Tag Archives: parenting

A Decade of Parenting

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By the time this week is over, Mike and I will have completed our first decade of parenting.  I hadn’t really thought of it in those terms until G came home from school a couple of months back and announced proudly that she would be turning a decade old this year.  Now that I have realised the truth in her statement, it seems like an amazing feat and, oh my goodness, hasn’t that time just flown by?

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We’ve learnt so many things over the last 10 years, most of which are lessons all new parents discover sooner or later.  The most important one for me, I think, is that we have made many mistakes along the way and are likely to continue to make them despite our best efforts not to.  The best I can hope for is that there are no lasting scars being left on either G or M.  Equally inevitable is the fact that we’ve made the majority of those mistakes with G as by the time we got round to dealing with M, we had a better sense of the direction we wanted our parenting skills to take us.

Pictures July 06 044

The last 10 years with G have been an absolute delight, albeit there’s been the odd moment of stress or anxiety or frustration thrown our way.  We’ve watched our baby girl (oh how she hates me calling her that!) grow into a young lady who is beautiful both inside and out.  She is kind-hearted, generous, patient and loving, most of the time, although she has her moments of obstinate refusal, which I prefer to call “knowing her own mind”.  She is keen to please and hates to see her friends upset or disappointed and yet is fast learning to stick to her guns and will no longer pander to the whims of those surrounding her.

She loves him enough to share her blanket!

She loves him enough to share her blanket!

G has become a wonderful big sister to M and whilst tney might squabble and fight at home, she always has his back in the outside world.  Living with M is hard and sometimes the pressures on G are immense.  His constant battle with ill-health means that G often has to take the backseat in our priorities.  As is frequently the case, the healthier siblings of sick children can easily become lost in the chaos that is the illness, appointments and hospital visits and we work hard daily to ensure that G’s individual needs are met and that she feels that she gets the time and attention she deserves.  M might be her annoying little brother, but she worries about him whenever we have to travel to appointments and waits anxiously until we’re back home again.  The bond between my children is irrefutable and one that I hope will continue to grow and strengthen over time. DSC01674

G is bright, articulate, funny and able to achieve so much, although the one thing that continues to hold her back in her lack of self-belief.  Last week, G received her green award for 6 years continual attendance at Stagecoach.  We started her at 4, partly to satisfy my own love for the performing arts and partly in the hope that she would develop and build her confidence through the weekly classes.  G has grown incredibly as a performer during her time there and in the past 12 months has amazed us with a willingness to sing solos as part of two Stagecoach concerts as well as play a clarinet solo at school.  These are things she would have actively shied away from in the past and it’s been a real pleasure to see her become so keen to be involved.  As we read through her end-of-term report together, I was impressed with G’s maturity as she quickly identified that all 4 teachers were saying the same thing – that she needs to develop confidence in her own abilities as she has the potential to go far.  I’m excited to see just how she will tackle this new challenge in the year ahead.

8 years on and she's still our Queen of Hearts

8 years on – she’s still our Queen of Hearts

So, as we head into our second parenting decade, there’s not much more to say.  As may have become quite apparent, we are incredibly proud of G and all she’s acheived and survived so far.  All I can add is:

“Happy 10th birthday Floss – we love you very, very much”

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 10th 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.

pizza

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.

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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.

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Stretching and fitting the dough to the pan

Adding the GF tomato sauce to the base

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.

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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.

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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!

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Fabed needs youFABED (Families Affected by Eosinophilic Disorders) is a charity close to our hearts.  As I’ve mentioned on many occasions, FABED is a small charity supporting families like ours who are living with the challenges of a child, or children, diagnosed with eosinophilic disorders.

In the last 12 months since we’ve had M’s diagnosis, we’ve struggled to get to grips with the implications of EGID for M: how we can manage his health, coping with the impact of it on, not only M, but our family as a whole and how we communicate and explain this chronic illness to those surrounding us.  In particular, we’ve found it hard to fully explain the effects of EGID on M to his teachers and school as they rarely see the negative side – the sleepless nights, the chronic pain, the diarrhoea and the frustrations – because M just gets on with life at school and keeps his melt-downs for home.  Without the support of FABED and its wonderful families, I’m not sure how well we would have coped.

FABED

FABED is keen to produce an educational leaflet specifically for schools, separately aimed at both the Primary and Secondary education sectors. This will raise awareness of a rare, but increasingly prevalent condition, which can take years of struggle to diagnose. Helping schools to understand this disease will help alleviate just one of the many areas that families have to deal with.

This is where YOU can help.  Galaxy Hot Chocolate are looking to help small, local community based projects and community minded people through their GALAXY Hot Chocolate Fund. Eighty £300 awards will be given to help small groups and we would love for FABED to receive this money and achieve their goal.

A vote from you will make a big difference to children like M and families like ours, so please take a moment and add your vote.  Just click on the link below to cast your vote and remember to confirm from the e-mail sent to you:

http://www.galaxyhotchocolate.com/fund/fabed

thank-you-languages

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.

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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.

tissues champagne                                        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

Courtesy of dailybreadcafe.ca

Celebrating tiny lives

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

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

Both of our children were born prematurely.

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

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

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

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

Welcome to the House of Fun!

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

Courtesy of magicfree,net

Courtesy of magicfree,net

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

Courtesy of scouts.org.uk

Courtesy of scouts.org.uk

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

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

20131020_184703Treats number 3 and 4 both arrived on Wednesday.  The first was the surprise arrival of a parcel from M’s godmother, Auntie L.  She had packed a “Bored box” with an array of treats to satisfy any small  boy – Top Trumps cards, a Lego Star Wars set, a magic set, 3 packs of Angry birds trading cards, a pack of silly putty and other bits and pieces were hidden inside.  M didn’t know where to start, but slowly and surely he made his way through the box, which kept him occupied not just for the rest of the week, but for days afterwards too.  Along with the box, M also received several Get Well cards from friends and family, which brightened his day as he loves to receive post and often moans that nothing ever drops through the door at home for him.

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

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

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

A week is a long time

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As I watched my active 7 year-old today, I realised that not many people would believe that 2 weeks ago he was in hospital going through 3 days of intensive bowel preparation, an anaesthetic, a colonoscopy and an endoscopy.  This child, who is currently refusing to give in to his tiredness and go to sleep, has been running around like a wild thing, laughing and having fun.  This time 2 weeks ago, he was quiet, in pain and reluctantly resigned to his fate.

A week ago, much to the surprise of friends and colleagues, despite having spent a week in GOSH, M was back at school as if nothing had happened.  He reluctantly agreed to my ruling of no PE for the week, but I couldn’t stop him running around the playground with his friends trying to catch up on his missed week of fun.  A week ago, we pulled him off the trampoline at home with a suggestion that bouncing around was perhaps not the most sensible thing after having investigative procedures on his GI tract – he has bounced back to full health, almost literally!

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That Thursday was a long day for us all.  Mike had travelled to London on the Wednesday to spend time with M and help distract him from all that was planned.  As well as the extensive bowel prep, M had had a cannula put into his left hand on Wednesday afternoon and had once again impressed the nurses with his stoicism as he watched them put the needle in without shedding a tear.  He laughed and joked with them as they did it and even discussed whether they would need to put a second one in his other hand.

Mike arrived back on Kingfisher ward around 8am Thursday, bringing with him a much-needed croissant and vanilla latte for my breakfast.  M had been without food for 24 hours by this point and, whilst he accepted that I had to eat for my health, he didn’t want to see Mike eating food.  We sat with a nervous M and played endless rounds of Top Trumps as we waited for the nurses to come and prepare him for the scopes.  He eventually changed into a hospital gown and disappeared off to the Wii for one more game of Lego Batman with Mike to relieve the tension.

Finally, the nurse and consultant arrived to meet us and summon M to the investigation suite.  We took Cat in with him, but M was determined to prove how brave he was and asked me to take Cat back to his bed with me.  We kissed him good luck, watched as the anaesthetist put the “magic milk” into his cannula, heard him count unsuccessfully to 10 and then beat a hasty retreat back to his cubicle to wait for it all to be over.

Poor Cat, all ready for surgery, but relegated to wait instead

Poor Cat, all ready for surgery, but relegated to wait instead

Nearly an hour and a half later, and this time prepared to be waiting beyond the 45 minutes the hospital staff had said, the consultant appeared to talk through what he had seen during the procedure.  The best news was that the scopes looked much better than last time and whilst there were still obvious areas of inflammation, the damage had been reduced and consequently M bled considerably less than previously.  There are signs of some problems in his upper GI tract, but we need to wait for the biopsies to come back from the laboratory to see what they show.  Everything supports the EGID diagnosis and shows that the medicine and restricted diet are making a significant difference to his insides and we should continue to persevere with them.

Even better, M’s reaction to the anaesthetic was significantly better than the previous times and whilst there were some unexpected concerns with low blood pressure and pulse rate – he really is my son as I suffer the same problems – the hallucinogenic reaction was relatively mild and within 3 hours of coming round from the sedation, he was back playing the Wii with Mike., something we had never even imagined would be possible.

So now we’re on to our next wait until the results are returned and every week between now and our follow-up appointment is going to be an extremely long time.

Playing the waiting game

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I have tried to write this post over and over again tonight and, having reached draft number 4, I’m still not 100% happy with it.  I’ve really struggled with how to put this past week into words without sounding long-winded or overly-dramatic or twee.  It was a tough week for us all and I’m not sure that there are really words that can encapsulate our emotions and reactions.  All I can try to do is to share our experiences and give you a sense of where we are now that we’ve reached the end of it all.  I’ve decided to split the week into more than one blog-post as there is just too much to share in one simple offering.

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

The first day was filled with long waits and I wish that this had been something I’d been prepared for, but my survival guide gurus hadn’t pointed this out as a possibility.  I was naïve in believing that the process of getting M booked in and admitted onto the ward would be a straightforward one, especially given the chaos of sorting the appointment out, but I had successfully talked myself out of my anxieties and lulled myself into a false sense of security.

Despite my last phone conversation with S confirming that I needed to have M at GOSH for 10am on Monday morning, the information hadn’t fully trickled through their systems and we started the day with a 20-minute wait to even get into the waiting area for the ward.  Having found M’s notes and confirmed that we were indeed due there at that time – no, it wasn’t a figment of my imagination –  we were then subject to a further 1 hour and 20 minutes waiting before M was seen by a nurse.

Fortunately for me, M discovered a sympathetic father in the waiting room, who was able to help him get the x-box working and gave him tips on how to play Lego Indiana Jones on it.  M and another boy tackled the game together whilst I took a seat nearby, where I was able to keep an eye on M as well as listen out for his name to be called.

Indiana Jones - a great distraction for a long wait

Indiana Jones – a great distraction for a long wait

Eventually I heard M’s name and the process of getting him booked in began.  His measurements was taken, discussions were had about when and how to tackle the various medical procedures that were needed over the next few days and finally we were shown to his bed.  It was at this point that the nurse apologised for the delay, “But we hadn’t been expecting M until 4pm” she said, I shrugged my shoulders and inwardly sighed.  We had a bed, the nurses were going to get the NG-tube fitted later to start him on the Klean-prep (a strong laxative) and all we needed for the time-being was some lunch.

Unfortunately, we had waited so long to be admitted that it was now too late to arrange a special diet meal for M and instead he and I wrapped up against the rain and headed out to a nearby supermarket to buy some M-friendly foods to satiate his appetite.  We filled the afternoon with activities and TV as well as participating in a brand new research study that M had been invited to join at the end of the week before.

The George Cross awarded for "acts of the greatest heroism or of the most conspicuous courage "

The George Cross awarded for “acts of the greatest heroism or of the most conspicuous courage “

It wasn’t until around 4.30pm that we finally tackled the matter of the NG-tube.  To say that I was, and still am, incredibly proud of my brave little boy is a gross understatement.  This was a new procedure for him and he sat without making a noise as they passed the tube through his nose and down into his tummy.  His distress at the pain was obvious as I watched a single, solitary tear roll down his cheek.  The only sound was uttered once it was in place, “Cuddle Mummy“.  That nearly broke my heart, to hear my usually lively, garrulous and loud lad reduced to a single heartfelt request.

They started him on the first 4 litres of the Klean-prep and so our wait began.  We had no idea whether M was still constipated or not after the summer, so the proposed plan of attack was 3 days on the Klean-prep at a rate of 4 litres a day, adding the standard pre-procedure laxatives of senna and picolax on day 3 and then, if there was any doubt whether his bowels were clear, an enema was booked for Thursday morning before the scopes happened.  By Wednesday, it was looking possible that the enema might be needed, but we finally had the necessary break-through on Wednesday evening and that little joy was avoided.

At this stage, M and I had been more or less confined to the hospital buildings since around 2pm on Monday.  I had been able to pop out to grab meals, but poor M hadn’t been able to leave at all.  We had taken advantage of 2 occasions of being disconnected from his drip and stretched his legs beyond the space of Kingfisher ward.   It had been an interminable 3 days and in very many ways, we still had a lot of waiting to do.

A Parent’s Survival Guide to staying in hospital

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I have lots of experience of extended stays in hospital, but the proposed week ahead with M felt more daunting than normal.  It might have had something to do with his very obvious nerves and reluctance to go, but I worried about how I was going to keep him entertained and comfortable for a week filled with heavy-duty bowel prep, anaesthetic and scopes.  I turned once again to the support of FABED, where I knew a number of parents had experience of, not only an extended stay at GOSH, but on Kingfisher ward too, and asked them for their suggestions of essential things to take with us.

So, it is with many, many heartfelt thanks to those wonderful individuals, we survived the week and I’ve put together a list of the “must-haves” for a hospital stay:

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  • A supply of easy-to-store snacks and squash for both parents and child – remember that your child might be on a restricted diet in preparation for their procedure, so be flexible and prepared to nip out to a local supermarket to add to your stock if needs be 
  • I-pad/tablet/DS plus games AND chargers – these were invaluable as M was confined to bed for a lot of the week.  I loaded a number of his favourite audio books on to my tablet, which gave M something to listen to at bedtime.  A crucial part of his regular night-time routine
  • Favourite books – a mix of something your child can look at on their own as well as old favourites that you both can share
  • Favourite toy/comforter – M’s cat travelled with us as always and went almost everywhere with M.  It’s not so much that M struggles to sleep without him, but he’s a source of comfort when uncomfortable medical procedures have to be endured

    Cat ready in his scrubs for the week ahead

    Cat ready in his scrubs for the week ahead

  • Colouring In/Stickers/Craft activities – anything that can keep them occupied whilst they’re in bed.  A friend suggested we could start on our Christmas cards whilst there – I just wish I’d had time to sort that one out as it would have been something we could have begun with no pressure of having to complete it when M had had enough
  • School-work – ask if your child’s school is prepared to send some work for them to do during their stay.  Needless to say, M was extremely reluctant to do any during the week, but we persevered and read some books as well as practised some spellings ready for a test on his return

    A little reading and some spellings to learn

    A little reading and some spellings to learn

  • Headphones/ear-plugs – if you find it difficult to sleep in a quietly busy location, then these will be invaluable to making sure you get some rest.  We bought a set of headphones for M, which were a real life-saver during the week.  He was able to listen to the TV and audio books without disturbing anyone else and that really helped him to settle to sleep each night
  • Mini lego sets/action figures – M has recently enjoyed playing with some plastic soldiers that he “won” when we were last on holiday in Canada.  For this stay, I bought a pack of them which included tanks, planes, helicopters and bunkers – hours of fun that constantly changed and that could be put away quickly too
    M and Daddy putting together some new Star Wars Lego

    M and Daddy putting together some new Star Wars Lego

     

  • Top trumps or travel games – they’re small, easy to pack and entertaining for at least 5 minutes!  We could play a game and then pack it away as soon as M wanted 20131020_184801
Courtesy of waitrose.com

Courtesy of waitrose.com

  • Clothes – Enough clothes and sets of pyjamas to see you through the week.  As M was having bowel prep, I packed masses of underwear as well as pairs of pjs – it still wasn’t enough, but got me through 24hours without too much stress
  • Warm jumper – for both the child and the parent for when the nights get chilly
  • Washing powder/gel – we went through M’s clothes far quicker than I had anticipated.  Fortunately GOSH has a Patients laundry room with 2 washing machines and 2 tumble dryers.  I was able to run a load through both every evening at a cost of no more than the washing powder to clean the clothes
  • Slippers – I really, really wish I’d thought of taking slippers with us for both me and M.  I didn’t want to wear my shoes all the time, but wasn’t always comfortable to walk around in nothing more than my socks
  • Blanket/pillow – it’s nice to have that extra bit of comfort that reminds you and your child of home.  M had 2 blankets with him, which he curled up with every night whilst giving Cat a much needed cuddle
  • Treats for Mum (or Dad!) – hand cream, lip balm, comfy socks, soft loo roll were among the suggestions and all were invaluable to me for the week

And then. my 3 favourite suggestions, that brought a smile to my face and were in much demand during our week at GOSH:

  • Gin in a tin
  • A sense of humour
  • and a LOT of patience!
Courtesy of tesco.com

Courtesy of tesco.com

Whirlwind week

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Having written my last blog about finally making the big decision to request that M has more scopes done, we settled in to what we assumed would be an inevitable wait for the appointment to be made.  Having been told 6-8 weeks, I studied the calendar and figured out that 6 weeks would be right in the middle of October half-term and, knowing that there was no chance that we could be that lucky,  assumed that instead we were looking at a date in the middle of November.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

A week after Mike had spoken to the registrar at GOSH, I received a call from the pre-admissions nurse, S, to talk through M’s notes and agree the arrangements for the scopes.  I was reassured to learn that M’s notes clearly state that there is a problem with him coming round from the anaesthetic and S suggested that, as a precaution, he be admitted to Kingfisher Ward for 2 nights to allow close monitoring as he recovered.  We discussed the possibility of a pre-med, which is supposed to calm the child before they are given the anaesthetic.  She felt this might lessen his reaction, though I was warned that there is a risk that it can have the opposite effect and might make him more aggressive.  We agreed that I am open to him taking it, but will discuss it fully with the Consultant Anaesthetist the day before.

However, not unusually when it comes to M, there have been some added complications due to the chronic constipation and impaction he had over the summer. GOSH wanted to admit him for a week into our local hospital to have a fairly heavy bowel prep done – they need to monitor him to ensure he doesn’t get dehydrated plus insert a NG-tube to give him the meds as it seems unlikely that he’s going to be co-operative about taking 4 litres of a “vile-tasting laxative” (the words of the medical staff, not me!).

Mum had some holidays booked during the 6-8 weeks and I had my fingers crossed that the dates wouldn’t clash as G would be staying with her whilst Mike and I stayed up in London with M.  S confirmed that she thought the appointment would most likely be in mid-November and that the admissions team would call me within the week to confirm a date.  All seemed to be going to plan and I informed both school and work that the appointment would be coming up and that I would let them know as soon as I had a date.

And then last week, the whirlwind hit.  Hold on to your hats, this could be a bumpy ride.

Courtesy of m.flikie.com

Courtesy of m.flikie.com

Friday afternoon 2.30pm – Phone-call from GOSH to say that the proposed date has suddenly become, not 6 weeks away, but rather the week after next, just 10 days notice for all concerned.  No time to confirm what the position with our local hospital was, that will have to wait until Monday.  Let school know that M will be away for the week and ask if they could organise some work for him whilst he’s there – I know, mean Mummy!

Weekend – Confirm arrangements for G.  Mum not away that week, so G can stay with her and stick to her normal routine as much as possible

Monday 10.45am –  Speak again to S, the pre-admissions nurse, who has yet to phone our local hospital, but who has a doctor on hand at GOSH to argue our case.  Given M is supposed to be admitted there on Wednesday, it all feels a bit tight and needless to say, stress-levels are slowly rising.  Suddenly, the 3 days off work and school have become over a week, but still just about manageable as I can do the school-run and so on with G.

Monday 1pm – GOSH doctor calls to confirm some further bits of information including the name of our local consultant (we don’t have one) and which ward M is normally admitted to locally (he’s not).  Assured this won’t be a problem and that either she or the local hospital will ring later to confirm when I need to get him there.

Monday 6pm – Phone-call from S to say that the local hospital has refused to take him and so we’ve got to move to Plan B – getting him admitted into GOSH to have it done instead. No idea whether they’ll have a bed for him or when they want to admit him. They need to review the abdominal x-rays done over the summer (by the local hospital!) to see whether he needs to be in the full week or not.  Someone will call tomorrow to let me know.

Tuesday 9.30am – Wondering what time GOSH will call and hoping that it’s good news. still waiting

Tuesday 12.45pm – Still waiting to hear

Tuesday 3.30pm – Still waiting, but hoping they don’t phone whilst I’m on the school-run.

Tuesday 4pm – Following call from Mike to see if I’ve heard anything – doesn’t he know I’d have rung him if I had? – decide to call and leave a message for the admissions nurse.  She is amazingly, wonderfully supportive and has reassured me that she will come up with a Plan C if needs be, though goodness only knows what that will be!

Tuesday 5.15pm – ARRRRGGGHHHH!!!  Appointment cancelled as GOSH can’t find him a bed for the week.  Profuse apologies from S, who tells me she’s turning grey trying to organise it for us, but that admissions will phone me tomorrow to set up a new date.  They’re not going to bother with the local hospital at all, I’m guessing they’ve been unco-operative which fits our experience of them, and instead will do it all at GOSH.

Tuesday 6.30pm – You really, really couldn’t make this stuff up!  Phone-call from S, as I’m en-route to taking G to her gymnastics lesson, to say that they’ve found him a bed for next week and so it’s all back on.  Can’t confirm what time we’ll need to be there on Monday, so I’m now planning on M and I travelling to London on Sunday.  She will phone tomorrow to confirm all details.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Wednesday 11.45am – Hurrah!  Get the champagne flowing, we have lift off.  Final confirmation that M will definitely be in from Monday 10am, no ifs, buts or maybes left.  S has been a star and has promised to come visit us once he’s on Kingfisher ward on Monday.  I can’t wait to meet her and say a huge thanks for persevering with getting this all sorted.

Now, I’m off to work out what we’ll need and how we’re getting to London next week.