A rare life – day 14

It is Friday here in Brisbane and I’m exhausted. I’m beyond coffee drinking tired and into that deep in your bones tiredness.

It has been an exceptionally busy week, dominated by Miss Z starting the Ketogenic diet. I truly have nothing to complain about when it comes to the Keto diet because Miss Z falls into the category of pretty simple, really. She’s completely tube fed, so all I need to do is mix up the formula to exact specifications and make sure that over the course of 24 hours, she gets exactly 900ml. There are parents out there, even as I write this, who are chopping and weighing and measuring exact amounts of very specific ingredients to make highly particular recipes for their children who are on the diet and eat orally. Compared to what they’re going through, I’ve got it easy. But mixing up all the formula and working out her feeding schedule does take up extra time in my day.

And then there is the blood testing. I’ve gotten over my aversion to it – which has been made easier since she doesn’t seem to mind it. However, its like getting blood out of a stone with her – she’s not an easy bleeder. So, I prick her finger or toe and squeeze out enough blood for the ketone test, but then I have to wait 20 seconds for the ketone result to show, write it down, insert the blood glucose test strip into the machine and then try to get more blood for it. Usually, by that time the tiny wound has clotted and I have to stab her again to run the glucose test. I’ve tried to get Vegemite to squeeze Miss Z’s finger or toe to keep it bleeding, but Vegemite wasn’t crazy about the idea of making her sister bleed. So, I struggle on by myself…

I also forget that it actually takes a bit of time to get everything set up and do the tests – which is why we’ve had to hurry out to the waiting school bus every day this week.

And yesterday we were back at the hospital, getting Miss Z’s spinal brace adjusted, having a blood test and an X-ray done and picking up some meds and supplies. Miss Z doesn’t like anyone orthopaedic and she didn’t like the nurse taking blood either (nor did I), but she cooperated with the X-ray technicians. However, she had a complete hissy fit when I tried to sit down for a coffee. I think the message was: I want you to feel just a little bit of the suffering I’m going through!

Anyway, we made it through the week without any major mishaps or emergencies. And Friday afternoons are my favourite part of the week. The girls are both as exhausted as I am, so we have an afternoon of eating popcorn and catching up on the latest episodes of our favourite television series. At the moment, we’re watching Supergirl and the Great British Bake-Off. Even though she misses out on the popcorn, Miss Z loves to be in the middle of it all, watching a bit of tv and rolling around on the floor. Miss Z and I have also been known to have a brief snooze together on the floor. Its a beautiful way to end the week, spending some no-pressure time relaxing with the girls.

And if there is one thing that I can guarantee, it is that we’ll all sleep well tonight!


Open-mouthed awe at the latest bake-off developments!





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