My biggest supporter

Look at those eyes.

Those are caring eyes.

My best friend helps me cope with it all and we do it as equally as we can.

He is off hiking in Scotland today and away for a week.

I am alone with this but as my biggest supporter he deserves a break.

My break will come another time.

I love this man.

P.S. We had a bad night with little sleep as Frank was high and wanting me to be in his bed with him. We did everything right yesterday but he had a hypo of 2.6 and them a high at 3:30am of 19.4. What the ...?

I cried, again.

This morning all was well and good numbers arrived. Budd left for a week in Scotland and barely three hours later Frank and I are eating lunch and he looks at me and says, "Mummy, I don't want to die. Then I won't be with you."

More large, hot tears as I tried to hide my exhaustion and fears of doing this alone. How can there still be tears in there? I must be practically dessicated by now.

Any advice on how to manufacture feelings of Mama strength in times of need?

I'm thinking chick flicks and green tea (no glass of wine for a week in case I need to drive to the hospital).

Knitting too and Natalie Merchant's new album, which serendipitously (get me with the long words) arrived in the post this morning.

Other ideas much appreciated.

I know you all get it. Live it, in fact.

My thought s are with all parent of Type 1 children more than ever today.

Making the low go

By coincidence we had a scarily low low today of 2.6. Out came the apple juice. We had been with Frank all morning in the garden and he pretty much always lets us know if he's "wobbly". This is the word I seem to use when I mean low blood sugar. We talk about "hungry" and "wobbly hungry". He is only three so it kind of works. Maybe when he's a hulking great sixteen year old (please, let him become a hulking great sixteen year old!) we will need to find new vocabulary.

I don't have a picture of a juice box but figure my target audience, more than any other item in their cupboards, will know a juice box. Juice boxes are just the Clark Kent of my pantry. Unassuming in their beauty but there for you when you need them. I tend to buy mostly apple juice so here is a photo of a pretty apple with a heart in it.
When we need to deal with medium lows we use these baby weaning purees from Ella's Kitchen. They have 12g carbs and Frank did have them when he was weaning. We now call them squeezies and they are quite the treat (amazing how a bit of careful PR can do wonders). They contain fruit and vegetable puree mixed so I figure he's getting some squash and spinach or whatever at the same time.

Then we sometimes follow up a low with an oatcake with nut butter or a small piece of toast or a biscuit, such as this one fashioned to look like Graham Coxon (local boy done good, click on his name there to see how yummy he is. A less seedy-looking Jarvis Cocker!).

Frank comes round fairly quickly and tends to need a hug. We try to never show panic or freak out in front of him. He needs to be under the impression that we know what we are doing.
HA!

(In case anyone was wondering, I have just learnt how to do links properly! Woo hoo! Brace yourselves for more coming up and if you need a smile and like Star Wars watch this one!)

A Day in the Life

Today is my first post for Diabetes Blog Week, the brain child of Karen at Bitter Sweet.

I am grateful for the focus as hubby goes away on Wednesday for a week hiking in Scotland. Normally he goes for two and a half weeks but with the new regime and Frank's young age it felt better this year to make it a shorter trip.

So, a typical day for us:

Somewhere between midnight and 6am I rise to go to the bathroom. This visit is guaranteed by my drinking a whole pot of green tea every evening because a) it's probably good for me and b) I want to check my baby is breathing.

I change his nappy, stroke his hair, allow myself to breathe and go back to bed.

6am-6:30am Frank calls "Mummy!" at the top of his voice as he wakes and I bury my head under the duvet for a few more seconds. He pads in ,bringing toys that we have to include in our game of his devising.

We all cuddle and tell each other we love each other.

Sounds schmaltzy but we do.

Life is precious and our link to it seems tenuous with the Type 1 fairy loitering around.

7:30am We all get showered, dressed and make our way downstairs. A BG test and then breakfast which is followed by CBeebies (children's BBC) as we inject the Novarapid and the Lantus. We find that having the TV on for a few minutes helps keep him still as we inject. If we are both at home we have developed a kind of pincer movement where we inject a buttock each! Synchronised insulin injections! Otherwise I just talk loudly about what's going on on Bob the Builder or whatever and he is young enough to be distracted.

The rest of our days vary according to who is home or at least with Frank. I gave up teaching at Christmas and Andrew works part time so we are able to share to diabetic load, so to speak, equally. Some days Frank is at pre-school and so I go and test his glucose and give him his injection there.

In between meals there are snacks of around 15g carbs.

At dinner time we eat early, between 5 and 5:30pm. Frank is tested and injected after he has eaten as he is so young we never know how much he might eat at any given meal. To give an idea of how much this varies, for breakfast he eats like the proverbial king with cereal, milk, toast, fruit and sometimes yoghurt too and needs what feels like an HUGE bolus. Also, his growth hormones mean that his ratio for morning insulin is higher than later in the day.

In the evening he might need a third of the insulin of his breakfast bolus.

He has a snack at bedtime and I check his glucose at around ten most evenings. Some evenings I am so convinced I got it right that I let his fingers rest. Most evenings I need the proof and reassurance and so I test.

My gut tells me what to do.

Our fab diabetes specialist nurse and I disagree on the nature of this condition.

I feel it is an art getting it right and she feels it is a science.

It would be a science if at any given point we were in the presence of all the relevant facts.

That seems impossible as the body is such a delicate and finely-tuned entity.

London calling

Guess where I went today?

Child-free and with one of my best friends in the world.

Just an hour from home by train.

London baby!

I love this city.

It rocks.

It's a complicated boogie

How do any of us get this in any way right?

Frank's regime involves four injections of insulin and four blood glucose tests every day.

His little finger tips are a bit calloused as he will only let me use four of his ten available fingers (and I confess here to liking it when I say, "Give me a finger" and he points his middle finger at me in rude salute to Diabetes and I think "Yup, that's what I think about Type 1 too!").

His peachy bottom (as seen above) looks like a pin cushion.

And yet, all this is GREAT if he is alive and thriving.

All the sleepless times, all the tears and stress and grey hairs and dark moments are FANTASTIC if we can get it right and keep him healthy.

This past week we have seen Frank's sugar levels in the teens, consistently, and only yesterday did we see really good numbers.

Budd and I had talked and talked about ratios and carbs and have gone back to measuring and weighing much more carefully.

Ratios have been altered and his long-acting insulin upped a bit.

And then, after a positive day of excellent numbers, I went upstairs at 10pm to test Frank.

To my horror I saw 26.2 !!!!

What the ...?

We talked some more, we filled his drinking cups, changed his nappy, grew a few more grey hairs, swore a bit and then in conclusion decided that we shouldn't intervene in case we made it worse.

I fell asleep thinking of my boy's body being ravaged by evil blood glucose and him feeling terrible when he woke up. (Bizarrely I dreamt I had a beard! Analyse that for me someone. Would a full beard help me in some way?! What is going on in my brain??).

And then Frank lies in late this morning.

I wake naturally at 7am and am immediately convinced he has died.

I tiptoe into his room.

He breathes!

He is alive!

OK, now don't wake up I want to go back to bed!

He wakes, he looks and feels fine he says. He gets into bed with me and we cuddle. We play at being badgers in the forest by hiding under the duvet and popping our badgery noses out.

Then we get up and Budd tests him: 5.2.

Go figure.

So I return to my original question:

How do any of us get this in any way right?

We are firing at a constantly moving target and are dealing with the human body in all its subtle and intricate details.

It's a complicated boogie indeed.

(Perhaps the beard is a Yoda beard of Wisdom? Any other thoughts?)

Off the needles

Off the needles recently have been:

new curtains for our bedroom, made from some cut up double sheets from a charity shop in town and edged with cotton lace. Our old curtains were looking rather dingy and miserable. These are Spring-like and let a lot more light in. Can you see our beautiful view of the herds of wildebeest sweeping majestically across the plains???

Then in a flurry of knitting I made these tiny booties for a friend when she confessed the reason she was pouring all the wine into my glass rather than having any herself, a most unusual occurrence!

And a few baby hats for her too.

I also finally completed a lace scarf I had been working on, lots of mistakes, but that's hand knitting for you (well, it's my hand knitting anyway).

This one is overexposed behind me but I liked the way it made me look like I have either a halo or that and angel has landed behind me and I just haven't noticed...

Numbers back up in the teens today and so much larger amounts of insulin being administered. I am still working on understanding that more insulin doesn't mean Frank is sicker, just that he's growing and eating more.

I cycled into town to meet my lovely friend Lynne this morning for a coffee and took half an hour alone with the paper and Jarvis Cocker on the ipod to try to regain something of the Jules that used to exist pre-diabetic child.

She is in there somewhere, I hope.

I'll keep you posted of any sightings of this elusive creature that actually finishes reading a paper, listens attentively to music and has some conversation in which adults might be interested

Rainy Sunday

Rain, rain, rain.

Today we stayed indoors and just kind of hung out together.

It was Smoothie Sunday, so the day started with smoothies and a funny boy with a moustache. We moved on to Lego.

Great concentration was needed.

There were stories told with props and songs.

A crab in the hospital being healed by Peter Rabbit.

Then pink grapefruit marmalade was made and the whole house was filled with the wonderful smell of citrus.

Grapefruits were boiled.

Until they looked squishy and rather sorry for themselves.

Lemons were disembowelled.

All was boiled with a mountain of sugar.

Poured into jars.

And left to set.

And we finally got a number below 10 for Frank's blood sugar after a difficult week of numbers consistently in the teens and of changing wet pyjamas and beds three times most nights.

We are tired and ready for a few days of no bed changing.

Our washing machine regards me balefully each time I enter the kitchen.

It, too, is over-worked and under-rested.

I will be back tomorrow with my latest knitting and sewing projects to be completed.

We love needles in this house, they create beautiful things and keep beautiful people alive.