Tag Archives: Christmas

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.

On the 5th Day of Christmas…

Celebrating Christmas 2016

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It may only be the second week of January, but Christmas already feels like a lifetime ago and the memories are already fading fast. December was yet again an interesting month for our family and whilst we had irrefutable success at keeping M out of hospital, we had enough other medical crises to more than meet our quota for the year. As I have already shared, December started with a huge scare about my remaining sight when I was incorrectly told that I needed urgent laser surgery to sort out the developing diabetic retinopathy in my right eye. The hugely positive outcome that in fact the diagnosis was wrong and no treatment was required was a massive relief, but those first 2 weeks of Christmas planning were overshadowed by the frightening threat of surgery that loomed over the household.

Our medical dramas didn’t stop there. Mike took a tumble from his bike back in October when he was cycling to our local train station on his way to work and has been complaining of severe pain in his left shoulder ever since. The initial thoughts were that he may have torn his rotator cuff and so was referred onto a physiotherapist who, as well as recommending a heady combination of co-codamol and naproxen to ease the inflammation and pain, made his own referral for an MRI to be done as soon as possible. Mike had that MRI at the start of December and by the middle of the month had received a letter stating that it looked like he had a possible “avulsion fracture of the greater tuberosity of the humerus“, but that it would need to be reviewed by a consultant to confirm diagnosis. That diagnosis has now been confirmed and further complicated by the onset of frozen shoulder, a common occurrence following this type of injury. Last week Mike was treated with a cortisone injection and is already beginning to feel some of the symptoms beginning to ease a little, though we have been told it could take a number of months for his shoulder to recover completely. He struggled with taking the co-codamol and a switch to Tramadol has helped massively there. Unfortunately, despite skipping a dose of the Tramadol so that he could enjoy a glass of something with Christmas lunch, the alcohol and painkiller combination didn’t really work and he spent a lot of Christmas Day asleep, which didn’t go down well with most of my family!

As for M, well he was looking forward to celebrating his big sister’s birthday at home with her for the first time in 3 years as well as taking part in all of the end-of-term Christmas activities being held at school. Unfortunately, once again his health took a nosedive as he came down with both ‘flu and tonsillitis during that last week and was really quite poorly for a few days. We knew he wasn’t well when he decided not to go to our local pantomime with us and instead stayed at home and in bed with my Mum for the evening. The necessary course of antibiotics took their toll on his system and we found ourselves taking a few steps back from our hard-won gains from the last few months. M has gone back to school recovered to generally good health and eager for the term ahead.

Despite these small hiccups to keep us on our toes, we celebrated the festive period in style. Christmas was spent with my family down in South Wales, where we were able to enjoy a refreshing walk around the nearby reservoir in fine Boxing Day tradition. Both children were thrilled with the presents they received and have been engrossed in listening to their new CDs – Olly Murs for G and Pentatonix for M – or reading their new books, as well as the inevitable time spent playing on the Wii U that was M’s main present. This last has proved to be a real opportunity for the children to work together and pool their resources as they were keen to buy a Disney Infinity starter pack with additional characters and spent a lot of time researching and budgeting before asking me to help them buy their final choices with their pocket-money. We’ve been ice-skating, saw New Year in with friends, managed a return visit to the pantomime so M could see it too, gone on walks and spent time together as a family. All in all, the perfect end to 2016.

Enjoying a little Olly Murs!

Thermos-inspired lunches

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There are 2 things that are promising to totally transform the look of M’s packed lunches for school in 2017. The first is the reintroduction of parsnips to his diet as I’m finally able to cook a crisp-like addition for his lunchbox, which makes them seem a lot more like those of his friends after a long time of feeling so very different. 9270635_r_z002a_uc1440961 The second was thanks to a somewhat last-minute Christmas present from good ol’ Father Christmas, which M is absolutely thrilled with and can’t wait to try out now that the new term has started – an individual thermos flask complete with a folding metal spoon tucked neatly into its top.

He’s been considering the matter at great length and has already come up with a long list of meals that he is keen to try out over the coming months. From pasta dishes including lasagne, to risotto and stir-fry, the options are endless, but today’s maiden meal was new-found favourite, parsnip and apple soup. This simple meal is beautifully easy to make, which is something I’m extremely grateful for now that I’m back to work full-time and every second saved cooking is a second gainfully employed somewhere else. Even better, the range of herbs and spices that I can safely add to M’s meals means that I can create enough subtle flavour differences to his soups to provide some much-needed variety and keep him engaged in the novelty of his first hot school lunches in a long time.

For the launch of our experimental hot meals at school, I made a spicy apple and parsnip soup and included a few of the Rude Health mini rice crackers that have become an integral part of many of M’s lunch and snack times. Whilst nothing can really compare to the unquestionable delight of dipping some crusty French bread into a bowl of rich, creamy soup, the portion of homemade, and safe, parsnip and apple soup accompanied by a handful of rice crackers was everything that M was longing for it to be and that meant it was a resounding success. Over the coming weeks I’m looking forward to experimenting a little more with texture and flavour and will be looking at replacing the apple with pear as well as changing the herbs added to each bowlful. Most of all, I’m hoping that M continues to be excited about the prospect of enjoying a mix of hot and cold meals during the next few months of the school year.

Giving something back

Breaking the curse

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Reaching today feels like something of a landmark moment. We’ve had our fingers crossed that we’d get to yesterday’s date without so much as a hiccup to stand in our way and we’ve not only reached it unscathed, but have surpassed it with no sign of looking back. Saturday was December 3rd and we were all feeling more than a little nervous about it. The date might not ring any bells with you, but in our household, hitting midnight on the 3rd at home felt like a huge achievement. For the last two years, that date has signalled the start of a hospital admission for M and we were desperate that history wouldn’t repeat itself for the 3rd year in a row. Of course, in both 2014 and 2015 we knew that the admissions were planned and it was just a case of waiting for a bed to be available for him, but nothing prepared us for the unlikely scene of déjà vu when the phone-call came summoning us to London once again, exactly one year to the day of the previous one.

There was no reason to think it would happen again, not least because there are no further admissions planned at GOSH and we had already told our local hospital that we wouldn’t even consider a December admission this year, but the fears of our “December 3rd curse” were there anyway. I’d like to say that the weekend passed without event, which is really what we would have preferred, but as ever in the 7Y2D household that isn’t quite the case. There have been unplanned hospital visits and unexpected procedures discussed for family members other than M over the last week, and the implications of those are still being mulled over as decisions have to be made and soon. However, most importantly, today is December 5th; M and G are at school, Mike and I are at work and that’s just the way it should be.

Now we can start to enjoy Christmas!

Christmas Countdown

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The beginning of December has finally arrived. With it comes freezing temperatures, roaring log fires, Christmas trees, pantomimes, carol-singing and, in our household, some frantic last-minute plans for impending teenagehood and a quick anniversary celebration if we can only find the time to squeeze it in. And yes, we perhaps didn’t plan things too well – can you guess that I’ve heard those comments just the odd once or twice before?

These days most children seem to expect a chocolate advent calendar as a necessary part of the Christmas countdown, but what do you do when your child has allergies and can’t enjoy something that’s the same as all their friends? M has asked if we can bake enough of his safe gingerbread cookies for him and G to enjoy 1 everyday between now and the big day itself. It is, without doubt, one of those things that always features highly on any allergy parents’ to-do list at this time of year as it takes some time to find the perfect, safe alternative, but there are some really great options out there and I thought I’d share some of my favourites with you:

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And not forgetting one for those much-deserving Mummies out there (it contains gin in case you couldn’t work it out)!

Giving young people a voice

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ypf I mentioned a couple of months ago that G has been invited to become part of the GOSH Young People’s Forum, or YPF as it’s more readily known. When I wrote that post, she was just about to attend her first meeting and was excited to see what the YPF was all about. For those of you who perhaps can’t quite remember the finer details, it’s a group of approximately 40 young people aged between 11-25, who are all either current patients at GOSH, previous GOSH patients or siblings of patients. As well as being one of the youngest in the group, G is, I believe, unique in that she is the only member who is the sibling of an existing GOSH patient, which makes her comments valuable coming, as they do, from a completely different viewpoint.

The purpose of the YPF is to improve the services provided by GOSH to their young patients, whether inpatients or outpatients and focusing on the teenage patients in particular. It is very much a two-way process, with the hospital asking for input on important issues or developments that are happening on-site as well as the YPF members developing their own projects to improve the experiences of patients and their families. man-speaker-1 Members get involved in all aspects of hospital life from inspections such as the PLACE assessment and providing valuable feedback on projects planned by hospital staff, to writing content for the TeenGOSH community webpages and helping design areas of the hospital such as the reception area, which was redeveloped in 2014. You can read more about what the YPF members have been up to through their blog here.

The Forum meets 6 times a year at the hospital and each meeting lasts for the full day, with lunch and snacks provided by the GOSH catering team. They have been brilliant at providing safe food for G, although there are still a few glitches to iron out such as making sure her lunch arrives at the same time as everyone else’s. The 2 meetings that G has attended so far have been extremely different, but overall her experience has been good and she’s keen to continue her involvement with the YPF for the time being. At her most recent meeting – the minutes of which you can find here – they really did cover a whole range of different aspects of hospital life. G has now become something of an expert on the subject of the recruitment process and was able to share what they had been told about the different areas that needed to be covered when GOSH is looking to recruit new members of staff. A professional photographer went along to take photos for the new publicity campaign to raise awareness of the YPF and its role within the hospital and G is looking forward to seeing which photos are chosen for the final published materials. They were also lucky enough to go on a couple of tours of some little known areas of GOSH, including the various sacred places that provide spiritual support for those families from a number of your-halloween-party-2014-in-paris-sizel-161421-649-420 different religions and a sneak peek at the Morgan Stanley Garden that was displayed at the Royal Chelsea Flower Show earlier this year. The particular highlight for G was the discussions held around arrangements for the teenage attendees of this year’s Halloween and Christmas parties and she had great fun inventing gory names for the food on offer at Halloween.

Cheese and Onion Skin flakes anyone?

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.

“Run, run as fast as you can…”

7 years to diagnosis

Searching for an answer