Category Archives: General

7 things to do in hospital when you’re 8 (& 3/4)

Two weeks in hospital is long enough to challenge the sanity of any adult, let alone that of an 8-year-old who is used to being on the go all the time. As well as his daily visits to the hospital school, M was fortunate enough to have a number of other activities to take part in, which helped wile away the ever-lengthening hours. I don’t know how many of these same opportunities, or others like them, are available at children’s hospitals across the country, but this is a selection of some of those M chose to do during his stay at GOSH:

Pets as Therapy – We were lucky enough to have 3 separate visits from 2 of the amazing “Pets as Therapy” dogs, Molly and Woof. These charming animals are specially chosen for their gentle manner and make regular visits into hospitals, care homes and special needs schools to bring a great deal of comfort and love to those in the greatest of need. I wrote a blog post not so long ago about just how much calm and comfort M draws from our cats at home and I saw the same things happening as he was able to pet and cuddle both dogs in his own space in hospital. G was lucky enough to also have the chance to meet and fuss Molly as she visited on both Saturdays whilst Mike and G were visiting, and both children were encouraged to offer her treats for her patient behaviour when she was with them.

Scouts – The visit to the 17th Holborn Scouts and Guides at Great Ormond Street Hospital was one of the highlights of M’s last hospital stay in 2013 and since finding out he was due another admission, he had talked of little else. His biggest disappointment was that he was admitted on a Wednesday as Scouts meet every Tuesday evening and he had to wait a whole week before he could go again. During the evening, they provide a range of different crafts and games which are tailored for the differing ages and needs of the children attending that week and even reward regular attendance, an important boost for those children who are there on long-term admissions. Sadly, M only managed to make one meeting again this year, but is already asking when he can go to Scouts again!

Courtesy of gosh.nhs.uk

Saturday Club – Every Saturday afternoon, the activity centre (located next door to the school) is opened to patients and their siblings and friends for a couple of hours of crafts, games and some much-needed time together, away from the constraints of the ward. On our first Saturday in hospital, M wasn’t keen on venturing too far from his bed, but the arrival of 2 of the Saturday club play volunteers, who engaged him and G in some riotous games of “Extreme Uno” as well as giant snakes and ladders, convinced him to change his mind. By week 2, both G and M were chomping at the bit to join in the fun and whilst the staff there helped my 2 celebrate G’s 11th birthday with some rather nifty face-painting, an elegant birthday crown and Christmas crafts galore, Mike and I were able to escape for a sneaky 45 minute catch-up over coffee and cake in the hospital restaurant.

Courtesy of scholastic.co.uk

ReadWell book trolley – This was a treat we almost missed during our first week as the trolley came round as we were enjoying the ballet at the Royal Opera House, but thanks to some near-perfect timing, we stepped out of the lift just as the trolley was about to leave the ward. M was able to choose from the wide selection of books displayed on the trolley and took great pleasure in being able to spend some time before deciding on an author we had not come across before. To his absolute delight, not only did he have a free choice of books, but he also got to keep the books he picked out and he has enjoyed reading them since we got back home. M also had the chance to create his own story with one of the ReadWell workers, who came into the school and acted as scribe as he weaved his adventurous tale of aliens visiting earth.

Ward Playroom – Whilst this was not the biggest room in the world, it held a vast array of games and activities to entertain the most particular of children. M played on the Wii, found new board games to master and was able to borrow a DVD player and DVDs to watch over the weekends. We made Christmas decorations, painted pictures, experimented with creating circuits with a science kit and M even decorated a ceramic money-box as part of his Christmas present to G.

Courtesy of magicfree,net

Magic – As well as a fleeting hello to the Clown doctors as we passed them in the ward corridor, one afternoon was brightened by the promise of a visiting magician. M sat enthralled with a small group of his new hospital friends as this talented gentleman performed one awe-inspiring illusion after another. He invited both children and parents alike to participate in some of the tricks and wowed us with his skills. He listened as the children asked him questions about what he was doing and even watched M perform a rope trick of his very own. My Dynamo-wannabee loved every moment of the show and dissected the tricks at length afterwards, trying to work out the secret of how they’d be done.

Post – Last, but not least is an activity that had nothing to do with GOSH itself, but everything to do with the amazingly thoughtful family and friends who were determined to bring a little cheer to our dreary corner of the long-term gastro ward. Messages came from around the world – Canada, Madeira and across the UK – and each was special in its own way. M received get well cards, postcards, books, stickers, games and other gifts that were guaranteed to entertain him day or night. We decorated his bed space with the cards and added a Christmasy feel with the decorations that we had made in the playroom. Knowing that people were thinking of us, loving us and sending us get well wishes and prayers sustained us both during the most difficult moments of the admission and brought some much-needed sunshine on the darkest days. From the Christmas card from M’s class at school, to 2 pages of messages from Mike’s cousin and her friends and colleagues in Calgary; from cards and presents from our friends at church, to a card from the lovely members of my choir; and the 2 extra-special gifts of Angry Birds Jenga from our fabulous FABED family and signed photos and scrubs for both G and M from Holby City, courtesy of Simon Harper, my man at the BBC; all the mail was gratefully received and enjoyed hugely by us both.

The 3rd and final step

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M and his tube at GOSH

With steps 1 and 2 complete, we were now onto the third step, the one which is going to have the biggest impact on M’s life for the next few months. NG-tube in place, dis-impaction done and pellet study under way, it was now time to move M to an “elemental” diet, one which sees all foods removed from his diet and replaced by a nutritionally complete feed that consists of amino acids, carbohydrates, fats, vitamins and minerals. The ideal would be for M to drink the 1.8 litres of this feed that he needs each day to have the right amount of calories and nutrients for his age, weight and height, but I knew we had no chance of getting him to do that. Not only is he a reluctant drinker at the best of times, meaning it would be nigh impossible to get nearly 2 litres of liquid into him on a daily basis, but the feed is truly revolting to taste and even adding generous quantities of approved flavouring was never going to be enough to convince him to let more than a minimal amount pass his lips. The only alternative was to feed him via his NG-tube, which meant an intensive few days in hospital for us as we worked out how best to give the feeds, the timings and rates that he could tolerate and I was trained on how to manage his tube.

The original plan proposed by the dietitians was that M receive six 300mls feeds a day via the gravity-feeding method, which meant that we would attach a large syringe to the end of his tube and gradually add the 300mls over the duration of the feed to ensure he took the full amount. The principle of gravity feeding is that you can adjust the speed of the feed as the flow of the liquid is driven by the height of the syringe and the effect of gravity: the higher the syringe, the faster the flow. The dietitian was keen that the feed be given over around 20 minutes, but it quickly became obvious that this just wasn’t going to be a method that would suit M. Within 5 minutes of his very first feed starting, he turned pale and grey and complained that his stomach was hurting. The nurse giving the feed adjusted how high the syringe was held, but no matter how the syringe was positioned, things didn’t get better and by feed number 2, the nurses were adamant that this just wasn’t going to work for him, something I wholeheartedly agreed with. At this point, we were only giving him 200mls instead of the full 300mls, but even that was proving too much for M’s sensitive digestion, so the dietitian finally had to agree to what the nurses were telling her and everything was changed yet again.

M’s rather snazzy new pump

Our new routine saw the feed mixed to a higher concentration, meaning that we only needed to get 1.5 litres into him a day and we were introduced to the wonders of a pump. The pump means that the rate of giving the feed can be at a speed that best suits M and can easily be tweaked as each individual situation requires. There was a lot to learn in the few days we had as I needed to know and be confident in how to check that his tube was correctly positioned, what to do if it appeared to have moved, how to prepare the elemental feeds and how to attach and properly operate the pump. There was also the added complexity that the pumps used on ward by GOSH were not the same as the one approved in our community and whilst the principle was the same, the processes were slightly different. However, by the time discharge finally happened, I was as au fait with this new part of our life as I could hope to be, felt that we could cope at home and, more crucially, had enough medical supplies to see us through the next few days.

M and his tube at home

Since that first day, now over a month ago, that original regime has been changed and tweaked more times that I care to imagine. The suggestion of 6 feeds being administered at separate 30 minutes periods throughout the day were impossible for M to manage as he wasn’t able to tolerate the 250mls over either the initial proposed 30 minutes, nor our second attempt of an hour. It also quickly proved impractical as any issues with the placement of the tube would take at least 20 minutes to resolve and that was time that we couldn’t expect the school to give him as he doesn’t get any individual support. We soon realised that M wasn’t coping either physically or emotionally with the constant feeding and we have now settled on a routine that seems to work for everyone concerned. His first feed is a 1 litre one starting at around 6.30am, which is given slowly enough to avoid too many tummy aches or occurrences of reflux and which lasts until the end of lunch-time. The pump is disconnected at that point and M is able to enjoy an afternoon free of the encumbrance of his pump whilst at school. The final 500mls feed begins between 4pm and 4.30pm and takes us all the way through to bedtime.

Courtesy of http://www.kksblog.com

This is the routine that we will be living with for the next month or so and then the task of food reintroduction will begin. As our local dietetics team has refused to be involved in M’s care, we will be working with the dietitians from GOSH to work out a detailed approach to trialling foods and the order we try them in. The elemental feeding via NG-tube will continue alongside these food challenges until we have identified enough safe foods for M to eat and get all the calories and nutrients he needs to be healthy. It’s not going to be an easy or quick task to complete, indeed there is a long and arduous road ahead, but it should be one that leads to more answers for M’s health than we’ve ever had before.

School – the hospital way

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One of my favourite memories of our pre-admission waiting time is when I asked M to tell my Mum what was going to happen once he was in hospital. I had, of course, expected him to explain, in depth, all he knew about the NG-tube and the pellet study, but roared with laughter when he said, in a small voice lacking in any great enthusiasm, “…hospital school…”

The first few days of our stay were dominated by the administration of the huge amounts of powerful laxatives and M felt so unwell that he refused to move from his bed. By the end of that first Sunday, however, the tedium of not being allowed off hospital premises had taken its toll and he was keen to head off to school on Monday morning. The hospital school accepts that the children may not be able to attend a “full” day there and is happy for any child to be there for as long as they are able to manage. Each day is split into 2 sessions: 10am to 12.30pm and 2pm to 3.30pm. They cover the basics of maths, literacy and science, but also throw in other subjects such as IT, art and even PE.

I discussed with the teacher there all of M’s needs concerning his dyspraxia and dyslexia and we talked about all he’d been learning so far at his home school. He was one of just 4 children in the Key Stage 2 group during his admission and was able to have a huge amount of one-to-one teaching as there were 4 teachers able to work with the group. They tackled his lack of enthusiasm for literacy by signing him on to the “Bug Club“, an on-line learning resource which tested his reading comprehension skills. Each time he was able to read a new passage and answer the questions correctly about what he had read, he received a virtual sticker and was moved on to the next text. He was set up with his own username and password to monitor the development he was making in class and what’s even better is that they have given us all the details needed for continuing with it at home.

M’s amazing chocolate Christmas creation

Every morning, M was keen to get up, get ready and get down to the classroom for the start of the school day. I have never seen him so keen to arrive at school and start working! He had a busy week there and he enjoyed every single moment of it. From History with the Victoria and Albert Museum to Cookery with the Executive Head Chef of the Hilton Hotel, it was a school week unlike any other. He even took part in the school’s carol concert in the GOSH chapel, where he read part of the Christmas story. It proved to be a great distraction from everything else that was going on medically and an amazing opportunity for those children who have to stay in hospital.

Round Two: the Pellet study and other adventures

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Courtesy of 123opendata.com

Once the NG-tube was finally in place, M and I then had 5 long days to survive the copious amounts of Klean-prep, senna and picolax that were pumped into his system to clear his troublesome bowel. Although we appeared to be off to a slow start, these powerful laxatives finally did their job and by late Monday afternoon, the gastro registrar was confident that we were ready to start the pellet study and a x-ray confirmed his opinion. I had already met with one of the gastro investigation nurses, so knew that the 3 pellets, containing different shaped plastic markers, were ready and waiting on the ward for M and all we needed to work out was how best to get him to swallow them.

Over the last year, we have made huge strides in getting M to swallow tablets whole and no longer need a spoonful of Grandma’s jam to help the medicine go down as he has conquered his struggles and now merrily swallows them with just a mouthful of water to help. However, there were 2 problems we now had to overcome: M’s new-found fear of swallowing capsules with the NG-tube in place and the fact that these pellets are of a size that even I would struggle to take easily, let alone a small child. The nurse suggested we resorted to mixing the markers into a couple of spoonfuls of jam and that was our first attempt. For reasons that will remain forever unclear, M found even this method difficult to manage and instead resorted to swallowing the pellets one tiny marker at a time. It may have taken considerably longer than anyone expected, but the pellets were taken and so round 2 of our admission was well underway.

The week should have been an easy one, as it was supposed to require nothing more of us than completing the pellet study, but unfortunately it was at this point that I had to brace myself and find the strength to weather an unexpected and turbulent storm. Despite both Mike and I having repeatedly made clear that we have almost no support from our local hospital and their paediatric gastro team, this information appeared to have got lost along the way and I found myself embroiled in a battle to keep M in hospital once the pellet study had started. GOSH felt sure that we would receive all the care and advice we would need from our local and nothing I said would convince them otherwise. I spent more hours than I care to remember fighting M’s corner and insisting that the consultants didn’t discharge him before the study was complete and the NG feeding started. The pressure was huge, both on me – as I talked, discussed and cried my way through numerous meetings with nurses, doctors, dietitians, psychologists, PALs workers and indeed anyone else who would listen – and on Mike – as he sought to juggle the challenges of working, looking after G at home and supporting M and me whilst we were several hours away and only contactable by phone.

It quickly became evident that GOSH simply could not conceive that we could be as lacking local support as I was asserting we were and I have no doubt that they were beginning to view me as something of an overwrought, overtired, over-emotional and somewhat neurotic mother, who was unbelievably arguing to keep her child in hospital, when most other parents were trying desperately to get their children discharged before Christmas. By the end of the week, it had all come to a head and I was at my wits’ end, but was finally vindicated late Friday afternoon, when our local dietetics team refused in no uncertain terms to take on M on a shared care basis with the GOSH dietitians – an entirely new experience for GOSH, though sadly an all too familiar one for us.

Despite all the heartache and distress this unnecessary battling caused, there was some really positive light at the end of the transit study tunnel. The final x-ray on Friday indicated that M’s bowel is working more or less as it should. It may be a little slower than ideal, but the markers had moved through M’s system and the consultant was delighted with this result, which means that the bowel is currently doing its job. We really couldn’t ask for anything more. So, the conclusion drawn is that it is the complex and multiple food allergies that have been causing M’s diarrhoea and other symptoms because of his underlying condition, EGID and the final step is to identify these as accurately as possible.

Here’s to 2015

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That’s another year done, more adventures experienced and new lessons learned. We’re starting 2015 with a positive outlook – the switch to NG-tube and elemental feeding has already started to see some health improvements for M and we finally have a plan for moving forward that will be looking for the root cause for some of his health problems. Both children are happy and settled at school and G is looking ahead to moving into secondary school in September. We’ve met and made friends with several of the lovely FABED families and have been able to help raise funds and awareness for this charity and the condition it supports. I’m not sure what 2015 holds for us all, but, if nothing else, I’ve learned to hold tightly to my hat as it’s certain to be a bumpy ride!

Wishing you all a happy, ssuccessful and peaceful 2015. May your wishes and dreams be fulfilled.

Courtesy of connectsociety.org

Courtesy of telegraph.co.uk

Courtesy of minionslovebananas.com

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Just some of the children’s creations

This is definitely a t-shirt us #EGID parents need!

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.

Merry Christmas!

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May your Christmas be filled with love and laughter; times of happiness and of reflection; family and friends…

…and may 2015 be a year that brings new hope, understanding and peace.

Christmas decorations with a M twist

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Whilst we are processing all that has happened in the last 3 weeks – think hospital admission (M), 11th birthday (G), 15th wedding anniversary (Mike and me), Carol services x 4 and metres of wrapping paper – I thought I’d share some quick snaps from a Christmas project that M undertook before he headed into GOSH.

The challenge came from school – to create a unique Christmas tree decoration for a competition – and M knew exactly what he wanted to make. A couple of weeks earlier, we had been watching a Christmas film (don’t ask me which one as I honestly have absolutely no idea, other than it starred Tori Spelling and was loosely based on the Dickens classic “A Christmas Carol”) and he had been fascinated to see the children threading popcorn into a garland to hang onto the tree. He was adamant that this was what he wanted to make for the school competition, so Mike popped a saucepan of corn kernels and M and G sat down at the coffee table to start their threading.

Bedtime arrived quickly and M asked if he could continue the job upstairs once he was ready for bed. As M is rarely asleep much before 11pm on any given night, I swiftly agreed, knowing that this would be a great activity to keep him occupied and stop him bothering G too much, as well as a sneaky way to get another finger exercise to improve his fine motor skills into his day. Whilst M was upstairs threading his garland, I was downstairs looking for simple instructions on how to make loom band candy canes to add an extra festive twist.

Six feet and six candy canes later, the garland looked amazing and M was proud to enter it into the competition.

(Oh, and that Christmas film we’d watched? – A Carol Christmas. Well, I couldn’t leave you wondering!)

The Mystery of the Missing Bed

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Courtesy of http://www.enidblytonsociety.co.uk

It sounds like one of the Enid Blyton stories that my children have been listening to at bedtime recently. M and G have been loving the adventures of Fatty, Buster and the rest of the Five Find-outers gang, but this was a mystery set to challenge even the hardiest of intrepid adventurers.

Having received our summons to GOSH less than 24 hours earlier, and laden down with suitcase, backpacks, Lego advent calendar and the ever-present Cat, M and I found our way across London, through those infamous front doors and up to the long-term gastro ward. We approached the nurses station and were greeted by a bemused looking senior staff nurse, who seemed uncertain as to who we were and why we were there. I gave her M’s name and that’s when a look of complete panic swept across her face. His name wasn’t on her master list, she hadn’t been expecting him and at that precise moment of time, there was no empty bed ready and waiting for him.

With profuse apologies and a promise to get hold of the ward administrator, the nurse in charge and the bed manager, M and I were left, with our bags, in the somewhat small and cramped playroom, whilst the mystery of M’s missing bed was investigated. After the early start to our day and an emotional goodbye to G, I barely held it together as I called Mike with a slight hysterical edge to my voice. The play co-ordinator found a circuit board kit to entertain M and I got chatting to another patient and her Mum, who had just been turfed out their room and were waiting to hear where they were being moved to. We all sat there for nearly 2 hours, whilst those in charge negotiated, discussed and settled the bed situation for all involved.

Courtesy of en.wikipedia.org

I might never know why the mystery of the missing bed happened or how it was resolved to everybody’s satisfaction, but I’m delighted that, thanks to the hard work of the nurses and the obviously determined look on my face that meant I wasn’t going to take no for an answer, M’s bed miraculously appeared in the “bay” and we could finally get ourselves settled in for the duration.

In Mummy’s arms

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Courtesy of susanstark.net

I lay awake in the early hours of this morning, watching my beautiful babies peacefully slumbering alongside me in the bed. I know that this morning, more than any other morning in recent days, both children needed the comfort of being in Mummy’s arms and resting with me. After weeks of (im)patient waiting, yesterday afternoon the phone-call finally came and at the remarkably short notice that I had been anticipating. I had less than 24 hours to book train tickets, pack a case, prepare crib notes for Mike and contact everyone who has anything to do with M to let them know about his hospital stay over the next 3 weeks, as well as the everyday tasks of cooking dinner, making packed lunches and sorting school clothes for the next day.

Whilst I whirled around the house in a haze of slightly panicked chaos, the children spent their last evening together for a while in typical fashion – hurtling from cuddling up to each other to threatening to scratch the other’s eyes out in a matter of minutes. M was particularly hyper and could barely sit still in his seat. Instead, he bounced, jigged and ran around the house like a mad thing, the clearest sign that his stress levels were high and gradually rising even higher.

We had a “last supper”, together as a family. One chosen by M. His consultant had suggested that he could relax his diet just a little before coming off food altogether and so Mike and I had expected him to choose something like fish and chips or Chinese. Instead, he requested the item that had been at the top of his Christmas list this year – an egg. So, the four of us enjoyed a poached egg on toast as well as a “dippy” egg with toast soldiers. It was a simple meal, but one that he heartily enjoyed and devoured with gusto.

Finally bathed and in their pyjamas, Mike read them a bedtime story, whilst I ran through my mental checklist and gathered up the last few bits to accompany us to London. G settled to sleep as quickly as ever, whilst M was awake until 11pm. He finally slept, snuggled into my side, with my hand tightly gripped in his much smaller one. Mike carried him back to his own bed and then we tried to sleep ourselves, knowing that, for me in particular, sleep would be a precious commodity over the next 3 weeks on a hospital ward.

I’m not to sure what time G crept in to our room, but I was suddenly aware of her presence on my side of the bed and she was quick to climb in for a cuddle as soon as I invited her in. My big girl doesn’t need my comfort so much these days, especially at night, but tonight she needed to feel Mummy near and I loved having that opportunity for an extended cuddle. Less than an hour later, just as I was drifting back to sleep, I heard the sound of footsteps running across the landing and in climbed M, snuggling down in his preferred position between Mike and me.

Courtesy of paediatricsconsultant360.com

Our bed isn’t really big enough to fit 4 these days, but tonight, of all nights, I relished the quiet opportunity to have our whole family together, in peaceful harmony; something that won’t happen again until M and I return from our adventures at GOSH,

7 years to diagnosis

Searching for an answer

Category Archives: General

7 things to do in hospital when you’re 8 (& 3/4)

The 3rd and final step

School – the hospital way

Round Two: the Pellet study and other adventures

Here’s to 2015

The First Hurdle

Merry Christmas!

Christmas decorations with a M twist

The Mystery of the Missing Bed

In Mummy’s arms