The MiaoMiao

TD is sitting on the edge of the bed, holding a clove of garlic as if warding off evil spirits or fleas, and we are discussing this blog.  I initially was going to tell you all about the MiaoMiao, but she thinks it is too soon.  So she was suggesting other topics :  the garden, Andrew and my 30th wedding anniversary,  tortoises, our mother/daughter relationship, the weird dreams we had last night, arum lilies and water systems of plants.  Meanwhile Andrew is bringing freshly baked cheese biscuits for us to sample  - they are delicious - and I realize that there is beauty in the mundane.

So - the MiaoMiao.  This strangely named device is new to our household, so maybe TD is right - it is a bit soon to write about it, but I will give you some background.  TD uses the Libre Monitoring System for measuring glucose, and it has changed her life.  It replaces the 12+ finger prick tests she had to do for all those years (can you imagine inflicting that sort of pain on your child day after day, year after year with no possible holiday to let her fingers recover?) The Libre is a sensor that is placed on her upper arm and has a filament that sits 5 mm beneath the skin to measure interstitial fluid.  It needs no calibration (finger pricking) - unless something major is going on, and it reads the glucose every 5 minutes and can be read via a hand held scanner.  The sensor gets replaced every two weeks. Sounds good, doesn't it!

 Libre sensor and reader    

 

     But the thing the Libre does not do, is alert TD (or us) if she is in danger.  And not to hammer home the point, but all type 1s live with the daily danger of losing consciousness and going into a coma.  Hyper vigilance is key to good management and safety, but I am sure you can imagine how exhausting that can be over a sustained period. 

Introducing the MiaoMiao.  This device sits on top of the Libre sensor and has a Bluetooth connection to any smart phone.  Several apps have been developed which interpret the data that is conveyed from the Libre through the MiaoMiao and onto the phone.  And it sends out alarms when the glucose is too high or too low. 

The MiaoMiao sits on top of the Libre Sensor

We are still figuring out all the processes  and best usage.  One of its strong points is that it can be used as much or as little as liked; TD is using a sweatband to hold it in place, so that she can take it off  and put it on with no fuss. Andrew and I have been routinely checking TD's glucose at around 2am, and an alarm system will allow us to sleep longer and respond to emergencies.

Not yet, of course.  We still need to learn how trustworthy the device is, because complacency is not an option.  There have been a few hiccoughs - The Libre readings (which we trust) and the MiaoMiao readings have not always correlated - sometimes being wildly different. 

TD is happy to try this new tech.  She was delighted with how small the device is, and the ease of use.  She does not want us, as parents, to have constant access to her glucose numbers, so the app is on her phone only.  We respect that.  

It is early days.  We are holding thumbs this will be a great success and that technology will do some of the hyper vigilance for us.

And the idea of writing about tortoises is growing on me, so to whet your appetite for the next blog, here is a picture of Tolstoy for you: 

Tolstoy the tiny tortoise

 

 

 

 

Hello World

Well.....it's been a while.  When I sit down to write, something whispers in my ear that I should be doing something else.  Procrastination is an art, if properly done, and needs practice to perfect.  I am getting there.  In the meantime, TD has become my Digital Media Manager and has signed me up for Facebook.  Who would have thought I would ever venture willingly into such a public space.  To be honest, it is not under my name, but I can use it as a vehicle for telling the world  about a little cottage industry I am dabbling in, so there are no personal revelations about our household.  No, I do all of that here, in this blog. (😏) TD is somewhat of a pro at this social media stuff,  and takes very nice photos to add to the presentation. Arty.  Different.  Creative. Expressive.

It is exam time again, so TD has removed herself from Instagram for the duration of the study period. (and she does not do Facebook.)  She needs to sleep.  Digital distractions are time consuming, so I am pleased that she made the decision to limit them, and concentrate on what needs to be done.

Not to overemphasize this whole sleep thing, but it really is getting to crunch time.  Like eating and expecting your pancreas to compensate for your carb intake, we often take sleeping for granted as an expected working body function.  T1 is vicious: it not only restricts your sugar intake, it also restricts your sleep patterns.  It is not safe for TD to sleep 8 or 9 straight hours without testing her glucose level.  My alarm is set for 2am every morning.  Things are easier with the CGM (Continuous Glucose Monitor) as TD does not have to do a blood test.  It is a quick swipe of her arm, and hopefully she doesn't even wake up.  If things are wobbly, I check her again at 3.  And then I make a judgement call if it is safe to leave her until the next reading that Andrew does at 5.45.  Most nights are fine, but the few nights when we pick up lows remind us that we cannot get complacent. It is a matter of life and death.

 This Sunday the cashier at the local Spar generously gave us a pensioners' discount when we went to buy ice creams after a wander/bike ride around the neighbourhood.  Clearly we look a bit older than we actually are . And when you are a teenager that might be considered a compliment, but at my stage of life it signifies a certain need to schedule more sleep :)

The year is winding down.  Soon we will all be able to exhale, get into holiday mode and allow ourselves the space to rejuvenate.  And sleep of course.

But let's not get ahead of ourselves.  There is plenty to do now.  TD needs to update the Facebook page, I need to find some more creativity. We all have projects to complete. We need to be Arty.  Different.  Creative. Expressive.

Strength to you all, as we gallop towards the Busy Season.  May you be sure footed, and stride over the hurdles with ease.


 

My windswept look at the last craft market! If you want a closer look the Facebook page is called Reflections Glass Pendants