We figure Dexter will be in hospital a couple of times a year.
It's not that he is a sick kid, it's more a complication from the cerebral palsy.
Dexter's actually a very healthy kid... forgetting the cancer side of things, for a moment.
Despite his severity of cerebral palsy, he is an excellent eater.
He eats mushed food, but a wide range of foods. Because he uses so much more energy than we do, to move and sit and eat, he needs a higher calorie intake, so he enjoys biscuits and other treats.
He usually drinks well, and his liquid intake is carefully monitored, every day. He still drinks from a bottle, and water is a bit too thin for him, so he tends to choke on it. Otherwise, he is a good drinker.
He rarely sneezes (though, when he does, he thinks its very funny!) and he doesn't seem to get a cough.
Without words, he can't tell us when he has a headache, earache or sore throat.
He can't tell us he's hot, or cold. He can't get himself another jumper, or take off a layer of clothes.
We just have to watch him.
Usually, its easy to see he's well...
He eats well, drinks well and is cheeky.
He never stops moving around on the floor.
So, when he slows down on his drinking, and he doesn't eat all his dinner... our brains silently switch in to 'watchful mode'. That's a habit now, and we don't always realise we are doing it.
And then, he might be a little less active on the floor.
A quiet hand might reach out, to rub his hair... and run fingers along his forehead... measuring his temperature.
Sometimes, Dexter will be fine, and our brains kick back into 'general life with cerebral palsy and a vision impairment and a noisy 18 month old' mode.
But sometimes, Dexter will feel a bit warm.
He'll really slow his movements and, he will start whinging.
And, the thermometer will come out.
Subconsciously, we hold our breaths as the thermometer measures his temperature... and hope that the numbers will be good.
So, his temperature is up and he's saying 'ow'...
We dose him up with panadol and wait... and watch.
Sometimes, this is enough... and we can stop worrying.
Sometimes, it's not enough, and Dexter needs constant contact. He whinges and cries. His cheeks flush with temperature, and his legs get covered in goosebumps.
It's hospital time.
A doctor has told us not to mess around with Dexter... to bring him in when he has a temperature.
A bag gets packed - quickly and efficiently, with little thought to what's going in it... it's been done so often, it happens automatically. Change of clothes - for him and parent, bibs, drink and food - for him and parent, phone, ipad and chargers, jumper and comfy clothes, toiletries and thongs, paperwork.
(During the chemo days, a packed bag was always in the car.)
Lenice usually jumps in the shower and decisions are made about Dexter's sister. Where will she go and who will she be with? Who will sit with Dexter?
We check the calendar, and prepare to cancel all appointments and activities planned for the next few days.
When Dexter is sick now, we have to take him to Emergency - just like everyone else. During the chemo days, we went straight to the Kids' ward.
Often, Dexter is breathing hard, so he gets through triage pretty quickly.
Once in the Emergency Department, we get a bed and treatment time varies, according to how badly Dexter is doing and how busy Emergency is.
Sometimes, he's put on oxygen... sometimes, he doesn't need it.
Sometimes he's given panadol... sometimes, he needs something stronger.
The worst part, is the cannula insertion.
We always tell them Dexter's veins are hard to find, and inserting a cannula is often difficult with him.
Sometimes, we get lucky and the needles are in, the cannula bandaged and it's done.
Once, Dexter's arm was prodded seven times with a needle... while the person doing it watched an ultrasound screen - not Dexter's arm. The needle was moved around - inside his arm, as they looked for the vein... and Dexter screamed. That time, Dexter screamed for two hours... and lost his voice.
And that breaks our heart... so, we hate cannula time.
Sometimes, we get to the Children's Ward quickly....
Sometimes, we wait for 5 - 7 hours in Emergency.
Once, Dexter needed more care than our hospital could provide, and he was helicoptered to Sydney.
Finally, Dexter is taken to the Childrens' Ward, and we can move him to his bed.
And so begins the hospital stay.
When the treatment is right, we can see Dexter recovering, and we know it's just a matter of days and he will be well enough to go home.
We know some of the nurses, and some of them know Dexter.
Some of them have followed Dexter's story, since his premmie days, and his chemo days... and we really do feel honoured that they are showing so much love and support to Dexter.
We get hugs and hellos from some of the staff... all of us. They know our names, they've watched Charlotte grow up, and they know Hamish, Dexter's hospital cow.
And sometimes, they let us know what they are ordering for dinner, just in case we want some.
As long and boring as Dexter's hospital stays are, we do feel a sense of 'home'.
New clothes and food are brought in, for whoever stays overnight... and we spend some time together, as a family, and then... Charlotte is taken home.
Usually, Carol comes in in the evenings. This last hospital visit, Dexter heard her voice in Emergency and reached out his hand to find her... with his cerebral palsy, this is pretty special, and this reaction from him makes it hard for her not to be there for him.
While Carol is there, Lenice walks down to Subway, because it's close and easy, and gets dinner. This might be the first time Lenice has been outside, all day.
We change Dexter (if the canula is in his foot) and get him ready for the night.
Once visiting hours are over, it's just Dexter and the overnight parent. We are so lucky, in that we often get a single room, with an ensuite and a fold out bed.
Initially, Dexter's observations are done hourly, and he will whinge through his high temperatures... and sleep is broken and restless.
The second night, Dexter is usually getting better, and everyone sleeps more soundly.
If we've caught 'it' in time, Dexter will be able to go home on the third or fourth day...
Often, we are not actually told what is wrong... it's usually pneumonia. Because of his early (and sudden) birth, Dexter did not receive his (pre-birth) steroid injections, and he has been diagnosed with a chronic lung condition.
If it's not pneumonia, it might be an infection.
Or, it could be girls germs...
By the time we can leave the hospital, we're pretty exhausted and drained.
It's nice to see the sky again, and feel the sunshine on our skin.
It had been 5 months since Dexter was last in hospital for pneumonia.
We hate the hospital stays. They put our lives on hold and force us to be separated. They stop Dexter from receiving daily therapy for his cerebral palsy and they make us worried and anxious.
But, we're lucky.
The nurses and doctors treat Dexter with care, and once we have resigned to the fact we need to go to hospital, we smile at the thought of seeing some of our nurse friends, again.
We keep Dexter's social media friends and blog followers updated on his hospital stays, because we have come to realise that many people are worried for him... and genuinely want to know he is ok.
We would like to thank everyone, for the way you embrace Dexter... for the way you worry about it, and how you celebrate his good news... and for the way you see past his cerebral palsy, and see our cheeky little boy.
Sloppy kisses from Dexter xxx