Today Noodle, the number one son, has a head cold. He is more distressed about snot than any other possible discomfort, pain or trauma. So none of us has had much sleep.
Since his episode of rhabdomyolisys last year he has been much more anxious about illness generally. He is starting to realise, eight months later, that not every sniffly nose or queasy tummy is going to land him in intensive care. And so am I.
Neonatal Doc wrote once about children who are seen as 'ill' after being admitted to hospital, and are treated differently than before. He was specifically talking about children who do not need particular care, and the burden of needless anxiety that the parents and the child carry around as they worry whether or not their child will become ill again. We fall somewhat into that category, but we do need to be continually vigilant. One of my son's doctors suggested that we have a two vomits, straight into hospital rule, and we are always anxious about high temperatures, aches and pains and tiredness. This last one provides the kick, because we are always stressing about whether old Noodle is doing too much. Is walking around town after his French lesson too much? Is going swimming too much? Is staying out for dinner after a day at the footy too much? We're afraid (all three of us) that we won't know until later.
Noodle used a wheelchair for a while after his acute rhabdo. He couldn't walk at all for a month or two, and then he could walk, but became exhausted very easily. The wheelchair meant that he could do a lot more. He is starting to get to heavy to carry around when he gets tired. We are all contemplating how to use the wheelchair to help him enjoy himself. I know he gets fed up with needing to stop and rest, with needing to come home early, with having aching legs. I guess we'll just figure it out as we go.
Today we are reading:
Me - The Count of Monte Christo - in which a pot boils, and ingredients are added in a random fashion until the flavour is spicy and hot
Noodle - Harry Potter and the Chamber of Secrets - see above, plus jokes