Tag Archives: health issues

Another birthday celebration

Guess what?

Today marks the first birthday of this blog.

It seems unbelievable that I have spent 12 months writing about our experiences over the last 8 years and sharing our struggles, our successes and more than a few recipes to boot. We’ve had our highs and our lows, but with the support of our family, our friends, medical professionals and other bloggers we know we can keep on going. When I started the blog I wanted to be able to share the story of M’s life and our fight to get a diagnosis for him and the best care and support we could. My aim was to raise awareness of this rare and little known condition and I always said that if I managed to make a difference to just one other person who was living our experiences, then I would be more than happy. Amazingly in the last couple of months, I’ve received kind messages that have told me that I have achieved that goal.

A few statistics to share about the last year:

Date of first post: March 13th 2013
Number of blog posts written: 95
Number of “followers”: 297
Most popular post: To whom it may concern
Total views of that post: 220
Highest number of hits: 165 in one day
Number of recipes shared: 27
Most popular recipe: The best chocolate cake ever
Total number of comments: 218
Total number of views: 7,867

As ever, we’ve no idea what lies ahead for M, for G or for us as a family, but the one thing I do know is that I will continue to share our journey with you and every development as it happens.

Our birthday boy

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Over the past few days, we’ve been celebrating young Master M’s 8th birthday. It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast. The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up. Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

M has become a little boy with a big personality. Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football. He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years. M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset. He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods. They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

Perhaps more unusual is his flair for all things theatrical. M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4. He loves to perform and is always looking for the next opportunity to do so. His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order. M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion. No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper. He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour. He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life. Yet he nearly always bounces back and keeps going with a positive attitude. The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”. It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

Local update

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You may remember that back in December, M was referred on an urgent referral to our local hospital based on the advice of GOSH. He was suffering from chronic constipation, was in considerable pain and was losing weight as his appetite decreased. Sadly, our local hospital felt it was unable to admit or treat M and instead our only option was to treat him at home, using a strong laxative and bucket-loads of patience as he struggled to recover his health. Our urgent referral resulted in the offer of an appointment with a general paediatrician in February, nearly 12 weeks after the referral was originally made. We thought long and hard about whether we wanted to take up this appointment or not, given our previous experience with our local hospital, but we knew that local input could make a big difference to all our lives and felt that this could be our way into the local system.

February’s appointment arrived quicker than we could have imagined and we went along with an attitude of “hoping for the best, but expecting the worst”. The symptoms that M was suffering back before Christmas have disappeared and we have had the challenge of changing his diet and his medicines again in an attempt to reach a status quo with the EGID. What we hoped for was a local doctor who would listen to our concerns and who would offer us the helping hand we so desperately need. We wanted a local doctor who could point us in the right direction at the hospital and would support our search for shared care between our local hospital and GOSH for M.

Instead we got a doctor who, through their less-than-professional manner, vocal criticisms of both our GP and GOSH and obvious impatience, left us feeling let down once again. They belittled our decision to seek a second opinion when the local hospital had let us down 3 years ago and were unimpressed that we had our own point of view concerning the care given to M. They reluctantly agreed to refer us on to the gastro team at the hospital, but made it clear that they believed it highly unlikely any of the gastro consultants would willingly take M on a shared care basis with GOSH. Mike and I weren’t surprised, but we were disappointed that this consultant chose to make their opinions known so clearly in front of our impressionable and sensitive 7 year old.

Needless to say, we are not letting things drop there. We have written a letter of complaint to our local hospital and are now waiting for their response to our concerns. I am writing to our MP to make him aware of how badly M is being let down health-wise locally, to see if he will get involved on our behalf. We will persist with the onward referral to one of the gastro consultants because we remain strong in our belief that shared care between our local hospital and GOSH is something M needs; AND we will continue to fight M’s corner to make sure that he is put first and gets the support he needs.

Mr Sandman

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Sleepless nights are the bane of many new parents’ lives. You don’t realise just how dependent you are on 8 uninterrupted hours until you no longer have them. We were truly lucky with G. She was one of those very irritating babies who slept through from 6 weeks old and quickly developed a habit of 10-12 hours each night, meaning we never really suffered with early mornings either.

The first few weeks of M’s life lulled us into a false sense of security. He spent many of those early days sleeping, something that is typical of preemie babies I’ve learned. However, once we’d hit, and passed, the magical point of his due date, everything changed and not for the better. From the age of about 4 or 5 months to the present day, I can count the number of full nights’ sleep on the fingers of one hand. Actually, I don’t even need that hand to enumerate those memorable occasions because the only undisturbed nights that Mike and I have enjoyed in the last 8 years are those when M has been staying with my Mum.

Last year, we thought we had finally turned a bit of a corner with M’s sleep habits. We had persuaded him, through the lure of sticker charts and a much-desired Lego Millennium Falcon, to start going to sleep in his room. His bedroom was revamped for his birthday to match his passion for everything Lego Star Wars and became a place befitting of his 7 year-old status. I won’t pretend that it was all plain-sailing, but we gradually moved away from the constant shouts downstairs for food or stories until he was finally falling asleep in his own bed, albeit close to 11pm most nights. His 2am visits into us also slowly started to disappear and it really felt like the sleep issues were on their way out.

Unfortunately, we were once again counting our chickens too soon and, in the middle of 2013, everything reverted back to the old “norm” with a bump. I can only assume that a big part of this dramatic shift was the unexpected decline in M’s health that had started in the April. Since then, M has been almost completely unable to fall asleep by himself and spends almost every night pleading with us to “settle” him at bedtime. It doesn’t matter has much settling we do, within minutes of us leaving him tucked up in bed and heading downstairs for our own dinner or jobs to do, M is up on his feet, singing and dancing to whichever CD is that night’s pick. The rhythmic thuds that accompany our evening meals are a constant reminder of just how awake he is, but he seems unable to switch off and relax.

Around 9.30pm the questions start floating down the stairs: “Can I have a snack because I’m starving?”, “I need a drink – I’m dying of thirst” or, my personal favourite, “What time is Mummy coming to bed?” It is this last request that inevitably traps me between a rock and a hard place. If I go upstairs after about 10.15pm, M will climb into bed beside me and be fast asleep within 10 minutes; BUT any attempt made too early is a complete disaster. M will just lie next to me, hunting for Odlaw, Wenda and the rest of the Where’s Wally? gang, chattering away and almost without fail, I will be in dreamland before him.

Since Christmas, things have been getting progressively worse and Mike and I are both almost at wits’ end. This last weekend was spectacularly bad on the sleeping front and we’ve had to do some quick thinking to try and get things back on track. One of the biggest complaints we have from M is that he is hungry, regardless of how much he’s eaten throughout the day. To avoid a repeat of Saturday’s demand for a snack at 11.45pm, we have introduced a relatively substantial snack for M before he goes to bed. As soon as both G and M are washed, in their pjs and otherwise ready for bed, they can each select a snack or two to have, along with a mug of either hot chocolate or hot milk and honey. We tried this for the first time last night and appear to have scored an early success with no subsequent food necessary before he went to sleep.

Secondly, we’ve given M an incentive to improve his behaviour at bedtime and reduce his demands on us. We’re off on a big family holiday later this year and both children are keen to earn some spending money for whilst we’re abroad. M’s modest request for £5.90 for the 3 weeks has been judiciously upped a little and he can earn stickers (yes, we’re back to that damn reward system once again) for working hard to achieve this target. The stickers are awarded retrospectively, so last night’s bedtime routine and today’s behaviour will be assessed at snack-time tonight and stickers given accordingly.

Draining as all this is, I have been able to draw some comfort from discovering that we are not the only EGID family struggling with sleep issues at the moment. Another Mum recently posted about her anxiety over her child’s sleeping on the FABED forum and asked for help. Within a relatively short space of time, replies flooded in from across the country, from other parents who have been there and who are quite probably still dealing with it. I found it particularly interesting to read the perspective of a now adult EGID-sufferer, who was able to explain to us all exactly how the condition can impact on the body and therefore on sleep.

So, for all you parents out there who are longing for a good night’s sleep, believe me when I say that I feel your pain and will be hoping that the sandman visits your homes sooner rather than later tonight.

New year, New plan

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The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team. Mike and I had our list of queries drawn up and were determined not to leave without some answers. Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer. It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner. My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds. We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all. I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy. This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it. We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months. He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet. Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation. We’ve now got 2 more to add to the daily regime: Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition. If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones. So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all. I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian. She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms. We agreed to tackle the 2 that he has complained about when suffering from reflux. His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed. So, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries. Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped. We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet. It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.

Eating my words

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For some time now, we’ve been seeking some emotional support for M as he struggles to come to terms with his condition and the impact of a restricted diet and the associated health issues on his day-to-day living. As the result of a GOSH recommendation, we sought a referral to our local CAMHS service to see if they could offer any counselling to M. We also hoped that we would have access to some family support as we all find it difficult at times, G especially, as she deals with her own reactions as well as M’s mood-swings.

Courtesy of connectsociety.org

Sadly, our experience of CAMHS has been less than favourable. The worker we saw had not read M’s notes, didn’t understand why we had gone to GOSH for treatment and had no idea that he had been diagnosed with a chronic bowel condition. She talked about using sticker charts to encourage him to use the toilet and failed to recognise that, in M’s case, it wasn’t that he wouldn’t use the toilet, but rather that he couldn’t. At our last meeting, Mike and I sat in disbelief for nearly an hour and a half whilst she repeated her theory that a reward system would be the answer to all our woes; and our jaws hit the ground when our repeated comments about his “diagnosed chronic bowel condition” finally sunk in and she pondered whether maybe she would benefit from taking a look at the letters written by his consultant from GOSH.

In the letter that followed, she discharged him from her care and suggested that we instead got a referral to our local NHS Bowel and Bladder clinic for their input. I was unsurprisingly sceptical, having spent some time at one when G was suffering from her own bowel problems a few years ago, and feared that the ubiquitous zticker chart would form the crux of their treatment plan. However, I have long since come to the conclusion that the only way to get the help that we need, is to agree to whatever steps the health professional concerned recommends and tick those boxes to prove that we really are taking the situation seriously.

And so this past week saw us attending the local Continence clinic, which runs once a month in our GP’s surgery. I was brutally honest with the nurse we met with, T, telling her within minutes of sitting down that I was not expecting much to come from our meeting. I apologised for my negative attitude, but admitted that I felt I needed to be honest, so that she understood the position we were starting from. At this point, my expectations were low – and about to be blown out of the water!

T was not phased by my comment, but instead admitted that she too was uncertain whether she could help M or not, but having read his notes thoroughly and all the letters from GOSH, she was keen to offer whatever help and support she could. I knew at this point, that this meeting was going to be a very different one from that I had been anticipating and the following 45 minutes proved this to be very much the case. We talked at length about M’s history, his diagnosis, the experiences over the last 9 months and the problems we have recently faced.

http://www.eric.org.uk

She expressed no surprise that M has been struggling emotionally to come to terms with his life as it now is and discussed with me about how isolated M must be feeling. She pointed me back in the direction of the wonderful charity, Eric, which offers support and advice about childhood continence issues. Not only do they have a telephone helpline manned by knowledgeable and sympathetic volunteers, but there is also an area specifically designed to enable children to discuss their toileting problems with others in the same situation should they want. We had made extensive use of their website when struggling with G’s problems, though we had never thought to look at the children’s area with either G or M.

Most importantly, she suggested a change to M’s prescribed laxatives, but was insistent that I discussed her proposals with our gastro team at GOSH, who fortunately we were seeing the following day. My biggest fear was that she would be as reluctant as our local hospital to get involved in M’s care and would not be willing to discuss him with GOSH – nothing could be further from the truth. T reassured me that she would work alongside GOSH, and us, to make sure that M is getting the very best care and would help us make those little adjustments to his medicines that feel so complicated when I’m discussing them over the phone to London.

Courtesy of http://www.flickr.com

We still have an initial assessment with our local paediatric team in place for February, and it would be fantastic to have them on board too, but I no longer feel so dependent on that relationship working out this time round. We have found instead, an even more local solution to our need for support and I have never been so glad to be left eating my words and being proved wrong.

To whom it may concern

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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 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

7 years to diagnosis

Searching for an answer