On Thursday Elin had her first appointment at Alder Hey in quite a while, for Orthopaedics. Delighted to report that her spine is still pleasingly straight and her right hip, which was 70% lateralised (and thus at risk of becoming dislocated) at our last visit in December 2013 is now only 50% lateralised. It was quite clear on the X-ray- the hip joint was visibly closer to the socket than the last X-ray. The consultant was pretty chuffed with this, as were we of course. Dislocation can be very painful obviously and were it to occur, may require surgery. Surgery entails a rather nasty operation and weeks in pelvic/leg-casts afterwards. I would absolutely die if we had to put Elin through that. Also, our Orthopaedic consultant is dead against operating on kids with Dystonia. He told us this at our last visit too- it's because surgery (and specifically, pain) can increase Dystonia to such a degree that a couple of children he operated on were hospitalised for months following the operation just because of the severity of the Dystonia it caused. It was clear that this had stuck with him as he repeated the story to us on Thursday's visit. Actually, he seemed pretty haunted by the experience, I really felt for him (and the families involved) but also found myself feeling glad that he was just as anti-surgery as we were- it's something I never wanted to consider for Elin and luckily for us it looks like for now at least we won't have to. In terms of the magic retracting hip joint, I am convinced it's down to the amount of work and physio she undertakes at school (and at home too, but admittedly to a lesser degree! I tried to do some work with her yesterday on the pysio roll and she fell asleep!! Doh). So once again we are indebted to the professionals that surround Elin for all their hard work, it really does make a difference. I wonder if her Dystonia, in a twisted way, actually helps this situation too, since we are pretty much constantly changing her position, especially on a bad week. We avoid the temptation to leave her in one position (e.g. sitting in her chair) for lengthy periods simply because it's not an option. So her joints are moving fairly regularly, for an immobile little monkey :-) I guess every cloud does have a silver lining!
Nothing much else to report in Elin-land, we watched a Disney film yesterday and did some playing and then went to Llan for an ice cream today. She's not for sitting again at the moment so my own hips are feeling like they might need imminent surgery to be honest! Each day I wake up at the moment with them aching, especially my left hip where Elin usually sits when I carry her. I got to thinking this morning that I need to be more careful if I don't want to seize up entirely by the time I'm 60, but then I don't know what my alternatives are. Worse, there will come a day when I can't lift her at all and I have absolutely no idea what we will do then, since getting her in and out of her chair a million times on any one trip is generally par for the course. I don't like to think about it to be honest. If only there was a cure for this monster by the name of Dystonia- I would happily take everything else her condition entails if we could just get rid of it!
Anyway lets hope she shifts onto a cycle of sitting nicely again this week- it's certainly due. Have a good week blog fans, it will soon be Friday!
xxxxx
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