as well as a job to hold down.

Move forward 3 months and we reached our October outpatients appointment with no admission in sight and, due to the lack of long-term gastro beds at GOSH, no clear indication of when that elusive bed might eventually become available. Cue the recommendation of a radical rethink and a change of plan to a one week admission, followed by a series of further 1-week stays, scattered here and there throughout the year as and when there was a bed. The gastro team, keen to get him in before Christmas, felt this was our best chance of getting a bed any time soon and so we rolled with the punches and agreed to this amended plan, still not quite clear as to when the admission would actually happen. Over the following weeks, I spent valuable time fine-tuning the details with M’s dietician, agreeing what foods we would choose for challenges during our stay and discussing what the medical team were hoping to achieve through this process. The hardest part remained the lack of a long-term plan. The truth is that M’s continued problems with so many of the foods we’ve tried to introduce is baffling his doctors and until this admission was under our belt, they just didn’t know in which direction we’d be heading next.

By the time M was admitted on December 3rd, the plan had been tweaked again and unsurprisingly would continue to be so during the length of our stay. That one week admission suddenly became a 2-week stay and the 2 foods we had agreed to trial: potato and sweet potato, suddenly became 4: potato, egg, banana and salmon. I had already expressed some concerns about the plan to challenge him with 2 foods in a week and the increase to 4 over a 10-day period was now ringing some serious alarm bells in my head. Mike and I knew full well that the chances were that I would be bringing home a less-than-stable M just in time for Christmas and were resigned to rolling our sleeves up and spending the holidaysSmall-Changes working hard to bring him back to a healthy position ready for the new school term. We weren’t happy about this situation, but felt there was really no alternative; we had to give their plan a try in order to find some answers.

Despite those misgivings, the ones I had fully voiced to everyone and anyone who would listen from the minute I first met with M’s consultant and dietician when we arrived at GOSH and that I continued to express through every step of the following 10 harrowing days, we set off on this plan with the hope that we would find another safe food for him and perhaps even start to understand what has been troubling his gut for so many years.

What wasn’t part of the plan was the continued reluctance of the medical teams in hospital to listen when I told them M was beginning to show signs that all was not well with the food challenges and that he was reacting to the foods;

the plan didn’t anticipate the reality of M’s bowel being so unable to cope that it refused to work properly by the time we were 10 days into the 2-week admission;

and it definitely didn’t include 10 litres of Klean-prep (the worst bowel prep known to man) being continuously pumped into his tiny body over a 6-day period in an attempt to clear the resulting chronic impaction.

Nowhere in the master plan had I seen fair warning that, by day 14, I would be rendered utterly helpless and only able to sit, holding his hand and massaging his aching limbs, as M was left bent double from the cramps that were consistently hitting an 11 on the pain scale, where 10 was classed as the worst pain imaginable.

dancing-in-rain

Somehow we limped through endless hours of pain and frustration and dashed hopes, and we survived. Somehow we talked and ranted and sobbed and challenged until finally the medics acknowledged that things had gone horribly wrong, and we survived. Somehow we managed to stand strong and stay strong and stand our ground and refused to compromise on what we knew was in M’s best interest, and we survived. Somehow we rode out the fiercest storms and learned to dance in the rain, and we survived. Somehow we found enough humour in each day to keep the smiles on our faces and to laugh the smallest of giggles, and we survived. Somehow we got through the unexpected and started to find our way back to our normality, and we survived.

But that wasn’t part of the plan.

Virgin Fantastic!

The time had finally come and the night before we flew, I sent tweets to both Virgin Holidays and Virgin Atlantic to issue my challenge to meet my holiday expectations and both accepted it immediately.

First up was Virgin Holidays and their Gatwick V-room.  As I wrote back at the end of July, I had been promised a supply of rice milk for M as well as some suitable options for his breakfast and I was keen to see just what would be waiting when we got there.  Upon arrival, we met the fantastic Dominic, who knew all about M and our request for rice milk.  As soon as we found a table for breakfast, he brought the milk over and then spent some time discussing all of M’s allergies and what food they had on offer that might suit him.  I was impressed to learn that they stock B-free bread and although it contains egg and therefore isn’t suitable for M,  G snapped up the opportunity to have 2 slices of toast as part of her breakfast.  Both children also had some cereal with the rice milk and there was fresh fruit and smoothies available for them too.  I was hugely impressed with Dominic’s attitude throughout our time there and at no point felt that we were an inconvenience to any of the V-room staff.  Even better, we were able to take the remainder of the carton onto our flight with us, which meant we could go on our holiday knowing M had a limited supply of safe milk to hand.

It was then on to our plane and it all started well.  The check-in staff had confirmed that the special request meal had been noted on our booking and the cabin crew provided us with a ready supply of ice to keep the cool-bag of medicines cold for the 9+hours we’d be in the air.  I was equally impressed that they offered to place our ice packs in their on-board freezer to ensure that we could keep everything cool until we reached our final destination in Orlando.  Eventually it was time for the meal and here we hit our first rocky point. oops I had requested a gluten-free meal for G which quickly turned up, but there was no sign of the requested meal for M.  The cabin crew searched high and low for it, but couldn’t find it and we were left with the option of whatever fruit they could get their hands on plus the snacks I had packed to keep M’s appetite filled.  Just as I was mentally drafting a letter of complaint to Virgin Atlantic expressing my disappointment at being let down in such dramatic fashion, our air stewardess hurried up with a tray of food and an apology on her lips.  The confusion had arisen for 2 reasons: 1) the meal had been prepared with G’s name on it rather than M’s and 2) it had been assigned to the seat number of another passenger who had also requested a special meal and the names had not been cross-checked to make sure everything was right.

Disaster was averted, but only just.  The meal prepared was exactly what I had asked for – plain grilled chicken with rice and vegetables and a fantastic fresh fruit salad for dessert – and M tucked in with gusto.  We were lucky that the other passenger had not started eating the meal before the mistake was identified and I’m glad to say that our return flight was not plagued with the same problem, although it still appeared that G had 2 meals (both the gluten-free and special request meals being assigned to her name), whilst M had none!  I hadn’t considered that a smaller snack would also be provided on the flight and was delighted Virgin Atlantic had thought further ahead than I had and provided another delicous fresh fruit platter for M to enjoy safely.

Gold stars all round!

Gold stars all round!

I have been really impressed with how well both branches of the Virgin family accommodated our needs and requests on the flights and wouldn’t hesitate to recommend them to anyone going on holiday with special medical needs.  We didn’t run into any unexpected problems with our travel arrangements and I will definitely consider travelling with them again.

 

 

 

122 days and counting….

christmascountdown…til Christmas that is.  No, I’ve not gone completely mad, nor have I forgotten that I need to give a comprehensive update about our summer travels, but when you have an allergy-suffering child, you need to grab the opportunity to buy friendly treats when it arises and Christmas is no exception. So, when an email from the fantastic Freefromforkids dropped into my inbox this morning, prompting me to peruse their Christmas range and place my order before stocks run out, I knew I needed to share it with all of you.

I’ve talked about the amazing Moofree chocolate before and was thrilled to discover their dairy- and soya-free chocolate advent calendars a couple of years ago, although they become increasingly scarce the closer to December you get. moo-free-selection-box-hi-res This year I was excited to read about their introduction of allergy-friendly chocolate selection boxes, a treat enjoyed by so many children and which G and M have never been able to experience. Moo-free have brought out new flavours of their chocolate this year, all of which are included in the selection and which I’m sure both G and M will be delighted to try.

If selections boxes are not your thing,  then Moo-free also offer a range of chocolate bars paired with either a festive themed soft toy or mug. Or you can avoid chocolate altogether and choose Haribos, Goody good stuff sweets or Jelly Bean Factory tubes as they are all great alternatives. Whatever you decide on, check the ingredients to make sure they’re still safe for your child – no-one wants an unexpected flare during Christmas – get your order placed in plenty of time and enjoy the end of the summer before the Christmas mayhem starts!

end of summer

 

Last minute checks

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

With the countdown started and just days to go, it’s all come down to those last minute checks and the final packing for our holidays.  I am the queen of lists when it comes to going on holiday, especially when travelling with M and G and this year was no exception, though I have to confess that four pages of lists is a whole new record! The clothes were quickly sorted and I got to my main challenge: the suitcase of M-friendly foods and all his medicines.

My biggest concern was ensuring we have enough safe snacks with us for at least a few days as I’m not certain about what will be easily available once we get to the “House of the Mouse”.  I don’t want to over-cater as I have no intention of bringing a suitcase of food back home with us, but I did need to be reassured that M would have enough to eat.  I spoke to our lovely GOSH dietitian to seek her advice about the availability of free-from foods in the USA and she advised consulting the UK Coeliac Society website as a starting point as to where we might be able to buy them.

onlineshopI also did some on-line research and discovered that an option I hadn’t even considered might be a great place to start – an on-line grocery shop.  This is still a fairly new phenomenon in North America as I know from our Canadian family and friends, but I found that I could arrange for a food order to be delivered directly to our hotel on the day of our arrival,  which would instantly reduce the need for Mike and me to find a supermarket straight away.  I investigated a couple of options and settled on the Garden Grocer delivery service. This is not affiliated to one particular supermarket chain and for a little extra cost, they will visit more than one shop to find everything you need.

The website is not as slick as the ones I’m used to using at home – I am a big advocate of on-line grocery shopping as it saves so much time – but I have been able to find most things I think we’ll need whilst away.  There was a much better selection of M-friendly cookies and cereal bars than in the UK and at a much better price too.  As I’ve said before,  it’s hard to be both frugal and allergy-friendly in the UK.  Shop done and delivery slot booked, all I can do now is sit back and wait with my fingers tightly crossed.