By the way of pre-amble, let me say I am slightly tempted to record this as a podcast in order for the word Tooth to be pronounced ‘tuth’, rather than the more usual ‘too-th’. This is how my grandmother, Min, said it – I assume it must be a Worcestershire thing. It is how I say it to myself in my head, even though my London accent doesn’t say it out loud that often.

I have had many conversations over the past few months about Ben’s teeth. We seem to have hit a kind of critical mass of dentistry so at least four separate dentists have seen Ben or talked to me or others about him recently. They all work in different settings or hospitals, and have slightly different perspectives, of course united by their love of teeth. They also all happen to be really competent women; if only all fields were so stuffed with talent.

I am not complaining about all this attention. I have good teeth (no fillings, I am intolerably smug about it) and I have a mother who has spent significant time reminding me to brush my teeth, taking me to the dentist, banning me from eating sweets, and generally hassling me in the teeth department. I am trying my absolute best to replicate this aspect of my childhood.

Combine this with horrific stories about other disabled children’s teeth and I am hyperaware that we don’t clean Ben’s teeth very well. Ben can’t (and has never) opened his mouth more than a couple of centimetres. He has a bite reflex so clamps down on a toothbrush if it’s put between his teeth. He has high oral sensitivity and a heightened gag reflex. This all makes it practically impossible to clean his teeth effectively.

Ben is helped by the fact that he doesn’t eat so his teeth aren’t being covered in sugary snacks every day, but he also has reflux and we feed him food with carbs and sugar, so his teeth are getting contact with food albeit from the wrong direction.

We have been assured that we are doing all we can by Ben’s main dentist who is based in the community. The first time we saw her she offered useful tips and was sensible and friendly. She said she would be happy to see Max as well, even though his dentistry is unlikely to be complex, because then I could bring the boys together. This kind of attitude is like GOLD DUST, and we have happily followed her to a different clinic further away for our visit every few months. You do not let these kind of people go unless you have to.

Ben wasn’t as enamoured with her attention as I was in early visits, and clenched his jaw tight shut as soon as she came close. No matter, we kept going, and at our visit last month Ben was relaxed enough with her to allow her a quick peek inside while the dental nurses let Max operate the special chair.

This is progress, but the best way of knowing what’s really going on in there is to look properly when Ben is anaesthetised. It’s important to try and really see the state of his teeth as he will be unable to tell us if any of his teeth start to hurt, and any infection is likely to get pretty bad before we realise what’s going on.

Ben needs to have an (unrelated) investigative MRI in the next few months so we are trying to co-ordinate things so his teeth can be examined and cleaned while he is under general anaesthetic for the MRI. No-one wants to give him a GA purely for dentistry, but it makes perfect sense to kill two birds with one anaesthetic stone. It is a mere task of co-ordinating between the MRI department, a neurology department and two separate dentistry teams, one of which is on a different site. I don’t see what could possibly go wrong.

Meanwhile, at the half-term community appointment we had discussed Ben’s baby teeth falling out. The dentist said Ben’s teeth could start falling out any time from now. I was really anxious about it – Ben doesn’t eat, he rarely has anything in his mouth. He can’t use his hands to get a tooth out. What if his tooth fell out and we didn’t notice and he choked on it? Would he manage to swallow a tooth? What if it happened at night? Should we wiggle all of his teeth all the time and then encourage loose ones out (she thought I was overdoing it by this point)?

Three days later, I got Ben out of bed in the morning and there was a whacking great big gap in his teeth. His bottom front tooth (‘tuth’) was gone! And he was alive! I was, am, very excited and incredibly relieved. There was no sign of the tooth despite much searching of his bed, but Ben (via Granny) notified the Tooth Fairy.

And the Fairy kindly left a pound coin. Which made us realise that because Ben can’t ask us for stuff, we’ve never given him any money. Max is always demanding money (real or fake) but we have never thought to give Ben coins of his own. Now we need to get him a money box.

So Ben looks cute with his toothy grin, and my fears have proved unfounded. Only 19 more teeth to go…