A rare life – day 12

There is one thing to be said for being a parent of a ‘rare’ child – you never stop learning. In fact, in the past 4 years, I’ve learned so much that at some point soon I expect to be awarded an honorary nursing degree.

The 24 hours that Miss Z has been on the Keto diet have been yet another learning curve. In fact, I spent the whole afternoon on Monday being tag-team trained by a neurologist, neurology nurse and dietician. You may have noticed that I missed blogging last night? That was because my head was still spinning from all the information I’d been given – not to mention I was up well after midnight making sure I hadn’t made any mistakes with the start of the diet.

Its still spinning tonight, but a bit less and I’m feeling slightly better organised as well. I did chicken out on doing my first blood test this evening – I’ve got to check her blood sugar and ketone levels twice a day – but then, I’ve got a former nurse as Z’s support worker, so I figured she would be better at it anyway (and she was).

Tomorrow morning though, its just me and the needle. Although I’m not looking forward to it, I have a feeling I’ll soon be doing the finger prick blood tests without a second thought. Because that’s what life is like with a rare, medically complex child – things that you start off thinking you could never possibly do, you get trained to do (or you just figure them out yourself), you have no choice but to do it, and you end up doing them as automatically as making yourself a cup of tea in the morning.



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