Tag Archives: Special Diets

A cake for every occasion

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We might have had Christmas, Easter and at least 2 birthdays since M first had his NG-tube, but they’ve all been celebrated without a morsel of cake passing his lips for 7 months.  He enjoyed Foxes Glacier mints for Christmas lunch, a “fake” cake for his birthday and a passable rice-flour biscuit for Easter; but we were all fully aware that none of them could possibly replace the role of cake in so many celebrations.  PV-2The harsh reality of so few ingredients has meant that even at my most inventive, a successful cake replacement has just not been achievable, but with the re-introduction of apple in the last couple of weeks, M’s dream of cake could, and has, finally been fulfilled.

It is all thanks to one of the lovely Mums that I have become friends with through FABED and whose son, under the care of the same consultant as us and who M met during his hospital stay last December, is a few weeks ahead of M with his food reintroductions after time on the elemental diet.  R and I have spent time chatting, texting and e-mailing about the boys and where we each are along our respective journeys, sharing stories and giving tips whenever possible.  Having gained the advantage of those few extra days, R has had some useful tips when it’s come to preparing food for M, the best one being this M-friendly cake recipe that I was able to try out at long last.20150626_144401

Apple purée is a popular egg-alternative, though not one I have previously used in my M-friendly baking as I have preferred to bake with ground flaxseed meal or mashed banana. With banana being a definite no for the time-being and flaxseed being low in our priorities of new foods to trial, it was finally time to put apple purée to the test. The first job was to prepare some apple purée before having to deal with the tough task of stopping M devouring it all at each and every opportunity that arose until I had a chance to actually try out the cakes. Despite his best efforts and enjoying lashings of purée with his rice pudding, there was just about enough leftover for these delicious apple and rice flour cakes.  The recipe is simple, easy to follow and perfect for anyone with such limited safe foods and, what’s more, I’m certain that it would be easy to replace any of the ingredients with an alternative that suits your particular dietary needs. The cakes are deliciously moist and have been a huge hit with M, who is asking for them morning, noon and night and are definitely a great addition to his school lunch-box.

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.

 

Tempting tempura

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I can’t begin to tell you how much I love being able to post new recipes on my blog once again.  Having a fourth safe food has really opened up some exciting opportunities for experimenting in the kitchen and I’ll be sharing the successes over the coming weeks as well as possibly lamenting the disasters.  Today’s recipe is actually one of the first I adapted when we started the process of food reintroductions and, just like my chicken liver pâté, is an old favourite harking back to the days when the children were small.  Arancini di riso, or Italian deep-fried savoury rice balls, have become a firm favourite for M’s tea and G, Mike and I all enjoy them occasionally too.

20150618_171855The key to their success lay in perfecting the tempura-style batter I wanted to use to coat them, as breadcrumbs won’t be seen in my kitchen for quite some time.  Tempura is a traditional Japanese light batter, which is typically made using flour and water, though some recipes include egg too.  I am very much a visual cook, rather than one to strictly follow a recipe and so my first few batches varied massively as I played with the quantities of rice flour and sparkling water used until I reached my idea of tempura batter perfection.  Using sparkling water makes the batter even lighter, but you can easily substitute it with cold tap water and will still end up with a delicious dish.  My final recipe has been carefully measured out and written down to share.

For me, the best bit about cooking Arancini di riso for M is that there are no rules.  Of course there’s a traditional Italian recipe, but you can add whatever you want to suit your dietary needs.  We have graduated far beyond the plain rice balls that I started with and now have numerous successes under my belt.  M’s current favourite is rice mixed with shredded chicken and cucumber and seasoned with salt, pepper and plenty of sage.  With my tempura batter recipe perfected, I have used it to cook M-friendly chicken “nuggets”, which have also been a big hit.  With the addition of apple, I’m planning to try a dessert version soon using stewed apple and some home-made and M-friendly caramel, but that, as they say, is a story for another day!

Year 6 Camp, here G comes!

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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.

Another food and an unexpected insight

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This moment has been an awfully long time coming, over 4 months and 7 food fails in a row in fact, but finally we have a fourth safe food to add to M’s repertoire: apple.  The last few months have been emotionally tiring as we’ve worked our way down the list of food challenges agreed with our dietitian and M has systematically, and holy-grailsometimes dramatically, failed each and every one.  It has felt as if that elusive fourth food was our personal Holy Grail and there were times when Mike and I both began to wonder when we would ever achieve it.

One of the complicating factors we’ve had to deal with during the food challenges has been the whole host of reactions that we’ve seen along the way.  We were never told, as far as either of us can remember, that it was possible to see so many different allergic responses to the varying foods M was trialling and we were certainly not advised that he could experience some that he’d never had before.  His severe oral reaction to sweet potato was, in many ways, the easiest one to identify, even though horrendous to see happen, as we knew immediately that it had to be an instant fail; but the others have not necessarily been so straight-forward.

complicatedOur main goal is to maintain the improved health and toileting that M has achieved since he first went elemental back in December and even though that has meant ruling out some foods that would have been great to have back in his diet, I remain firm that his well-being, both physical and psychological, is our primary concern.  At our last appointment, we discussed with both M’s consultant and dietitian our approach to the food challenges and agreed that anything that causes a loss of bowel control, of any description, has to be considered an instant fail for the time-being. These foods are not ruled out permanently – well, sweet potato is as far as I’m concerned! – and we will, without a doubt, revisit them at some future point once we have more safe ones back.

Sadly he has reacted to some of his old favourites, but he has coped admirably well with accepting the outcomes.  He still remains reluctant at times to acknowledge exactly how he is feeling and telling us about the aches and pains we know he must be experiencing, but 9 years of parenting M means that I have become highly attuned to his moods and can sense when he’s feeling under the weather.  His willingness to lose a food again at times has indicated to us that he also identifies when it’s making him feel poorly, especially when he has been prepared to fight for those that he believes he can cope with.

Never was that so true as at the start of our apple challenge.  During the first couple of days, his body reacted with hives and itchy skin, just as we saw when we first reintroduced rice and he also struggled a little with his bowel control.  However, unlike with other foods where he has reluctantly agreed that it was likely a negative response to the challenge, this time round M insisted that the fault was his for not listening to his body and responding quickly enough and that he felt he was still in complete control.

10 days on and he has proved to be right, which is a valuable lesson for us all:

We have spent years fighting for our voice to be heard when it has come to M’s health and each step of the way have been shown to be right in our concerns and our thoughts for his ongoing treatment.  It seems that now we need to start listening to what M has to say too and take into consideration his opinions and insights about his body.  Of course, at 9 he is nowhere near old enough or responsible enough to make his own choices or sway our decisions unduly, but, just as I have spent a long time arguing my place as the expert on the subject of M because I’m his Mum, now as Mum I need to encourage him to be his own best advocate and take an active and involved role in his care.  After all, that’s a key part of my parental role.apples7

And whilst I ruminate on this latest insight into M’s development, I’m eagerly gathering ideas and recipes to incorporate apple, in all its glory, into his diet.  So far, we’ve ventured little further than apple juice, apple slices and apple pancakes, but with the help of good friends, including one whose son is just a few steps further down the food challenge road than M, and great resources such as The Recipe Resource, then apple crumble, apple crisps and apple cakes are all on our horizon.

 

Feast or famine

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There are times when recipes, just like buses and blog-posts, can be hard to find and then, just when you think you’re in for the long haul, a whole host of them appear from nowhere and flood your every waking moment.  Over the last few weeks, I’ve been desperate to find some more alternatives to plain chicken and rice to tempt M’s taste buds and it is thanks to some canny suggestions from M’s dietitian, a lovely reader and even my hairdresser that this past fortnight has seen me trialling some new inventions of my own.

or-kitchen-gf1Today’s recipe is one that might not appeal to everyone, but it has certainly been a huge hit with M:  Chicken Liver pâté.  Both G and M love pâté and when they were little, I found a quick and easy recipe and regularly used to make my own.  I’m not quite sure why it didn’t cross my mind to revisit this recipe in recent months, but thanks to a throwaway comment from our lovely dietitian about the possibility of cooking lamb’s liver and kidneys when M trials lamb, Chicken liver pâté suddenly sprang to mind. I spent a productive hour or so flitting between my computer and my recipe books, searching out traditional recipes as well as some that are dairy-free and quickly came to the conclusion that, with a clever few tweaks and variations of my own, this was definitely something I could cook up for M.

20150602_182343The base ingredients are easy to source: chicken livers, oil, rice flour, rice milk and herbs and seasonings; and I think that the recipe is easy to follow.  In my latest batch, I also added the last remaining drops of the “Rice whip” rice cream I had managed to buy months ago, which gave the pâté a creamier texture, but isn’t necessary to make a spread that everyone can enjoy. The pâté has given M another fab alternative to the monotony of his daily meals and he’s currently loving his pâté “sandwiches” (rice cakes with pâté) for lunch, instead of the dry alternative.

20150610_175428Pâté perfected, it was now time to put my second plan into action and create a M-friendly version of Beef Wellington.  Sadly at the moment for us there can be no pastry, mustard, mushrooms, crepe or indeed beef, but there is chicken, chicken liver pâté, cucumber and rice and that, I decided, was more than enough.  I carefully cut into a chicken breast and created a pocket, which I filled with thin slices of cucumber and lashings of the pâté.  I coated the filled breast with a rice crumb and then oven-baked.  M tucked into it heartily last night and devoured the lot, which was just amazing to see.  So that’s another dish to add to my repertoire, though perhaps the end result was more “Chicken Kiev“, than “Beef Wellington”, a “Chicken Wellington” you might say!

 

Flatbreads and Fajitas

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It’s been quite a while since I last had a new recipe to share, but this one has become a definite favourite at home and M asked me to share photos of his “most delicious meal ever!” on my blog.  Chichen_Itza_El_CastilloWe are still stuck at 3 safe ingredients plus oils for cooking at the moment and it’s becoming more and more difficult to make rice, chicken and cucumber even remotely interesting to eat at every meal-time.  The inspiration for this new recipe came from G and her current post-SATs topic about the Mayans.  They had been looking at food in current day Mexico and she came home raving about wanting to try fajitas:

“Once M can have some more foods, then you could make him spicy chicken and find some safe wraps and then we could both try chicken fajitas.“

Her enthusiasm was catching and, as G is so often reluctant to try new flavours and ingredients, I started to wonder whether I could jump on this Mayan bandwagon and transform our staples into a version of this popular dish.  My first challenge was to find a recipe that could provide the wraps needed and stumbled across this great one for rice flour flatbread.  Deciding to not run before I could walk, I started by trying my hand at making flatbread and seeing what response it got from my discerning duo.  The recipe was easy to follow and simple enough to accommodate M’s new food needs as it just requires rice flour, water, oil and salt.  Flatbread made, I nervously served them and watched the entire plateful disappear before my eyes – an instant hit.

The original ingredients- I failed to get a photo of the finished fajita!

The original ingredients- I failed to get a photo of the finished fajita!

With the flatbread puzzle solved, it was now time to construct some M-friendly chicken fajitas for dinner.  I finely sliced some strips of cucumber, pan-fried some chicken with lots of black pepper and thyme (he’s not yet allowed to trial chilli flakes or anything spicier than green herbs) and used some of the home-made chicken liver pate I’d perfected at the weekend to add a little something extra.  He wasn’t quite sure how to put them together, so we decided on a thin spread of pate on top of the flatbread, a sprinkling of cucumber and some small pieces of chicken, before rolling the lot into a shape vaguely reminiscent of a fajita.  G added some sliced carrot and mayonnaise to hers and they both quickly scoffed the lot.  This is the first “sandwich” M has been able to enjoy in a long time and I doubt it will be the last!

NEAW 2015 – The Round-up

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Last week was a busy week.  We just about managed to pause for breath along the way and achieved far more than we thought was possible.  Having taken a couple of days off from my blog – well I thought you’d probably had more than enough of me last week – I wanted to revisit NEAW 2015 to give a round-up of all our activities:

11030831_828235363934315_6504625663623229869_oE for Educate – I appeared on local radio, there was an article in our local newspaper about NEAW and even a follow-up article this week to talk about what we did. I blogged daily and posted regular updates about our life with EGID, achieving 600 views of my blog during the week as well as numerous shares on both FB and Twitter.

D for Donate – With the help and generosity of friends, family and fellow music lovers, we raised a fantastic £260 for FABED.  Thank you so much, I know that money is going to a great cause and will make a difference to EGID families who need their support just as much as we do.

U for Unite – WE DID IT!  Mike and I survived a week “eating like M” and discovered just how difficult a challenge it is.  I was filled, yet again, with absolute awe and admiration for M’s ability to eat meal after meal after meal consisting of nothing more than chicken, rice and cucumber.  I’m also incredibly proud to be able to share with you that G also did her bit on the Friday and ate “mostly like M“, with just a little bit extra of goats cheese and fruit to keep her smiling during lunchtime at school.  It’s the first year she’s asked to join in our challenge and I’m so impressed that she managed to stick it out without a wobble.

1529734_826685834089268_6472897324569407860_oC for Change – I hope we managed to change people’s attitude to and understanding of EGID during the week.  It was great to see the hashtag #morethanfoodallergies trending across FB and Twitter because that’s the key point I wanted to communicate last week: that whilst M struggles with food, his allergies are only a very small part of a much bigger picture.

A for Awareness – We raised awareness in everything we did.  Pink ribbons adorned our clothes, pump backpacks and hair, FABED awareness bands could be spotted around our wrists and M shared his video with the world.  It has had nearly 400 hits on YouTube, which made M’s week and something that started as a small project to encourage him to communicate his feelings about his illness morphed into a fantastic tool that allowed him to actively take part in raising awareness this week.

11265424_10152776813631123_3399504883350731420_nT for Thanks – I said my thanks and expected nothing more, but received some lovely compliments back from those of you reading and sharing my blog.  I’m just a Mum trying to do the best I can for my children and not always getting it right, but it was very nice to be told that I am “…the supermummiest mummy of the lot…” especially by someone who’s not even a family member and therefore under no obligation to believe that to actually be the case!

E for Engage – It may have been the hardest blog post to write for me, but M and G proved that they could engage with their school-mates in the most impressive of ways.  M presented his video at school throughout the week and had a fantastic response.  At the end of the week, I received this lovely and completely unexpected e-mail from G’s teacher to tell me about her class’s response to what M had to say:

“M came to visit us with his presentation earlier on in the week and I was amazed, not only by the presentation, but also by his maturity and bravery.  He was just amazing and a real inspiration to us all.  G was also fantastic – helping answer some of the children’s questions and supporting M in the process.  They are both absolutely amazing – a big well done to them and your whole family.“

And that just about sums up NEAW 2015 for us, so it must be time to put our feet up for another year…well, a Mum can dream, can’t she?!feetup

NEAW 2015 – The final day

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letter_eThis has been the hardest day’s blog to write.  Inspiration has been lacking and I just couldn’t think of what to write about on the subject of “Engage“.  In an attempt to stir my creative juices, I looked again at the many daily updates, photos, videos and statistics I’ve been seeing, reading and “liking” all week, posted by many fellow EGID families on their FB pages, all in an attempt to raise awareness of the illness.  It was as I was browsing that I started to notice that many of them began, almost apologetically, with words to the effect that they were sorry to be bombarding their FB friends with these regular informational posts on the subject, but that it would be for this one week only.

superheroThat’s when it struck me.  This week, 7 days from May 17th to 23rd, I and tens of other EGID families here in the UK and across the world have been fighting hard to raise awareness of this illness that impacts our lives; and we’ve been apologising for it.  We’ve been grateful that we have been able to engage with our audience this week and we’ve almost promised to give it a rest until NEAW 2016 rolls around.  BUT the reality of EGID for us is that we don’t get that break.  We don’t get the chance to focus on it for one week only and then go back to the daily grind of school runs, workloads and running the home.  This is it.  It’s not even just a year-long commitment, but a life-long one and there’s no escape.  I can’t shut down my computer and ignore the posts. I can’t groan inwardly, grit my teeth and ride the week out, thankful that the 24th will soon be here and then breathe a huge sigh of relief that that’s it done for another year.  I don’t have that privilege.

The reason the EGID community has been trying so hard to engage with you this week is the people in our lives who struggle with this rare condition on a daily basis: our superheroes.  Their strength and courage in facing adversity is awesome and their brave smiles bring inspiration at the most difficult of times.

My reasons for engagement are summed up beautifully here by my 2 amazing children:

myfeelins familyfeelings

and with that, there really is nothing more to say.

Our thanks go to…

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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 some…many…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.