Tag Archives: Covent Garden

A Winter-themed weekend

For the 4th year in a row, I found myself not only in London, but also spending a little time at GOSH during the weekend closest to G’s birthday. Thank goodness that this year there was no admission attached to what is fast-becoming a December tradition, instead, just like last year, our reason for going was the December meeting of the GOSH YPF and with both G and M now active members of the YPF, we decided to make a weekend of it and round off the birthday celebrations in style, whilst gently kicking off our Christmas ones as well.

In the lead up to a previous YPF weekend, I was lucky enough to stumble across the Travelodge in Hounslow, which has quickly established itself as our destination of choice whenever we need to head to London for the weekend. A lot more affordable than central London prices, it is a short walk away from a secure car park and both the East Hounslow and Hounslow Central tube stations, making it an easy commute into GOSH in particular as all are stops on the Piccadilly line. This close to the end of term, we were able to take advantage of the fact that the out-of-school activities have now finished and headed to London on the Friday evening once G and M’s school day was over, and even managed a reasonable night’s sleep before our busy winter weekend began.

It started with our morning commute to GOSH, where we dropped G and M, both kitted out in their Christmas finery, for a YPF meeting filled with a whole host of activities and treats, including a hotly challenged Christmas quiz. Once the children were settled, Mike and I set off on foot towards Covent Garden and spent our day meandering the streets, exploring the shops and even managing to pick up the odd present or two as well. We stopped for a light lunch at the amazing Cafe in the Crypt at St-Martin-in-the-Fields, just off Trafalgar Square. This is fast becoming one of our favourite spots whenever we are in London as the food they serve is simple, yet delicious, they serve a few allergy-friendly snacks too and is a place I would heartily recommend to anyone looking for a peaceful break from the busyness of London itself.

Lunch done, we started our trek back to GOSH along Shaftesbury Avenue and stumbled across this group of festive, charity bike riders as we turned the corner towards our final destination. It really was a sight to behold as we were surrounded by Father Christmases as far as the eye could see and lovely to watch excited small children wave and shout out Christmas greetings as the cyclists sped past.

There was one last stop I wanted to make before we met G and M and that was at the Baileys Treat Stop pop shop located not far from Covent Garden. It was only open for 2 weeks and I was determined to take advantage of our trip and pay a visit there for a Baileys-inspired hot drink. The queue was long and it took over 40 minutes to finally get into the shop itself, though our patience was well-rewarded by the plethora of treats that was brought out to keep those waiting happy – chocolate eclairs filled with Baileys-infused cream, cups of popcorn and chocolate covered Baileys fudge and toffee. I finally made it to the front of the queue and having never tried their Pumpkin Spice version and not fancying a treat-laden hot chocolate, I decided to customise a Pumpkin Spice latte instead. I think the server was a little disappointed with my rather tame selection of “just” chopped nuts and wafer straws, but despite his best efforts, I held firm to my decision, which I maintain was absolutely the right one. However, the latte itself was incredibly disappointing and absolutely not worth the time and money I’d spent to get it. What I hoped would be a small Christmas treat for me really wasn’t and we wasted close to an hour with that detour.

However, the rest of our Saturday went according to plan and was a fantastic ending to G’s birthday celebrations. Both children had a great day at the YPF meeting and came away with some small and unexpected gifts and treats. G was really keen to have a Chinese meal for dinner and so we chose to double up M’s medicines throughout the day and then allowed him to relax his diet for the evening. Mike and I had done scouting around Chinatown during our day and we headed to the Feng Shui Inn for a few carefully selected dishes which the whole family enjoyed. From there, it was just a stone’s throw away to the Prince Edward theatre where we were treated to the delights of Agrabah, the fantastical quirks of the Genie and the addition of a handful of new songs to Disney’s Aladdin. This was G’s choice of show and I knew she’d enjoyed it when she asked at the end if we could see it again! It was an amazing production and we were incredibly lucky to see Trevor Dion Nicholas in the role of the Genie, a role he was reprising after a successful stint on Broadway.

Sunday morning saw another tube ride into London, though this time our destination was the Tower of London where we had booked an ice-skating session on the rink set up in the moat. Both children were keen to have a go at skating once again and Mike was just as excited. It took a little while for G and M to find their feet, but they were soon off and even attempting to get around on their own, away from the barrier. The session only lasted 45 minutes, but that was more than enough for all of us and M and I even left the ice a few minutes early due to the uncomfortable hire skates we were wearing. All in all, we had a fantastic and fun-filled family winter-themed weekend and it felt like a fitting end to what has been a long school term.

FreeFrom Eating Out Awards 2016

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FFEOA 16 200X200 As promised in my last blog, it’s now the turn of the second of the recently opened awards and one that I’m really delighted to be able to share with you. The FreeFrom Eating Out Awards 2016 are now heading into their 3rd year and are part of the Foodsmatter family run by the same, highly successful team who organises the FreeFrom Food Awards and FreeFrom Skincare Awards. The Awards were launched to show that creating gluten, dairy and allergen free food that would be as good, if not better, than ‘normal’ food was completely possible as well as encouraging innovation and celebrating excellence in the freefrom food service industry. Working with members of the allergy community, including website Can I Eat There?, experts and bloggers, this year the awards are hoping to find more hidden gems than ever before.

Eating out is a treat that we love to be able to do as a family and I’m always on the look-out for new restaurants to visit with the children, be they part of a chain or independent, especially when I can be confident that they can and will prepare safe food that we all can enjoy. I have already suggested some of our favourite haunts to the #FFEOA16 team and would ask you to do the same if there are any you would love to see recognised for their allergy awareness. These are restaurants who have taken on board the changes to EU legislation back in December 2014 regarding the provision of information about the presence of top 14 allergens in their dishes and, rather than continuing to complain that its cramping their style, have embraced the changes and used them to make a difference.

This year there are 8 award categories:

Cafes & teashops
Fish & Chip shops
Pubs & pub restaurants
Restaurants
Corporate hospitality and catering – venues and outside catering
Hotels & guesthouses
Schools, colleges and universities
Foods manufactured for food service

Just as with the Allergy UK Hero Awards, it’s great to see such a cross-section of eating out venues included in the #FFEOA, especially the corporate hospitality and schools, colleges and universities categories. I will be watching the progress of these awards with interest and look forward to being able to tell you the final winners after the presentation in late November. In the meantime, I want to share with you the winner of the first ever Pathfinder Award, which has been given by #FFEOA to mark the opening of the 2016 competition. The Pathfinder Award is a discretionary award for anyone, or any establishment, that is really pushing the boundaries of freefrom and thinking outside that box. The 2016 winner is Executive Chef Dominic Teague and his team at restaurant Indigo at One Aldwych Hotel, Covent Garden, for their ground-breaking work in catering for those on freefrom diets.

Last year, after a brief closure for kitchen refurbishment, the restaurant created massive social media buzz when it was revealed that it was now serving a new and entirely gluten- and dairy-free menu and had been for 3 months without anyone realising it. Dominic had been inspired by increasing customer demand for gluten- and dairy-free food and had taken the opportunity of his kitchen refurb to ensure that he could continually create culinary masterpieces in a freefrom-friendly environment. The compliments came flooding in, from regular non-allergy customers and new diners alike and since revealing the truth to the world, Indigo has seen a huge increase in the number of its bookings, which only goes to show it really can be done if only you put your mind to it.

You can find out more about Indigo and Dominic Teague’s revolutionary decision on the #FFEOA16 website here.

Getting into the Christmas spirit

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Now, you might have guessed that our recent sojourn at GOSH wasn’t the perfect lead-up to Christmas I would have planned, with more highs and lows than those promised by a seasonal episode of Corrie, but please don’t imagine that our extended stay was completely devoid of any festive inspiration. Despite the noticeable lack of anything more than a mere nod to Christmas on the decoration front and the unseasonably mild weather that meant my trusty raincoat was relegated to the tiny locker provided for all the worldly belongings we might need during our 20-day incarceration, M and I did enjoy our fair share of festive activities, which helped infuse a little Christmas spirit into our otherwise grey days.

The Nutcracker – The Royal Ballet, Royal Opera House Covent Garden:

Our first treat was the chance to see the final dress rehearsal of Tchaikovsky’s “Nutcracker” danced by The Royal Ballet at the Royal Opera House, Covent Garden. It came as a complete surprise on that first Monday morning and was one that M and I just couldn’t turn down. Last year, M had been given tickets to see “Alice in Wonderland” at what was the first visit ever to the Royal Opera House for us both and I never even imagined that this year’s admission would see a repeat opportunity. M didn’t have to be asked twice and almost immediately started the countdown to when we could leave the ward and head off in a black cab to reach our destination. Timings were such that we were only able to watch the first half as we had to be back at GOSH for M’s lunch and the first of his food challenges, but he was delighted that we got to see the battle between the tin soldiers and the rats, his favourite part of the entire ballet, and we had the best view of it from our seats in the Royal box!

Christmas decorations & crafts – Play-workers and School:

M had the opportunity to decorate, make and create a plethora of decorations and Christmas-themed crafts thanks to both the Hospital school and the tireless team of play-workers linked to Rainforest ward. Since this time last year, the school has introduced a family session on a Friday morning, which allowed parents or carers to join their child in the schoolroom for an hour to enjoy an activity together. M and I spent the first week working with Fimo to create some tree decorations, a real blast from my past as this was a craft I loved doing as a child, and the second making what I think was called a “Spanish star” from paper. The latter was beautiful and I even managed to get it back home in one piece, where it was much admired by my Mum, who asked if we’d bought it from John Lewis! When not at school, M spent a lot of his time colouring-in a huge number of ceramic decorations provided by the play-workers on ward. Armed with a technicolour array of ceramic pens, M decorated sleighs, bells, gingerbread men and chinese dragons as well as a gnome and an owl pot, all of which formed the greater part of his gift to friends and family for Christmas. Not only did these activities help us feel a smidgen of festive spirit, they also provided a great distraction for an active 9-year old confined to the hospital buildings.

Carols by Candlelight, St George’s Holborn:

After one particularly long day on ward and a much-needed break from it all, I wandered back to the hospital to be greeted by the sound of carol-singing from outside the main entrance. I had been missing my weekly choir sessions at home and stopped to listen to the strains of carols that filled the air. This group had come from nearby church, St George’s Holborn to spread a little festive cheer and offer mince pies to anxious parents, extended families and harried medical staff as they rushed through the doors of the hospital. As I chatted to some of the members, I was invited to their Carols by Candlelight service on the evening of G’s birthday and was delighted to be able to attend, although sadly M wasn’t allowed to come with me. The service was beautiful – lit by candlelight, with smiling, welcoming faces all around me and filled with a peace that I really needed that evening. I sang every carol, grateful to be able to take part in this simple act of worship that proved to be invaluable therapy to me and which brought healing to my troubled heart.

Hospital school’s Christmas activities:

As well as the wonderful crafts mentioned above, the hospital school had a series of wonderful activities planned for the last 2 weeks of term. Sadly, due to the unforeseen hiccups that arose during his admission, M wasn’t able to take part in as many as he would have liked, but those he did do, he really enjoyed. From experiencing a Victorian Christmas with the V&A museum to themed artwork with the National Portrait Gallery and the beautiful Christmas service held in the hospital chapel and which we enjoyed so much last year, there was just so much on offer. M was particularly disappointed to miss the service as he had been asked to read at it, but the necessity of Klean prep made it impossible for him to attend. However, the one activity I put my foot down about and insisted he do was the chance to once again do some cookery with one of London’s head chefs. M loved every minute of that session and came out proudly bearing a box full of goodies from chocolate cupcakes to gingerbread angels and even 2 items he could safely eat – spun sugar and an apple swan!

The Snow Ball – GOSH’s Christmas parties:

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Martha from #GBBO

Every year GOSH put on a series of Christmas parties for patients and their families at nearby hotel, The Royal Britannia. M and I attended our first Snow Ball last year after learning about it during his admission and had such a good time that I vowed to make sure we repeated the experience this year and to take some extra-special guests with us if at all possible. Despite initial fears that the unexpected need for Klean prep part-way through his admission might get in the way, I managed to negotiate with his doctors and won him an afternoon’s reprieve from the stuff so we could attend. Once again we enjoyed all that was on offer – free food and drink for those who can eat, a soft toy for every child attending and a whole host of attractions including a Formula 1 racing car to sit in and sign, cupcake decorating, various photo opportunities, face-painting, science experiments and entertainment galore. M was particularly excited to meet both Iron Man and Martha from 2014’s GBBO and I would be hard-pressed to say who he was more impressed to meet! Thanks to the understanding and support of G’s amazing secondary school, Mike was able to bring her to visit M on that day too and so she was also able to come along and enjoy the party. Both children left with an amazing goodie bag each and wonderful memories of a great day in the midst of a difficult time.

Carol singing around the hospital:

This has to be one of my favourite Christmas events of our whole admission at GOSH. On our final Sunday there, Mike, M and I headed down to the hospital chapel for their Carols by Candlelight service. The chapel was packed out with patients, their families, staff and members of the local community who had come together to celebrate this service. As it drew to a close, and we disappeared back to the ward, I spotted that later that evening a group would be singing carols at various locations throughout the hospital. Having missed the carol services at both school and our home church, M had expressed several times that it didn’t feel like Christmas as we hadn’t enjoyed the usual buzz from all the preparations at home. This seemed like an ideal opportunity to find that missing Christmas spirit and given that all 3 of us love to sing, we determined to join this choir if we could. I later discovered that this group was from All Souls church, Langham Place and the members had travelled from various locations across the greater London area to spend an hour singing carols around GOSH. We were welcomed with open arms and it was wonderful to see M take part with real gusto as he was finally free of the Klean prep drip and starting to feel a little more like himself. The choir and musicians started in the main reception area before heading to The Lagoon and then on to 2 floors of the Octav Botnar wing to serenade patients and staff alike. It was a truly magical evening and a fitting end to the tension-filed admission we had experienced so far.

The First Hurdle

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Our GOSH admission had three key stages, the first of which was to dis-impact M’s bowel and prepare him for a repeat pellet study. We knew that when the original transit study was done at our local hospital 18 months ago, he was chronically impacted and there was some debate over whether the results, that suggested his transit was relatively normal, were accurate or not. My honest opinion was that he was not struggling with a slow transit colon, but the gastro team at GOSH wanted to be certain and were more than happy to admit him for this test due to the issues we’ve experienced with our unsympathetic local hospital over the last 12 months. My instinct was that nearly 9 years of unrelenting diarrhoea meant that there had to be another root cause for his problems that was still waiting to be discovered and it would just take some persistent looking to find it.

Courtesy of ebsta.com

Unfortunately, the first hurdle – after the resolution of the whole missing bed saga – proved to be far tougher than any of us had anticipated. After his amazing courage in facing all the health and medical challenges of the past year, and despite knowing that he needed to have a NG-tube, M showed just how stubborn he can be and steadfastly refused to co-operate with the nurses who were trying to pass the tube. Wednesday evening saw 5 different nurses, 4 attempts, a flurry of unsuccessful negotiations and 1 small boy, who pulled the last 2 attempts out himself because, according to him, the nurses weren’t listening when he asked them to stop and then told them to go. Having kept the other occupants of the 4-bed bay awake until past midnight with his cries and screams, we all finally admitted defeat and decided to leave it to the next day’s nursing team to remedy the situation.

Thursday morning arrived far too quickly, with a disturbed night’s sleep for M and an uncomfortable one for me. We talked about the tube and the need to have it in place as soon as possible so that we could start on the first round of treatment, the dreaded Klean prep – a highly effective laxative that would start the process of clearing his system. M knew and accepted all the reasons for the tube, but at the heart of the matter was the fact I had a small, scared 8 year old, who had endured a great deal since his scopes last October and was evidently close to saturation point.

Courtesy of The Royal Ballet/ROH Johan Persson

Even the lure of tickets to go to see “Alice in Wonderland” performed by the Royal Ballet at the Royal Opera House, Covent Garden that very afternoon looked unlikely to be sufficient draw, but my boy’s love for all things theatrical combined with my own enthusiasm for going to see anything at the Royal Opera House eventually overcame his worst fears and won the day. He agreed to let one of the doctors pass the tube and with 4 of us holding his head, arms and legs, another distracting him whilst it happened and the doctor doing the deed itself, we finally got the tube in place. With that hurdle tackled, M and I rushed to get ourselves ready and a bag packed for our trip to the theatre. We went by taxi with another little girl from the ward and a nurse and arrived just in time to take our complimentary seats in a box before the ballet began. The performance was an amazing visual feast and proved to be a more than adequate distraction from all the tears and trauma of the morning. M loved the outlandish costumes of the Mad Hatter and we had a lot of fun trying to work out which of Alice’s family and friends were depicted by each of the fantastic characters we met throughout the rest of the ballet.

Courtesy of The Royal Ballet/ROH

Naturally, as I’ve come to expect when dealing with anything to do with M, nothing was as straight-forward as we might have hoped as we headed into that all important first full day of admission. The stress of the tube placement led to him being violently sick within 10 minutes and he spent the rest of the day retching and bringing up bile, meaning the Klean prep couldn’t be started until much later in the day. He reacted to the Duoderm, a dressing usually used to protect the fragile skin of the face by forming a barrier between the cheek and the tube and tape, which meant there was no alternative but to tape the NG-tube directly to his face. The final straw came in the middle of the night, when after I’d finally got my tired chap to sleep, the quantity of the Klean prep being pumped in at the speed it was upset his system and he woke to be sick for the second time in less than 24 hours.

By the time Friday morning came around, we were both feeling emotionally fragile and physically exhausted and M refused point-blank to move from his bed. We sat quietly on ward, with M plugged into the television via his headphones and I immersed myself in the escapism of a good book. It had been a bumpy start, but finally we were on our way.

7 years to diagnosis

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