First blog of 2020!

2020.

We survived 2019.

Now it’s 2020 – surely we can do more than just survive it… we’d love to thrive this year!

We are all still here… working hard – day and night.

We had clinic on Friday, and as we had feared – Beau’s HbA1c had climbed… higher than expected.

I was upset, I couldn’t help it. Remember, I likened it to getting the test results back for the test you’ve sat (for the past 3 months in this case.) So I felt like we failed.

Which, of course, we didn’t. It has risen, but is still in the ‘green’, so probably I overreacted. However, it’s still not good news. We want it to be back down in the ‘non-diabetic’ range.

They say it’s normal for it to rise at this time, as he could be outgrowing his insulin doses, holidays change things up, his body could be making less of his own insulin…(how long will he continue to produce it for is anyone’s guess!)

Really, it’s risen because Beau’s BGLs have been higher lately. Much higher.

Often it’s been through lack of routine, lots of ‘grazing’ rather than set meal times (which we would normally do during term time etc), Christmas, travel, camping, different food we don’t know the correct ratios to bolus for, heat, different activity levels, could be stress, sickness (he still has a constant runny nose and cough… looking forward to surgery at the end of the month to get new grommets inserted and have his adenoids removed to see if that helps!!!!)

And that’s a whole other kettle of fish lol.

Anyways, so because of the higher HbA1c, the endocrinologist changed some of Beau’s insulin amounts so we could attack the higher BGLs more aggressively. Great! Hopefully this will improve everything!

…..

4 days later and so far on the graphs – we can see a seesaw. From highs to lows, lows to highs. So now we are treating more lows (due to the increase in insulin, or due to us being more aggressive – hard to say at this early stage…) and still treating highs.

Beau’s poor wee body must feel super shit going from low to high, high to low etc…

It’s super frustrating because no day is the same, no hour is the same and it is so hard to make sense of sometimes!

The great thing is, Beau has been having a lovely summer, eating the same things as all the other kids, doing the same activities and having fun being a kid. THAT is the main thing. THAT is all we want as parents.

What is shit about diabetes, is that the higher HbA1c’s etc, over time, contribute to an increased risk of complications due to the disease… I can’t remember exactly what they are right now, and I’m purposely not going to look it up, as I don’t want to add more fuel to the parental anxiety fire. Loss of limbs, blindness, kidney failure to name a few I’m pretty sure… will leave it at that.

Beau is back at preschool now, and loving it! His numbers are good pretty much all the time while he is there! A good routine and we have already weighed and calculated all of his food for the day. My goal is to manage it as well as they do, or I might have to look into putting him in there 24/7 lol (kidding – he’d never go to sleep without me!)

His pump has a couple of cracks in it too, so we are getting a new one (the same) tomorrow… not sure what happened, but it is worth $8000 so we’d better be super specially careful with this next one! The current one has only lasted 10 months, eeeek..

But I have ordered him a new Paw Patrol pump belt which should be arriving in the next few days too, so hopefully he loves that.

OH and for those of you who might read this who aren’t on my social media – THE OTHER DAY BEAU FINGER PRICKED HIMSELF FROM START TO FINISH!!!! TEST STRIP LOADED AND ALL!! Super proud of my amazing 3 year old.

3. Years. Old.

Fucking ridiculous really that this is for the rest of his life.

 

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Mr Beau Richie doing his very first full finger prick and BGL test!

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Camping – love our snuggles <3

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Camp mornings xx