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The absolutely LAST thing I have time for tonight is a post…but I feel determined not to let work get on top of me yet again. Especially after meeting Clare H (hello Clare!), a regular reader, in the gym yesterday. I’m thinking: do a post, do a post… And all the best for her daughter C’s move this week to a pump!

ANYWAY. All well here. Some weirdo numbers. Mostly too high. But not thousands. Just a few irritating ones. Pizza dual wave needs changing. Breaded chicken continues to be problematic. And spag bolognese is a pain in the bottom: the normal pasta dual wave is consistently a disaster with this; evidently the fat in the meat slowing things down. So E crashes. Treats hypo. Then hours later goes high.

Argh.

ANYWAY. Another fun one is that using the pump is SO automatic that last night it backfired the opposite way from usual: instead of forgetting to bolus for a meal, E accidentally bolused when he meant to have some free carb (eg without taking insulin to cover the carb content)! Ack. He hadn’t eaten all his meal, so needed to have some free carb to soak up the leftover insulin… Had a cereal bar, and automatically bolused for it. I realised too late, with a kind of weird retrospect, suddenly recalling the buzz from the pump of the dose delivering… an hour after. So in goes TWO boxes of juice (because the extra insulin in the meal still hadn’t been accounted for), and we’re in bed over an hour later than we wanted to be in order to see through this errant dose…

Sigh.

AND — as if life weren’t complicated enough (as ever), Cleo is beginning to pound the floorboards. Which can only mean one thing: the vet was wrong, and the breeder was right — she’s coming into season way before spring.

And Archie is obviously an adolescent. And you know they only want one thing…

Ack.

We’re thinking we’ll put her on the pill for a year or so — what do you think? A bit like when you have babies, it’s hard to stop having kittens…

With that: back to the coal face for me…

 

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Okay so R is now in Japan. Has been there for 5 days, back in four. Having a fab time, taking lots of pictures, and really reveling in the extreme aesthetic differences. Would love to be there with him…! We skype in the odd in-between times, the miraculous hour when it’s not the middle of the night for him or us… This generally falls in the afternoon. In fact one day I shot home from work for half an hour just to see how visiting Kyoto went! So the children have only spoken to him once in all this time. For a family that talks — alot — this has been decidedly odd. And I imagine E especially misses his presence: it’s hard to overstate how much young men need their dads. And in E’s case, he depends on his dad’s objectivity, his clear-thinking, his rock-solid reassurance (the only one E really believes, I know this) around anything to do with diabetes. So it’s probably doubly stressful.

Though everyone’s generally holding up well.

Except for the uh… hour long hypos.

So this exact thing has happened two nights running: a short dual wave (dripping insulin in) for pizza in one instance, fries/chips in the other. (Here I reveal my almost complete lack of cooking skills: we are all struggling with fairly naff food, being used to the dreamboat and exceedingly healthy, home-cooked stuff of R… Ack.) ANYWAY (again), short dual waves. Which usually cause no problem. So an hour after each ends, there’s a plummeting hypo. A very bad one. Taking not one, or two, or three, but FOUR treatments over the hour to sort. E’s fairly swimming in apple juice, and ill from jellied sweets. The adrenalin has kicked in, and he’s panicky, upset, cross…

And who can blame him. Really, really, really a DRAG.

Then, having sorted the long hypo from the night before, yesterday morning I walked into his room and smelled it for the first time: pear drops. Sweets. I sniffed his bin. No, wasn’t that. I sniffed his covers. No, wasn’t that. I realised with a sinking, guilty heart that it was him, his breath. And that this meant he had possibly dangerous ketones. That he would be sky-high, and had been for hours.

Choice words, and crashing guilt. He was high indeed: 17 mmols.

In the event, the high cleared quickly. I signed him off PE (unsafe at 14 mmols plus), and by lunch he was in range. We communicated throughout by text.

Last night the same thing happened. Not just a funny turn then. Something going actually wrong. Four hypo treatments in the space of an hour. I got up in the night (because of the night before) and boy I was glad I did…Once again, he was 17 mmols. I corrected, and by morning he was still too high, but in a more sensible range, 11 mmols.

This is my theory, and R concurs (skype this afternoon!): first, his dinner ‘ratio’ (eg how much insulin needs to be given for each 10g of carbohydrate) needs tweaking. On the pump, ratios are set for different times of day and different meals, depending on insulin sensitivity. For us, traditionally dinner has needed the least amount of insulin (I think this is common?), and it is also the one meal that we change the ratios for quite frequently.

Second, the treatment of the hypos is inefficient. He almost always treats hypos with juice in the first place. Juice is very efficient, enters the bloodstream quickly. He doesn’t like, however, to drink LOADS of juice. So he chose to alternate the juice treatment with fruit pastilles.

The problem was, he was ‘dropping’. This meant that the peak of the insulin was not yet reached when he went hypo (this peak is around 2.5 hours after a dose, or in the case of dual waves, about 1.5 hours after it ends). So it was not a question of ‘recovering’ from a low, it was a question of keeping from going lower… Which didn’t work, both times. Both times he dropped like a stone.

I think I’m pretty clear that fruit pastilles simply aren’t quick enough in for that situation… They don’t work, so you treat again, it sort of works, but you must treat again…My thought is that they kick in well after they need to, stack up, and… result in a scorching high later on.

So. In that situation, no more pastilles. Just juice, just direct sugar. I feel sure that the lows could have been controlled sooner if only we’d stuck with juice instead of alternating with pastilles.

And we’ve changed the dinner ratio. And no dual wave tonight. So we’ll see what happens.

Sigh.

***

It may not surprise you to know that today, instead of marking or doing any number of other domestic and work-related things, I’ve just had a little breather: I met my dear friend Nancy for breakfast, and then later made a spontaneous appointment for the second manicure of my life. My fingernails are now a glorious deep teal blue. E says he’s ‘never really got why girls paint their fingernails’ — and I can sort of relate. I don’t really get it either.

But it is quite unadulterated fun. When I picked M up from school, she saw my nails and said, under her breath so as not to draw attention to them/her/me: how cool are they? how cool are THEY?

Here is a girl who relaxes by lying in a bubble bath, a bowl of chocolate on the side and an audio book playing. She’s as chaotic and non-girly and wacky-arty (seriously more so) than I am. But she gets it, which must be some kind of parenting triumph!

Looks black but is really deep blue/green...My eyes have barely a wrinkle -- but my hands look my age!

As ever just when you think it’s safe to go out…. E spent ALL of Wednesday hypo-ing (it’s Saturday today). At least SIX hypos. Dig it. Just could not get back up. As I wrote to a friend, by the time he got home from school he was literally scraping six month old sweets from the bottom of his bag to get some sugar, having finished off the four boxes of juice and whole roll of fruit pastilles which he always carries with him.

Sigh. That first day we thought we’d nailed it: discovered that he’d forgotten to temp basal from his exercise in PE, and also somehow that he’d been on his weekend pattern for the pump — which means he’d been getting more insulin across the board.

Aha! we thought, that explains it — and changed nothing.

Thursday rolled around: four hypos. Hmm….

Many of these hypos have been in the 2 mmols range — very low, in other words. So we took action, changing basals all over the place.

Friday: one very low hypo. Too high in two more places.

Argh.

Then somehow we forgot to put pasta on a dual wave (drip the insulin in) last night. So he took the full whack of insulin for 95 g of carb up front, followed by 29 g for a bowl of ice cream, 20 g for a packet of crisps and 10 g for some chocolate…and by bedtime was low and plummeting when we discovered the mistake. In went the juice and fruit pastilles…. but of course this morning he woke on 14 mmols because the pasta GOES IN LATE, the HYPO TREATMENTS STACK UP more unaccounted for carb, and THERE WAS NO INSULIN to cover ANY of it.

Sigh again.

It’ll be fine. But something’s changing. Temporarily. As always. We’ll just get it right, then have to go back to where we were.

Am I allowed to sigh three times?!

And tomorrow R heads off to Japan for nine days.

Ack.

In the inimitable words of the fabulously plotting penguins in the film Madagascar: just smile and wave boys, smile and wave…

Hello everyone. And hello again. So many hellos indeed that it’s hard to know how I will start this post… Apologies? Reassurances? Thank you firstly to those who sent messages via email or facebook about whether we were okay.

Yes, we are really fine. Truly fine. I just had to let things slide in the middle of what was the busiest teaching and admin term for me in several years. It became a case of only the absolutely essential bits of life survive! And the blog just went — poof! — like dust. Before I knew it so much time had passed. It is only with the New Year now upon us that I can sit back a little and think now I can get back to this. Thank goodness.

Because I’ve missed it. Lots.

***

Catching up info: E is now at least three inches taller than me! Yes, choke in surprise. It has happened so fast that I keep thinking he’s either wearing heels (not likely!) or standing on his toes (also not likely since he gave up dance about a billion years ago). He is now creeping toward his father’s height of 6 foot, which his father categorically refuses to acknowledge. M too has shot up: fits my shoes and also wears the smallest women’s size 6 (uk, that is. American it’s 2 I think?).

What the heck?

But it’s the sheer food consumption that is doing our heads in. Forget monitoring carb intake. Just forget it. The best we can do is try to get him not to eat too late in the night, so that we don’t have to get up and test. He’ll sit down and have 400 g of mashed potato, eight small sausages, and a pile of vegetables. Faster than any of us can finish our meals, he’s done and standing up for ‘more food’. He returns to the table with a cereal bar, a pot of yoghurt, more sausages… Our food bill has gone up by 50% in the last six months. SO alarming. He eats all the time. We go through boxes of cereal bars, probably one per day. He also doesn’t seem to want non-carb, like meat and cheese. He really, really wants carb, big time. His body must just be building itself, putting together the infrastructure, like constructing a building… It’s incredible to watch.

I realise I’m not telling you anything many of you won’t know. But I am really reveling in it: his growth means his diabetes is controlled. Which is a source of intense relief.

And controlled it is. The last HbA1c was again very good. This is not to say that we don’t have days of weird swings and runs of highs and lows — but we are blessed with a young man who is admirably keen to stay in some control. He never does not act on the information his testing kit gives him, and he never (unless out with friends in town) doesn’t test. This is hugely to his credit, and how very lucky we feel in this.

Case in point: yesterday he was inexplicably 16mmols before lunch. It scarcely matters how that happened, and although it was less than two hours since he’d eaten his snack, he still felt the number was too high. So he overrode the pump and gave himself a partial correction. By PE two hours later he was down to 6mmols — he didn’t eat to bolster up for exercise because he was worried about having been high (is this a run of highs? for instance), but within an hour he’d hypo-ed and had to stop. He treated, and by the time he was home he was a nice even 7mmols.

I told his father the story. He’s a good lad, he said. Indeed. Much better to have tried to get things lower than leave a high and allow himself to get insulin resistant. We know by now that if we don’t act quite harshly, he can stay high for hours sometimes, depending on why it’s happened. In this case, it was inexplicable. He rightly thought the mostly likely reason was not because of a previous bolus, but because of feeling slightly ill, or from a cortisol high. It was unusually high even for the middle of a bolus.

As it turns out he probably didn’t need to do this, as evidenced by his quick fall in blood sugar. But better to do what he did. 

***

Enough extolling! Suffice it to say that we press on. Funny night highs continue, and we just tweak the pump when we think the high might have set in…whereupon it goes away and of course he’s too low. Sigh. We’ve had a good enough few weeks at the moment such that we are hardly ever getting up to test. Thank goodness, because we have been on the floor with exhaustion, both of us. E understands this, and is careful not to eat late if he can help it. We also almost always aim to have any pasta or rice earlier in the evening — before 7.30 pm — so that we can test him right at the end of the dual wave, at 12.30am. I confess that staying up even that late is fairly dire. And once last week OH spilled hot tea over himself in bed after falling asleep waiting for the right time to test… But it’s better than a 3am alarm, for sure.

***

While I’ve been away, some folks have carried on an intermittent reflection over on A Place to Talk. And one question that’s come up from Angela is what people think ‘triggered’ or ’caused’ their own or their children’s diabetes?

Medicine knows quite a lot about genetic predisposition and about viral triggering… I can trace I think E’s trigger through to a stomach bug he had in Italy in 2008. Everyone else had it too, though we only had cramps. He had cramps AND a fever, was really quite poorly. Three months later he was diagnosed.

What are others’ theories, and experiences? As Angela points out, it can feel so random, especially, as in her case and many others’, there is more than one child in a family affected?

And of course it can feel unfair. Does feel unfair. Is unfair. And arbitrary. And stupid, stupid, bad luck.

So there.

Any thoughts welcome.

For now: great to be back.

Well, after reaching the summit to Tryfan two days ago, yesterday the boys in Wales apparently bog-walked (ewww! E reports bog water over his boots), taking measurements or some such — and then swam. Which I reckon was sorely needed, after several walks and no running water (ewww!).

Number wise he was okay all day, though a little high, but in the evening things went seriously awry. For whatever reason (too much free carb? too low a temp? the set becoming non-viable? — probably all three), at 6.30pm we got a message that he was 24 mmols (over twice as high as the high end of what we were all aiming for while he was away) and feeling rotten.

It was dark by then, and they have no electricity. E had been trying to change his set (due a new one) on his own, with a torch, ill from being high, and stressed to the max. And wouldn’t you know it, for the first time since changing over to sil sets, his pump read NO DELIVERY.

A number of things then cascaded into wrongness. E was holding up, but only just holding on.

OH talked him through. Minute by minute, several phone calls, clear instructions. Try a new tube. Then a new cartridge. We gritted our teeth as E described all his pump equipment strewn around his bed in half-darkness. Talk about stress!

Tell someone, I texted him, in some desperation. They will be sad to know you are struggling.

He was still 21 mmols, despite a huge correction.

All of us had forgotten that he remained on a low temp from earlier in the day.

At last the new set was in with insulin that looked viable. But E was terribly shaken, still high, and of course would not be able to join the others for dinner (it’s unsafe to eat when that high for obvious reasons: more glucose stacks into the blood).

When E is that high — and I think this is a common reaction — he becomes emotional and muddled. He has to make a supreme effort to exert his considerable strength of mind and intelligence to trying to gain control, to understand sequences. The added stress of being away, in the dark, and on his own, meant that for a short time, it was a losing battle for him.

This end, we were losing our own battles too. OH was preparing himself to drive six hours and go get him. I was wrestling with useless tears. Daughter M, once again, had wisely set herself up for dinner in front of the box.

At last OH convinced E to go to a teacher. Who phoned within minutes. She had taken control quickly. Found things he’d lost. Sat him down to wait. Established how long he’d been high.

We tried to explain how he’d be feeling. We said it should get better. By this point we’d set a high temp, and anticipated him coming down fast. She’d saved some food for him. If he’s not down in a couple of hours, OH began — we’ll drive him to the hospital, the teacher said.

Probably not, OH said. They won’t know what to do either.

And this is true. Don’t even get me started on what medics don’t know. How they will remove pumps. How they will run both glucose and insulin in simultaneously (completely counter-productive). How they might think that 2 mmols is fine (when it’s mega-hypo), or that 6 mmols is too low (when it’s within range). Or that, so long as the person is feeling okay, 18 mmols is not bad (three times as high as you want). I’m sorry all you medics out there, but these are true stories. The training for hospital diabetes treatment must be seriously deficient, and is entirely crisis-oriented. By hook or by crook, diabetics survive hospital intervention. But so often it is ridiculously and even near-dangerously cack-handed.

Anyway. E had some carb free food: cheese, ham, cucumber, and immediately began to feel better. In 20 minutes his level was 17 mmols. He ate. In another hour, he was way down to 9 mmols. By this point the high temp was off. He had to have some free carb or he would crash. In another hour he was, yes, low at 3.8 mmols. Some juice, and more free carb.

Like a yo-yo. Poor lad. He set a 70% temp to reflect the exercise of the day, and we all agreed he could make it without night testing. Crisis over.

Only guess where they are headed today: SNOWDON. The highest mountain in Wales.

He must be shattered. Up until nearly 1 am. A walk lasting many hours in front of him.

We’ve barely heard from him this morning — a rush getting out, apparently. I’m fearful that last night will hang over him, tempt him into insecurity, into double-guessing his judgement. He’s SO good at all this. He’s great. We keep telling him.

A little prayer then: let last night go. Start the new day. Trust your instincts. Know that you are strong, and can do anything.

I’ve had the odd sense in the last few days that I really shouldn’t do a post about the kittens. There are lots of other things to talk about, and some of the reason I’m here is to talk about them: our experiences with type 1, the way that diabetes is seen and talked about (or not), and our family functioning alongside all of this….

So I’ve decided to DO BOTH. In time-honoured multi-tasking fashion.

First, for days I’ve been haunted by Justin Webb’s article in The Daily Telegraph online. OH sent this to me, and I happened to read it on my way into work, stuck in the car park. I should have known better, because it completely undid me for a few minutes. Once again, the relief of reading about how someone feels, how they understand, how they get it, can be overwhelming. And to have my feelings encapsulated, for just a few moments… Still overwhelms me, and probably always will.

Second, everyone is back at school and so far so pretty good. Daughter M has swung into her last year at this school with real vigour, to the point of having a school play audition from 5-6pm tonight. So watch this space. E’s numbers have been pretty respectable as well, with too many hypos however and a couple of odd highs. The change in routine means a fairly wholesale overhaul of his doses and ratios, so we’ve been chipping through that the last few days, with decent success. Fortunately his night time levels seem to have stabilised, and we had three — count them three! — nights of unbroken sleep.

That saying, he did wake on 2.7mmols one morning. We know the reason and it is this: he fell asleep without testing. We came in and tested him before we went to bed: 3.3mmols. Semi-woke him under great protest, forced in most of a carton of apple juice, and put him on a very low temp for an hour. This was still not enough, clearly, thus the 2.7mmols at 7am.

Lesson: he mustn’t go to sleep without testing. End of story. If he had tested, he would have seen he was too low (eg 5mmols or so) for the night, and had a biscuit, which would have done a far better job of holding him steady in the night.

(Heartache: that he has to do this at all. That this ‘life lesson’ is literally one about life. He forgets it, of course, at his peril. Which is, how shall we say, a stupendous drag.)

Sigh. We continue to live and learn. And learn, and learn and learn.

***

And all along, like our own secret supply of the sweetest music imaginable, are the kittens:

2 weeks old!

Archimedes, Eudora, Artemis and Little Miss Unnamed Yet at the back

Archimedes, Miss Unnamed, Eudora, and Artemis apparently playing dead

Archie standing, Eudora swatting Artemis, Miss Unnamed maybe cleaning?

As you can see from the captions, we are beginning to name them: Archimedes (or Archie) is the larger darker boy. He always looks a bit disheveled and bumbling, because he has long, plush fur, and also M says, because his eyebrows are tufty! Eudora is the lightest, a girl, and she is extremely alert: the first eyes open, the first out of the box. She also now comes toward our voices, which is heart-melting. Artemis is the darker girl (we think). Called thus because of the gender confusion, and because two members of the family are very into mythology (Artemis is often used as a boy’s name now, but is actually a goddess from Greek mythology, a huntress and goddess of wild animals and childbirth). Artemis looks like a delicate one, very fine face. She is third in development and shy, but now beginning to show herself. Miss Unnamed is really only slightly so: we are stuck between Pandora and Eurydice, the former because it’s like Eudora and they are both light, and the latter because she is a bit of a ‘follower’, more reserved — was the last to venture out of the box, and is frequently sleeping while the others are playing. Negatives about Pandora is that she let all sorts of evil out of a box! And that seems unfair to put upon a kitten (though M points out that Pandora also released hope, which was mega good…). Negatives about Eurydice is that a) it’s hard to say and b) it’s hard to spell! And what could it be shortened to in which case? Eury?

Anyway, as you can imagine they are the light of our day and HUGE time-wasters. Cleo is still confined with them, so I’m still doing lots of letting her in and out of the room. Cleo is also eating for Britain, so our cat food bills are tremendous. I allowed Schubert in the room with us today for the first time. Cleo was very relaxed, stretched out. He came in, she watched closely. He sniffed out the room, stuck his head in the box. By this time Cleo was on her feet. He and Cleo sniffed noses, and he left the room.

A good start!

For you real die-hards, I’ve put a 9 minute video up on YouTube. It’s a film of Eudora and then Archie venturing out of the box. Eudora had already been out once, and this shows in her far-wandering propensity. Archie is a brief explorer. Cleo was there and can’t figure out what to do with her wayward daughter….

If you do watch, I apologise for the 2 or 3 minutes of  filming into space… I just forgot what I was doing, alas. Also, mid-way through you can hear E (muffled like the adults talk in the old Charlie Brown and Snoopy films) outside the door. What he’s doing is telling me that he’s home from school and tested his blood. And that it was 15mmols and he doesn’t know why because he’s checked and he did dose for lunch. But that’s he’s corrected with more insulin and won’t have a snack until his level goes down — even though he’s starving. Argh. And heart-tugging.

Anyway, be patient. There’s some nice footage at the end. Such a good mummy!

All well with the new additions: four healthy seeming, good feeding and content looking sort of white kitties. Cleo continues to languish in her box, kneading the air — which is called bicycling, and is a very good sign that she’s lactating and happy. She’s certainly purring a lot!

Last night and twice this morning she asked to come out of the room. She proceeded to eat loads of Schubert’s food, drink from the bathtub as of yore (remember, she has all her own food and water in her room!), and explore the WHOLE house. She keeps checking out her old possible nests, and at one point found a few more: under the sofa, under the bathroom cupboard… Right.

Absolutely NO WAY, is all I have to say to that. We can’t keep those babies safe in another situation. They will set off across the room again. Schubert will think one is a toy. It’ll be awful.

I’m only just beginning to stop feeling faintly ill from constant anxiety. Stay where you are Cleo, in a nice, furry cat basket, lovely and warm and quiet. You really don’t want to move them to the middle of all the action. You really, really don’t.

I’m also getting over my anxiety about her adventures away from her babies. She leaves them while content and wanders about the house, for 20 minutes sometimes. Although as I type she’s been snoozing with them (who can blame her, after what she’s been through) for six hours. But when she wanders, I fight panic. I’m afraid she’s going to forget about them. I know that’s silly.

I’m silly. She now knows what she’s doing. And they are stronger every hour.

I remember a dream I once had about forgetting newborn kittens in a cupboard in our old house. I looked and looked for them, and never found them. When I woke up, I was devastated. I had this dream years ago, around the time I lost a pregnancy.

Strangely, I think it’s that feeling which has partly come back. Combined with the panic of having an actual newborn baby human: like if you forget about them for a minute, they will come to harm.

Not true, of course. Funny how I have to learn that all over again.

***

In the land of type 1 diabetes, we are still struggling with night numbers in particular. Having lowered the basals, things once again went a little high last night. The thing is: we are dealing with a moving target. Diabetes never stands still, not in adolescents, anyway. What may have worked two days ago has no guarantee of working today. At the moment anyway. We can only keep pitching the balls, and hope to at least stay in the ballpark….

And I forgot to say in yesterday’s entry that roughly two hours into Cleo’s labour E came in and said that just to add to the stress he had just figured out he’d forgotten to bolus (take insulin) for lunch. Which was rice, a seven hour dual wave (dripping in of insulin). Which explained why he was 23mmols and feeling grim.

Sigh. No one’s fault. It’s so easy to do in all the fuss. But it took him three hours to come close to back in range, 11mmols. And then of course by 11pm he was too low.

Sigh again. He handled it well and didn’t complain, even though I know for an hour he thought he was going to throw up.

And during that time, two more kittens were born.

1) no kittens yet, though prowling mama won’t settle and then sleeps for hours. I’m off out this morning to get rubber gloves (eek) and antiseptic. Just in case.

2) E’s nighttime numbers have been CRAZY. First we up the basal, then we lower it, then god knows…. Not meeting with much settled success at the moment. Messed up my alarm last night and didn’t wake til 4am. Tested and he was 2mmols. Mega ugh. CHILDREN DO NOT WAKE WHEN HYPO.  All this when having been 7mmols the night before, and 14mmols the night before that. Sigh.

3) we have not had an unbroken night’s sleep since about 20 July. Feeling quite used to it, but if we can’t get on top of this in some form before school starts, we will be dishcloths. I cannot help but feel that being in our late forties has something to do with this…Not built for it anymore. (Sorry, OH!)

4) AND Schubert disappeared for 12 hours yesterday. Scared us silly. Last thing we need is a runaway cat. Would rather trade in the kittens than that! He is now zonked out, not even rising for breakfast…

Over and out… And around and around…

If you haven’t explored the Urban Dictionary, you might want to think about doing so. I say might, because if you do, you also have to be prepared to run across some shall we say colourful definitions. All the words are input and defined over time by readers….so some of them are decidedly wacky, and many of them are not fit for under 16s.

However. Having a 14 year old in the house does mean that these totally unheard of words enter common usage. Hench is one of them, and one of my favourites. For anyone who doesn’t click through to the dictionary, it means large, muscular, fit. As is the way with slang words, it’s also used with this kind of smart boy self consciousness. And it really does make me laugh. As in:

1) from OH: I’m going to go to the gym now, and get hench.

2) from E, while watching the World Cup, about the players in turn: hey Mum, is he hench? Well is he hench? How about him then?

3) from M, about our large fluffy white cat Schubert: he’s not chunky, he’s hench.

4) from E again, two nights ago, on the verge of inserting his first CGM sensor: this is one hench needle.

******

Yes, we have finally but finally ventured into CGM land. And the jury’s out so far. The sensor insertion is, I have to be honest, pretty grim. The needle is VERY hench, and scary for a slim boy with virtually nothing extra on him to fire it into. He really had to screw his courage to the sticking point. Did not want us to do it. And it was quietly a little heart-breaking to witness. Like the sil-sets, the needle goes in at 45 degrees, and like the sil-sets, the insertor sounds like a small firework being set off. Disconcerting if you’re not prepared for it. But by far the hardest thing really is the clunkiness of it all. It’s big on his stomach, with sticky tape over it, and that combined with a pump set… well, we will need to see how this goes. At the moment, it’s feeling invasive, and a little brutal, somehow. Perhaps this will pass.

We long for it to pay off, for his quality of life to be improved. It’s all worth it then, and he’ll learn to do it, exploit it, and live with it.

At the moment though, the readings are still up to 2mmols off and the hypos had in the first 24 hours weren’t picked up in the readings.

I suspect there is considerable skill to this, learning when to calibrate the machine for maximum benefit and accuracy, when not to.

For now, the best we can hope for is that in the next day or two he may be able to have a snack without testing. Or we may be able to get up in the night and look at the graph rather than wake him and poke his finger. This would start to feel like a promising path.

In another five days, there’s the prospect of the next hench needle to contend with. He doesn’t have much room on his stomach for the CGM and the pump, certainly not enough to guarantee good rotation of sites. So he’ll have to circulate the CGM elsewhere, to his leg perhaps. Which will be another leap of faith for him, and more courage. He has terrible memories of painful injecting on his legs.

Sigh. Every change and improvement in control and quality of life is preceded by a period of insecurity and SUCH hard work. And stamina, and courage. And belief. We’re in this together, but it ain’t half hard sometimes. I don’t want this for him. We don’t want this for him. Sometimes it feels like we would trade ANYTHING for him not to have to deal with this, day in and day out, morning noon and night… And when it’s like this, useless anger comes in waves: why, why why?

Sigh again. Just because.

Things continue to be hither and thither — hence my struggle to post! Apologies. What always then happens of course is an overwhelming urge to say EVERYTHING.

Not possible. So a quick run through: we think Cleo the cat is with kitten! Her brother is able to tolerate her, phew. We had a party for 30 people last week, and the sun managed to shine throughout! Phew. I’ve taught some year 6 (11 yr old) and today year 5 (10 yr old) school children poetry these last few days too. Really excellent fun. Phew! I delivered a paper to the Poetry and Voice conference at University of Chichester over the weekend. On how different sorts of writing have served different purposes since my son’s diagnosis — and on how the beach hut poems came about. Went well I think, and the whole conference was a stimulating one. Phew!

Not so phew: daughter M, six weeks after cracking her cocyxx in a rounders match (seriously painful, missed two days of school), then jammed her ring finger on her, yes, fingering hand…. So has had to re-schedule her violin exam. Oh dear. Very painful, swollen joint. Little delicate hands. Sniff!

Not so phew too: battles with lows. The heat seems to have had the generalised effect of lowering E’s insulin needs, so last week we had several evenings of unfortunately several hours of dragging around in the 3’s and 4’s… Even with the pump on 0%, eg actually off. It was extraordinarily wearing for him, and a I don’t mind admitting that one night it was a little scary: no insulin going in, already treated two hypos, and gee, 15 minutes later he’s still on 2.5mmols... Disconcerting. But we got up I think half a dozen times that night, and by morning he was okay.

Sigh. Then after 3 nights of going high from too low a temp basal (too little insulin) in the day — we think we’ve sort of cracked it. For now! 90% temp basal in the day, plus 90% of the usual carb counting/ratios. Turn off temp in early evening to stabilise for the night. Unless he’s exercised of course…! In which case turn it to 95%.

Assuming he remembers that he’s exercised.

Assuming that we remember what he’s told us. And that we all don’t crash out on the sofa from SHEER EXHAUSTION while watching the World Cup, where England did SO BADLY. Oh dear.

Did I mention that on the way back from Chichester the car sprung a diesel leak and I ran out of fuel while passing a truck? Scary.

And had to wait on the motorway verge 10 miles from home. Never, ever nice, traffic whipping past at 80mph. I took my linen trousers and sparkly flip flops into the nettles and thorns, up the bank, I can tell you!

And did I mention that because one car is in the shop I did all the driving this morning: child to school, OH to work. And oh, deliver a testing kit to the OTHER child across town, because accidentally forgotten….?!

But we’re here. And we’re okay. As long as we keep our juggling hands free.

Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Distance Travelled

Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.