Our dining room is now a bit noisier than it used to be - there are three oxygen machines in there along with three emergency canisters of oxygen just in case the machines stop working!
Little S isn't on oxygen all day every day - we only really need to give her oxygen if she looks like she is having difficulty breathing.
But because she isn't hooked up to a machine to monitor her oxygen saturation level (sats), we have to be able to see her to tell if she needs the extra O2.
So at night, when we can't see her as we're asleep (hopefully), or when she has a nap in the afternoon, we turn on the machines and pump oxygen up to her room through a dainty plastic pipe running up the stairs.
And as she won't wear an oxygen mask, we need three machines to ensure that when the oxygen wafts across her cot she'll end up breathing in enough of it.
The community nurse came over this week and said that in twenty years she had never seen three oxygen machines used in a single house!
Well, we've got used to the idea now of Little S being a little different to other kids!
But then isn't every child different in their own way?
How Fragile We Are
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