Category Archives: General

To whom it may concern

Dear Local Hospital

28 years ago, your specialists saved my life.

My family and I owe our gratitude to those skilled doctors who were on duty the night of my 9th birthday, when I was admitted perilously ill and closer to not making it through the night than my parents could have imagined. Their wonderful care brought me back from the brink as my Type 1 diabetes was diagnosed and they supported me for the next 11 years of my life. It is not ridiculous for me to say that I owe my life to you and had every confidence that when Mike and I started a family of our own, we could entrust the health of our children to your care.

2 and a half years ago, your consultants told me that there was nothing wrong with my son, other than a minor complaint he would grow out of in time. Your doctors left me questioning my instincts and made me feel that they viewed me as a neurotic mother. They even queried why we, as loving parents, would consider putting our child through an experience as horrendous as an endoscopy, when it was obviously not needed. Mike and I began to doubt our judgement and, at breaking point and in desperation, we took our child and walked away from your care.

Our wonderfully sympathetic GP listened and sent us to one of the top Children’s Hospitals in the world for a second opinion. At our very first appointment there, we were told that he was a very ill little boy, but that they could help. They have diagnosed a chronic condition that he will probably never outgrow, a condition that has changed his life. For 2 years, we have juggled our family’s lives to make the regular and necessary trips to London to search for answers and to work out how to return our son to better health.

Six months ago, our son was struggling with new symptoms and GOSH requested a test to rule out any infections in his system. A simple test that, due to its nature, needed to be carried out locally and our GP readily agreed and sent off the sample with the appropriate paperwork. Within days, you replied that you wouldn’t do the test due to funding and suggested that if GOSH wanted the test done, then we should travel to London for them to carry it out. It was with a sinking heart that I accepted this decision and vowed silently that I would never willingly bother your hospital again.

Five months ago, he needed urgent abdominal x-rays and I reluctantly agreed to attempt a referral to your hospital for these. To my surprise, you agreed and once again I was reminded of the competence and compassion of the dedicated people who work there as they cheerfully showed my inquisitive child the x-rays of his poorly tummy. A tiny seed of hope began to sprout – maybe we could develop a relationship with you that would put my son first.

Two months ago, we were prepared to give you another go. GOSH wanted him to be admitted to you for the extensive bowel prep he needed prior to his scopes, due to the chronic constipation that had been identified over the summer. I was willing to see if things had improved, now that we had the “big guns” at GOSH involved. You let us down again. I don’t know fully the conversation that happened between your gastro team and the team at GOSH, but you refused to admit him and instead we had to face the upheaval of a week away from home to make sure he got the care he needed. That tiny seed of hope had obviously been trampled on thorny ground.

A couple of weeks ago, I noted anxiously that he was showing some signs of chronic constipation once again and our best efforts were woefully ineffective. GOSH advised that he needed to be admitted before Christmas for another bout of heavy duty bowel preparation to clear his system and once again suggested we tried you. Once again, our stalwart GP sent an urgent referral across to you and once again, you refused to take him. This time you insisted that you wouldn’t even consider a referral sanctioned by GOSH unless he was examined by a GP first, so we did as asked, got him examined and re-sent the referral.

We are now nearly 3 weeks on and the best you can offer is an initial assessment in February 2014. If this is your response to an urgent referral, I dread to think how long a child might need to wait for a so-called non-urgent one. Our GP has been fantastic and can’t do enough to support us. Their admin staff are searching high and low for any possible alternatives for us and making phone-calls that are definitely above and beyond their call of duty.

You have been fantastically dreadful and are refusing to budge on your decision.

I understand that you are busy. I understand that your beds are full of other sick children. I understand that you feel you don’t know my child any more and are reluctant to offer him treatment based on the recommendation of other health professionals.

BUT, you are failing a 7 year old child.

A child who is in constant pain that waxes and wanes to an increasing level every day. A child who wakes in the night crying because of the pain in his tummy. A child who needs medical intervention now, so that the problems don’t multiply and escalate in the lead up to Christmas. A child who is at emotional breaking point and desperately needs some help. A child who doesn’t understand why I can’t make him better and why you won’t help.

GOSH is helping as best they can and is working alongside our GP to prescribe a series of stronger laxatives for us to use safely at home. The problem is that we won’t know for sure whether they’ve worked or not and will just have to keep trying during the festive season. What’s more we’re back at GOSH in the New Year, the best part of 6 weeks before you’ll see him and I’m left wondering what to do for best.

We’ve been told that we need a local paediatrician to be involved in his care. Someone we can liaise with when things get this bad and who can help us get the local care that our child needs. I’m caught between a rock and a hard place. I don’t trust that you will give him that help and support and yet we can’t be dependent on continual telephone consultations, especially when we know local input would be less of a strain on us all. Frustratingly, I don’t have options. I know just how excellent you can be and yet the last few years have been one disappointment after another. The best alternative to you is in Wales and we can’t get there because of NHS funding policies. We’re caught in a political trap, where everything comes down to money, or the lack of it, and postcodes; and everyone loses sight of the most important thing:

That at the centre of it all there’s a 7 year old boy who just needs someone to help him feel better.

A Duo of Birthday cakes

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As this year was a milestone birthday for G – her first in double figures – I wanted to bake her a cake she’d love and remember for a long time. Some time ago, I had seen this post by fellow allergy-friendly blogger, The Free From Fairy, and had duly filed away the information in the depths of my memory ready for the right occasion. I loved the idea of creating a cake for G that would be as unique as she is and would have that often elusive wow factor too.

The morning before her party dawned and having bought every colour of icing under the sun and ensuring I had enough supplies of all the key ingredients, I started to bake. In an attempt to make the cake extra-special, I decided to sandwich together layers of chocolate cake as well as plain sponge and used the tried and tested recipes I had developed earlier in the year. The chocolate cake was perfect, but I wasn’t happy with the plain sponge layers as they were too soft in the centre to allow me to successfully cut and stack the cake as I needed. I desperately searched for an alternative recipe and quickly found one that I tweaked according to the new principles of allergy-friendly baking that I have learnt this year. This second Victoria sponge worked brilliantly well and has now been added to my allergy-friendly repertoire.

With cakes baked, layers trimmed and stacked and my icing ready, I attempted to construct G’s rainbow pinata cake. I filled the hollow with a selection of G- and M-friendly sweets before struggling to cover the structure with icing, ready for the final decoration. I have to be honest and say that I wasn’t totally happy with the end result. I found it hard to create the stability needed using an “everything-free” sponge cake. With hindsight, I wish I had assembled the cake layers whole, rather than trying to create the arch of the rainbow as I think the outcome would have been even better. All that being said, G and her friends loved the cake and were thrilled to discover the pinata-effect of the sweets hidden away in the middle of each slice.

Of course, me being me, I wasn’t satisfied with just one cake to celebrate such an important occasion and once the party was over and done with, I set to finding the perfect creation for the big day itself. My inspiration for this second cake came from the amazing book, “Cupcakes, cookies & pie, oh my!“, which had been part of my recent leaving present from my job. G and M have spent hours drooling over the wondrous creations featured between those pages and I determined to create a cupcake piece of art just for G. I now have several great cake recipes to choose from, but stuck to our new favourites of Chocolate and Victoria sponges, though I ambitiously attempted to marble these together for the cupcakes.

The challenge this time round was that I needed to bake the cakes, ice and finish the decorations all in one day. Usually I bake the day before and then spend the evening before the party finalising my ambitious decorating plans, but with G’s birthday falling on a Friday, I had to do it all whilst the children were at school. Cupcakes and 8-inch cake baked, I started to prepare the icing, which needed carefully combining to ensure I had the final effect I wanted. Everything ready, I put all the component parts together and perused the final masterpiece. G had fallen in love with the cupcake peacock in the recipe book and I have to say, it has quickly become one of my favourite bakes too. Needless to say, the birthday girl was delighted and it tasted pretty good too!

A Decade of Parenting

Perfecting Christmas stuffing

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With Christmas now less than a mere 3 weeks away – and counting – our preparations are in full swing. Christmas lists have been created; letters to Father Christmas written; Christmas cards written and very nearly sent; presents bought, wrapped and squirreled away until the tree is up; and my attention has now turned to the small matter of the food.

Courtesy of mirror.co.uk

A couple of weeks ago, I was given the job of cooking a Sunday roast for my Aunt whilst she was staying with Mum. As I prepared the chicken and veg, I felt a sudden desire for stuffing to accompany the meal. I have fond memories of delicious home-made stuffing on Sunday lunch-times as a child and realised, with a pang, that G and M would have no such recollection due to their food allergies. As a family, stuffing disappeared from our table two and a half years ago when M first started on his MEWS-diet. It has made the occasional reappearance at Christmas for us adults, but never in a M-friendly format.

Inspired by the pleasing aroma of chicken seasoned with sage that was drifting from the oven, I decided then and there to find a recipe for stuffing that I could tweak to meet G and M’s food requirements. I sourced a vegan recipe for Sage and Onion stuffing and set about pulling the necessary ingredients from my Mum’s cupboards to start the mixing process.

M helped create the perfect breadcrumb

Despite my fears that this would turn out to be an unmitigated disaster, the final outcome was delicious. Sadly, I was unable to convince G to even try a tiny morsel, but M set to with gusto. He enjoyed the flavours, though he complained it contained too much onion for his tastebuds. My final recipe can be found here and I am hoping to add recipes for other varieties for Christmas as I try them at home. It was a great result for a Sunday morning’s work and I’m looking forward to tweaking more recipes to accompany the Christmas turkey. The only question now is which one to adapt first – Chestnut, Sausagemeat, Cranberry or maybe all 3?

Unfortunately, I forgot to photo the final product and we ate the lot, so you’ll have to be satisfied with a photo of the pre-cooked version!

A Pizza Express birthday

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The first day of December heralds the start of the busy season for most, but an especially hectic time in our household. As well as the much-awaited day itself with all the associated celebrations at school, work, choir and church, we also have to fit in a 10^th birthday and a wedding anniversary. This weekend we got the ball rolling in fine fashion with an early birthday celebration for G.

Whilst G is most definitely a December baby, this year other commitments near her birthday led to my decision to throw her party early and sneak it in at the end of November instead. The first discussion was about the format her party was going to take. G was keen to combine cooking or baking with a sleep-over. I was less keen. The prospect of organising a group of near 10 year-olds (and two 7 year-old boys) to prepare, cook and possibly decorate a selection of M-friendly foods lacked appeal. Add in M’s inability to settle and sleep at the moment and I could see that it was more likely that full-scale battle would break out, rather than the joyous birthday celebrations G had in mind.

Thanks to some wise words from Canadian friend F, I found the perfect solution – a pizza-making party at Pizza Express. Now I appreciate that throwing a pizza party for a child with wheat- and dairy-intolerances and her multiple food-allergy suffering younger brother sounds somewhat off the wall, but thanks to the gluten-free menu introduced by Pizza Express earlier this year, we knew it was a viable option. We discussed our requirements with our local restaurant and were reassured that both children could participate fully and work around their dietary restrictions.

The date was duly booked, invites sent, travel arrangements made and finally the day dawned. Following our prompt arrival at the restaurant, each child was given an apron and hat to don before their starters of garlic dough balls and a side salad were served. Thanks to the information provided by Pizza Express, I was fully equipped for all eventualities and the chef was able to lightly toast 4 slices of M-friendly bread, which was served with garlic butter that I had prepared at home.

Next the task of making the pizzas themselves. G, M and their friends were given a ball of pizza dough each and were then instructed in the art of rolling, pressing out and filling the pizza pans. The children had varying success with their pizza bases, but eventually, after a couple of false starts, everyone had a base to be proud of. They were then given a selection of toppings to add before their pizzas were baked in the ovens. G and M were able to take full part in this, preparing pizzas for Mike and me to enjoy.

Stretching and fitting the dough to the pan

Adding the GF tomato sauce to the base

Once these pizzas were ready to be cooked, G and M were then given the opportunity to make their own lunch. Our party host was fantastic and explained just how Pizza Express make sure that their GF options are kept safe from the risk of cross-contamination in their kitchens. The GF pizza bases are pre-made and kept in separate storage as is the GF tomato sauce for the base and they use different pizza pans to cook the GF pizzas, which are easily distinguished from the normal ones. I had brought our own supplies of grated goats’ cheese for G and chunks of Violife vegan cheese for M, which is both dairy- and soya-free.

G’s with goats’ cheese and ham and M’s with black olives and Violife cheese

We finished the meal with a small portion of ice-cream with various toppings they could add at their discretion. Once again I had been able to bring with me a tub of Booja-booja chocolate ice-cream for G and M to enjoy and was thrilled to discover that the Pizza Express toffee sauce was safe for them too as the party host had made the effort to check the detailed allergy listing for all their products and could reassure me that it was safe.

A game of “Pin the moustache on Paulo” entertained them whilst the pizzas were cooking

All the children had a wonderful time and we were hugely impressed by the attention to detail that PIzza Express makes to ensure that their allergy-friendly options remain safe, even down to serving G and M’s pizza on separate platters to once again ensure no cross-contamination occurred. It was a real treat to be able to offer a “normal” birthday experience to G and for them both to enjoy the birthday celebrations with their friends.

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

Celebrating tiny lives

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I’ve discovered this weekend that blog posts are a bit like buses. You wait ages for an idea to come along and then suddenly you get 2 or 3 at once. Having dipped into a mild panic that I had nothing useful, or interesting, or witty, or, indeed, anything at all to write about this week, suddenly I was overwhelmed with a plethora of possibilities all at the same time. Despite the temptation to write manically today, I’ve decided to pace myself and keep them as separate pieces and feel confident that I can keep myself, and hopefully you, entertained for a little while longer.

Unbeknown to me, yesterday, November 17th, was World Prematurity Day. This day seeks to raise awareness of the 60,000 babies who will be born prematurely in the UK this year. Every premature arrival is fraught with panic and anxiety, no matter what the outcome. The new parents are left in a state of panic as they prepare for the arrival of a much loved child and wonder what new challenges they will face in the days, weeks, months and even years to come.

Both of our children were born prematurely.

G is our “technical” preemie. She arrived just over 3 weeks ahead of her time, evidently anxious to celebrate Christmas as soon as she could. thereby just about falling into the premature category. She was a healthy 8lbs and was born after a relatively easy c-section – oh and 2 days of induced labour, which was not so relaxed. She was able to stay with me in the recovery room for about an hour after birth before her blood sugar levels dropped and she was carted off to SCBU (Special Care Baby Unit) for monitoring. Two days later, she was stable enough to be back on the maternity ward with me and within a week, we were back home as a new family of 3. As I’ve said before, my pregnancy with G was relatively smooth, my T1D (diabetes) was well-managed and we had no real concerns about her health whilst she was on SCBU. Despite the sudden decision to deliver her ahead of schedule due to some possible problems with my placenta, G was a healthy and happy baby.

In comparison, M came crashing into our world after 7 very tempestuous months and with an accompanying birth story that still causes shivers to gallop down my spine. He was not dangerously small, an extremely healthy 5lbs 12.5oz at 7 weeks premature, but he wasn’t breathing when born and was whisked off almost immediately to NICU (Neonatal Intensive Care). I have no clear memories of M’s birth other than the fear that pierced my wandering consciousness as the doctors resuscitated him and the look on Mike’s face as he rushed off to NICU with M, trusting my recovery to the medical staff in theatre.

In both cases, it is thanks to the hard work and support of the dedicated staff in SCBU and NICU that we came home confident that we could care for our preemies. Against the odds, M was discharged just 3 weeks after his birth and a full month ahead of what everyone had expected. We spent time on ward with parents whose children had arrived even earlier, were born even smaller and were struggling even more. Of course there were moments of extreme heartache, but the staff were relentless in their determination to give our preemies the best start in life they could have and made every moment of a difficult time, just a little more bearable.

So, I’m proud to be Mum to 2 preemies who are growing up fast and to be marking their safe arrival into our family’s world. This blog post may be a day late in celebrating tiny lives, but let’s face it, it’s about the only thing that’s come late when you think about our terrible two.

A little act of thoughtfulness

Welcome to the House of Fun!

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It may seem an unlikely description of M’s week-long stay at GOSH, but we did end up having a week that was filled with fun and not just fear. I had dreaded the tedium of being confined to the ward and had managed to pull together some games and treats to see us both through. What I hadn’t anticipated were the events and activities that would be “on tap” at GOSH itself.

Courtesy of magicfree,net

Sadly M didn’t manage to get to the first of these opportunities as we were battling the interminable wait to get him admitted onto the ward on Monday morning and the rest of the week were barely able to leave his bed or the ward. However, the week we were there was celebrating “50 years of National Play in Hospital”. It recognised the hard work regularly put in by fully trained play workers, who go into the hospital setting and entertain the children who have been admitted. The launch on the Monday included face-painting, magic shows and other entertainers to give that day’s visitors an escape from the often frightening reality of being in hospital. You can read more about this special week here.

Courtesy of scouts.org.uk

Tuesday’s adventure started with a visit at 6.45pm from the leaders of the GOSH Scouts and Guides group. They had avoided disappointment by checking with the ward nurses whether there were any children that would be able to go to the weekly Scout meeting, either on their own or accompanied by their parent. They appeared at the curtains to M’s cubicle and invited him along for an hour of creativity and socialising. He refused point-blank to allow me to go with him and merrily trotted off with another child from the ward – disconnected from his drip and in a state of excitement to be escaping.

Just after 8pm he re-appeared, clutching a treasure box, leaf bracelet, sheets of word-searches, puzzles and colouring, and his new most treasured possession – his first Scouts badge. M was filled with stories of the 10 other children he’d been with, what they’d been up to and, most importantly for him, the fact that several of the others had also had NG-tubes and the news that one little girl was even “drinking her milk through it, Mummy!” Scouts is a new experience for M, but the opportunity to not stand out from the crowd because of his tube and his allergies was one he couldn’t have missed and he would have loved to have stayed another week in hospital just to go to the next meeting!

Treats number 3 and 4 both arrived on Wednesday. The first was the surprise arrival of a parcel from M’s godmother, Auntie L. She had packed a “Bored box” with an array of treats to satisfy any small boy – Top Trumps cards, a Lego Star Wars set, a magic set, 3 packs of Angry birds trading cards, a pack of silly putty and other bits and pieces were hidden inside. M didn’t know where to start, but slowly and surely he made his way through the box, which kept him occupied not just for the rest of the week, but for days afterwards too. Along with the box, M also received several Get Well cards from friends and family, which brightened his day as he loves to receive post and often moans that nothing ever drops through the door at home for him.

The final surprise for the week, was a visit from Dr Mattie, a clown doctor from the Theodora Children’s Trust. The use of Giggle Doctors in Children’s hospitals has come under debate many times, including recently in an article published by The Guardian newspaper. Whilst it cannot be denied that some children and adults are frightened by clowns – indeed, one of M’s nurses commented that the Clown doctors gave her nightmares – they cheered M’s day. M wasn’t amused by their jokes and he wasn’t that interested in the “Spot the difference” he was given, but he waited anxiously to check that Dr Mattie would stop and chat and not miss him out of his rounds, and was fascinated by the unbreakable bubbles that clung to every surface and constantly checked to see just how long those bubbles would last. Perhaps that old adage is true and laughter really is the best medicine.

He might not be everyone’s cup of tea, but he certainly made M smile.

7 years to diagnosis

Searching for an answer