Tag Archives: courage

Happy 11th!

Somehow it doesn’t seem real that another year has passed and we’re marking a certain young gentleman’s 11th birthday. When my challenging pregnancy resulted in a premature birth, I had no idea that this Japanese proverb would become the very mantra of our lives as a family of 4. Today we’re celebrating 11 years filled with love, laughter and the continued determination by our youngest to get back up each and every time life knocks him down.

Happy 11th birthday M, may your day be filled with everything you want and so much more!

 

All the Fun of the Fair

There’s no doubt that the weeks since April have dragged past at snail’s pace for a certain young man and his broken leg. 10 weeks into having that leg encased in plaster, and all of M’s hopes were pinned on the sarmiento cast finally being removed and allowing what must now be a skinny, white limb see some summer sun and fresh air. Unfortunately, the last fracture clinic appointment did not go according to M’s plan and the x-rays showed that the bone regrowth had slowed down and was not at the level the orthopaedic consultants were expecting it to be after over 2 months in a cast. The news that he has to survive another 3 weeks of limited mobility was not well-received and, having seen him stoically accept the verdict before crumbling once we left the unit, it was a massively disappointed and heartbroken little boy Mike and I had to take back home. The next 30 hours or so saw him at a lower point than we’ve experienced for a long time and it was only thanks to his sense of commitment and phenomenal strength to keep fighting the fight that we managed to convince him to go to his school’s summer music concert that evening, where he disguised his emotions well and took part on his cello and in the choir with reasonable gusto.

IMG_0617[1]

What we needed was something to cheer him up and fortunately that something was already pencilled in on our calendar for that very weekend. It might not have looked too promising during Stagecoach on the Friday night as M broke down in tears about not being able to dance with everyone else, but thanks to much encouragement and enthusiasm from his big sister as well as a determined spirit that won’t be kept down, by early Saturday morning, things were looking a lot brighter and it looked like we had weathered yet another health storm.

The reason? The song and dance routine that their Stagecoach school were going to be performing as part of our local carnival’s parade and a huge serving of 70s disco to boot. We had always planned for M to be part of the parade in his wheelchair, knowing that the mile and a half long route would be too much for a newly healed leg.

IMG_0502[1]The preceding weeks had been busy with costume preparations and plans to pimp his wheelchair for the event and his decision to ask for a 70s themed cast at the previous fracture clinic meant that we were all set for the parade. Mike and I had also been roped in to help out for the day and I had even managed a few tweaks to our own clothes to make sure we were part of the 70s disco theme. All of the children were fantastic as they sang and danced their way towards the town’s football club and entertained the crowds, who joined in with the familiar moves of “Night Fever” and “Tragedy”. I was particularly proud of G, whose hard work and dedication to her dance saw her selected to be one of the 2 dance captains and she led the group with a flair and sense of fun that I rarely see from her when she’s performing. She really stepped up to the mark and the smile on her face showed just how much she enjoyed it.

And M enjoyed himself too, despite his insistence he wouldn’t. He and I showed off our moves as we grooved our way down the High Street and he waved right and left as friends called out and cheered our group as we went past. Of course the disappointment of not being able to participate as fully as he would have liked was still there, but he was caught up in the excitement of the day and really did enjoy all the fun of the fair!

 

And now, the end is here…

Today marks the end of an important week for our family.  It’s been an interesting week of sharing more about life with EGID with friends and colleagues as well as reminding ourselves of just how tough it can be to follow M’s restricted diet.  I’m not usually a snacker, but this week, perhaps because it hasn’t been easy to just go to the cupboard and grab a handful of whatever I’ve fancied, I’ve wanted to snack at the drop of the hat.  Even with our cupboards and fridge full of M-friendly foods, the options for breakfasts, lunches and snacks are incredibly limited and I’ve found myself returning to the same things, time and time again because there really is no choice.

This week, a fellow EGID and FABED Mum put together this amazing video to mark National Eosinophil Awareness Week, which includes some of the brave children we’ve had the privilege of getting to know during our journey to get a diagnosis for M.  Some of you may already have seen it – the statistics suggest it has already been viewed over 9,000 time through the social media – but take a look again: these are the faces of children and families who battle EGID on a daily basis. These are children like M and families like ours:

One day left to go in our mission to “eat like M” for the week and perhaps the hardest food challenge of all…a BBQ social at a friend’s house!

M

Me

Mike

Breakfast
  • Bowl of free-from rice pops
  • Maple syrup
  • Rice milk
  • Toast (1/2)
  • Peanut butter
  •  Rice flour toast (2 slices)
  • Peanut butter
  • Rice flour toast (2 slices)
  • Rice milk
Lunch
  • Bruschetta made with:
  • 4 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Apple (1/2)
  • Pear (1/2)

 

  • Bruschetta made with:
  • 2 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Pear (1/2)

 

  • Bruschetta made with:
  • 2 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Apple (1/2)
  • Pear (1/2)


 

Dinner
  • Baked sweet potato
  • M&S Venison sausages (2.5)
  • Olives
  • Pistachio nuts
  • Carrot cake cupcake
  • Sainsburys Free-from sausages (1.5)
  • Sweet potato
  • Salad – lettuce, cucumber, tomato, avocado
  • Baked sweet potato
  • M&S Venison sausages (3.5)
  • Green salad
  • Banana
  • Nectarine
Snacks
  • Nakd cocoa orange date bar
  • Fruit buttons (lemon)

Playing the waiting game

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.