Sam is 6!

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Sam is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Sam joined us, on the day I am also mindful that this time six years ago Sam was being resuscitated then being transferred on his own in an ambulance to a different hospital, and that our lives changed forever.

But it gets easier every year, as the memories are less immediate, there is more to celebrate and Sam is more engaged in birthdays.

As is now our annual tradition, James made a video to summarise Sam’s year. I won’t post it, partly for reasons of privacy but also because of self-indulgence; while most parents will happily watch a ten minute video of their own child, no-one I know really wants to watch a long video of someone else’s child, even if that child is the subject of a semi regular blog they read. It’s surely the modern equivalent of being made to sit through someone else’s holiday photos.

So, here’s the executive summary. It is unashamedly positive. Let’s ignore the tiresome stuff for now.

In Sam’s sixth year he:

  • Enjoyed ice-skating and went round the rink quite a lot faster than grandpa;

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  • Had a massive and briefly scary allergic reaction to nuts and had to go to hospital in an ambulance;

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  • Went down a zipwire, swung from a sports hall ceiling and went kayaking at the Calvert Trust;
  • Did a lot of triking;

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  • Was a lovely older brother to Eli, letting him wear his lycra suit and clamber all over him;

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  • Moved house (again – his fourth since he was born);
  • Got a new wheelchair-accessible car (which is great but unfortunately turns out to be one of the cheating VW emission scandal cars…);
  • Got his own eyegaze computer to use at home and used it to tell us knock knock jokes;
  • Went to the House of Commons and met an MP;

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  • Lost four baby teeth, swallowing at least one;

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  • Did a lot of trampolining;
  • Went to a summer playscheme for the first time and made a biscuit the size of his head;
  • Went on holiday to the Cotswolds and Cornwall. Next year places beginning with D. Suggestions welcome;

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  • And last but not least, left one wonderful school and started at another, settling in quickly.

Sam had a lovely birthday. Over the years we have learnt what works and what doesn’t. We are less concerned these days about what a typical six year old birthday party would be like and just do what we think he will enjoy – small family celebrations, lots of presents and balloons, ice-cream cake which he can at least taste if not eat.

If I do say so myself, we have done particularly well with Sam’s presents this year. It’s tricky to think of things he will really like beyond yet more books, but he is really enjoying a puppet theatre where we put on shows for him with hand puppets, a lightbox that we can spell words on, and a teddy bear that will play Daddy’s voice (from Kuwait this week) or anyone else who records their voice via an app. So satisfying when all of the thought I have put into presents he will like pays off.

The coming year will involve more change for Sam, not least with a new sister and another house move. His somewhat relentless life will continue with the usual levels of complexity and endless appointments, but he has continued to prove that he can take it. It feels like he (and we) are more resilient and happier than ever. We will inevitably have some blips. I am certain the arrival of a third child will throw us all off course, he’ll get the usual winter bugs and we will face unexpected challenges. But, but… if I had been able to see how well we are all doing six years on from the awful day of his birth, maybe I wouldn’t have been quite so sad.

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A Missing Tooth

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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 Sam’s teeth. We seem to have hit a kind of critical mass of dentistry so at least four separate dentists have seen Sam 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 Sam’s teeth very well. Sam 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.

Sam 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 Sam’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 Eli 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.

Sam 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 Sam was relaxed enough with her to allow her a quick peek inside while the dental nurses let Eli 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 Sam 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.

Sam 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 Sam’s baby teeth falling out. The dentist said Sam’s teeth could start falling out any time from now. I was really anxious about it – Sam 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 Sam 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 Sam (via Granny) notified the Tooth Fairy.

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

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