Night checks on your child who has T1 can be a hazardous business.
I don’t habitually check Pumplette’s bgs throughout the night, but with various after school activities, varying wildly from one week to the next, there are times in the evening, once she’s asleep & before my midnight pumpkin call to bed, where I will check her bgs & need to intervene.
Last night was a great example of non routine needing additional bg checks. Pumplette had been at a dress rehearsal for a performance later in the week. We dashed to the theatre straight from school & apart from a snack, they didn’t get to eat until gone 2100. On the way back at 2200 she checked her bgs. 22.3 mmol. On seeing this she gave herself the usual hefty correction, armed with the knowledge that any bg over 14mmol for her needs an extra ‘kick’ to compensate her accompanying insulin resistance when bgs are high. Great job Pumplette.
Except diabetes just doesn’t play fair & because she was tired & active at a point in the evening/night when she’d usually be snoring like a traction engine, her insulin resistance was taking a nap. Conversely, it’s contrary mate insulin sensitivity had come out to frolic in the moonlight & her bgs went from 22.3mmol to 6.0mmol in a very short 45mins.
I found this out because her pump, with it’s cgm alarms, was going nuts about 10minutes after she’d crawled into her pit. Suspecting this fall I crept into her room & went to check her bgs as gently & quietly as one can. I usually use her heel for night checks as Pumplette resolutely hides her hands underneath her tummy whilst sleeping. Using her heel is a throw back to her diabetes infancy when her fingers were too small to use a lancet on.
In her half conscious state, Pumplette went to roll over whilst I was gathering up the debris from the bg check. Except being Pumplette & a proper drama queen, she can’t do anything subtly, so as I turned around to retrieve the lancet, I found myself entertaining her heel in my eye socket as she waved her leg around. And boy, a half conscious limb in motion has a mighty thwack to it!!
The upside of this encounter was the lack of need for me to wake Pumplette enough to ply her with lucozade. My shocked yelping & tears like a four year old who’s left the top layer of their kneecaps on the playground surface did that job for me!
In summary. Approach night checking with caution! I only check at night if I’ve had to administer insulin to a sleeping Pumplette or a cgm alarm alerts me enough to wake me from my slumber! That’s really only for my peace of mind & the fact that it enables me to help her achieve her management goals as she is quite fond of sleep, like her mother, and so by my carrying the responsibility for her nocturnal management it helps to keep that HbA1c where she wants it.
No if you’ll excuse me, I’m just off to apply another ice pack!
Disclaimer: I do not work for Modz and have not been paid for writing this post. We have received a free meter from Modz & 100 test strips so that we can use this meter and gain a personal idea about how this meter works for our family. Non of my opinions should be taken as medical advise – it’s already a miracle that I manage to keep three children, a husband, dog & hamster alive! I couldn’t stand the extra responsibility for keeping you or your loved ones sustained too!
The start of half term week & an exciting parcel arrived on Tuesday from Modz in Finland. Nestled inside the bright green boxes, was this. The latest bg meter to hit the European market, launched in the UK almost two weeks ago.
These are a few of our first impressions about the meter & what, if any, benefits Pumplette & I can see there’d be from using it.
1) in a country where we can access free bg meters & test strips, increasingly of the pwd’s, cwd’s or parents choice, the price tag that accompanies the Modz meter will, no doubt, rule it out of many people’s minds due to funding alone.
The cost of the meter & test strips though has a purpose, so bear with me & keep reading!
2) Modz was much, much smaller than either myself or Pumplette expected.
3) the touch screen, I’m reliably informed, is “on point”! (That’s cool in elderly person speak!!)
4) there is the ability to “programme ” the meter so that it will prompt a bg check at pre-programmed times.
5) if the child presses the wrong button in response to these prompts but still carries out a bg check, that alert will not be silenced until either the settings are changed by the person with access to the pin, or the child completes a second test in the correct order!! Grrrrrr!!
6) this is where the expense comes in – the meter has the ability to email up to 3 addresses when bg checks have been carried out & text one number the results too. In order to do this, there has to be an internet/mobile enabled sim in the meter & the “service packs” include this capability. Think of it as paying your mobile provider for your data allowance.
7) 6 only works if there’s mobile reception & there’s no way of knowing whether it has this at point of use as there are no little bars in any of the corners indicating signal strength. Or otherwise, as is more usual for us cave dwellers!
8) 6 could be a really positive feature for children who are pushing for more independence whilst the parents are more reticent to let go. And works out cheaper than a cgm habit & cgm in the cloud!
9) conversely approach the text or email result with caution! Pumplette has had a couple of checks where she under filled the strip & it came out with 1.3 & 2.4 readings when her bgs, on repeating the checks, were actually in the 6’s & 8’s.
10) we are still figuring out how we feel about all the features. The big test will be how she feels about it after a week using it at school.
From my own personal point of view, I’m not keen on her having “good” results which are rewarded with credits to a game. As a family, we have always been very keen to reinforce to Pumplette that bg checks are not about good & bad. Passing a test or failing it. They’re about giving her information upon which she has the knowledge & ability to act.
But I know we are all different & that there may well be many children & parents who work best within the confines of right & wrong & rewards. Horses for courses!
In summary, our first impressions are, we love the very compact & discreet size of this meter. I’m still struggling with the paying aspect of the piece, but if I took this out, then certainly when Pumplette was younger & in preschool & primary school years, the ability to know she was being supported to check her bgs in a timely manner would have been ideal.
To be continued……..
Just by happy chance of fate, I was born into a country where there is free healthcare for everyone at point of need. That healthcare is the most sophisticated & up to date on the planet, delivered by professionals who’ve been trained to the very highest standards. And my family and I are lucky enough to be afforded all of this, just because of our place of birth.
Just because of chance.
But there are many millions who are not lucky with their birth place. Poverty, lack of education & circumstance result in too many children & adults dying from illnesses & conditions needlessly.
Which is why, this Valentine’s Day, I shall Spare A Rose, because flowers die, children shouldn’t. For the price of a single rose, it’s possible to save a child’s life for a month, providing them with life saving insulin. You may never meet that child. But you will know. I personally think that’s an awesome fact to know.
And this year, I’m going to make a pledge that lasts longer than one day. For the price of a coffee with a friend each month, I will be able to continue to help a child access life saving insulin throughout the year. What a tiny cost to me, with all my first world privileges. Because I believe I should never forget how fortunate I am that fate landed me here. For I & my children, could so easily have been dealt a different hand by fate.
So pass on the good fortune & Spare A Rose this valentine’s day. And if you’re able, why not forgo one of those coffee meets a month so that a child can continue to grow & thrive.
Little did I know on this day, 11 years ago, that I was about to embark on the steepest learning curve I would ever embrace. It would be tougher than the lessons I learnt in childhood loosing a parent & later peers. It would be tougher than managing to be run over on zebra crossing! And it would be tougher than the journey I’d made becoming a motherless mother.
For on this day, 11 years ago, Pumplette shouted, or I’m sure she would have done had she not been such a small baby, “house!” and metaphorically laid out her winning hand of cards & was diagnosed with T1D.
Skills I have acquired in the past decade include:
Being able to juggle a breast feeding baby, whilst simultaneously wielding a bg meter & lancet before drawing up & mixing tiny doses of insulin in syringes (a practise I’m certain prematurely aged my eyesight!).
Accurately deciphering the hitherto little known “Farrow & Ball Hypo pastel shades chart”, for all your hypo detection needs. This chart has a twin, “F & B hyper detection primary shades”!!
Nailing down the “I know which of the three children careering around me has to be nailed down to have a bg check” when you’ve three children under 5 & your brain is addled through lack of sleep. (I genuinely have, on multiple occasions, attempted to check the bgs of a non D child, much to their surprise & amusement!)
Preventing an adventurous toddler hurling herself into paddling pools & baths before the advent of a waterproof pump!
Perfecting a nonchalant game face to project an aura of calm confidence to enable Pumplette to embrace all new opportunities & adventures with excitement & not trepidation.
Cultivating the patience of a saint to accommodate the desires of a 2yo to “Do it mine own!” and wait whilst a bg check takes 30 mins to fully execute – an operation I had nailed down to a swift 30 seconds!
Realising why the above is so vitally important to a 2yo.
Latterly the patience of a saint is being deployed to allow her to experiment & discover her own managerial path. Support & IT support are now my most important roles in her management.
Being comfortable in a hospital environment. Again, it’s all about the game face & acting. Happily Pumplette has fallen hook, line & sinker for my charade & couldn’t be more confident when navigating the hospital corridors.
Whether it was the time she made a rather large hole in the roof of her mouth with the aid of a plastic tube & a sudden meeting with a door frame, or the time she was thrown from a fairground ride & run over by the carriage for good measure, a calm & unflappable approach definitely made these harrowing experiences more bearable. (And also always engender masses of sympathy from the nurses & doctors who need, quite literally, to patch & mop her up!).
That I can survive on infinitely less sleep than was previously considered possible to man! From that first night holding vigil at her cot in intensive care, I’m not sure I’ve ever been 100% rested since!
We can travel the world & guesstimate the bolus with aplomb! Showing her first hand that there are no barriers for her at all. Anything she wants to do, she can.
The online community #doc contains the most remarkable & inspirational bods across the world who have made me be a better parent & more in tune with Pumplette’s needs, not mine.
And so I sit here, 11 years on. The fear we felt this time 11 years ago is still very easy to access. Almost loosing a child changed me. Emboldened me. And made me appreciate every moment I have with my precious girls & inspire them to grab every opportunity that life throws their way. Which is why, when I awoke this morning, Pumplette wasn’t there. She is busy this weekend, training for her next adventure as a member of the UK Youth Parliament.
Little did I dare to imagine at that cot in intensive care, that my little scrap, clinging so very tenaciously to life, would be setting off on her own adventures so soon.
One of the many things I’m grateful for are the unique experiences that have been afforded to us since Pumplette became host to our uninvited guest almost 11 years ago. From Jeff’s skydive, way back in the spring of 2004, when he raised a phenomenal amount for the children’s hospital that had saved our daughter’s life, through his many sporting achievements since (half marathons, full marathons, entire Mars bars, cycling odysseys, the list is endless!) and our opportunities as a family – indoor skydiving, ambassador roles for all my girls – to visits to parliament for Pumplette, we have embraced every new experience & opportunity as a blessing. Changing something we’d rather not have known about into something that holds many more positives for all our children.
I guess we are, fundamentally, an optimistic family. Life experiences have taught us well to live now & be so very grateful for all that we have. That my biggest gripe regarding her medication is that I actually have to remember to order it, not whether I can afford it, is a first world problem I can happily embrace, for it is a privilegenot afforded to far too many.
Last week, Pumplette was lucky enough to be invited to finish what she started & deliver JDRF’s Count Me In petition to Downing Street. Throughout this campaign JDRF have been garnering support calling for more governmental research resources to be channelled toward research into the causes, prevention & cure of T1D. Their aim was to highlight how much cross over & insight into T2D there is stemming from T1D specific projects. Sadly the reverse is not so true with the cross over to T1 relevance being much less. So whilst the numbers assumption is to plough money into T2D research as it affects so many more people, the reality is that research mainly helps that cohort alone. Whereas T1 research has a massive cross over & indeed there have been many advances made into the treatment of T2 as a direct result of research focusing on T1.
Pumplette has been the “face” of this campaign, and, although very biased, I felt it apt that this should be the case. For over the past decade, she has seen massive changes & benefits in her regime, all of which started on a bench in a lab. Fabulous research, driven by people who weren’t prepared to accept the status quo. Who may never know the impact their discoveries & developments have had “in the field”, but for who’s tenacity & determination I am eternally grateful.
Whether our current government pay full attention to the voices raised within the many thousands of signatures, time will tell. However, as the optimist I am, I am hopeful that even if it is only a humble civil servant who reads & responds to the petition, & it raises the profile & challenges faced by all who live with diabetes to just that one extra person, then that is another one who can join our voice. For if I have to tick them off one at a time to bring about a change, I will! And my daughter’s future will be bright.
You know the scene. It’s breakfast time, on a school day, and there are 101 tasks to complete in an infinitesimally tiny timescale. Any deviation from breakfasts x3, showers x4, clean uniforms x3, lunchboxes packed x3, piano practised x3, singing practised x2, dog fed x1 & endless supply of tea will send this well timed operation clattering violently off course resulting in children 1 & 2 completing the walk of shame to sign the late book!
It is with this backdrop then, you’ll understand the routine does not allow for a pre breakfast hypo. This phenomena is, obviously, grim for the host to endure, but it does have the ability, more than any other timed hypo, to frustrate the usually placid & calm facilitator!
Pumplette wanders into the kitchen….
“Morning darling. I’ve made you some tea. What would you like for breakfast today? Your kit is over there. Would you mind checking your bloods before breakfast whilst I go & shower?”
Me, (returning to kitchen), sees full breakfast bowl, still waiting for milk, on side. “Pumplette?!!” No answer came the reply.
Look in the sitting room to find Pumplette engrossed in German spelling homework.
*squeaky voice fresh from the same stable as the ministry of silly walks!*
“I don’t know!”
“Did you check your bloods?”
*new voice from ministry of silly squawks*
*Me, trying to remain reasonable*
“Are you low?”
*more daft voice work*
“Maybe. I may be 3.1″
*Straining to keep the irritation out of my voice*
“But you’ve had some lucozade?”
“I’m doing my German & I’ve got every single spelling right!”
*No pretence of calm. Full on irritation*
“It’s a spelling test, Pumplette. Not a copying one….
Please come & have your breakfast now.”
“But I’m looooooooooooww!”
*child in me starts to stamp feet*
I momentarily start to argue the toss, forgetting that this is a hypo where everything needs to be presented to the host, who’ll continue to look at you, utterly bemused, whilst you patiently cajole them into consumption!
I do try to remain calm, but when the accompanying background soundtrack to this scenario is another two girls faffing around looking for hairbrushes, tights, blazers, books, completed permission forms etc etc., it’s often beyond me!
Actually. Given all these things, it’s a wonder we ever manage to leave the house at all, never mind adhere to a deadline for school arrivals!!
Then of course, as I drop them at school, there’s always the final parting exchange….
“You’ve got you blood kit, haven’t you?”
*repeats school run for a blood kit*
Sitting in a cafe drinking tea whilst watching my daughters swim, I couldn’t help but eavesdrop on the conversations of other mothers, whilst trying my best to stay focused on my latest reading matter. The women on the adjacent table to me, seemingly oblivious to the public setting & having exhausted themselves in a relentless round of “My child is better than yours…”, turned their attentions to some of the other children enjoying the giant inflatable obstacle course in the pool. Idle chit chat suddenly dropped to a level of discretion hitherto unseen that morning. I had to strain hard to hear! This will teach me not to eavesdrop, as they were talking about a child who had things attached to her. What were they? What was wrong with her? Doesn’t it look awful? Such a shame. Such a pretty girl too.
Yes. You’ve guessed it. They were discussing Pumplette & the audacity with which she flaunted her pump & cgm (worn on her arm that day).
I froze. I couldn’t reasonably interject at this point as it would have been abundantly clear that I’d been deploying my hawk hearing. However it did force me to pause & reflect that this is often a common reaction from strangers (or muggles as we know them to be!) toward amazing technology of which they know nought & have not the slightest comprehension how it has utterly transformed this magical little lady’s life.
For Pumplette is unabashed when wearing the technology that helps her make informed decisions on a day to day basis. She forgets that they’re there. She doesn’t hide them, isn’t embarrassed by them, & will patiently explain their function when asked.
But this is the rub. So normal to her is this apparatus that she forgets others see it as alarming or uncomfortable. I love this fact. To me it indicates a healthy, robust mental attitude to her condition & her management of it.
And yet I worry. I worry that because of the repeated actions of these muggles, (strangers, acquaintances & peers), she will learn to be embarrassed by the technology she so loves & embraces.
The herd mentality is embedded in our DNA – acceptance is often an important aspect in human behaviour. Will these whisperers derail my daughter’s show, cause her to doubt her enthusiasm for her kit, and lead her to neglect her health whilst she grows in maturity & understanding? I sincerely hope not. And I will do all in my power to ensure that’s not the case. Because that’s an important part of any parenting – helping your child to recognise how utterly perfect unique is, that the herd is a much better place to be when frequented by individuality. And that that individuality is to be celebrated & not regarded with suspicion & ridicule.
I’m pleased to report, however, there are as yet no signs of her hiding away. Instead she seems to be gaining confidence & swagger in her stride with every passing day.
As it’s almost Halloween, I shall finish with an old picture of Pumplette rocking her pump,(and the entire party’s passes!), dressed for a Spooky Fest in Singapore.
This week sees Pumplette heading off with 106 of some of her closest friends on a school trip, rampaging through the capital city all in the name of education & enrichment. I’m very excited for her – the itinerary has me green with envy – and I know the entire week will be spent in a heightened state of excitement & sleep deprivation!
However, when I wave goodbye to her in the pre dawn twilight of the morning, I will confess to hiding my anxiety that she’ll return home having had nothing other than a hugely exciting adventure & a bag of dirty laundry. For it isn’t just my second born I shall be waving off in the morning. The numerous bags that will accompany her are the only external indicators that I have packed for two.
T1 is more demanding than a toddler throwing the mother and father of all tantrums. Indeed, Pumplette’s T1 will be rewarded with a case all to itself. There’ll be pump supplies. Blood testing kits. Insulin. Hypo snacks & drinks. Spares of all the above. And then spare spares. Just in case. There are crib sheets, short cuts, apps for teachers & a plethora of phone numbers all in the name of T1D. It’s not for Pumplette these are necessary, but for that fickle shadow that will insist on mirroring her every moment!
This year, however, I feel very fortunate. The team corralling 107 children this week are exceptional. The team leader & Pumplette’s group leader, who is also epically picking up the night shift too, are completely amazing. We have had but one meeting, deliberately low key & involving only us, to ensure they’re confident in the processes we have laid out. Crucially for Pumplette, and me, they have the upmost respect for Pumplette’s superior knowledge & understanding of her T1, and they fully recognise she will be unlike any other T1 child they’ll have taken away before. It’s this appreciation alone that helps to ease my angst, for I know they’ll listen to her and or defer by phone to me if they’ve an issue. They understand that I simply cannot document all the nuances involved in the management of T1 for them.
So in the morning, as I wave two bags & a Pumplette off on their exciting adventures in the big smoke, I shall make sure that she sees the big smile on my face for all the wonderful things she will experience & that I keep my anxiety well hidden from her. For I don’t want her to think I doubt her abilities. Quite the opposite. I know my days are numbered as I become increasingly obsolete in her day to day dealings & management with T1.
NB: If you are concerned about the support your child is receiving from their school, you can find information & support here at Diabetes UK Make the Grade campaign.
Back in the summer I was asked to write a piece for Carbs & Cals.
It’s up on their site now – I hope you enjoy it!
This time last year I had been fortunate enough to be invited by Animas to their Bloggers’ summit in Barcelona where I met a truly inspirational bunch of T1 bloggers & patient advocates from across the world who welcomed this squib into their fold & gave me tremendous optimism about my daughter’s future.
Fast forward a year & I once again was lucky enough to be invited back for the 3rd Animas European Bloggers’ Conference. Once more, the delegates welcomed this squib as an equal & we settled into a full day’s discussion as old friends, ready to support & learn from one another.
Kerri Sparling organised an excellent programme of events, kicking off the day talking about two projects that were very close to her heart.
The first project, as a mother, was one that held particular resonance with me. I have long felt very fortunate that the happy chance of mine & my daughter’s birth place has ensured she has always had ready access to insulin & modern technologies to help manage her T1. Indeed, Pumplette also knows how fortunate she is to have unfettered access to insulin wherever & whenever she needs it.
Which is why I am so moved by the Spare a Rose initiative. A simple idea making a massive impact to children who have no access to insulin if their families are unable to afford it. The concept is simple. On Valentine’s Day, rather than giving a dozen red roses, why not give 11 & donate the cost of a single rose to provide insulin to a child in the developing world for a month? Or, even better, donate the cost of an entire dozen roses & tell your valentine that they have enabled a child with T1 to have insulin for a whole year. One whole year of a child’s life for the cost of twelve blooms. I’ll let you ponder on that for a moment.
The other project Kerri spoke about was the #WalkWithD initiative. This idea appealed to me for it encourages us all to reach out beyond our online community in the #DOC & explain to others who aren’t touched by diabetes just what it means to live with, or close to, any form of diabetes. We spoke as a group at length about the need to support ALL those who live with diabetes, be it T1 or T2, so we can help stop the stigma attached to the word diabetes & support all those in our community. We have a much more powerful voice if we’re using it positively & supportively, rather than splintering into many teams & types, sniping about misunderstanding in the wider world, rather than concentrating on educating those who’s lives are not touched by diabetes & where some of the biggest ignorance is nurtured.