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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…

 

So the reason R was in Japan was to deliver a lecture and to have a piece performed. All of which he enjoyed a great deal, and which went well. Even the simultaneous translation bit, which must have been a remarkable experience…

So he receives a fee. In cash. Which necessitated him doing the most uncharacteristic thing of shopping. In order, you understand, not to end up losing lots to commission converting the currency back.

So he returns yesterday positively laden with gifts: some hand-painted small ceramic somethings — very beautiful, eight of them — a very finely worked inlaid wooden box, pashmina type scarves for M and me — again, so finely made, pure wool, so soft — a couple of small prints, a couple of Shinto good luck charms (‘traffic safety’!), a brilliant duty free watch for E (much needed), and a bit of duty free bling for me. Packets of rice crackers and rice sweets. As you do.

 

Every girl deserves some bling!

 

 

So last night the family was gripped not only by the presents, but also by the origami birds and asymmetrical wrapping lavished upon each gift. The classy ribbons, the display boxes. Even the stickers holding the ribbons in place and the bags closed were things of beauty somehow.

So none of this was particularly expensive. But the care of the presentation, the boxes and bags and tissue paper…is almost breath-taking, an experience in itself and unto itself. When straightening up, I could not bear to throw anything away, even the paper and said stickers. I put them in our ‘bag and wrapping’ drawer in the kitchen.

So how do we — us, the Japanese too — marry using so much paper with wastefulness, with recycling? And if I’m honest, with the almost cleansing aesthetic pleasure that the results, the process, bring?

However we slice it though: it’s so good to have R home.

***

Meanwhile E battles a long-lasting, dragging sore throat which began toward the end of hypo lane last week and is now gradually wearing him down. Probably the same one that kept his sister off school two days the week before. His levels are becoming quite irregular — 4.4 mmols yesterday morning, 17.5 mmols this morning! We are all just reacting — no choice — and he soldiers on. Has a Spanish assessment today. Doesn’t want to miss it.

Sigh. We correct and send him off to school on a 200% basal temp, fingers crossed he doesn’t crash.

And M has brought her stunningly beautiful inlaid box into school. Along with its wrapping paper. And the blue origami bird.

Okay, so I changed the evening ratio and the first night it was a DREAM. 6.1 mmols at bed, 4.8 mmols upon waking. Sigh of satisfied (and slightly smug) relief.

Things trot along fine yesterday, then, huh, too high before dinner, 11 mmols. End of dual wave pasta from lunch. E comments that it’s too high even for the end of a dual wave and that he thinks the changed dinner ratio will just make things worse. He wants to override the pump and give more insulin.

I resist. More than one day testing is our motto, and we just can’t tell how things are going to go.

So he was right (again). At bed he is 16 mmols. ARGH. Correct and test another hour later. 14 mmols. The pump will not correct again… and this morning he’s still too high, 10 mmols. Another argh. We correct, and when he gets up for breakfast, he’s fine, 7.3 mmols.

Then he forgets to take insulin for breakfast (SO easy to do). Which of course we don’t realise until testing for lunch, three hours later. When he discovers he’s 18 mmols. Triple that argh. We correct and put him on 200% (basal/background insulin). He’s massively apologetic, cross at himself. We also make the decision that he’s going to eat with us rather than put his food in the oven where it will become even crispier than it already is (remember, I’m ‘cooking’). This of course means that him coming down will take MUCH longer… more food going in means more for the body to deal with…

He does comfort himself/me though by mentioning that at least he won’t get ketones, because there is a LOAD of insulin running around his body by now…

Nothing like searching for the half full bit of the glass! Bless him.

It is stupidly easy to forget to bolus for a meal or snack. Reason being: when weighing, measuring, calculating become second nature, then it’s just a momentary lapse that results in skipping the final step — and because it’s such force of habit doing all this, you don’t even remember you’ve forgotten, if that makes sense. Until you stumble across it.

So now it’s three hours and three blood tests later and he’s 12 mmols. On the way down.

The next unknown will be dinner and its ratio: what will happen tonight?!

***
R home tomorrow. I confess I’m now getting a bit tired, hazy with what needs doing. Along with all of the usual kid organising, shopping, meals, laundry, my work (what work?!), cats, guinea pigs, homework etc, there is as ever all the diabetes kit to keep track of: managed to order and go pick up strips and lancets four days later…only the manufacturer seems to be having problems with the strips and they are nowhere to be found…Hmmm…So I have to remember (again, and maybe even again if they don’t have them) to phone or go in and track down the strips. (And prepare the ground with E in case the chemist doesn’t get them in: we have a supply of sorts for another sort of meter, but old habits really do die hard.) Also managed to check insulin supplies — today — and find that we only have one vial left. So ordered those too. And ordered glugogel, because although we’ve never used it, I suspect that having some in-date is a good idea! We are lucky to have a really convenient and helpful chemist, right in our grocery store. They keep track of everything and request repeats from our doctor, which saves me a step… But even they did look at me a bit like why are you placing three orders here over several days when if you’d had your mind even half together you would have done it all at once last week?

Oh well.

The good news is that Archie and Schubert are pretty much best buds now. Cleo however still has this odd love/hate thing going with Archie, and will walk right up to him, hiss in his face, bat him, then run away. And he’s just standing there minding his own business! Then he might run after her, and she runs and hisses and makes a huge fuss…but actually seems to be almost playing…? I don’t know. Neuroses clearly infect even our pets in this household!

Here is the delicious Archimedes, in any case…

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!

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.

Is it very bad if I take this one chance in two weeks to post – seeing as I’m sequestered in a Starbuck’s waiting for straggling students. Straggling and bedraggled as it turns out, in the light rain.

We are in town ‘doing’ some psychogeography – a walk following an algorithm. But it’s wet, alas.

So. News in brief:

1) E again running high in the mornings. Growth. Herewith ends our 2 week stretch of unbroken nights. We must get up and test to try to ascertain at what point he is rising…

2) but not react too aggressively because from Sunday he is away in Wales for a week, no running water, no electricity. Snowdon to climb. Heart attacks to give his parents. He will set running a little high (but not too or he will feel rough and be low energy) the whole time. Hence we go easy on the night levels. For now.

3) this trip should be fine. Should be great. Everyone is prepared. My motherly concern is that he not feel too alone in having to deal and make so many hour by hour by minute judgements in the no doubt changing and out of routine environment. We shall see. Gulp.

4) term has started for me. Hence the headless chicken thing. I think I will come up for air around early November. Alas again.

5) it’s raining. I said that, didn’t I?

6) the KITTENS are spectacular. Like popcorn. Heads held quizzically. Napping in the most awkward positions (sliding down sofa arm, in someone’s crossed ankles). Photos. Will add vid when I get home.


They are now of course escape artists so are underfoot all over the house. And unbelievably lovely. What an experience. And mama Cleo has just been so happy, calling them, checking on them, grooming them. Even though they are weaning. So salutary really….

7) we went to Cornwall for a flying visit – very gorgeous. St Ives Tate, surf beach, and the Eden Project. (sorry, will imbed links at home!) Glorious weather and a special gift of a time, just before we go blinkered for three months…


— Posting on the move, tiny screen!

So, you know, all is going well and then all of a sudden two nights ago before sleep E is 16mmols. 16 mmols! Over twice as high as he wants to be.

What the heck? We check his insulin history, and we haven’t forgotten to give him some for dinner. Damn.

We are up three times that night battling him down. Giving more insulin twice, and socking a high temp basal on… By morning he’s in better shape though still too high, 10mmols. Something was pushing his levels up such that they did not want to be brought down quickly.

Honestly. Why? We don’t know. This is the thing. We actually don’t know.

Two possibilities: he has a cold. But it had already come out, and his sugars had been fine. Probably not that.

The other possibility relates to what happened yesterday: one hour after eating a Penguin biscuit and bolusing for it, he’s again 16mmols. WHAT?!

The night we chased him down, he’d also had a Penguin, some time after dinner.

All we can think is that somehow the Penguin is a bit nasty for his blood sugar, even if he doses properly for it. He does love them and often has them with lunch. We’ve never noticed this happening before, but both recent situations are unusual: one was during a dual wave for pasta, so the Penguin would have entered his blood stream in near isolation, not tempered by other food. (It’s also always possible that the pasta dose was not quite right. It’s one of the doses we do mostly by eye.) Last evening, the Penguin was in complete isolation, and we tested an hour after because it was time to eat dinner. Otherwise we never would have discovered the huge spike, because he doesn’t normally test until at least two hours after he eats.

In any case now one of his favourite things is off the menu. Just a chocolate biscuit. But it’s a high price to pay for a snack. He was very upset at having such a spike, so has decided not to have them. It’s the down side of wanting good numbers: guilt and distress at ‘bad’ numbers.

I shake my fist heavenward. Why must everything be fraught with implications and consequences, every single damn choice?! Argh.

It’s felt a very full few days. Sometimes in families there is a time when it seems things are changing quickly. The children outstrip themselves. The adults make plans. Some kind of change is in the air.

We had another clinic appointment yesterday, and despite the week of highs after our holiday, E’s HbA1c is again very good, the lowest yet, well under 7%. Just how lucky we are in this achievement was brought home to us when we both heard another teen’s HbA1c, same day, same clinic: 12%.

Living with diabetes requires an incredible vigilance, and, as the consultant pointed out yesterday, gaining control requires a kind of obsessive nature, a perfectionist bent. How true for E.

Growing with diabetes, growing up with it, requires quite a different set of coping mechanisms. And some are winners in it, and some have Herculean sized struggles with it. This is the hormone story: insulin (a hormone), brings blood sugar down. Cortisol and adrenaline — both typically sky high in adolescents, and especially in driven adolescents (check) — raise blood sugar. Unpredictably. Of course.

Growth hormone, as I’ve mentioned before, also raises blood sugar. And is only secreted at night. What I did not know is that it is secreted at all different times of night, in response to the body using up the glucose present in the blood. As the blood sugar drops, growth hormone has the chance to kick in. So it is secreted in a pulsating type pattern. Unpredictably. Which is why over the last six months we have had these astonishing runs of highs in the night, and then just when we want to do something about it, boom, they stop. We have been completely unable to predict or grab them.

The consultant’s advice for these adolescent highs was very good: correct the random highs (perhaps caused by cortisol and adrenaline) as you find them. Don’t worry overly about the growth hormone highs in the middle of the night, because some of the effect may well settle and drift off by morning. So try to get the morning reading okay, but stress less about the night time one.

He also confirmed that E had grown over an inch since June, and another inch in the preceding three months. So we all had a bit of a celebration and a sigh: we are in the middle of his main growth spurt, which may  last another year. Hold on for the ride.

It is clear that E and we seem to have the mentality to constantly ‘be after’ diabetes and control without it wrecking our lives. He tests as a matter of course, without protest, and is keen to keep in range if at all possible. His most upset times come when he runs high — not just because he feels bad, but because he is hugely, hugely aware of how bad this is for him.

In that way and so many others, we are lucky. We are able to carry all this, to hold it, without it taking an incapacitating toll on us.

But how easy it is to imagine a family, many families, where people just aren’t put together like us. Their lives are not as settled, not as happy in other ways. They’ve not had the support of a good diabetes team in the early years. The child or teen just wants to pretend it’s not happening. And the numbers spiral up, kept just within the need the hospitalisation.

I’m not saying anything that almost all of you know, and may even be experiencing. It does make me desperate though, desperate for help with this: how can all families be expected to essentially cope on their own? How can every person be expected to understand and be motivated to look after themselves? They can’t and UNDERSTANDABLY SO. It’s dire. But the price is so high.

E was speechless when he realised that the teen across from him had an HbA1c which was almost twice as high as his. I could see a helplessness mounting in him. How does this happen? We both felt chastened, and left feeling quite humbled. And for me, a little heartbroken too.

***

A little kitten vid. Cleo calling and playing with them. After a while she realises one is still in the box. Hmm… goes to check it out, and they all (eventually) follow… Our bundles of good and silly stuff amongst all the sobering thoughts…

A calm – temporary? false? who knows — has descended upon the house today. Cleo came out this morning and for the first time did not prowl every inch looking for alternative baby nests. She behaved like herself, sitting in her favourite places, generally doing her Cleo thing. For an hour. Meanwhile babies slept whitely and silently, now looking nearly fluffy (!) upstairs. Bless.

She’s been up there ever since, for six hours. OH just went to check on the family, and came out saying it must be the endorphins. She’s lying there looking like her whole flipping life finally makes sense, pedaling her paws and purring…

And we all went to bed earlier last night. More sleep. Finally I had a decent night. E’s number not good – 12 mmols — at 2am, and this after forcing more insulin (eg doing more than the pump wanted us to do) when he was mid-way through a 5 hour dual wave for pasta (about 10 mmols tops expected in the middle of dealing with pasta – he was 15 mmols, so we forced 1 unit of insulin in the hopes of getting him to 10 mmols. No such luck.).

So either he’s decided to do a little growing again (randomly, for who knows how long) or the pasta went in weirdly, or or or or or… Meh. Who knows anything.

But we’re feeling quiet about it. We’ll try again tonight. Peace and love man.

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.