I am having an incredibly boring couple of days. Ben has vomiting and diarrhoea. It has unfortunately coincided with the days when we do not have help from nannies/carers and Max ‘settling in’ to a new nursery. Obviously Ben can’t go to school. It’s not really possible to look after both kids so James had to take yesterday off work. As always, my work gets pushed aside.

Any parent is familiar with the curious mix of boredom and worry that accompanies having a sick child. Max’s developing speech means he can now tell you a lot of what he thinks or feels, so when he woke up vomiting on Saturday night he could scream ‘I sick!’. Over the next few days he could tell us that he felt sick, that he needed a cuddle, that we needed to be gentle when we changed his nappy. It’s not fun seeing him ill, but amazing that he can be so eloquent about it.

That’s the first time we’ve nursed a speaking child though an illness – we are much more used to a child who is unable to say how they feel or what they want. Ben is often sick; when he vomits we have to wait and see whether it’s a sign of illness or just another bit of reflux. It became clear yesterday that he was ill and couldn’t go to school. So ill that we stopped all food and he had small amounts of dioralyte (though his gastrostomy tube) while watching hours and hours of TV. Today he woke pale and quiet and withdrawn. By mid-afternoon today he’d had half a banana (whizzed up in the blender and pushed through his feeding tube) and was complaining that Bob the Builder was unsatisfactory entertainment so hopefully he’s on the mend.

James and I know Ben so well we can generally tell by his movements, facial expressions and noises whether he is happy or not, whether he’s in pain or content. But we never know what’s coming – he can’t tell us he feels sick before the inevitable puke. He can’t tell us he’s hungry to indicate his tummy is ready for some food. So we just have to guess, and sometimes that means what goes in comes right back out again. So. Much. Wiping. And entirely homebound.

Earlier this week Ben had a general anaesthetic in order to have some tests. Other people can have this scan without sedation but Ben would move too much. It meant a whole day in hospital while we prepared for and then he recovered from the anaesthetic. Ben’s five weeks in hospital after he was born has left us with a strong distaste for the artificial light, overheated rooms and lack of control of a stay on a ward. It never gets any easier leaving Ben after he’s been anaesthetised (he’s had two operations related to his gastrostomy), sitting around eating M&S sandwiches while wondering what’s going on, worrying that he’ll wake up and won’t know where he is. It’s horrible when they do say you can go and see him because he’s confused and upset, and looks tiny in the massive hospital bed.

One of the questions his assigned nurse had asked in the morning was whether Ben could talk. We said no, but that he understood speech. Throughout the day we told him who each new person he met was and explained what was going to happen. Ben hates any kind of fiddling (he cries when he is weighed, even though this only means being held by me while I stand on some scales) but after 45 minutes of ‘magic’ cream on his hands and a lot of warning, he was surprisingly okay about the cannula being put it. They took blood at the same time as preparing for giving him the anaesthetic. Ben has a yearly blood test to check he is getting all of the necessary nutrition, something he finds traumatic. At least this reduced the number of times he’ll need to be pierced with a needle.

In the afternoon, as he recovered and waved his bandaged arm around, he started complaining that the entertainment was not up to scratch. A sure sign that he was on the up. He then whinged when the nurse came near him with a pulse/sats monitor. His nurse understood what he was trying to say, ‘You said he couldn’t talk, but I’m in no doubt what he means.’ Indeed.