Tag Archives: school

The best laid plans…

Cupcake anyone?

Today is the penultimate day in National Eosinophil Awareness Week and our plans were to raise awareness and funds for FABED at school. I had approached M and G’s headteacher last week to ask if we could hold a cake sale – and yes, I do realise the irony in that choice – during today’s Sports Day. He readily agreed and the call went out, letting parents know about our cause and asking for donations of cake, and cash, for the day itself. However, at around 2am this morning, when I heard the rain pounding down outside the bedroom window, I realised with a sinking heart that there was no chance of Sports Day happening and I would need to agree an alternate plan with the school to get rid of the 100 M-friendly cupcakes that were littering our kitchen. Fortunately, school have been fantastically supportive of our fundraising efforts this week and we were able to hold the cake sale at the end of the school day instead. Despite the last minute change to our plans, we raised an amazing £87 for FABED and even managed to hand out some information flyers about EGID to interested parents. I was encouraged to be told by one parent that she had never heard of EGID before receiving the e-mail about the sale and so had gone on-line to find out more about the condition. That, for me, has made all our efforts this week worth-while.

M and G were also keen to raise awareness with their teachers and late Wednesday evening, I came up with a plan that would get our message out. Thanks to the generosity of FABED, I had a stash of their pens at home – bright pink and bearing the FABED logo – and, following a hasty head-count of the members of staff in the school, realised that there was enough for every teacher to be given one. I painstakingly cut out pairs of glasses from “FABED-pink” paper, glued them to hand-made white card tags, inscribed them with the words “I am EGID aware..are you?” and attached the tag to each pen. The end result was effective and M was delighted to be able to take them in to school with him this morning and hand them out to the teachers. We had lots of positive feedback as they received their pens from him and I hope that this will encourage them to also find out a little more about EGID. Knowing that at least 3 teachers have decided to use the FABED pens as their dedicated register pens assures me that it’ll be a constant reminder of EGID and not just a nice thing that happened on the Friday before half-term. Not content to leave our awareness-raising with just school today, M also took some pens and left-over M-friendly carrot cake cupcakes to Stagecoach tonight for his teachers there to enjoy. He’s been fab at handing them out today and has grown in confidence about explaining what it’s all about – as long as Mummy’s alongside to lend a helping hand when needed.

On the food front, Mike decided to eat exactly the same food as M today, matching him mouthful for mouthful, even down to the obligatory serving of Neocate at the end of the day. I chose not to do the same this year as M has been off his food this week due to his flare and I need to keep my carbohydrate intake up to keep my T1D on an even keel, although I too have ~~endured~~ enjoyed a glass of Neocate!

	M	Me	Mike
Breakfast	Rice flour toast (2.5 slices) Peanut butter Honey Allergy-friendly chocolate spread 150mls rice milk	Sliced pear Black coffee	Rice flour toast (2.5 slices) Peanut butter Honey Allergy-friendly chocolate spread 150mls rice milk
Lunch	Sakata rice crackers (4) Free from spread Fruit stars Sesame snaps Orgran Mini chocolate Outback biscuits	Rice flour toast (3 slices) Smoked salmon trimmings mixed with cucumber, tomato and egg-free mayonnaise	Sakata rice crackers (4) Free from spread Fruit stars Sesame snaps Orgran Mini chocolate Outback biscuits
Dinner	4 tbsp Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock) 150mls rice milk	Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock)	4 tbsp Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock) 150mls rice milk
Snacks	Carrot cake cupcake Nakd Cocoa Orange Date bar 1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup	1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup	Carrot cake cupcake Nakd Pecan Pie Date bar 1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup

If you would like to donate to FABED and the wonderful work they do supporting families like ours coping with children with EGID, please see their JustGiving page at https://www.justgiving.com/FABED/

The Digestive Biscuit Challenge

Oh la la, the ultimate baking challenge

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Courtesy of theguardian.com

Two weeks ago, G and M came home from school bursting with details of their up and coming MFL Day – a day to experience more about the Modern Foreign Languages they both learn at school. Not content with themed craft activities, dance lessons and extra language practice on the day itself, school naturally decided a food treat would be an ideal extra for the day too. G and the rest of Years 5 and 6 would be baking and then tasting their efforts in school, whereas M and the others in Years 3 and 4 were simply going to enjoy eating a shop-bought version. The teachers couldn’t decide on an easy, Spanish treat, so the whole school would try a French delicacy instead.

Just when I thought baking couldn’t get any harder, I was presented with the ultimate baking challenge – chocolate croissants!

It was relatively easy to accommodate G’s dietary needs for the day as she is only wheat- and dairy-free. G could participate in the French cookery lesson, where the children were using supermarket croissant dough and milk chocolate to create their masterpieces, but rather than eating her own creation, G would give hers to her teacher and instead enjoy one of the marvellous Genius gluten-free Pains au chocolat that I had tracked down in our local Tesco. We hadn’t tried these before, but G assures me that they were absolutely delicious and she can’t wait to enjoy them again.

M, naturally, was a completely different story. School had agreed that I could provide a M-friendly chocolate bar as an alternative to the chocolate croissants the rest of his class would be enjoying, but I wanted to see if I could bake an equivalent for him to eat. Had I realised just how much work was involved in making these French delicacies, I might not have even entertained the thought, but having researched a recipe, I thought I’d give it a go. M has been finding things tough recently and I didn’t want him to feel even more different from his classmates. I was determined to attempt an edible and reasonably delicious safe version of chocolate croissants.

The original recipe I found was a vegan one and needed a little tweaking to allow for M’s current wheat- and gluten-exclusions. I replaced the plain flour with rice flour and took the decision to not add xanthum gum this time round. The croissant dough that resulted was difficult to work and I found it nearly impossible to perform the “laminating” process that is required when making this specialised pastry, I will no doubt attempt these again and will play around with my recipe to include xanthum gum to see if I can achieve the perfect consistency needed for this dough. I added the chocolate, baked the croissants and was pleasantly surprised at just how authentic my first attempt looked.

However, whilst the end result was not quite as I had imagined it, M was delighted that I had managed to produce a reasonable croissant and declared it an immediate hit. At the end of the day, I got the result I was after, one happy boy!

School trip!

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WOW! Haven’t things changed since we were young? Way back when, I remember the school trips from my Junior school years. They always seemed to be to places of historical importance or museums and not necessarily to the places my friends and I would have chosen for a day off school. As I got older, the trips involved a little more travel and even, very, very occasionally, a theatre trip, or suchlike, that required additional financial input from willing parents. These days school trips appear to have changed dramatically or, at least, that appears to be the case this term for my pair. They appear to be far more exciting than any school day out that I remember.

Courtesy of http://www.education-gate.com

M’ school trip happened a couple of weeks ago and, as it fell on a day I didn’t have to work, I tagged along for the ride. The day itself was grey, wet and miserable, but that didn’t seem to dampen the spirits of the 27 7- and 8-year olds going out for the trip. We clambered aboard the bus and off we set, amongst much discussion of just how long it would take for us to reach our destination. Fortunately, a mere 20 minutes later we arrived, disembarked and were ready for the next 2 hours. Our location? Pizza Express!

Last year, Pizza Express teamed up with the Children’s Food Trust to encourage children to get cooking. They offer free visits to schools, where the classes are taught about the provenance of the food they eat, learn basic health and safety in the kitchen and have the opportunity to make their own pizza to enjoy. What was even better, from my point of view at least, is that Pizza Express offers an excellent experience for food-allergy sufferers, which meant that M was able to participate fully on the day itself.

They started with a tour of the kitchens and a quick step into the enormous fridges – if they dared. We saw the pizza ovens, where we were told that a pizza takes no more than 4 minutes to cook, which certainly left us adults scratching our heads and wondering quite why it takes so much longer when you’re waiting at your table! This was followed by a food-based quiz, where 1 of M’s classmates impressed me by being able to identify oregano just from a photo and the children were able to taste, if they wanted, some of the ingredients they would be using later. Next, the pizza chef on site prepared from scratch one of the most popular pizzas, cooked it and offered a slice to everyone there.

Finally, as every child was now nearly at bursting point, they were sent to wash their hands thoroughly before starting to prepare their pizzas. An impressive array of ingredients was set out on the tables, enough to satisfy even the most picky of eaters, without overwhelming them with choice. Pizza bases were passed along the lines and the restaurant manager made certain that M’s gluten-free base was on its own tray to avoid the risk of any cross-contamination. M was given his own spoon and first go at the tomato sauce, so I was confident that his pizza would remain “safe”.

Every Pizza Express restaurant has a reference folder which shows every ingredient used in their recipes and indicates what allergens each contains. I was confident that the pepperoni provided was M-friendly, but it was fantastic to be able to check so easily and without fuss. I had prepared some slices of our newly discovered Violife cheese too, which meant M could finally have a pizza with cheese, rather than without which has so often been the case. M stood happily with his friends, laughing and chatting as they each designed their idea of the perfect pizza.

Once the pizzas were made, including those of all the teaching staff and parent helpers present, they were popped into the massive ovens to bake. As soon as they were ready, they were placed into individual takeaway boxes for transporting back to school and each box carefully labelled with each child’s name. All the hard work done, it was back to the coach and to school, ready for a pizza lunch.

It was great morning out and once again my heartfelt thanks go to Pizza Express for ensuring it was an experience that M could share in too, despite the multiple food allergies. Not only do they provide great ingredients and plenty of allergen information, but they are clearly conscious of the risks of cross-contamination for food-allergy sufferers and work hard to ensure those are minimised as much as possible. I was impressed with the birthday party we had there for G and equally so that time and care was taken to make sure that this school trip was 100% successful too. I have no idea what trip is planned next, but I suspect it will take a lot to beat this one!

Ringing in the New Year!

Our charity needs YOU!

End of an Era

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For once this blog post isn’t about either G or M, but rather about me. Yes, I know, a break from the norm, but there is a me outside of being Mummy and this week has been significant in that part of my life and I unashamedly want to share it.

Yesterday signified the end of an era. After 3 and a half years of working as the accountant for a small business, I said my goodbyes, cleared my desk and am off to pastures new. I have loved almost every minute spent there, but the time has come to move on and Monday morning will see me stepping through the doors of a local and small accountancy practice and starting a new adventure as part of my career path.

The decision to make this change has been a difficult process and is partly influenced by the journey we are currently on with M and his health. My experience has led me to contemplate just how lucky we have been with my employers, who have been unfailingly supportive of the numerous doctors appointments, trips to London, days off to be at home with a sick child and the resulting emotional strains as I’ve juggled home, health and work on a daily basis. I know that there are many parents out there who are not as lucky as I have been and who have to fight to show their commitment to a job, whilst struggling to cope with the drama of a chronically ill child.

There has never be any question or doubt about my commitment to the role and, under these circumstances, I’m sure there are many who are wondering why I would leave such an understanding organisation and venture into the unknown. The answer is simple. I have been fantastically lucky to find a new employer who has firsthand experience of having a child at GOSH and understands that there are times when I’m just going to have to drop everything and leave. Add into the equation the new proximity to home and school – I now have a 5-minute commute to the office in the morning, rather than the 25-minutes battle against the traffic or on the train – and a slightly shorter working week, which will give me the time to be at home to support both G and M as they need me right now, the decision really should have been an easy one.

It’s been more of this………….and not so much of this.

However, it was with a heavy heart that I left my offices yesterday. I have made some wonderful friends over the past 3 years and, for the first time ever, am leaving a job because it’s the right thing to do for our family and not because I am no longer happy there. Their unwavering support and love as we set off on the steps that led us to GOSH, a diagnosis and an on-going battle to return M to good health has been invaluable and I will miss the cheerful banter and the numerous cups of tea that get me through each day. So, for any of the “Donut Gang” who are out there and reading this, a big Thank you for the past 3 years and make sure you stay in touch!

Courtesy of dailybreadcafe.ca

Whirlwind week

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Having written my last blog about finally making the big decision to request that M has more scopes done, we settled in to what we assumed would be an inevitable wait for the appointment to be made. Having been told 6-8 weeks, I studied the calendar and figured out that 6 weeks would be right in the middle of October half-term and, knowing that there was no chance that we could be that lucky, assumed that instead we were looking at a date in the middle of November.

Courtesy of telegraph.co.uk

A week after Mike had spoken to the registrar at GOSH, I received a call from the pre-admissions nurse, S, to talk through M’s notes and agree the arrangements for the scopes. I was reassured to learn that M’s notes clearly state that there is a problem with him coming round from the anaesthetic and S suggested that, as a precaution, he be admitted to Kingfisher Ward for 2 nights to allow close monitoring as he recovered. We discussed the possibility of a pre-med, which is supposed to calm the child before they are given the anaesthetic. She felt this might lessen his reaction, though I was warned that there is a risk that it can have the opposite effect and might make him more aggressive. We agreed that I am open to him taking it, but will discuss it fully with the Consultant Anaesthetist the day before.

However, not unusually when it comes to M, there have been some added complications due to the chronic constipation and impaction he had over the summer. GOSH wanted to admit him for a week into our local hospital to have a fairly heavy bowel prep done – they need to monitor him to ensure he doesn’t get dehydrated plus insert a NG-tube to give him the meds as it seems unlikely that he’s going to be co-operative about taking 4 litres of a “vile-tasting laxative” (the words of the medical staff, not me!).

Mum had some holidays booked during the 6-8 weeks and I had my fingers crossed that the dates wouldn’t clash as G would be staying with her whilst Mike and I stayed up in London with M. S confirmed that she thought the appointment would most likely be in mid-November and that the admissions team would call me within the week to confirm a date. All seemed to be going to plan and I informed both school and work that the appointment would be coming up and that I would let them know as soon as I had a date.

And then last week, the whirlwind hit. Hold on to your hats, this could be a bumpy ride.

Courtesy of m.flikie.com

Friday afternoon 2.30pm – Phone-call from GOSH to say that the proposed date has suddenly become, not 6 weeks away, but rather the week after next, just 10 days notice for all concerned. No time to confirm what the position with our local hospital was, that will have to wait until Monday. Let school know that M will be away for the week and ask if they could organise some work for him whilst he’s there – I know, mean Mummy!

Weekend – Confirm arrangements for G. Mum not away that week, so G can stay with her and stick to her normal routine as much as possible

Monday 10.45am – Speak again to S, the pre-admissions nurse, who has yet to phone our local hospital, but who has a doctor on hand at GOSH to argue our case. Given M is supposed to be admitted there on Wednesday, it all feels a bit tight and needless to say, stress-levels are slowly rising. Suddenly, the 3 days off work and school have become over a week, but still just about manageable as I can do the school-run and so on with G.

Monday 1pm – GOSH doctor calls to confirm some further bits of information including the name of our local consultant (we don’t have one) and which ward M is normally admitted to locally (he’s not). Assured this won’t be a problem and that either she or the local hospital will ring later to confirm when I need to get him there.

Monday 6pm – Phone-call from S to say that the local hospital has refused to take him and so we’ve got to move to Plan B – getting him admitted into GOSH to have it done instead. No idea whether they’ll have a bed for him or when they want to admit him. They need to review the abdominal x-rays done over the summer (by the local hospital!) to see whether he needs to be in the full week or not. Someone will call tomorrow to let me know.

Tuesday 9.30am – Wondering what time GOSH will call and hoping that it’s good news.

Tuesday 12.45pm – Still waiting to hear

Tuesday 3.30pm – Still waiting, but hoping they don’t phone whilst I’m on the school-run.

Tuesday 4pm – Following call from Mike to see if I’ve heard anything – doesn’t he know I’d have rung him if I had? – decide to call and leave a message for the admissions nurse. She is amazingly, wonderfully supportive and has reassured me that she will come up with a Plan C if needs be, though goodness only knows what that will be!

Tuesday 5.15pm – ARRRRGGGHHHH!!! Appointment cancelled as GOSH can’t find him a bed for the week. Profuse apologies from S, who tells me she’s turning grey trying to organise it for us, but that admissions will phone me tomorrow to set up a new date. They’re not going to bother with the local hospital at all, I’m guessing they’ve been unco-operative which fits our experience of them, and instead will do it all at GOSH.

Tuesday 6.30pm – You really, really couldn’t make this stuff up! Phone-call from S, as I’m en-route to taking G to her gymnastics lesson, to say that they’ve found him a bed for next week and so it’s all back on. Can’t confirm what time we’ll need to be there on Monday, so I’m now planning on M and I travelling to London on Sunday. She will phone tomorrow to confirm all details.

Courtesy of telegraph.co.uk

Wednesday 11.45am – Hurrah! Get the champagne flowing, we have lift off. Final confirmation that M will definitely be in from Monday 10am, no ifs, buts or maybes left. S has been a star and has promised to come visit us once he’s on Kingfisher ward on Monday. I can’t wait to meet her and say a huge thanks for persevering with getting this all sorted.

Now, I’m off to work out what we’ll need and how we’re getting to London next week.

Play-date anyone?

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It is amazing how something so simple can make such a big difference to a small child.

As M started a new school this September and is still getting to know the children in his class, we decided to invite a new friend home for tea after school. M chose C, another child who’s new to the school. I ambushed his Mum a couple of weeks ago to broach the subject of whether he’d like to come home for a play, eventually got round to passing on my contact details and finally settled on a day.

Courtesy of gsapublishing.com

This Tuesday I left work promptly to make sure I was in the right place at the right time to pick up M, C and G. The weather held so they could all burn off their energy and excitement by bouncing on the trampoline and tearing around the paddock like wild things. I chuckled quietly to myself as I heard the 3 of them discussing the ghosts in our house and heard C promising that he would bring back his ghost-detector from home once he’d fixed it – a child with an imagination to match M’s, I thought. I fed them everything-free fish fingers, potato wedges and a variety of veggies determined by the preferences of each individual child. We even survived M having a soiling accident and successfully changed him without C being aware it had even happened.

Nothing particularly out-of-the-ordinary or revolutionary, you might be thinking and you’d be right. The bit that made all the difference came when C’s Mum came to pick him up.

“Thank you so much for having C home for tea,” she said, “he’s the happiest I’ve seen him since we made the move.” And then she uttered the magical words, “Would M like to come home to ours for a play-date next Tuesday after school?”

Before I’d even had a chance to reply, she continued “I can cook just plain chicken drumsticks with vegetables for them for tea, or you can pick him before tea if you’d prefer.”

This woman, who has swiftly become a new friend, had unwittingly just rocked my world. In the last 2 years, since we embarked on our free-from journey with M, he has been home to friends’ houses just twice. The prospect of feeding my food-intolerant child was too daunting to so many of the Mums I’d got to know during M’s first year of school that they just stopped inviting him back after school. One Mum had even told M three separate times that she’d talk to me about arranging a day and what he could eat, and then never bothered to make that effort. Needless to say, that was a friendship that quickly fizzled out as M couldn’t understand why the promised invite never came.

So, for someone who’d known us approximately 5 minutes to take M’s situation and tricky diet completely in her stride and willingly offer to have him home from school, has felt like a real blessing. We’ve got to iron out a couple of wrinkles that are playing on M’s mind – chiefly his medicines and the whole “what if I have an accident whilst I’m at C’s house Mummy” concern – but I’ve got those sussed and I think M is reassured that every eventuality is covered.

Which leaves my 7-year old eagerly anticipating the opportunity to fix the broken ghost-detector – “though I’m not entirely convinced he’s not just making the whole thing up Mummy” – and me as one happy Mummy.

*I’ve just found this article “I’m not neurotic, my kid has food allergy” which helps you understand even more about how important this sort of compassion can be to a family supporting a child with food allergies

Dyspraxia support

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Courtesy of shoreline-pt.com

As well as going back to school, we’ve also had M’s referral appointment for Occupational Therapy to support him with his dyslexia and dyspraxia. We had been warned that we might have to wait up to 9 months for the referral to be made, so you can imagine my delight to be offered an appointment just 3 months into the process. The therapist, D was fantastic and a lot of the health professionals we’ve seen along the way could learn a great deal from her approach to helping M.

Unsurprisingly, she had not come across EGID before, so had spent some time researching the condition and understanding how this might impact on M before we got to the appointment. She had read thoroughly the reports completed by the Dyslexia Centre, school and us, but then spent more time clarifying points with me, taking into consideration the change of schools and asking what we were hoping to achieve through OT. As we chatted, D observed M as he played with the various activities she had set out in the room, including a bat and ball, foam football and low-level balance beam. Her conclusion was that he most needs the support in improving his fine motor skills, which will directly impact his academic prowess and that working on those will then lead to an improvement in his gross motor skills and balance.

She then switched to assess his writing, cutting and cutlery-holding skills, all of which I had mentioned as areas that I felt needed some work. M showed his reluctance to write by insisting on discussing each task she set him, obviously in the hope that he could browbeat her into leaving them untouched, but he had met his match. D listened to his comments, acknowledged them and then prompted him to get on with what she had asked. He may have grumbled each and every step of the way, but he did them all and enabled D to assess as she needed.

Creating and then dismantling paper-clip chains

D suggested a number of games using everyday items – clothes pegs, marbles and paperclips – and explained how these would help build his finger strength. She set him challenges and played the games with him, so that he could understand what was required and she could check that he was doing them correctly. What impressed me the most was that D gauged accurately how many games to introduce and how long to play each one such that she didn’t overwhelm him with suggestions. Playing these games at home several times a week will bring about improvement and I foresee a number of family challenges to see who can perform the best.

A paper plate sun with peg rays to attach every morning

D also agreed that using a writing slope at school will make a massive difference to his writing ability. As it is highly unlikely the school will have one lying around, the OT department will arrange to lend one to the school for 3 weeks, which will allow the teachers to assess the difference it makes to his work. This will be followed up by a written recommendation and a school visit, where D will be able to observe M in the classroom setting and see what else might be done to support M and help him achieve, before meeting with the SENCo and suggesting how some funding from their SEN budget will help.

This school visit will then be followed up by a return appointment with M himself, whereby she can see if the daily activities she has suggested have helped and whether school have followed her recommendations and funded the special equipment he needs. I have already invested in a set of “caring cutlery” to help him at meal-times:

Courtesy of completecareshop.co.uk

Whilst we continue to struggle with his gastro health, it is a huge encouragement that there is something useful that we can actively do to improve M’s school-work and performance. He is a bright and articulate child and it will be both fascinating and exciting to see how things develop over the coming months.

7 years to diagnosis

Searching for an answer