Category Archives: School

Year 6 Camp, here G comes!

This weekend has been a busy one, perhaps busier than expected for me given that Mike and the kids have been away on their “Dads and kids” camping trip.  Instead of taking time to spoil myself in peace whilst they enjoyed the glorious sunshine and camp activities, I sorted, washed, shopped and ticked things off a list, all in preparation for G’s Year 6 camp next week. She’s there for 4 days of adventure: from archery to rock climbing and caving to kayaking, and it’s promising to be an adrenalin-filled time away from home.  It will be the first time she’s stayed away for any length of time, apart from during school holidays with my Mum, and I know she’s been feeling a little apprehensive about it all.  The strain of not knowing in advance who she’d be sharing a room with took a bit of the shine off her excitement and she was anxious to confirm that she could opt out of the caving, the one activity she has said she doesn’t want to do since we first heard about camp back at the start of the year.

The one part of her week away that has not been of concern for her has been the one that I’ve been able to contribute to:  her food.  I’ve met with her teacher, Miss K, and the Head throughout the year to discuss the catering arrangements at camp and had an unprecedented 3 meetings the week after half-term as well as multiple e-mail exchanges to ensure the final plans were watertight.  Miss K spoke to the camp cook to discuss G’s dietary needs and was reassured that they are well-used to catering for children with food allergies.  We had talked about the types of food that would need to be considered for G – GF bread (Genius brown), DF spread (Vitalite Dairy-free) and DF milk (Rice dream) amongst others – and armed with brand names, Miss K has been able to confirm with the camp that these will be available for G.

Mr._WorryI am confident that breakfast and lunch will be okay, but it is still the dinner arrangements that are causing me mild moments of suppressed panic.  If G was “just” gluten-free, I’d have fewer concerns; if she was “just” dairy-free, I’d be only mildly worried, but the combination of both, whilst so much easier to manage that the multitude of allergies of others in our household, requires a little more forethought.  When discussing the menu with Miss K, I realised just how much planning is needed to make G’s meals safe, something that probably seems strikingly obvious to everyone else, but is so second nature to me that I’ve had to learn how to effectively micro-manage these finer details.  It’s not as simple as ensuring that GF pasta is cooked for lasagne or GF sausages provided for sausages and mash as she can’t have cheese or white sauce, mashed potato needs to be made with both DF milk and butter and there’s the hidden use of flour to thicken sauces.  Those are the little things that sometimes slip under the radar.

So, the school and I have reached a sensible arrangement.  I am providing some safe foods for the week for G for those “just in case” moments – cartons of rice milk, safe drinking chocolate, GF breakfast cereal and a loaf of GF bread.  There will also be a packet of GF pasta and a GF/DF curry sauce tucked in that will take up little space, but will give me some invaluable peace of mind. I’m also packing a special camp “swap box” as an alternative to the lure of the vending machines that her friends will undoubtedly be pillaging at all times of the day and night.  In there will be safe biscuits, snacks and a few bars of our ever-favourite Moo-free chocolate to ensure that she has the opportunity to gorge herself at midnight alongside her room-mates.

Today I handed over that precious bag of food and, tomorrow morning, as M and I wave her off on her adventures, I know that she’ll enjoy a mostly worry-free fantastic week away with her friends and my concerns need only be small.

Sports Day success

Sports Day conjures up so many memories for me: of races run, giggles with friends, frenzied cheering and the exhilaration of realising that your House has actually won the coveted cup.  A day full of so many heightened emotions and today, for me, held more than any other in the past.  Not surprisingly I wondered what the day had in store for M and worried a little about how he’d manage the races with his cumbersome pump pack strapped to his back and his tube taped to his face.  And it was the end of an era for G.  We’re in to the final stretch:  May half-term is over, SATs have finished, the Year 6 production rehearsals are ramping up and in less than 6 weeks time, my first baby will have finished her Junior school years and “big school” beckons for September.

One of the very many things I love about the kids’ school is that they still hold a competitive Sports Day, where winning means something, but is not as important as team spirit, or encouragement, or taking part. or cheering for everyone in the race, whichever House they represent or whatever position they finish.  I still remember the very first Sports Day I saw at this school, when G moved there half-way through her Year 4 year.  I was instantly impressed by the support and encouragement given to, and by, every year group to each other.  I saw Year 6 boys cheering their peers on, waiting by the finish line to welcome the last child in,20150612_100530 however old they were and thumping them on the back for a job well done. When I saw that I knew that we had made the right decision in choosing this school for our pair and looked forward to them becoming a part of it.

Three years on from that first Sports Day and I stood proudly on the sidelines cheering both my children on. The first half of the morning was occupied with following M’s class around the circuit of team races and the occasional mad-dash removal of his pump pack when it suddenly became evident that neither skipping ropes or sacks were going to work with a heavy back-pack in situ. He took part in every activity and my heart swelled when his entire class chanted his name as he completed a second turn in the sack race for his House. For his lap in the family relay – a team consisting of one child from each year group – photo credit to L Dacrehe and I agreed that he could race pump free and with his tube strapped down and, boy, was it worth it. He flew down the track at lightening speed, proving to all watching that his tube really doesn’t stand in his way, especially not when it comes to winning points for his House.

20150612_120335Disappointingly, I couldn’t watch as much of G as I would have liked, but despite only being able to watch her complete one of the initial team races, I was able to cheer her on during what I was thought was her only other event, the over-and-under race.  To my surprise, as she and I stood side-by-side watching M run his relay, surrounded by their House, she announced that she was also running in the Year 6 girls’ relay, a race I would have never anticipated her taking part in as she’s really not a runner at heart.  And so, this year’s Sports Day experience finished in fine fashion with M taking G’s place next to me, cheering his big sister on as she competed in her final race of her Junior school days.

Our thanks go to…

The week is winding down and I am definitely looking forward to the start of half-term and the chance to have a sleep-in over the weekend.  One’s thing for certain, being active in raising awareness whilst eating a restricted diet really takes it out of you!thank-you-languages

With T for Thanks being our topic for today, what else could I do, but issue a few heart-felt thank-yous to those who’ve made a difference to us in the 12 months since the last NEAW. It’s tricky to know where to start, but, in no particular order, I’d like to thank:

Our families – well it was a given really, wasn’t it?  But whichever side of the ocean they may live, our families have been there in whatever way they can 澳大利亚孩子-1202242and supported us in the tricky decision to move M to a NG-tube and the elemental diet.   We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

Our friends – another obvious lot, but again we couldn’t have survived the past year without them all.  Their help has been invaluable: from text messages to lengthy phone conversations; early morning G-sitting to late night conversations with a cup of tea; and much-needed hugs to unexpected hospital mail, every single gesture has meant more than they can ever imagine and helped keep us strong.

GOSH – our consultant, her great gastro team and, in particular, the fantastic nurses who work with such dedication on Rainforest ward. Their care for M back in December was just amazing and without them looking after us both and giving wise words and training, we’d have struggled even more with the reality of the NG-tube and the feeding pump.  We also owe massive thanks to M’s fabulous dietitian, Colorful solidarity design treewho is always at the end of the phone or the email and has given me lots of helpful recommendations as well as reassuring me that I’m doing things right when it comes to the whole food re-introduction thing.

M’s School – I am very aware of just how lucky we have been with the staff at M and G’s school. They have been so understanding of how life was changing for both children during this school year and have made every effort to look after them and help them feel happy and safe when at school.  5 of the teaching staff bravely took on the role to learn how to manage his feeding pump, which meant that I could return to my job, confident that they were competent in what they needed to do.  This week they were also quick to agree to M’s request to share his presentation to the rest of the school and every teacher made time to make sure their class could see it and ask any questions they had.  This school has done a wonderful job of nurturing both my children and I will be sad when G moves on to “big school” in September.

G – the best big sister that M could ever have had.  She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time.  She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home.  P1000121And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

Mike – I couldn’t finish without recognising the person who stands alongside me on this, the most challenging of journeys we’ve been on together, and is my strength when I’m feeling weak.  We’ve reached a harmony that enables us to take turns in being the strong one during appointments and I can’t think of anyone I’d rather be facing these decisions with.  He also understands my need to have some time to escape from the day-to-day grind of EGID and puts up with me disappearing off twice a week to choir rehearsals.

And thanks to all of you, who’ve kept reading my blog, put up with somemany…repeated requests on my part and have done an amazing job at sharing my posts on.  Your silent show of support is what helps keep me going, even when times are tough.

“So much time…

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

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

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

Just one more dress-up challenge!

20150301_144602These past 2 weeks have been filled with one dress-up day after another for our household. Of course, it all started with the Cluedo party we held to celebrate G and M’s birthdays, where we invited guests to come in optional fancy-dress to match their character if they wanted.  The key word was “optional” as I was well aware that not all of M’s friends are as big a fan of fancy-dress as M is, but we were impressed with the range of costumes that arrived on that Sunday afternoon.  We had “Reverend Green” sporting a dog collar and a striking pair of bottle-green jeans; “Earl Grey” in pinstriped waistcoat, bowler hat and monocle and “Admiral Azure” had a home-made pair of epaulettes that would cause envy in the heart of any member of the armed forces.  Not to be outdone by the costumes of the boys, many of G’s friends joined in, wearing dresses to reflect the glamour of “Mrs Peacock”, “Mrs White” and “Lady Lilac”.  Dress-up challenge #1 – done.

20150305_083738Just a few days later came the first of our dress-up days at school, World Book Day.  Refusing to give in to M’s demands for a custom-made costume this year, I instead insisted he wore the army captain’s costume that we had bought for his representation as “Captain Emerald” at their birthday party and suggested he went as “Captain Nicholls” from Warhorse by Michael Morpugo.  We have recently enjoyed the stage production of Warhorse whilst it was on tour around the UK and M had bought himself the book for his admission to GOSH before Christmas, so he leapt at this chance, though in typical M style, he chose to be the lesser-known “Major Stewart” because he “got to ride Topthorn and not Joey, Mummy.”  G also wore a costume she had in her wardrobe and despite dicing with the idea of being “Dorothy” (Wizard of Oz) for the 3rd year in a row, ended up going as the “Princess” from Aladdin, wearing the Disney outfit from our Florida holiday last year.  Dress-up challenge #2 – tick.

20150306_154905The day after World Book Day, M had his Roman “Wow” day at school, requiring, naturally, a Roman costume.  He had originally toyed with the idea of going as a Celtic slave, but when the morning dawned, he had a change of heart and out came my trusty needle and thread, one of Mike’s white t-shirts, G’s plaited belt, M’s old white karate trousers and one of my red pashminas.  Less than 30 minutes later, our very own Roman-esque citizen made his way up to school – not bad for a quick Google search and 15 minutes of hurried sewing!  Dress-up challenge #3 – survived by the skin of our teeth!

 

20150311_210916I had a quick breather over the weekend, which was time enough to celebrate M’s 9th birthday itself and to gather the necessary base materials and trimmings for the next fancy dress requirement – a Greek toga each for the end-of-term Stagecoach performance.  Fortunately we were provided with a set of instructions on how to make a simple toga and G had acted as a model during Stagecoach a couple of weeks ago, so I had already had a sneak preview of how to put the costume together.  The togas themselves were simple enough to make, but then came the lengthy task of adding trim to suit the needs of my demanding duo and the trickier job of making the togas fit.  It might have taken a (very) late night, but the end result was fantastic and I can’t wait to see them perform on stage at the end of March wearing these masterpieces.  Dress-up challenge #4 – future success.

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And so it’s on to just one more dress-up challenge as tomorrow is Comic Relief and the challenge to “Make your face funny for money”.  The costume is the easiest part of the day as they just need to wear their own clothes to school, but the challenge will come early tomorrow morning, when we need to be up at the crack of dawn to give me time to face paint them both.  G wants a tiger and lion on her cheeks, so we’re going to cheat slightly by using M’s tiger feeding friend stickers on one cheek.  I’ve promised her a lion’s face on the other side as long as she’s happy with a cartoon style decoration.  If we have time, I’ll also do her hair in a funky style and, fingers crossed, both will last her throughout the school day and tomorrow evening’s Stagecoach session.

Courtesy of blog.partydelights.co.uk

Courtesy of blog.partydelights.co.uk

M’s face will take a little more work, but I wanted to do something a little different to his tube for the day.  The plan is to cover his tube with both the tegaderm dressing and then a layer of safe micropore before I get to work with the face-paints.  We’ve agreed on a snake design, which will hopefully see me camouflaging his tube as the snake’s tail as it winds around the back of his head, with the snake’s head, complete with sticking-out tongue, appears on the opposite side.  Whether it will work or not, we will just have to wait and see, but I promise a photo if all goes well!  Dress-up challenge #5 – still to be decided.

A Whodunnit birthday!

In the past 3 months, we’ve conquered Christmas, survived the return to school, managed the mysteries of the NG-tube and, most recently, started to tackle the tricky business of food re-introductions,  Now it was time for my biggest challenge yet:  M’s birthday party.

20150301_143337As G turned 11 back in December when M and I were in GOSH and we didn’t get to mark it in any great way,  I wanted to make sure she could celebrate her day with her friends albeit belatedly.  By the time Christmas had passed, the new year was in and we got round to making plans, half-term was fast approaching with M’s birthday hot on its heels.  I tentatively suggested we threw a joint party, not at all sure what response I might get and was delighted when they leapt at the chance.  Next came the trickier job of agreeing what to do and even though many ideas were bandied around, we struggled to come to a compromise that suited them both. With M keen to do LaserQuest or rock-climbing and G hankering after bowling, a final decision seemed impossible to reach until, in a rare moment of like-mindedness, they put their heads together and came up with the idea of a Cluedo-themed birthday party.

20150210_225626The first step was to set the scene for the murder of Mr Black by choosing enough character names, crime scenes and potential murder weapons to accommodate 16 children.  We started with the original lists of the game itself and added to them, ending up with 10 weapons, 10 rooms and 16 characters, which G and M allocated to each of their friends in turn.  I designed and then created the invitations to be handed out at school, inviting the children to join in the birthday celebrations for Captain M Emerald and Countess G Pearl.

Naturally, the finer details of exactly how the party would be run were left to me, but I loved the idea of a murder-mystery style party based on this classic board-game and have spent much of the last 4 weeks planning, preparing and perfecting each element of the day.  The children had lots of ideas about what they wanted to do and we ended up with a series of games, activities and refreshments that would prove to keep the most picky of 11 year-old girls and most active of 9 year-old boys happy for 2 hours.  Each game was attributed to one of our 16 characters, so the guests had the opportunity to test their skills with a Nerf gun at Colonel Mustard’s Shooting range or joined in the pottery painting classes run by Mrs Peacock and Lady Lilac.  We wanted the children to still experience the original aim of the game and work out the who, where and how of the murder, so every activity they did gave them the opportunity to reveal more cards to eliminate suspects from their lists.  This could be as simple as decorating a cupcake for Reverend Green’s church fundraiser to see 2 cards, or as revolting as delving deep into Mrs White’s giant trifle to pull out another one. Everybody had a chance to try their luck at each of the games and they all had a whale of a time.

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As M is still very limited with the foods he is currently able to eat, I decided to avoid a traditional party tea and instead served a dessert buffet, which included pineapple and Foxes glacier mints, both of which are safe for him.  He was also involved heavily in the decision-making about which cakes, biscuits and sweets would be on offer to his friends, which meant he was aware of what his friends would be eating and was happy to sit with them and chat as they all helped themselves to the selection of treats.  20150301_155523The final party game was “Pass the revolver”, which saw the children completing forfeits to see the final 2 Cluedo cards before they had to reach their conclusions and share the results of their investigations.  Nobody successfully worked out all 3 murder cards, though there was a small cohort who managed to work out 2 of the 3 elements correctly.  We finished with the traditional rousing renditions of “Happy Birthday” and then sent our guests on their way.  Both G and M loved every moment of their Cluedo birthday party and the text messages I’ve since received have assured me that their friends had a great time too.  In the words of one of M’s friends, it was “the best birthday party EVER!