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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 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.

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!

Things were so fraught last week that although I had a lot to say, it all slipped out of my grasp…. We boarded the internet-less boat called ‘Holiday in a Hot Place’, and I left everything dangling.

And here we remain for another week and a bit. Several days in, we are unwinding, reading a book every two days, eating lots of tomatoes and soft cheeses. Not to speak of wine tasting!

E’s numbers are so far so okay, though early on an approaching cold combined with pizza weirdness sent him into a nasty, throwing up hyper (>15 mmols) that took us hours to conquer through 200% temp basals and overriding pump corrections…. The cold itself was hardly anything by comparison. Grrr.

Other than that, all the pool play and walking has meant hours off the pump, 50% temps and still having good numbers for the most part. Mornings tend to be a little high, but this is a holiday pattern: he seems to particularly GROW over breaks! We are also having more slow-digesting food than usual – pasta, rice, lentils – so OH and I are up once again every night testing dual waves – but with life this laid back it’s hardly noticeable.

Which shows how not laid back life normally is, sigh.

I’ll sign off now until after 9th August. A bientot.

— Posting on the move, tiny screen!

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.