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The children have been dealing with ‘school issues’ the last couple of days — one positive, one negative. At M’s school, one boy said terrible things and behaved terribly — for two days — before the school caught up with him. Things about people with diabetes being ‘spastic’ and having no legs. He drew pictures, and taunted M. Needless to say, despite stay off the subject advice from us and from a teacher, by the second day of this, she flipped. It’s all been dealt with… but she feels these things deeply. She wishes more people understood. She wishes she didn’t always have to be in the position of explaining what diabetes is, the distinction between type 1 and type 2, how hard it is to manage, and how she worries about her brother…

It’s a bit much for a ten year old really.

By contrast, yesterday at school E’s physics teacher completely silenced similar taunting. This is a fairly common occurrence which E seems to weather well: boys tease him quite a bit about being diabetic, make fun of his pancreas, say hey he can’t have juice where’s my juice, etc. The distinction I guess between M and E”s situations are that in E’s case, the boys kind of know what’s going on. At M’s school, they are speaking from complete ignorance, and are therefore near bullying.

Anyway. Yesterday E had a hypo in physics, reached for juice. One boy said hey sir he can’t have that! To which the teacher responded yes he can, he’s diabetic. The same boy then said ha ha let’s all laugh at him because he’s diabetic. And the teacher, totally deadpan, said I don’t think that’s funny at all. My daughter is diabetic. I wouldn’t want her to go through what you’re doing to E, and I wouldn’t want E to go through what she does when she’s low.

Apparently the class just kind of froze; the whole atmosphere changed. The teacher is a favourite of E’s anyway. Turns out his (grown up) daughter was diagnosed just a few weeks ago. E came home feeling that someone understood.

That’s all it takes.

***

M and I talked alot yesterday about how when something like a diagnosis of diabetes happens in your family — it could be anything that marks out one of you as ‘different’ — people automatically read it as ‘not normal’. In fact, you yourself, until you get used to it, read it as ‘not normal’. And the difference weighs so heavily. You feel out of the stream of life, isolated, cast off. Difference of any sort is so very bulky to manage, trying to figure out what to do with it in your life.

Last night M said that ever since E’s diagnosis she’s been working hard to try not to pigeonhole people. She said that she used to be frightened of how different people looked in hospital, or on the street, in a shop. She used to be afraid of difference.

Perhaps we all are at first. But it’s not so difficult to change this. It’s not so difficult to expand our notions of what is ‘normal’. In truth, ‘normal’ can hold everything, every difference.

Our job I guess is to keep forcing people to expand, to open up. To educate. To push for acceptance at the deepest level. To keep people from turning away.

It’s not easy. But it needs doing badly. For all our children and their futures, whatever they may hold.

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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!

Of course I cannot go another minute without noting the progress of our kitten babies since I posted in the autumn. This is what they looked like at about 14 weeks. R had gone into the bathroom (where they had been placed to be safe from the vacuum cleaner!) to collect them all up to take to the vet’s for their vaccinations… and he found this. They climbed up there all by themselves. The caption is his:

 

"But we don't want to go to the vet's..."

 

Since then, three of our lovelies have moved on to happy homes. Eudora — Miss Fiesty and adventurous, first out of the box and always up for a good time, was first to do in early December — on a plane back to the States with my sister, B! Oh yes indeed. Little Eudora was apparently a real trouper, traveling to the airport, on an eight hour flight, a two hour stopover, then another hour flight and another drive — all in a gorgeous padded carrier. In hand luggage. Wow.

Artemis and Athena went together to a fellow musician and sister-in-law of a work colleague. We met on a snowy day in the middle of England to do the transfer. The family have always had long-lived, indulged cats — and from the pictures being sent back to me, they have already started down the road of happiness there! Artemis and Athena both emerged as company-needing, extremely loving, cuddly cats. They desperately needed to be together, so I’m so glad they could be.

It’s been a real joy to give them such loving homes. A great relief.

So we have Archie — Archimedes — now as the sole little one. He’s the really laid back kitty second from the right. He and Schubert have a good relationship, sometimes sleeping together and often playing. Schubert can nearly squash him however! But Cleo (mum) almost always gets cross at Archie. She sniffs and plays a little, then growls and bats… It’s kind of sad. Poor Archie. He rolls over and gazes up at her: love me!

He cried for two days when the others went. And the grown up cats were like what you want us to play?! Where are your friends?

He is a stunning young lad though, just beautiful, and very loving. I think sometimes he is still a little lonely — and a mixed message mum doesn’t help — but we give him all the love we can. He also likes to sit and stare at the guinea pigs, occasionally prodding them gently. Bless. Shall try to get a good photo of him as he is now.

***

I’ve sort of thrown a table of blood sugar levels into the sidebar for people’s reference. I talk so much about levels and what is target and what is low and what is high, that it does seem a good idea to follow my sister B’s suggestion of putting up the basic info. The sidebar widget though doesn’t have any formatting with it unless I write it in HTML, which I don’t really know…so it’s really DARN basic right now, though I’ll keep after it.

I did want to say though: notice how narrow the target range is. And shall I shock you by saying that in the last two years I think that there have only been about four days (eg 24 hours) when all of the fingerprick blood tests have shown E in range. Of course between them he may have been all over the place. And what’s for sure is that generally he’s all over the place. As everyone with diabetes often is. This morning he woke low. Before dinner last night he was high. Etc.

No wonder it’s easy to feel like you are always, always doing something ‘wrong’. Not to speak of fighting a losing battle.

Also just to let you know: E was 32 mmols at diagnosis. And on Sunday I heard of a friend’s relative who was admitted to hospital with a level of 72 mmols.

So aiming for 4-8 mmols can sometimes feel like threading a camel through the eye of a needle. Despite all the hope of reduced complications it brings.

 

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.

E returned in fine fettle on Sunday — less odorous than anticipated! — though the suitcase was a sight (and smell) to behold, of course. His duty on the last day was cleaning the chemical toilet… Oh dear. But he seemed to get through it okay. His sister had made him a smashing welcome home banner, which he acknowledged with real affection and appreciation. And within minutes he had managed to download his camera, shift everything to a memory stick and then onto a slide show on the television….

O-kaaaay. I didn’t even know you could do that.

Sigh.

He had taken a shedload of pictures, and narrated us through. Some really beautiful shots, and some great history, environmental concerns, and shots of wild horses (taken even in the rain!) for his sister. Bless! Will try to get him to do a guest post…

Several things to note from all this. Well, lots, but I have to be contained. Time is of the essence today.

1) the staff were brilliant. As were the sixth formers. On the first night, E had a tough time. He felt very sick, disorganised and probably panicky. One of the teachers moved out of his bedroom, and T & E moved in. The teacher slept on the table for the rest of the week.

2) everyone stopped when either boy went low. One of E’s misgivings was that he would be left behind when hypo, even though he knew someone would always be with him. But in the event everyone just stopped. No fuss. E said that everyone just used the chance to talk. To tell their life stories, he said.

3) it’s clear that E hasn’t lost the ‘give it a go’ quiet confidence he has had for several years now. Apparently he tried everything, and did everything. Even things that some others wouldn’t or couldn’t. There was one small activity: threading the needle, I think it was. They foot-holded up the inside of some rock, then through the top… Lordy. He did it. He said people pulled him through at the end, but he did it. Only a few did. I can’t help but wonder if his success is also about allowing others to help, trusting teamwork in the end. Interesting…

4) coming down Snowdon, E took quite a tumble and really bashed his knee. He felt dizzy and breathless.  The guide was straight over, making sure, as E said, that he ‘could move everything’. E said he could walk on it, and up he got. But what I want to say is that two or three more times in the next half hour or so, the guide asked how he was. That’s good care.

***

Those are some of the tangible things. But of course there are so many intangible lifts that come from an experience like this.

1) He wants to keep walking.

2) He knows he can manage extreme situations. He knows what he would do differently next time.

3) WE know he can manage extreme situations. We know others can be trusted.

4) Diabetes didn’t stop him.

5) Diabetes didn’t stop him.

6) Diabetes didn’t stop him.

7) And all that this implies.

***

Something has shifted. Some kind of small attic window has been opened. And beyond it, is sky.

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.

Just a word here to say that living with Type 1 and getting out into the world and doing challenging things requires it. Lots of it: grit.

E and we have been in good text contact over the last two days. Lots of ups and downs. The cottage is disorganised and dirty. He wants his space and a sense of structure and control (a bit control freakish, like lots of well controlled diabetics, one suspects!). Can’t have that. A bit of a struggle.

I forgot to pack the scales. Don’t even go there.

So lots of estimating. A little added stress.

So far he’s had two mornings of heavy walking accompanied by almost constant dragging the bottom — floating around 4 mmols, with occasional hypos — for hours. He’s on 0% temp, eg no background insulin, and eating loads of food without insulin: cakes, cereal bars, sweets, juice, chocolate, sandwiches…

Then last night he had to negotiate raising the temp a bit to account for higher numbers in the afternoon — 12 mmols for too long to leave. 

Managed everything perfectly though: 60% temp all night, waking on 7 mmols.

Wow.

So today he undercarbs breakfast in an attempt to start his walk higher, and spikes way high (20 mmols). Under corrects but anyway dips low again all morning. He tells us they are taking a mountain guide and going out to climb a mountain with a rope. I send back a whoo whoo enjoy it kind of message, but feel myself  battling the urge to check my phone all the way through class…

Discover that this is what he’s climbing. I can barely bring myself to look!

And then this: constantly around 4 (he writes) and having tons of carb. But having the time of me life at the moment.

Bursting with pride. I’m at work, loads to do. But I’m about to walk upstairs and find someone just to say this to: anything is possible.

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!

As is the way with life, business as usual has now taken hold: school and stationery preparations have occupied some considerable time, as has the trying on of shoes and uniform etc… The good news is that for daughter M’s final year at her school we won’t have to buy any more uniform! Yay. Everything more or less fits. Never mind that everything was a little baggy to begin with, and that her skirt — bought three inches above her ankle — now rides slightly above her knee. Never mind that the SAME P.E. kit has lasted E and M both in this school — that’s eight years, altogether. Good quality stuff, eh? Though by now quite, ahem, faded. And it was second hand when I got it! The truth is out.

The bad news is that E does not fit in one single item of his school clothes. In six weeks he has outgrown his shirts, his jumper, his blazer, his trousers and his shoes. Granted, he was looking a little ‘wristy’ as we say, in his shirts and blazer by the end of the school year in July, but now they are unwearable. Sigh. AND he only has two more years in his blazer before going into the top of the school where they all wear ‘home clothes’. Sigh again. And blazers are eye-wateringly expensive. Second hand shop, here we come!

Life with the kittens has settled into a very sweet pattern: Cleo scratches to get out between 6-7 am, eats and drinks, goes outside. Kittens snooze. Cleo returns in an hour expecting some fanfare, which she receives, then goes back upstairs, checks them, eats a bit more in the room, stretches out asking us to tell her how very clever she is and how much she is loved, then climbs in with them. We check on her over the day but although she sometimes climbs out and stretches (and oh yes, eats two more meals), she doesn’t want to leave the room. At about 5.30pm, she fancies a stroll and goes out, eats again, visits with everyone and goes back into her room. Last night for the first time she wanted out at 11pm, so muggins here had to stay awake long enough to let her into the room when she was ready. She also wanted ANOTHER meal, and was interested in traversing the top of the piano, which she miscalculated somewhat and tumbled down, waking the house with her dischord. Oops.

Schubert her brother has stopped being quite so cross with her, which is a relief. He now greets her at least. He has yet to meet the kittens; we’ll wait for 3-4 weeks for that. Meanwhile two out of four babies have opened their eyes completely and one in particular is very pleased with her ability to hold up her wobbly head and look out. The eyes of the other two, the darker ones, are half open. All can do a very endearing hiss when they smell or see something they don’t recognise. Completely soundless and expressionless, they pull back their mouths repeatedly. Then snuggle down with the others, job done. It’s pretty hilarious.

Eight days old!

We think we have two seal point Birmans, one of them the boy, and two chocolate point Birmans, though one of these looks a bit lighter in the ears… could be developmental, or we could have a blue point? Not expected, but hey. (Classic examples of Birman types here. Cleo is a lilac point and the kittens’ father is a seal point…)

***

Re E’s numbers, well. Generally pretty good, but some inexplicable highs. Since I last posted we’ve had two unbroken nights’ sleep: one was fine; another he woke up on 2.7mmols. Right. Then the last two nights at 3am he’s been high again, 13mmols. So we can’t yet find a way to get full nights’ sleep with any consistency. We do look for opportunities, but there have been reasons to get up every single night: he’s running high, he’s running low, he’s at the end of a pasta or rice dual wave, it’s the first night of a changed basal dose, we’ve had three different numbers the last three nights so we can’t risk it! Etc.

People weren’t kidding when they said adolescence plays havoc with blood sugar levels. There are many, many times when it’s just random, random, random.

And today he’s eaten like a horse. He’s always hungry again. For us, this usually corresponds to growth and fighting to control high numbers. Sigh for the third time. (Really, we are okay. It’s just when I look at it baldly I admit we’re tail chasing again…)

It’ll be fine. Some day. Just please lord let his new clothes fit him for a little while.

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.