Very superstitious, writings on the wall…

Superstition is a complex master. I have a story to share, words to say, yet my hands are warily hovering over the keys. The same issue arises at specialist appointments for when a doctor asks “How has she been?” I find myself whispering any positive response lest I jinx her. I bemoan the building of a brand new Children’s Hospital with no wood for parents like myself to knock on…although I am grateful for a neurologist who offers his head! So, for now, I shall refrain from sharing. I’m off to the yard to find some big branches to fill my twitchy fingers! (Exit stage left muttering to herself…”Touch wood, must knock on wood; no ladders; watch the crack in the pavement…aaarghh “)

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It is a week and a bunch of little you-thought-you-got-off-scot-free-but-you-were-wrong seizures later. My twitches have settled and my stomach unclenched. The superstitious mind has abated (for now) so I feel I can share. We had a really hard week. There were no urgent trips or big appointments. Rather it was seven days of hard core maintenance. Maintenance hard core? you say. Well yes. The weather was hot. Unseasonably so for Melbourne even in summer. For a kid with epilepsy this is bad news. Missy can’t regulate her own body temperature properly and heat is a big trigger for seizure activity so the combination can be nasty. The week sat on or above 40 degrees Celsius with one day of 44 (that’s over 110 in Fahrenheit folks!). We spent our week at home, not game to venture out, with  two air conditioners running and fans as well as damp towels on the girl herself. (I may well faint at the sight of my next electricity bill!) My head was full of fluid intake and output details as I struggled to get enough water down her feeding tube without seeing it revisit me out of her mouth! Every continence pad was inspected for volume and sniffed to gauge concentration. Lack of dribble was, for once, worrisome as a possible sign of dehydration. Naps were frequent as she was so tired. My stress levels…add in the bushfire risk near our home…were high. But we made it through a horrid week with no fits and no hospital. So I thought…There’s an experience to blog about. (A little friend wasn’t so lucky. Thankfully she is home from hospital now.)

The second day of cooler weather she started. It wasn’t even a gradual increase in seizure activity but straight into a decent fit that had me yelling NO at her…like telling the seizure off would stop it! A couple of days of little to medium sized fits had me back on edge and her exhausted. The joys of epilepsy! It seemed as though she had worked so hard to stay stable during the heat wave that once her body relaxed a little out they came. So, you see, as crazy as it may sound my superstition has some basis…I think about writing of no seizures, she starts having them. Whether related or not if you ask how Missy is be prepared to lean in for a whispered answer…or at least pass me a bit of wood!

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