Friday, 7 March 2014
Not the best week for Elin after such an amazing week last week. We aren't sure what's wrong, only that she seems a bit fed up, lethargic and not quite herself. It's a shame when she was doing so well, especially with her buggy. She was much less tolerant of sitting in anything this week, for any time at all really. But we know the score by now, one step forward, one back! I had such high hopes last week that things were looking up in regards to the seating issues Elin has, but I think deep down I knew it wouldn't be as easy as all that. I know we can achieve that again, it's just hard with it being so unpredictable. One of the things I enjoyed most about last week was being able to plan things and know that Elin was going to get some enjoyment out of them too, despite the need to be sitting in her chair. Nipping to the supermarket or shop was possible without huge stress on Elin and without having to watch her little body twist and bend and fight against itself. Such a simple thing as Elin sitting well in her buggy can normalise everything for us in terms of family life and it felt really good. Elin's new buggy is definitely helping, though it still needs lots of adjustments before it will suit her needs completely. For example it needs new harnesses and foot straps, the current one's are not keeping her legs in a good position. Such a massively difficult balancing act between comfort and appropriate positioning, I hope with the help of the amazing technician at Alac (wheelchair services) that we get it right soon. In the meantime I think I have to stop looking for answers as to triggers for her dystonia, reasons why she suddenly decides she will or won't sit. It's against every fibre of my being not to discover solutions to problems and not to know why things have happened- I'm someone who likes order and reason and explanations. But something I've learned since having Elin of course is that there isn't always an answer. I could procrastinate forever about it but the fact is, sometimes there just isn't an answer. So, maybe it's time I just stopped thinking about the question before I drive myself insane. To quote the title of our favourite book about a little girl like Elin, which I have blogged about in the past, the only answer we may ever get for Elin's changing behaviour/dystonic patterns is "Just Because". It's just something I've got to learn to accept, embrace and sometimes, ignore. If my brave girl can deal with it day in, day out then I'm pretty sure I can too.
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