Freestyle Libre

 

This is an interview that appeared about a month ago in Diabetes Ireland.   An interviewer came out to ask us about our experience with the Freestyle Libre......

Breakfast

5 minutes ago.....

"K, did you bolus breakfast?"

"Yeah"

"Are you sure?"

"Yeah"

"Can I see?"

"Oh...no I forgot, I'll do it now"

(sigh - walks in to front room to watch the bolus)

Growing Up

Eight months since entry, wow.  I started this particular draft in June, one of many, most of which are not even half finished

I now find that, although I am still writing entries into my blog I am finding it harder (due to the potential impact on K from a confidentiality point of view) to hit 'Publish'. No-one in our real life knows about this blog (to my knowledge anyway), I've never discussed it with anyone except M - even K doesn't know about it. Rather I began it as a way of connecting with others across the globe facing the same trials as we are.  I also, I think, wanted to scream into the wilderness about my anger, hatred, fear, confusion (insert random negative noun here, I've probably had them all) about K developing D.

Anyway, on to the post, rather two posts in one, the good and the bad;

K is growing up!

A major event in the last few months - Confirmation.

Its would be within the normal bounds of probability if you, dear reader, were to assume that we (being in the Republic of Ireland and with a Gaelic surname) are Catholic (of the sometimes practicing kind); and if you made that assumption you would be correct.

Therefore, on reaching the age of 12 and being in 6th class in Primary School this year K made her Confirmation (a religious ceremony to highlight the transition to adulthood, effectively making the promises yourself that your parents made on your behalf at Baptism)..

Religion aside this is perhaps the most obvious ceremonial marker of change from child to adulthood that we go through and K was suitably excited...

We had a lovely ceremony (minus the boys until the restaurant afterwards - due to the 120 kids being confirmed it was parents. sponsor and grandparents only).

Post ceremony pic

K and her cousin posing

K showing me her religious artwork

Yes my daughter is growing up.  While K will always be my daughter, she is almost already no longer my child. Rather she is becoming her own person, while I am beginning to age into grateful irrelevance.

I am happy with this, although I can now really understand the meaning of the word bittersweet.

And yet I know we are not there yet. It will be a few years yet before we can shake off the mantle of care (if ever).

 

The Bad

 

In the last few months K has been careless of D.  In March she had her highest ever hbA1c, requiring a return appointment 2 months later which, although lower, still seemed unnecessarily high.  

 

D is a pain for a child (to understate woefully).   They aren't quite aware of the seriousness of it and would (of course) rather just run and play and eat whatever without sticking a pin in their finger or calculating a bolus for every simple piece of food to enter their mouth.

 

In the last few months K tends to 'forget' to test; and, (more seriously?), forgets to bolus. (There is a lot of denial going on).

 

We have found that we were constantly having to ask K had she bolused and, in the last few weeks when she was super high I asked to look at her pump - although she had said she had bolused no buttons had been pushed!!

 

Things came to a head somewhere about a week ago.   My mother had been minding the kids for the day (M & I being in work).      When I went over K's figures for the day I saw she was super high (15's - 20's, 270-300).   When I went over the pump readings I saw that not only did she not bolus, she didn't even correct the highs!!

 

I lost the rag.

 

I spent a good 10 minutes berating K and giving out about the seriousness of what she was doing.   I referred to the silliness of not correcting ('referred' sounds slightly calmer than how it probably came out at the time).  I also reminded K that, yes D is a pain, but it still needs to be minded and all it takes is tests & bolus; that she will feel better in herself if she keeps up the routine.  I know that D is so much more than this on so many levels but I was trying to downplay the maintenance effort while emphasising the seriousness of not minding herself.

 

I ended the tirade by banning her from her tablet for the night; only at this point did I seem to fully engage her attention and my word was she upset.

 

K hates D, hates to the point of sometimes refusing to acknowledge its existence.  Seventy per cent of the time she minds herself but unfortunately 70% isn't enough.    And I hate, hate, hate having to give out to her about something she didn't ask for.   And yes I know there are more constructive ways to try get your child to test/bolus and we have tried them and have mainly relied on them for the last four years. And yes I hated, hated, hated myself for banning her from her tablet.

 

My mam said afterwards she was glad to see me giving out; does this mean I returning to more traditional 'directional'  parenting rather than the more modern 'guidance' methods?   I really don't know (and don't hate me for my anger that night - 'I don't know how to do this' could be my parenting phrase of choice). 

 

I suppose I am just trying to get K healthily to an age where either there will be better treatment (a cure?) or where she will see the benefits of self-care and do it herself.

And parenting is not a popularity contest; if K blames me for D but minds herself I can live with that, if K hates me for this but minds herself I can live with that also. 

 

 

But....Back to the Good

 

A week later and K's numbers are better - I asked her about this and she smiled and said it was because I was so angry that night!!

 

I don't know how long this will last, however because she minded herself so well over the last few days she got to go with her aunt & cousins this weekend to Wexford!!   K has had sleepovers before but always within emergency driving distance (e.g. 10-20 minutes away).   Roslare Strand is a good 2 hours away by car.  K went down Thursday & is due back today (she even did a set change herself (which she hates doing) down there when her set fell out).  

 

And yes I'll be sneaking a look at her numbers when she gets back.

Annual Eye Test

I hate the annual eye test.

I have read that damage can show after approx. 5 years of T1.

I don't know how true that is.  What I mean is; I understand the effect of high bloods on my daughters eyesight, but I don't understand the scale of 'how many highs equals damage' beyond the (simple!) hospital instruction of 'just keep good blood sugar control'.   

K has now had T1 for three & a half years.     She hates the eye exam for the stinging drops they squirt into her eyes to dilate the pupils.  

I hate the exam for the fear of signs of damage.

Today was the day.  

After the exam the doctor opined 'Eyes are perfect, make another appointment for 12 months time' - (slow exhalation of subconsciously held breath).

Another day in the life of D.
 

Whoa....long time....no entry

Hello Mr Internet.

I haven't been here for a while.     I (well really the kids) broke my laptop months ago and, although i'm shopping to buy a new one I haven't found the model/components I really want at the right price (i'm writing this on my sons laptop).    Work has also been beyond mental for the last few months, at times I've not seen the kids for days at a time (out of house before they're up, home after their bedtime).

Therefore, apart from the odd web browsing on my phone I haven't been keeping up with entries.

So, whats been happening since May? (this post is a bit of an online diary)  Well, apart from a couple of HBA1C results (like a school report they read 'improved but could do better') D has been relatively well behaved.

And as for us, Summer hols brought us to England and Northern France.

Harry Potter Experience London

LEGOLAND, Windsor

And Northern France

(daddy got to do the Normandy beaches (kids not impressed, history, BORING) and a day trip to Mont St Michel)

Our Growing Girl

Is girl still the right word? Maybe......but definitely not child or kid.    We have a happy, healthy, occasionally sulky 12 year old pre-teenager who cares only for Niall Horan of 1D.

She/we have chosen her secondary school, and she'll be starting there next year.

D still causes the odd kerfuffle.   K is quite disciplined about testing (but needs reminding when we're about, quite happy to let it slip then)....She is also good about not eating the wrong foods.   We've been able to keep it to a more minor part of our lives over the last few months (is that another reason why i'm not updating the blog as much, I wonder?).

Anyway, the Christmas season is on us (K & I have been singing carols for a fair few weeks already!!!) so perhaps i'll write a bit more during those hols.








 

Nighttime

Its 1:30a.m. Sleep is only coming now. I have those middle aged, middle management, middle of the night cares that keep husbands up watching telly till all hours.

I go to check K.    Tester isn't on the bedside locker, nor the desk. I trot back downstairs, checking the usual places...no, not on the dining room table where it can be dropped heedlessly.     Not on the kitchen counter where supper was eaten. Not on the couch where she pleaded to be left up for another few minutes.

I go to fruitlessly search upstairs again. "Flip" (or similarly starting words), there it is, lying in all its indolence on the stairs... I lift the tester and carry it to K's room.

I often have to lance K's finger twice at night. I can't bear to prick her finger so the instrument is held too lightly at first to allow a piercing of her skin. I overcompensate and the 2nd causes a heavy flow. I siphon the necessary blood and the meter calls a 3.6, a normal reading for a non-pancreaticly challenged child but not enough for my daughter.

I break the gluco tabs in half and try to fed then to K. She stirs, heads to the loo (with me ready to leap if she collapses).

K goes back to bed and finishes the glucose tabs I break up and feed to her. I don't think she has woken up at all.

Same time, same place tomorrow night?

Yippee...first non-family sleepover

K spent last night, all night, and most of the very early morning in a gaggle of giggling girls.

Much junk was eaten, many chick-flicks were watched, the whole cosmetic department of a reasonably sized shop was painted on faces.......and 5 tired girls were collected this morning.

"What time did you eventually get to sleep at?"

"About 5ish" (impish smile).

"Whaaatt? And what time were you up at?"

"About 7:30" (impish smile fading quickly).

A very happy, very tired girlie today.


Oh, and the least said about the high bg's the better.

(And maybe two parents glad to have a rapidly growing up daughter back under their wings for a little while longer).