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Posted by Catriona
on July 4, 2009, 22:35:59, in reply to "Re: Finger/Toe Clubbing"
82.27.178.219
Thanks Pippa - I'll email you direct about Amy. There's both so much to say (because dealing with the NHS and other services is such an all-consuming thing at the moment, let alone coping with the emotional side of it all) and also so little that's new (because Amy doesn't change all that much, day to day, week to week, month to month). In general, things are easier - because I'm no longer going out of my mind with anxiety about WHY she's 'all wrong' and have moved a long way towards acceptance and enjoyment of her just the way she is. The more I understand how difficult movement and communication etc are for her, the more amazing I think she is.
I empathise greatly on the mother-in-law issue - what you say rings lots of bells - will expand when I email you! I'm sure you're right that it's hard for other people to be around us - I have acknowledged that it's impossible for most people to say the right thing! I find myself feeling impatient at the triviality of other people's concerns and preoccupations, but I'm clearly going to have to find a way of dealing with that (or else end up with no mates at all). I think it's probably a temporary thing - I feel very differently now to the way I felt six months ago, and six months from now I'll probably be in a different place again.
I really like the idea of flagging up parents' preferences etc on patient records. I can't see why it wouldn't be do-able. But getting health professionals to read what's in the notes rather than requiring you to start from scratch each time (I don't mean the cardiac team here) - there's another issue entirely...
Catriona x
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