Thursday, 26 June 2008

Gang Aft Agley

The best laid plans...

Today was the annual preschool picnic, a day in a local park with several hundred of the wee beasties little angels running around with parents and younger siblings, some activities laid on and lots of ducks and small rabbits to look at in terror then whizz your wheelchair behind Mummy's legs feed.

Much discussion had taken place about the coach, how it would need to be accessible for Little Fish (a compromise, they found one with boot space for her manual wheelchair), places were signed up for, fees were paid, picnic ingredients were purchased.

I was in two minds about going - Little Fish has a cold and has been sleeping for about 15 hours a night. If the day was scorchingly hot or wet then we would have cancelled. However, we awoke to a beautiful baby bear's porridge of a day*. Excellent.

I say we awoke; I mean I awoke (woke? waked? the more I type it, the wronger it looks). Nearly destroyed the alarm when it went off, having been up with Mog until past midnight fighting the seizure monster together. But wake I did, and even found some undribbled on clean clothes.

Both girls slumbered on.

Our carer arrived, and started to sort out some clothes for Mog, who opened her eyes and decided to face the world. A good start. Little Fish even managed to rouse herself by 8, and ate a good breakfast. And won my undying gratitude for admiring my clean blouse and saying "oh pretty Mummy". Hurrah!

Such a shame it all went downhill from there then. Mog was twitching quite a bit early on, but stopped with her morning meds. Stopped just long enough for me to write a long essay in her home/school book about how she'd had a bit of a rough night, but seemed to be more or less ok this morning. And then, as I filed the book into her bag, she started fitting again. Not big scary jerky seizures, just the subtle ones she has where she's clearly away with the fairies, eyes all over the place but the rest of her body doing more or less what it's supposed to do. So we watched. And waited. And cancelled the school bus, and watched, and waited, and cancelled the trip with preschool, and watched and waited some more. About three hours of gentle non-convulsive seizures later she heaved a giant sigh and started hinting for music.

It's hard to know what to do with these seizures. They don't affect her breathing, they don't seem to upset her - if she's got to have siezures at all then the nice non-convulsive ones are the ones to go for. But on the other hand, knowing whether to treat or not to treat them is much harder - when she's rigid and shaking in the middle of the night, it's relatively easy to reach for the Midazolam and chase the seizures out of her, knowing that she will need to sleep the Midazolam off for the next few hours too. Much harder to make that decision when the only signs of a seizure are that she's not responsive and her eyes are running mini marathons.

Anyway, sigh she did, and stop she did, and lazy afternoon we had (use the force for good, you must, Luke). She started up again at tea time, so we cancelled Rainbows - and as soon as the phonecall had ended, she stopped twitching. And had another beautifully giggly evening, howling with laughter over the huge excitement of having a shower and then singing along to Il Divo before sliding into a peaceful sleep.

Little Fish meanwhile I think also benefitted from a quieter day. Lots of thumb sucking and cuddles, and distractions to prevent her from sneaking up behind Mog and shouting "WAKE UP!" in her ear. Not the best way to bring her out of seizures, although jolly useful for assessing levels of consciousness during them.

Tomorrow is an empty day, so far. That sounds quite nice to me; I wonder how we'll fill it?

*not too hot, not too cold

1 comment:

Robyn said...

wish that seizure monster would stay in the closet. Poor Mog, having a rough time...and hugs to you...although I have to say, i think its kinda cute and a little bit funny about LF's attempts to rouse her sister!!!

hang in there gang xxx


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