Tag Archives: activities

Camp in the Cloud – 7Y2D COVID-19 Diaries Week 20

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Since their first camps in 2016, G and M have looked forward to the start of every year to find out if they have got a place at their choice of Over The Wall camps. The initial outcome of this year’s applications saw both children on the waiting lists for their respective choices and, in M’s case in particular, with fingers tightly crossed that they might be lucky enough to make it to the actual camp when the time came about.

Like so many other activities, the coronavirus pandemic understandably shut down the Over The Wall camps this year, something that we all understood although it did leave the children somewhat disappointed. However, no sooner had we been advised that camp wouldn’t be happening this year, than an email was sent telling us that they were looking into a virtual alternative and to keep an eye out for future updates to be sent. It didn’t take long for the final details to reach me and both children eagerly signed up to the first ever Camp in the Cloud.

M was first up with the online South Health Challenges Camp and about 2 weeks before the start of camp his Camp in the Cloud box arrived on our doorstep. He did a grand reveal and shared opening his box with my Mum and Aunt over Face Time on the Saturday afternoon. Hidden inside was a padlocked box, sealed envelopes labelled for each day, face paints, a stationery set and, most importantly, his team t-shirt revealing he’s risen to the heady heights of being a green boy. The box also included a pot of M-friendly hot chocolate for cabin chat. The note on the container reminded him he could make it with the dairy-free milk alternative of his choice – a small thing that showed just how much OTW focuses on the finer details for each and every camper in their care. They also followed that up with an email just before camp began to remind me to check the ingredients to make sure I was confident that it was safe for M to drink.

The week of Camp in the Cloud came at a perfect time for M. It was a good start to his so-say summer holidays and proved to be a great distraction from the sad news of losing Grandpa the weekend before. The daily challenges gave him a focused activity to try his hand at and he loved being able to explore the virtual campsite, searching for the hidden Newman’s sauce bottles and participating in all his favourite camp activities in one way or another. The highlight of each day was most definitely the camp chat via Zoom, which gave him around 45 minutes to meet his team mates, accept, or set, team challenges and just chat in a face-to-face context, something he hasn’t really been able to do since lockdown began.

I was intrigued to see what M’s response to the week would be and it couldn’t have been more positive. Whilst he commented that it obviously wasn’t as good as going to camp itself, he loved being part of it and having something different to do after so many weeks of the same old, same old. Being able to dip in and out of the online platform during the day worked perfectly for my usually active child and the evening cabin chats really made it feel like camp. M was so impressed with the camp that he even contacted OTW himself to suggest that Camp in the Cloud is something they could continue to do in the future. He loves going to camp and always feels the bitter disappointment when he isn’t successful in getting a place. M believes that being able to offer Camp in the Cloud to those children who aren’t able to go the physical camp would be a great alternative and would reach out to offer the fantastic OTW experience to even more campers than they usually can. Whether they consider doing that, we simply don’t know, but anything we can do to help make it a reality we will.

Now we’re onto the countdown for G’s Midlands siblings camp at the end of the month – and she just can’t wait!

An Enriching Experience

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June always seems to be a busy month for G and M and this year has been no exception to that unwritten rule. As well as the hell that was the lead up to G’s Year 10 mock exams – the exams themselves have proved to be not quite as stressful as we all feared they might be – there’s also been the much more enjoyable enrichment week for M and G’s work experience week too. Add in Live Lounge performances at school, end of year performances with their performing arts schools, we’ve finally found ourselves at the end of June and it’s time to take a deep breath, enjoy the last few weeks of school (if that’s even possible) and look forward to the summer holidays.

Last year, M was part of the school-based activities week as he wasn’t in a position to be able to consider being away from home from a health perspective and this year was no different, although the school makes the decision that all Year 8 students remain on-site, rather than being offered residential trips. After much deliberation, he was fortunate enough to be awarded a place on his first choice activity: the photography course. M really enjoys taking photos and has captured some really stunning snaps using just his phone’s camera at home. This was an opportunity to learn much more about the craft of photography itself and he spent 4 days learning about shutter speeds, taking action shots, images through water – lots and lots and lots of water! – and using light to write and capture words. He loved every moment of the course and has already decided to start saving up his pocket money so that he can buy his own camera as soon as he practically can.

The Friday was spent on a different activity and much to our surprise, he opted for paint-balling, something that has left him battered and bruised in the past. In fact, M hasn’t been paint-balling since he was hit accidentally by an adult using a high-powered weapon in the wrong part of the course at a friend’s birthday party. Whilst he wasn’t injured particularly and bounced back very quickly, the experience rattled most of the people there as M had his feeding-tube at the time and he was sore for a few days afterwards. However, the prospect of running around with a group of his friends and their plan to gang up on some of the teachers seemed to excite him and he couldn’t wait to go on the Friday even despite the rain. It was another fun-filled day and he enjoyed it all, even if he did come home sporting a rather impressive bruise to his right thigh by the end of it.

Whilst M had a week of enriching and engaging activities, G meanwhile found herself completing her work experience week. Back at the start of the school year, we had gone through a number of possible posts for her to consider and apply to for the week, but in the end she decided to spend the time working at the surveying firm as Mike. She spent her week learning how to carry out and complete property valuations, building surveys and home-buyers reports as well as the more mundane office and administration tasks that all good work placement employers expect: photocopying and shredding! Her Friday saw her spending the day at a building site and finding out about project management and property insurance claims. G very much enjoyed her week, though her diary entry for the Wednesday perhaps sums it up best – when asked “What have you learned about work this week?“, her honest response was “That it’s exhausting!“

Quiet week…?

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I wish!

I thought this week would be quiet as G is away at pony camp for her school’s enrichment week and M is busy doing “activity adventures” for his. I thought that would give me a week to catch up on writing some blog posts, finish the tales of our trip to Scotland over Easter and sort and store the photos from that said-same trip.

And then work just exploded and deadlines needed to be met – and still do to be fair – and life carried on with little consideration for my plans for the week.

Ah well, maybe that quiet week is just around the next corner?

Countdown to Cornwall

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This time last year I had holiday-planned to within an inch of my life and had experienced amazing support from the folks at Virgin Atlantic. We had arrived at Disneyworld Florida, were impressed by the positive approach to M’s restricted diet shown by all and were loving our days in the sun. It really was a trip of a lifetime and we’ve all been reminiscing a lot about where we were and what we were doing this time last year.

Our plans this year have been much less grandiose and much closer to home. When we first started thinking about our summer holiday plans back in November, all we knew was that M was going to be going elemental sometime soon and would have a NG-tube in place. We didn’t know if it would still be there by the time this summer rolled around and had no idea what he’d be able to eat or how we’d all be coping with the change. We toyed with the idea of a holiday in Portugal, a favourite destination of us all, but just weren’t sure how confident we would be if we needed to travel abroad with a tube in place.  20150812_172857Of course, with the benefit of hindsight and nearly 9 months experience, I am sure we would have coped just fine, but the uncertainty of all we’d be dealing with meant that instead we opted for staying in the UK and so we are now on our countdown to Cornwall.

Our front hallway currently resembles a storage facility as I pull out ready for packing, not just clothes and beach essentials, but safe food supplies for both G and M and, of course, everything we’ll need for M’s tube feeds. We have each chosen a day-trip we’d like to do whilst we’re there as well as researching the beaches surrounding Fowey, our base for the week. Mike has spent time looking at various “wet-weather” options as there’s no guarantee of sun in the UK, even in August, and we have been able to pencil in a day with G’s godmother, Godmama C and her lovely family as they will be holidaying there too. We might be staying in a self-catering apartment, but we’re also hoping to venture out to eat and my time has been spent trawling the internet looking for allergy-friendly restaurants and emailing to find out whether they will be able to accommodate M’s current food needs. cornwall-mapThe great news is that a couple have already replied to tell me that they are up for the challenge and I can’t wait to try them out and share our reviews of just how well they did for both M and G with you all. Even better, thanks to timely posts from fellow bloggers such as The Intolerant Gourmand and dedicated websites like Can I eat there?, I’ve been given some great top tips for making this a holiday to remember.

 

And so the holidays begin

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We’re nearing the end of the first week of the summer holidays and what a busy week it has been:

G has been taking part in the Explore week arranged by her new secondary school, which allows the current Year 6s and 7s to meet each other, build some new friendships and orientate themselves around the school. 20140523_000817She has had lots of fun learning more about CSI techniques, photography and archery, with pottery, media and innovation and a Mini-Olympics still to come. I suspect G would be hard pressed to name her favourite, but the cookery session got a huge thumbs up from me. I had warned her in advance that, as I had no idea what they would be cooking, it would most probably be a case of preparing the food, but not being able to taste it herself. However, the amazing staff had made note of her allergies and provided gluten-free flour and a dairy-free alternative to the margarine for the cupcakes as well as gluten-free pasta for the pasta sauce they made. I needn’t have worried and couldn’t have asked for anything more.

cache_2460432896Whilst G has been engrossed in the numerous activities at school, M has been equally busy at the week-long holiday club organised by our church. Every year for the last 20+ years. around 250 children from our community have attended this holiday club, which is supported and run by our church. They take part in a whole range of activities from puppet-making to electronics, go out on a day trip and are entertained daily with songs and skits based cleverly on a set of themed Bible stories. M and G have been attending the club for a few years and M couldn’t wait to go along again this year. It’s been a different year for him with G choosing to do something else, but he’s loved every moment so far and can’t wait for the rest of the week.

Mike has had the week off work to support M and be one of the very many volunteers helping lead the groups and look after the children at the holiday club. Having survived the day’s activities, it has been a case of coming home for a quick tea before heading off with G to be a leader at the church’s youth club equivalent of the daytime holiday club, which runs every evening of this week. So far, he has splashed in the open air pool, had a cake built from raw ingredients on his head and indulged in a lengthy water fight. As for me, well, it’s been business as usual and after doing the “school-run” with G each morning, I’ve headed into my office to do a full day’s work. My evenings have been a little quieter than normal as once dinner is out of the way for us all it’s been just M and me to enjoy some time together before bed. All in all, a great start to the rest of our summer.

Year 6 camp – the final verdict

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Last week was a quiet week in our household as G was away at camp and M struggled without his big sister around.  With only one child under my feet, it’s undeniable that the everyday tasks were a little…ok,  a lot easier to achieve in a reasonable time scale and there was a noticeable lack of temper-driven disagreements and raised voices, but there was no mistaking the achingly big G-shaped hole in our family that nothing else could fill.

By bedtime on Monday, we had finally tracked down and ticked off the last remaining items on the list, the bag of food and snacks had been delivered to the safe-keeping of Miss K and I was certain that clothes were named…bags were named…in fact, water bottles, plastic mugs, wash-kits, you name it, everything was named and the all-important, precious piece of her blanket was safely tucked away amongst her things. DSC_0015 G was feeling happier as she now knew she was in the same activity group as one of her best friends and was equally delighted about the teacher who’d be looking after them for the week.  We convinced them into a relatively early night as Tuesday was an early start for us all in order to get to school for 8am, and even M managed to pull himself from his pit and eat some breakfast before we headed on our way.  Those last few moments before G boarded the coach and left for her week at camp were emotionally charged as M stood beside her, with his arms wrapped tightly around her waist and just hugged her quietly, barely admitting to himself, let alone to the rest of us, what was glaringly obvious to see – that he was really going to miss her whilst she was away.  He was by my side as we waved them off and then disappeared into the school playground with his friends, ready for the day ahead.

News took a little time to trickle back to those of us waiting at home to hear what our adventurers were up to, but when the reports finally arrived, everything sounded positive. The kids were having a marvellous time and challenging themselves with lots of new experiences. From clambering over and under logs to wading through deep mud, the activity week was everything they expected it to be.  campTo my delight, G tried her hand at everything, even the dreaded caving and whilst she didn’t venture as far as some of the others, I am thrilled that she conquered her fears and made her way through 2 of the 3 caves they explored, an amazing achievement for someone who had been adamant she wasn’t stepping foot into a cave, no matter what. She enjoyed almost everything they did and was quick to regale us with tales from the week. Her favourite activity was the Woodland Scramble, which involved donning a wetsuit and rolling head-first into a Welsh river as well as dunking her head under a waterfall. Their evenings were filled with headland walks, evenings on the beach, BBQs and a disco before the obligatory mug of hot chocolate and a good night’s sleep.

The week was a resounding success from an activity point-of-view and G chattered for hours once she was home about all she’d done.  Sadly though, it didn’t quite meet my expectations on the food front.  Despite providing a bag full of safe foods to get G through the week, it was returned to me on Friday with very little missing from it.  I gently quizzed her about what she had eaten and was disappointed to learn that whilst the dairy-free aspect of her diet has been well-managed, there were some significant failings from a gluten-free point of view.  G had been assured that the Kelloggs cereal was definitely GF (it’s not), had been given crisps that were covered with “May contains” and her hot chocolate was soya milk laden with cocoa powder and very little sugar to sweeten it: a taste so bitter that she struggled to drink it and after her friends had tentatively taken a sip, they understood why she was so reluctant.  There was a definite lack of inspiration in preparing her meals as GF pasta with tomato and basil sauce appeared to be the go-to alternative for any meal that wasn’t G-friendly and her only dessert was from the snack box I had sent along with her.  11027998_10152859810801123_7685022031085613332_oFortunately for all concerned, G doesn’t suffer extreme reactions to either gluten or dairy, but she was left feeling less than 100% by the time she got home and not just because of the lack of sleep.

In contrast, the only thing of note that happened in our household last week was a complete overhaul of G’s bedroom and whilst there’s still a little more work to do, it’s a room to last her through her teenage years.  And so the week ended as it had begun:  with M and I waiting on the grass bank outside the school for the coach to appear and deliver G back into our arms.

 

Home or away?

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IMG_0746With a trip to London for M’s GOSH appointment an unavoidable part of the Easter holidays, we decided to make the best of it and spend a few days there on our very own mini city-break.  In preparation we spent one Sunday afternoon leafing through the pages of Mike’s “501 Days Out” book, looking for inspiration for what we could do during our stay and  G and M quickly filled a sheet of A4 with their suggestions.  It was left to Mike and me to make the final cut and hone our plans and, despite desperate requests for Legoland Windsor and Chessington World of Adventures, we decided to stick to those attractions within a reasonable distance of where we’d be staying and drew up a list that felt exhausting just looking at it.

where_to_stayThis epic event was our first overnight stay away from home since M had his tube back in December and I drew up thousands…hundreds…well one very long list of everything I needed to do in preparation.  My first job, once our trains were booked, was to find somewhere to stay that would meet all of our requirements.  Usually we choose to stay in one of the Premier Inn hotels on the south-side of the Thames, be it near the London Eye or closer to Southwark Cathedral and find them a great base for walking, or using the underground, to almost anywhere we’re intending to visit.  Unfortunately, leaving the actual booking to a little late in the day meant that none of our usual suspects of hotels was available for the 3 nights we were planning to stay and instead I had to search for a suitable alternative.  Whilst browsing frantically looking for a room at the….an….any inn, I came across the option of a serviced apartment and things suddenly started to fall into place.

We chose a one-bed apartment in East Aldgate, not too far from the Tower of London and easy walking distance from the nearest tube station.  The benefits seemed huge:

  • with a separate bedroom and pull-out bed in the living area, G would be able to go to sleep at a reasonable time, whilst M played his usual night-owl games
  • there would be plenty of space to store all of M’s medical gear as well as the supply of safe foods for both him and G that we would take with us
  • having a kitchen meant we could easily prepare M’s feeds, make packed lunches and even cook dinner, thereby covering every possible meal-time option we might face
  • it also meant we would have a fridge to keep cooked meats, cheese for G and M’s feeds in overnight without the need to request one beforehand and then keeping our fingers crossed it would be available when we checked in
  • finally, we would have a quiet place to retreat to when things got too much or the children needed some down time in the middle of the day

So it was an easy decision to get that apartment booked.  The days flew past until finally I had no choice but to tackle the task of packing for our trip.  By the time I had everything I needed for M in the case, plus our supply of safe foods for both G and M, I was beginning to wonder whether I’d have room for any of the clothes the 4 of us would need for 4 days in London.  With some canny packing and careful choices about exactly what was necessary, I just about squeezed everything in and we were ready for our next big adventure.

Big Bang Science Fair

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

M getting hands on with one of the exhibits

M getting hands on with one of the exhibits

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

G working hard to power the lightbulbs

G working hard to power the lightbulbs

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

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

Photographic evidence

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

How to survive a hospital stay – the Parents Edition

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Courtesy of yoast.com

Courtesy of yoast.com

When M was admitted to GOSH for a week for repeat scopes back in October 2013, I turned to the wonderful support network that is FABED and asked for some tips on the essential things I needed to take to get us both through that week.  The resulting list was my parent’s survival guide, a resource I found myself turning to once again before our most recent admission.  However, the one area I didn’t cover in that survival guide was what I did to get through those endless hours, especially when M was otherwise entertained or busy at hospital school and my lovely friend, F pinged me an email all the way from Canada to make this very point.  She had her own set of questions about what I’d got up to whilst M was in GOSH, telling me what I’d missed from my previous posts and I thought I’d share with you all my curiosity-satisfying answers.

Where did you sleep? – I do so hope you didn’t need a hotel

7176037017_45f555b6cc_zNo, no hotel for me, though actually there were times when a hotel room would have been invaluable.  I slept next to M’s bed in a modern version of a medieval torture device: a chair that supposedly converted to a bed, though I think sleeping on a mattress on the floor, or even just the bare floor itself, might have been more comfortable.  There were definitely some mornings when I would have killed for a good night’s sleep or the opportunity for a long soak in a hot bath, but sleeping in “the bay” with 3 other patients including 1 baby meant that my nights were often disturbed.  M’s cubicle contained 1 of the 2 sinks for the 4 beds, which meant that one notable night, I had doctors, nurses and parents trooping through past M’s bed in a steady stream during the early hours as they needed to wash or sanitise hands and access sterile gloves.

The long-term gastro ward is shockingly out-dated and the facilities don’t meet the needs of the patients or their parents.  Unbelievably there is just one bathroom for 16 beds and only 2 other toilet cubicles, so you were constantly having to keep an eye on the bathroom to make sure you could dash in there before it was in use again.  Given this was the location of the height chart too, you can imagine just how in demand that single room was.

What did you eat when you were there? (I can only imagine this expense adding up if you were buying all your own meals)

Courtesy of mirror.co.uk

Courtesy of mirror.co.uk

The expense certainly did add up as I had to provide all food and drink for myself during the admission.  The small kitchen had a fridge which parents were able to keep food in, but I often found myself heading out each day to get some fresh air as well as my meals for the day.  There was also a microwave and crockery and cutlery, so that did make having a hot meal a little easier.  I kept some bread and crackers for breakfast and then would go out to buy sandwiches, ready meals or other snacks for the rest of the day.  There are several supermarkets in the vicinity, so there was reasonable choice, though the largest shop is a Waitrose, which definitely didn’t help with the cost.

I didn’t really eat out too much, though I took G out for meals whilst she and Mike visited and I treated myself to the odd coffee or hot chocolate mid-morning from one of the nearby coffee shops.  I also had a really lovely dinner out with one of my fellow Mums on the ward.  We headed across the road from the hospital to a small Italian restaurant and enjoyed some delicious food, great conversation and a small glass of wine each, whilst the boys were under the watchful care of the nurses!

How did you pass time? – Surely M didn’t need you every second of the day?

The first few days M was reluctant to let me out of his sight for long, especially when he was struggling to cope with the effects of the bowel prep on his system.  He understood that I needed to go out and get something to eat so that I didn’t make myself ill, but I would bring the food back onto the ward to eat at his bedside.  He didn’t necessarily engage with me for most of that time, preferring to be plugged into the TV or playing his tablet or DS, but my presence was very much required.  I took a supply of magazines, books and various puzzle books with me as well as my laptop, so I was able to entertain myself whilst he was absorbed in what he was watching.

teaOnce he started going to school, I spent my time off the hospital ward as much as possible, taking walks in the local area and getting some fresh air or doing the more mundane chores of laundry or tidying up our very small bed area.  I was lucky enough to be able to arrange to meet up with several of the lovely FABED Mums whilst we were there too as their children came in for various appointments or procedures.  It was great to actually meet, sit down and chat with some of these folks who’ve been giving support over the last 4 years and to finally put faces to names.

Did you have opportunities to have ‘a break’?

My only breaks were relatively short ones when M was in school or the evening he went to Scouts.  Some parents lived close enough to be able to go home or even into work during the day, but being over 2 hours away from London made that impossible for me.  The 2 Saturdays when Mike visited, he spent most of his time with M, so G and I could go out and have some quality time together.  We went to a coffee shop for elevenses both weeks, I took her out for lunch the first week and the 3 of us went out for dinner both evenings before they headed home.  We were lucky that there are restaurants nearby that do gluten- and dairy-free food options, so eating out with G proved to be easy to do.  But that was it.  No other breaks for me as it was, all things considered, a relatively short admission and I needed to be advocating M’s needs during our time there, something I just couldn’t take a break from.

How do you stay sane while there?

friendsWho said I did?!  Truthfully, my sanity remained as much in tact as it did thanks to amazing support from family and friends.  The folks who dropped me an email, sent me a text, popped something in the post for M or even arranged for a beautiful bouquet of flowers to turn up completely unexpectedly.  And that’s not even thinking about the wonderful Mums I met on ward, who were all there for varying lengths of stay, for vastly different reasons and who gave me an ear to bend and a shoulder to cry on when I needed them the most.  Believe it or not, we had a lot of fun in the evenings, sitting in the bay, comparing stories, sharing opinions of nurses and consultants, chatting about life and generally putting the world to rights.  Those friendships were made in the hardest of times and the strangest of situations, but are worth more than their weight in gold.  I met amazing parents who are facing much bigger challenges than we have to cope with and yet go about everyday with a smile and a kind word for everyone they meet.  We all had our down days when we needed the support of those around us and I can’t think of a nicer bunch of people to have been through that experience with (Rhys, Lauren, Caroline – you know who you are and thank you!)