Category Archives: General

Perfect Pizza

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20140721_174621Today a parcel arrived for me.  To say I was excited by its delivery is something of an understatement as the contents of this parcel meant that M had only one request for tea – pizza.  At the Allergy show a couple of weeks ago we discovered the wonders of Mozzarisella cheese, a cheese made from germinated brown rice and which is therefore 100% safe for M.  I recently perfected a M-friendly pizza base recipe too, so this proved to be the ideal opportunity to put these magical ingredients together and taste the final result.

The best thing about this recipe is that it’s quick and easy to make and both the kids love choosing and adding their toppings to the pizza base.  I mixed up the pizza dough, rolled out the bases and then let M and G loose in the kitchen.  Today’s toppings were fairly simple, G chose ham, sweetcorn and grated Ewe’s milk cheese, whilst M settled on ham, sweetcorn, olives and slices of the mozzarisella.  He braved a taste of the cheese before it was cooked, but decided it was too slimy to enjoy “raw”.

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Fifteen minutes later and this was the final result.  The pizzas smelled amazing and both children tucked in.  The mozzrisella cheese got a big double thumbs up from M, so I know it must have been good and he’s asked for the leftovers in his lunchbox tomorrow.  All in all a resounding success and a recipe I’d definitely recommend to anyone.

 

Three square meals a day

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Last week cooking at school soared to a whole new level and, I have to confess, so did my heart rate when I first heard about it.  I love the fact that both G and M have been able to participate in cooking at school this year and have been involved every step of the way to ensure that they’ve been able to eat whatever they’ve cooked – be that by providing adapted recipes, suitable ingredients or, on occasion, a friendly alternative for them to enjoy after cooking with “normal” ingredients.  A stream of constant communication between myself, the school secretary, both class teachers and the SENCo has been key to this success.

This time round, however, the plan completely changed. The Square Food Foundation were coming into school to cook with the children, one class at a time and when I asked the obvious question – “What are they cooking?” – the school had no idea what was on the menu. The letter home had asked parents to list any food allergies as they knew that some could be accommodated, so I felt confident that G would be okay, but I wanted to understand whether M would be able to taste the food that was being taken back to the classroom after the session, or if I would need to come up with a back-up plan for him.  The Headteacher said that he would be contacting the Foundation himself to ask the question and, armed with the full list of M’s current allergies, he made the phone-call.  To my delight, he was reassured that M would be able to take part fully in the lesson and I agreed to be a parent helper for M’s class to make sure that all ingredients used were definitely safe.

20140710_094912The day eventually came, we got to school and here is where I need to make a very big apology to the organisers from the Square Food Foundation.  I caught sight of the tables and ingredients set up in the school hall and my heart sank.  I saw piles of baguettes, cartons of natural yoghurt and boxes of eggs; and I doubted what they had said.  At first glance I couldn’t see how M could possibly be able to taste the food with those ingredients involved and we started the lesson with me quickly trying to work out if I could fit in a quick dash home to pick up something M-friendly for the tasting afterwards.  However, I was wrong.  As they discussed the different ingredients they’d be using, the children were asked what they thought they could prepare using the eggs and oil:

“Fried eggs“….”something yummy“….”something I can’t eat“

(you can guess who that last response came from)

“Ah yes.  You must be the young chap with food allergies.  What can’t you eat?“

20140710_093537As I reeled off the list, the man in charge sagely nodded his head, “Then you will be in our houmous team” and with that comment, all become clear.  The plan was to prepare 3 different dips – houmous, aioli and tzatziki – and assorted crudites during the 30 minutes cooking time.  The class was quickly divided into 3 equal groups and sent to 3 banks of tables, where all the necessary ingredients and equipment were ready and waiting for them. The children had an amazing time.  They were trusted to use sharp knives to chop the vegetables and crush the garlic.  They drizzled the oil, squeezed the lemons and ground the cumin seeds.  20140710_094403Finally, they mixed the ingredients together and plated up their finished houmous and crudites for the class to admire and enjoy.

All 3 dips looked amazing and I am assured by M that the houmous was delicious.  It was a great morning’s activity and I know that G enjoyed her chance to make aioli later in the day too.  So it’s a very big “Thank you” to all the members of the Square Food Foundation who came to the school, taught some new skills to the children and made no fuss about meeting the needs of M in such an amazing way.

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Allergy Adventures

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adventureIn my recent blog about the Allergy and Freefrom show in London, I mentioned in passing the wonderful Allergy Adventures, who M was keen to visit during our day at the show.  We first discovered Allergy Adventures at last year’s show and were so impressed with their products that we’ve kept going back for more.

Allergy Adventures was set up by the lovely Hailey, who explains her reasons for starting the company on her website.  She produces beautifully illustrated children’s books that take the reader on a magical journey inside their lunchbox, accompanied by a character with the same food allergy as them as they look for safe foods to enjoy.  Each book focuses on one main allergen and teaches the child “how to tell others about their allergy and stay safe around food.” These books are bright and colourful and drew M’s attention last year as we wandered the stalls of the Allergy show.  Whilst he and G joined in with some paper-plate crafts – an absolute godsend to any parent who wanted a break from complaints of aching legs due to the amount of walking needed – Mike and I flicked through the books.

Stickers_5_largeUnfortunately, due to the extent of M’s allergies, there isn’t one particular book that we could buy for him to enjoy and to share with his friends, but there was another product that caught my eye and which I snapped up in an instant.  These fantastic “stickers” have proved invaluable in labelling any pots, products or boxes that go into school for M’s use.  His lunchbox, water bottle, medicine pots and individual tupperware containers all have a sticker, indicating that the contents are M-friendly and for his use only.  Even the children’s swap-boxes have a couple of “Hands off” stickers, so that everyone knows that they are specifically for G and M.  What I particularly love about these stickers is that they create a positive association with his food for M.  Rather than focusing on the “free-from” label and listing what he can’t eat, they instead stress that the food is special because it belongs to M or G and not to anyone else – a great message for my allergy-challenged boy.

Earlier this year, Allergy Adventures also produced an amazing allergy-friendly cooking guide, which lists out easy substitutions that can be made when baking or cooking for someone with food allergies.  Not only does it make sensible suggestions about replacement products to use, but the notes highlight key areas to consider when using alternatives.  Best of all, this has been produced as a free resource and can be found by following this link. With plans afoot for creating more resources to support children with allergies both in hospital and in schools, this is definitely one to watch.

After our first hour or so at the show, we finally listened to M’s request and headed for the Allergy Adventures area.  Once again both G and M created paper-plate masterpieces, whilst resting their aching feet and Mike and I had a break from their moans, for a few minutes anyway.  I grabbed the opportunity to catch up with Hailey, who I chatter with on Twitter and 10outot10also the fabulous Vicki, the FreeFrom Fairy, another Twittersphere friend.  Once G and M had finished their creations, they were captured on film for the Allergy Adventures video all about the 2014 Allergy show.  There’s really nothing more to add.  This is a great set of resources for anyone with a child with food allergies and I would really recommend you spend some time exploring everything Allergy Adventures has to offer, it definitely won’t be time wasted.

 

Allergy & Free From Show, London 2014

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allergy show

Last weekend was the annual Allergy and Freefrom Show in London, one event that has been pencilled in my diary since we visited it for the first time last year.  This amazing show features a multitude of companies and charities who provide goods and services for those struggling with a life with allergies.  From the well-known brands to smaller businesses who have only just started out, the stalls offered both G and M the opportunity to taste and try a range of safe foods and drinks.  This year we visited on the Sunday, hoping for a marginally less hectic day there than the one we experienced last year.  We arrived before the doors opened and despite joining the long queue that was forming outside, the sensible decision was made to open the doors slightly ahead of schedule and we were inside the hall in no time at all.

As soon as we spotted the map, we ran our eyes down the list of stall-holders, noted the location of our key stalls to visit and formulated our plan.  I wanted to see as many of the allergy stalls as possible, hoping to find some more M-friendly products to add to our cupboards.  Mike and G declared themselves happy with just wandering around and tasting whatever free samples were on offer and M had 2 specific requests for the day – Ms Cupcake and Allergy Adventures.

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Courtesy of simranb94 on Instagram

M often talks about the decadent cupcakes that he enjoyed at last year’s show, which were revolutionary for him as he hadn’t had such a large choice of cakes to choose from since before his diagnosis.  All of these cakes are vegan and some are baked to be gluten- and soya-free too.  He remembers well just how large these treats were and had discussed at length that he thought it best if this year he and G chose one to share rather than one each.  Needless to say, the reality and temptation proved too much and all his plans went out the window the minute he laid eyes on Ms Cupcake’s stall.  M chose a Black Forest cupcake and a choc chip cookie sandwich, whilst G had a wider choice and settled on a Chocolate and peppermint cupcake as well as a choc chip cookie sandwich.  As they started on their mouthfuls, I asked for their opinions as to the taste, but they had no comment to add as their mouths were crammed full – a true sign of just how delicious they are!

milkWe made our way around the myriad of stalls, tasting tidbits, chatting with stall-holders and discovering some wonderful new products to add to our M-friendly repertoire.  I picked up some old favourites, such as Nakd bars, Frank* bars and Newburn Bakehouse wraps, at amazing show prices as well as finding Le conserve della nonna pesto and Free’d crackers, which I’m hoping will quickly become new staples in our home.  There was a lot of gluten-free items on offer, but we struggled more this year with what was available for those with multiple food allergies, which was disappointing given that forms the basis of our allergy needs.  All that being said, we came home with a carload of M- and G-friendly foods, including enough KoKo Chocolate and Strawberry flavoured coconut milk to last us at least a couple of months!

It was a long day, especially after our amazing day out at Silverstone on the Saturday, but I’m glad we made the detour from Northamptonshire to London to experience the show.  Everyone there was helpful and informative and I had no problem in identifying what M could and couldn’t try.  This is definitely a trip I’m planning to make again next year and one I would highly recommend to anyone living with allergies.  Even better, if you live further North in the UK and don’t fancy the trek to London, there is now the Liverpool show to enjoy in October and you can find out more about visiting that here.

A Grand Day Out

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granddayoutIf you’re a sports fan, then last weekend was the weekend for you:  Wimbledon finals, the Tour de France in Yorkshire, World Cup quarter-finals and the Formula 1 British Grand Prix.  Under normal circumstances, I’d be trying to grab glimpses of the tennis whilst dealing with the never-ending demands of homework and food, admist the cries of “Do we have to watch the tennis?” from G and M.  This year however, saw a break from the norm and instead Saturday found me browsing the shelves of Milton Keynes’ library on my own as Mike and the children spent the day at Silverstone.

20140705_164656This amazing opportunity to watch the qualifying races for the British Grand Prix was thanks to the GOSH events and charity team, who work with Bernie Ecclestone and his team at Silverstone to fundraise for the hospital.  They have been working together to raise much needed money for 10 years, raising a whopping £4million for the hospital.  Each year they offer 30 GOSH patients and their families the chance to visit the race track over the 3 days of the Grand Prix event.

I first heard about the event on Twitter, where 140 characters offered parents and family of GOSH patients the opportunity to contact the charity’s office and apply for tickets for the event.  I wasn’t convinced we’d get the tickets given there must be hundreds of children who’d love to attend, but I came to the conclusion that there was nothing to be lost in making the application.  I filled the form in, contacted M’s gastro team to ask for an email supporting our request and confirming that he was fit and well enough to attend the day and emailed the completed form back in with my fingers tightly crossed.  I hoped we might have a good chance as M said he wanted to go on the Saturday as 1) he wouldn’t miss school on the Friday and 2) he didn’t want to go on race day itself as we weren’t sure whether there’d be as much to do during the day.

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20140705_105949We didn’t have long to wait and were delighted when Mike got the phone-call to say the application had been successful and 3 tickets for the Saturday were ours.  M was very excited to be going and the opportunity couldn’t have come at a better time for him as he’s been struggling with some big flare-ups from the EGID recently as well as the introduction of 3 new medicines to his daily regime, which has been challenging for us all.  The day had become a real focus for him and he was determined to have a great time there.  It was also fantastic to be able to include G in the day out as she rarely benefits from M’s illness and is frequently relegated to second place as we try to deal with him.  She was as excited as the boys and I hoped she would enjoy herself as much as I knew Mike would!

20140705_112530So, whilst my lucky trio spent their day meeting the likes of Eddie Jordan, exploring the Paddocks and the garages, polishing a F1 car and experiencing everything that Silverstone had to offer, I spent a quiet day on my own in Milton Keynes.  I explored the shops, enjoyed lunch at John Lewis and spent a few idyllic hours peacefully writing my blog and reading in the library.  The children have hardly stopped for breath since Saturday, telling me tale after tale about their grand day out and it’s all thanks to the hard work and generosity of those at both Silverstone and GOSH.

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Gnocchi

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With the end of the school year just around the corner and G preparing to start her final year of Juniors in September, I’ve recently been reminiscing about her baby years and in particular, when we first found out I was pregnant with her.  I had just qualified as an accountant, was about to move to my first job in industry and Mike and I were on holiday in Florida.  My main recollection, other than the overwhelming joy of discovering we were expecting our first child, is eating Gnocchi at the Via Napoli restaurant at Epcot.  For those not in the know, gnocchi are mouth-watering Italian potato dumplings and, quite obviously, this experience was in the days before my own potato intolerance was identified. Via Napoli

As I recalled the delicious flavours that literally melted in my mouth during that holiday, I wondered whether this was a food experience that I would ever be able to enjoy again or one that I could introduce to my multiple allergy-suffering children.  I did some research on-line and found two recipes that almost fit the bill.  Whilst neither was perfect by itself, I could combine and adapt them to create both M-friendly and G-friendly gnocchi.  Due to the pernickety nature of my eldest, who won’t touch sweet potato with a 10-foot barge-pole, I had to use this allergy-friendly recipe, whilst I needed the expertise of this sweet potato alternative for M.  I decided it would be worth the time and hard work required to cook both recipes if I could find a new meal that both would ultimately enjoy.

20140701_173743I will warn you now that this is not a recipe for the faint-hearted as it is relatively labour-intensive, but the delightful end result was, in my opinion, well worth the effort.  I invested in a potato ricer, which produced the most wonderfully smooth mashed potato I’ve ever seen.  I have since learned that you can achieve the same result using a bog standard food blender, but I’m thrilled with my shiny new kitchen gadget and wouldn’t swap it for the world.

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I almost come unstuck over the weighty decision of a sauce, but decided to err on the side of caution and prepare the one suggested with the sweet potato gnocchi recipe, keeping my fingers crossed it might pass muster with G and M alike.  I am astounded and delighted to announce that neither child turned their noses up at my home-made gnocchi and they were an unexpected resounding success.  Unbelievably both children cleared their plates and G was so enthusiastic about the dish that she asked if I could make it again the following day!

The batches of the gnocchi dough I had made with my adapted recipe were enough to not only feed the 4 of us a hearty dinner, but also allowed me to batch up 3 more dinners for G and M and pop them into the freezer for future occasions.  As the Italians would say, “molto delizioso!“

‘looming marvellous!

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I know, without a shadow of a doubt, that G & M are not the only children across the UK, or indeed the developed world, who are currently obsessed with the latest craze to sweep the nation:  Loom-bands.  Every day as the children walk up to school with their friends, we pass child after child sporting an armful of bracelets made from these brightly coloured elastic bands.  Mike and I even have our own growing collection, consisting of bracelets and rings made by both G and M, in a variety of colours and patterns.

For the uninitiated amongst you, and I know there will be a few, you can create a range of unique jewellery, or charms, or just about anything else you think you might like, from relatively little.  All you need is:

one of these....

one of these….

...a lot of these...

…a lot of these…

 

 

 

 

 

 

 

…a vivid imagination and an endless supply of patience.

From the simple single-loom bracelet (where we unwittingly started before I knew that each pattern had a name) to the Starburst and the Inverted Fishtail, my children have been kept occupied for hours designing and making a constant stream of new creations for us to admire.  I have discovered loom-bands lurking in unexpected places and have had to think on my feet to enable emergency repairs when, at the last moment, a previously undiscovered fatal flaw threatens the final piece of art.

Just some of the children's creations

Just some of the children’s creations

I love this latest craze.  It’s not prohibitively expensive as you can pick up a bag of 600 bands and 24 s-clips for under £1; it appeals to both boys and girls, with M and his friends spending time during their mid-morning or lunch-time break to teach each other new techniques; and my pair are spending time after school to work on their bands together, rather than spending the time arguing.

Even better, it is proving to be a great way for M to hone his fine motor skills, which is such a critical part of the occupational therapy for his dyspraxia.  Putting the bands onto the loom is tricky and he has to focus on what he is doing to make sure they go in the right places.  M has also taught himself how to make some of the different patterns using just his fingers, which is really challenging the strength and mobility of his fingers and hands.  We’re yet to see whether this activity improves his pencil grip and his motor skills, but I’m grateful we’ve found something he loves to do which should prove to be extremely beneficial.

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Musical interlude

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“Music expresses that which cannot be put into words and that which cannot remain silent“

                                                                                                                             – Victor Hugo   

Everybody needs a release for the stresses and strains of day-to-day living.  For some it may be sitting down in front of the television with a large glass of something cold, for others it could be something more active to challenge the body to see just what they can achieve.  For me, there are three things guaranteed to lighten my load:  a good book; a successful bake; and music.

piano

For as long as I can remember, music has been a huge part of my life.  When I was growing up, my parents always said they knew when I was finding life tough because the music would slowly disappear from my daily routine.  I would no longer sit at the piano and sing, until eventually that dark cloud would pass and I could let the music back in.  It is amazing to me how certain songs or tunes can evoke powerful memories and the emotions come rushing back.

clarient These days, whilst the piano sits proudly in our sitting room as an important member of our family that I cannot imagine being without, I rarely find the time to bash out a tune or two.  All too often, I find myself surrounded by small children who want to play alongside me, but who don’t have the patience to allow Mummy to teach them the basics.  However, despite a certain reluctance to put in much practice at home, both G and M have chosen celloto learn instruments to play.  We were recently treated to the school summer music concert, which saw both children playing solo pieces, though I’d be hard-pressed to say who had the greater look of concentration on their face – G with her clarinet or M with his cello.

I am delighted that both G and M love to have music in their lives, a fact that I like to attribute to my incessant playing of specially selected compilation albums during both of my pregnancies.  They both listen to CDs at night to help them settle to sleep and we almost always have a CD playing in the car, even for the shortest of journeys.  I maintain that there is a song for every occasion and have been known to coax M out of the darkest of moods by my rendition of any song that springs to mind, often with a slight change to the lyrics to suit the situation.

My biggest musical passion is, and always has been, singing.  Over the years I have had the opportunity and privilege to sing with some wonderfully talented musicians, from my competition-winning school choir to the history-making Cathedral choir and many more along the way.  I have sung with women-only choirs as well as mixed voices and have had the heady experience of performing on my own in addition to singing with groups that have varied in size from less than 10 to over 200.

choir

My current choir is a wonderful group of anywhere between 10 and 20 ladies, who meet weekly to share our love of music.  Each Tuesday I abandon Mike and the children for an hour’s worth of music, laughter and the most amazing friendships I could imagine.  This group of ladies bring a smile to my face without fail and this week’s rehearsal found me giggling so hard that I couldn’t get any semblance of a note out of my mouth.  I was transported away from the week’s dramas with M and instead could just enjoy some time without that pressure overwhelming me.  No matter what the song, we have a great time and it’s been a pleasure to see the choir grow over the last couple of years.  Sometimes the lyrics of the songs really strike a chord and help me express something I had no idea how else to explain.  At our recent concert, one of the other choirs performing sang the song “There’s a hero” by Billy Gilman which really spoke to me of our journey with M and how I feel about our family.  If you don’t know this song, you can listen to it here.

 

 

The Battle is won

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battleThis has been a surprisingly difficult post to write.  I’ve found it challenging to give the details of our progress over the last 4 months following my formal complaint to our local hospital about the poor treatment we received when we were there earlier in the year, without it sounding either overly clinical or emotional beyond belief.  I’ve finally resorted to bullet-point format as the steps we’ve taken have been an important part of our journey with M that I want to share, but they don’t need any unnecessary waffle in the re-telling.

  • 24-Feb-2014: Write a formal letter of complaint to the Patient Advice and Liaison Service (PALS) based at our local hospital, giving details of our appointment, what happened whilst we were there and our areas of concern regarding the care they’re refusing to offer to M.
  • Mar-2014: I also write to our local MP asking for his help in getting local hospital support for M and giving brief details of our poor experiences to date, including a copy of our formal complaint and my blog-posts, so that he has all the relevant facts to hand.
  • Mar-2014: Receive an acknowledgement of my complaint from the hospital, who advise they are looking into the matter and will send a formal response by the end of April 2014.
  • Mar-2014: Our MP’s secretary calls from Westminster to express their dismay at learning about our experience and to offer an appointment at his next local surgery to discuss the matter further and to see how he can usefully support us in our quest to get local input for M.
  • Mar-2014: Receive a copy letter from the General Paediatrician we saw in February giving details of the appointment and what next steps they suggest are followed to help M.  Given the date of the letter and the way it is written, it is blatantly obvious that it has been written with my complaint in mind and does little to reassure me that this medic will be fighting M’s corner going forward.  The letter stresses that they are concerned about our request for shared care, but that they will refer M to one of the gastro consultants based at our local hospital to see if he will help.
  • Mar-2014: Same day that we receive the letter from the last doctor, I meet with our MP to seek his advice.  He listens with a sympathetic ear and immediately offers to do whatever necessary to ensure M is given the chance to receive local support as well as the care from GOSH.  In the light of the letter received, he proposes that we wait to see what the formal response from the local hospital is and whether the referral is successful or not. He also asks that I keep in touch with his secretary and let her know how things progress.
  • April-2014: A month passes without much movement on either the complaint or the referral front.  I contact our GP to ask him to also refer M to the gastro consultant as I am still lacking confidence that the hospital doctor will do a favourable referral given the nature of my complaint.  During this wait, we have a planned appointment at GOSH and I am able to discuss with them whether they would support our request for shared care. The gastro team is very supportive of our request and advises that they usually recommend that a general paediatrician is the point of contact locally to avoid any unnecessary conflicts concerning M’s treatment.  However, given our local’s apparent reluctance, GOSH agree they will discuss M’s care with anyone in the local hospital.
  • April-2014: We finally receive a reply from the Chief Exec, offering his apologies for our poor experience as well as giving me their findings about the complaint.  He also offers a meeting with both the gastro consultant and a member of the Senior management team at the hospital to see how we can take M’s care forward.  There is some confusion as to who will schedule this appointment, but a series of phone-calls on my part and a very helpful admin assistant at their end means that the appointment is finally organised for June.
  • May-2014: I receive a follow-up email from our MP asking how things are going and reminding me to keep him informed of any changes in our situation.  I’m delighted to be able to inform him that we’ll be meeting our local hospital at the beginning of June and agree to let him know how that meeting goes.
  • June-2014: The day finally arrives and Mike and I head off to our local hospital to meet with members of staff to discuss M’s needs, having left a poorly M with Mum for the duration.  Our aim is to get our local to agree to having “shared care” with GOSH, so that we don’t have a repeat episode of our Christmas hell with a M who desperately needed admitting for treatment and nowhere that would take him.  The consultant we meet is delightful and we’re thrilled to learn he worked at GOSH for a number of years and, even better, has worked alongside M’s consultant there.  He instantly agrees to look after M on a secondary care basis, dealing with our existing issues with recurring constipation/impaction and any emergency situations which may arise.  The management team has no choice but to go along with his suggestions and we agree on a system that should work well for us all and will ensure that M gets the very best care at all times.  The meeting ends with a follow-up appointment with the consultant 5 days later to deal with the current bout of impaction that M is suffering.

champagneIt has not been an easy road to follow and the number of letters, emails, phone-calls and late night discussions that have been flying around is huge – BUT we did it.  We’ve got secondary care for M at a local level and a positive way forward for the next few years, which is everything we wanted and which I hadn’t dared to believe was possible.  Of course, we still need to see how it all works outs in practice, but the first signs seem positive and we know we’ve got at least one consultant on our, and M’s side.