Tag Archives: stickers

A Numbers Game

Tomorrow’s Tubiversary marks:

20141207_12421712 NG-tubes and the accompanying tube changes, which included…

2 tubes pulled out by accident and 3 that broke unexpectedly;

4 pump backpacks worn out and replaced (and number 5 will be needed soon);

approximately 70 Feeding Friends stickers and 60 strips of Tegaderm used to keep that tube firmly stuck to the side of his face;

and at least 3 other tapes tried, tested and rejected;

1 Christmas, 1 Easter and several birthdays survived and celebrated;

11026157_10152614450811123_382817830123987117_oNearly 1 whole school year achieved with only a few days off;

1 week away in Cornwall enjoyed;

4 weekend trips planned, packed for and successfully negotiated;

5 safe foods and 2 safe oils identified and back in his diet, resulting in…

…around 15 new recipes adapted and perfected…20151121_162110

4 new kitchen gadgets invested in and well-used…

…and impressively 16 restaurants found to be amazingly able and willing to accommodate the trickiest of dietary requirements

 

Not forgetting:

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M's daily batch of medicines

410 litres of E028 pumped

12 daily medicines reduced to just 3;

nearly 3kg of weight gained

5cms of height grown

 

And including:20141216_121143

12 months of stock counting, and rotating, and checking, and ordering

52 weeks of new syringes and dressings

365 days dealing with pumps beeping – …on…off…start…stop…blockages…settings…errors…”just becauses”!

8,760 hours of making sure Pictures July 06 019the tube is tight enough, taped enough, in the right place enough…and not getting caught on anything

525,600 minutes of longing to be able to hold or stroke or kiss that precious little face without the tube getting in the way

Countless tears shed, hugs shared and frustrations vented

 

All amounting to…

One year of the best health ever

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Just one more dress-up challenge!

20150301_144602These past 2 weeks have been filled with one dress-up day after another for our household. Of course, it all started with the Cluedo party we held to celebrate G and M’s birthdays, where we invited guests to come in optional fancy-dress to match their character if they wanted.  The key word was “optional” as I was well aware that not all of M’s friends are as big a fan of fancy-dress as M is, but we were impressed with the range of costumes that arrived on that Sunday afternoon.  We had “Reverend Green” sporting a dog collar and a striking pair of bottle-green jeans; “Earl Grey” in pinstriped waistcoat, bowler hat and monocle and “Admiral Azure” had a home-made pair of epaulettes that would cause envy in the heart of any member of the armed forces.  Not to be outdone by the costumes of the boys, many of G’s friends joined in, wearing dresses to reflect the glamour of “Mrs Peacock”, “Mrs White” and “Lady Lilac”.  Dress-up challenge #1 – done.

20150305_083738Just a few days later came the first of our dress-up days at school, World Book Day.  Refusing to give in to M’s demands for a custom-made costume this year, I instead insisted he wore the army captain’s costume that we had bought for his representation as “Captain Emerald” at their birthday party and suggested he went as “Captain Nicholls” from Warhorse by Michael Morpugo.  We have recently enjoyed the stage production of Warhorse whilst it was on tour around the UK and M had bought himself the book for his admission to GOSH before Christmas, so he leapt at this chance, though in typical M style, he chose to be the lesser-known “Major Stewart” because he “got to ride Topthorn and not Joey, Mummy.”  G also wore a costume she had in her wardrobe and despite dicing with the idea of being “Dorothy” (Wizard of Oz) for the 3rd year in a row, ended up going as the “Princess” from Aladdin, wearing the Disney outfit from our Florida holiday last year.  Dress-up challenge #2 – tick.

20150306_154905The day after World Book Day, M had his Roman “Wow” day at school, requiring, naturally, a Roman costume.  He had originally toyed with the idea of going as a Celtic slave, but when the morning dawned, he had a change of heart and out came my trusty needle and thread, one of Mike’s white t-shirts, G’s plaited belt, M’s old white karate trousers and one of my red pashminas.  Less than 30 minutes later, our very own Roman-esque citizen made his way up to school – not bad for a quick Google search and 15 minutes of hurried sewing!  Dress-up challenge #3 – survived by the skin of our teeth!

 

20150311_210916I had a quick breather over the weekend, which was time enough to celebrate M’s 9th birthday itself and to gather the necessary base materials and trimmings for the next fancy dress requirement – a Greek toga each for the end-of-term Stagecoach performance.  Fortunately we were provided with a set of instructions on how to make a simple toga and G had acted as a model during Stagecoach a couple of weeks ago, so I had already had a sneak preview of how to put the costume together.  The togas themselves were simple enough to make, but then came the lengthy task of adding trim to suit the needs of my demanding duo and the trickier job of making the togas fit.  It might have taken a (very) late night, but the end result was fantastic and I can’t wait to see them perform on stage at the end of March wearing these masterpieces.  Dress-up challenge #4 – future success.

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And so it’s on to just one more dress-up challenge as tomorrow is Comic Relief and the challenge to “Make your face funny for money”.  The costume is the easiest part of the day as they just need to wear their own clothes to school, but the challenge will come early tomorrow morning, when we need to be up at the crack of dawn to give me time to face paint them both.  G wants a tiger and lion on her cheeks, so we’re going to cheat slightly by using M’s tiger feeding friend stickers on one cheek.  I’ve promised her a lion’s face on the other side as long as she’s happy with a cartoon style decoration.  If we have time, I’ll also do her hair in a funky style and, fingers crossed, both will last her throughout the school day and tomorrow evening’s Stagecoach session.

Courtesy of blog.partydelights.co.uk

Courtesy of blog.partydelights.co.uk

M’s face will take a little more work, but I wanted to do something a little different to his tube for the day.  The plan is to cover his tube with both the tegaderm dressing and then a layer of safe micropore before I get to work with the face-paints.  We’ve agreed on a snake design, which will hopefully see me camouflaging his tube as the snake’s tail as it winds around the back of his head, with the snake’s head, complete with sticking-out tongue, appears on the opposite side.  Whether it will work or not, we will just have to wait and see, but I promise a photo if all goes well!  Dress-up challenge #5 – still to be decided.