Now she's much better off thanks to the NHS and their provision of a child's wheelchair.
It took about four or five months from applying to getting hold of the chair but they came through and, as with all of the amazing facilities that we make use of within the NHS, it is provided for free.
It lets her sit up and see more of the world around her and makes it a lot easier for us to talk to her as she's moving - it also means that people walking past realise that there is good reason that she is not walking - which I suspect will become increasingly important to us and her as she grows up.
Of course, being a five year old girl, we've decorated the chair in pink and purple ribbon - wouldn't you?!
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Little S has started talking to her heart, or more accurately, has received some messages from her heart.
She’s starting to become a lot more aware of her ‘magic heart’ and sometimes gets told by her heart that she shouldn’t walk any further or that she should slow down, or perhaps instead that she should keep playing on the climbing frame.
She's also mentioned that she sometimes has to ignore the messages from her heart as it's hard to concentrate at school sometimes if she doesn't!
She will still say sometimes that she’s ‘not got any breath’ or just ‘too tired’ but I think she’s starting to learn the difference between being tired in the way that everyone gets tired sometimes, and genuinely not having enough breath because her heart is struggling with the amount of oxygen that it gets.
I think this is part of her becoming more aware of her heart and the implications. And we’re certainly also talking to her more about how hearts work and what it is about her heart that is a little bit different to most!
Despite becoming more aware of her differences she doesn’t seem to be at all frightened at the prospect of having a heart that doesn’t work as well as other children’s hearts. We haven’t mentioned any of the potential dark clouds on her horizon and pointed out any of the downsides because it's too terrifying a prospect and doesn't feel like it would help her at all right now.
I suspect though in time as she develops more awareness she might either start asking, or just worrying, about that sort of thing. So important to start having little ‘heart’ conversations now to ensure that we’re all able to talk about more difficult subjects should we need to.
In the main though, the last few months have been fairly steady in terms of her weekly sats check from the community nurse – Little S is normally about 76% which, to put in context, is a little above the danger zone of low 70’s / high 60’s in which, should she be there regularly, Dr D would want to get on with surgical plans.
Things are not always steady of course – during one week recently, the community nurse arrived during one of Little S’s screaming hissy fits!
Little S wanted something really important to her (like a biscuit or a TV programme) and we had decided that we weren’t giving in as she had been quite demanding and rude in the way that she had asked for it.
It’s always difficult to balance the desire as a parent to let your child just scream on the naughty step versus wanting them to be quiet and just let them have what they wanted -for us, we also have to include our fear that by letting her scream she’s going to cause herself to be sick or worse, as she puts additional stress on her heart.
She’s certainly made herself sick before and ended up pretty drained as a result.
This time we managed to calm her down, eventually, and the community nurse took it in her stride, but her sats we're not so good that week :(
This time we managed to calm her down, eventually, and the community nurse took it in her stride, but her sats we're not so good that week :(
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Sports Day this week and Little S wasn’t going to be left out!
She took part in the pick-up-the-vegetables-as-you-
Might be worth pointing out that there were only three runners in the race … but then again that’s not what matters here – Little S gave it a go, wasn’t going to be left out, actually run the whole race, and was smiling about it all day, thrilled that she’d taken part and that everyone was so proud of her!
