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Almost three days old!

I’m pretty sure that photos of newborns of any species are beautiful pretty much in the eye of the proud grand/parent, but here we are! I snuck in and snapped this first thing this morning, when mama Cleo had popped out to have breakfast and do her usual cruise around the house looking for a singularly inappropriate place to move the babies… Scale-wise, each baby is about 100 grams at the moment, with one slightly larger, at 120g. This one is also the only definite BOY. We *think* we have one boy and three girls. They have increased their weights evenly by about 12% in 24 hours. That’s some growing…

I’ve just stuck my head in. Lots of feeding noises, lots of bickering — I want this spot, no I want this spot! — with mama purring away and resting her head on the backside of one of them. Aww!

She’s very happy. And I’m very happy, because at last this morning she managed to do all of her litter tray ‘business’. Number 1s, as they say, were fine from the start, but I was just getting to the point of trying to investigate mild kitty laxatives, when aha! Done deal. All looked healthy and good. Phew.

My only remaining anxiety (well aside from the larger ‘what is life’ ones and the longer term ‘will all the kittens be okay’ ones) is WHY she won’t drink the water in her room?She has two little bowls, both of which she has drunk out of in other parts of the house, both of which I’ve shown her and dabbed on her nose… But still, she rushes downstairs like a bat out of hell when we let her out to drink from the one on the side of the bath. I mean, I ask you!

I remember what it’s like to breastfeed. You are THIRSTY. Silly girl.

***

And last night I finally had some sleep that wasn’t fraught with worry. I didn’t jerk awake thinking the kittens were squashed, and E’s 3 am number was okay, as was his morning one. Hurray! Perhaps we will not set the alarm tonight? Nah. Too soon. But we may be getting there, for a short time anyway.

Deep cleansing breath.

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

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

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

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

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

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

******

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

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

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

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

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

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

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

Sigh again. Just because.

By now you can take a wild stab at what happens after I quietly whisper ‘numbers are more stable’, as I did in the last post. And you’d be right. THEY GO CRAZY!

Stability has been out the window off and on now for a few days. Why oh why? We don’t understand. We wonder if these new sets are starting to lose effectiveness after two days rather than the three of the old sets. But this hasn’t happened consistently, certainly not since the beginning… Can it happen suddenly? Who knows? Who flipping knows?!

So suddenly he wakes high yesterday, after 1.5 days with the set. We battle him down a bit, but he’s still pushing high. Battle down. All through the night we battle down, testing 4 times, running a fairly high temp basal.

Wakes at least stable from 4am, though too high, 12mmols.

Corrects like mad. Goes off to school and EXAMS with a temp basal on. We don’t want to send him low because of exams, but not too high either because of exams — both ends affect performance — so he texts back at 11am that he’s 17mmols.

Argh!!!!

Corrects, and raises temp. 13mmols at lunch. But then, suddenly, coming home he’s 19mmols! What?!

We’ve whacked the temp up to 200%, and corrected, and an hour later he’s still only 16mmols.

Argh!!!!

And to top it all off, he feels that his performance today was affected by being high. He had a hard time concentrating, needed to pee through half the exams, and had run out of water mid way through another.

You know, honestly. You want to climb into a hole. How unfair. I’ll phone the school tomorrow, but I don’t know what can be done…

It’s three days tonight since a set change. So we will change again, yes. But it’s been going wrong for half the time the set’s been in.

What the heck…

I’m sure I don’t even need to mention how very much I wish I had been able to be in my hut watching the sky rather than typing up reports and supervising the electricity man replace the meter and helplessly fielding texts from my struggling son. WHO DIDN’T ASK TO STRUGGLE LIKE THIS FOR HEAVEN’S SAKE!

***

And to top it off our beautiful girl cat is in heat in the most LOUD and DISTRESSING way. She sounds distressed and upset ALL THE TIME. We can barely talk over her. We are planning to try to get her pregnant in late June, for the timing to be right…Meanwhile I barely slept last night what with all of her pounding around and complaining, and being up and down like a yo-yo testing…

And the sun is shining and I’M NOT IN MY HUT. And feeling sorry for myself. And for my son, who really did nothing at all to deserve this. Bad luck, hormones…who knows. But he’s on a roller coaster at the moment, and all we can do is just keep running the insulin in:

And try to get the tub full QUICK…

Dammit.

My friend’s son’s diagnosis of course is still at the top of my mind. And I’m struck by something her message to me yesterday said: I know it will be like trying to carry water in my hands.

Indeed.

This seems a particularly apt way of describing the first feelings, like nothing stays with you for long. Like you start off on a walk, with your hands full of the stuff, then you take three steps and they are empty. So you go back and start again.

In our house we use the pedaling a bike slowly uphill metaphor. I think of how the front wheel twists and turns in this situation, how you just about stay on. This is how we feel. Most of the time.

And in another entry, the running for the bus one seemed best: you chase after, then when you finally get on it, you realise you should be on the one way over there, on that road.

***

These are all quite depressing ones, really. There must be some moments of relief. I’m thinking of my friend H here and her son. What to tell them?

What are the moments of your or your friend’s/child’s care like? What images occur to you in the middle of the night, or in the day on your own, or when you think of the people you love? Have the images and metaphors changed over time, or like us, do you have different ones for different times?

I’m just curious. Because I know that thinking through metaphors somehow helps me cope. It helps me express and articulate these complicated sets of feelings as nothing else can. I feel like there I’ve said it. For the moment, anyway!

***

On the home front, after a few days of highs and raised temp basals (more insulin dripping in), we realise that we are back where we started after the last unexplained round of lows. Sigh. Spluttering pancreas, growth spurt, infusion set site? Who knows. Two mornings now of finally waking in target. 

What would be the metaphor for this?! Two steps forward, one step back? No, that’s a cliche, and different.

How about following an overgrown path until you reach a sort of clearing. You take a breath, but then realise that the path continues out the other side, and that you must follow it. It’s a bit of a slog, lots of cutting back and hacking through. But you do it. When you arrive a the next clearing, after a few minutes it dawns on you. Yes, it looks familiar. You were here before, only now you’re approaching from another angle.

***

All being well I will update in the next couple of days about the school’s talk with M’s year group, the Bayer Contour USB. And maybe daffodils.

(With apologies to Grace Paley…)

Here’s what happens:

1) You know those night lows from my last post? Well, we didn’t change the insulin the next night, because you should not change on just one set of events. Good thing, because it was a ‘chips’ night — the first  in many months. And E went high all night. We battled him down by testing in the night twice.

2) Yesterday morning E woke on a good level. But within an hour had risen 6 more mmols — huh? Well out of range. Due a set change, so did one, thought this might solve things.

3) No such luck. Continued to be in the upper reaches of not-good ALL DAY, despite numerous tests and corrects. We just kept piling in insulin. Is he ill (how do you feel?)? What did he eat (eat anything different?)? Etc. Can ONLY conclude that once again, his insulin needs have shot up. Overnight. By 20%.

It’s true that in the last month he has grown to be a centimeter taller than me. From a centimeter shorter. The boy is eating everything in sight, even cleaning his sister’s unfinished dinner plate, despite cooties!

4) So last night we keep the same high amount of insulin. Get up at 2am to test: and he’s higher than when he went to bed! Argh. Correct with more insulin, and get up again an hour later to make sure he’s going down (otherwise could be sky-high by morning), AND raise the basic insulin of the pump by another increment, all night.

5) This morning, still high but not sky such.

I mean, really. It’s like a dream, only it’s real: watching the bus you want to get on pick up speed, and you are running and running after it. You get on it, only to realise it’s going the wrong direction. So you get off it and run after another one, which of course is just out of reach.

The point is:  you never arrive. You never, ever get there. But if you don’t keep trying, all this lovely food he is eating will not metabolise. He will not grow properly. He will suffer complications, even when quite young. It’s that simple.

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.