I doubt any parent would disagree, when you become a mum or dad it's like going back to school again, you have managed to breeze through as an independent adult, you easily juggle work with your social calendar and all of sudden you are thrust into a world where your sole responsibility is to raise a child and find yourself in a, (URGH, dare I say it) routine, learning something new everyday, using apps to determine feed times and in a near paranoid manner googling things like "How often should my baby poo?".

Physio in Theratog suit

I have often thought about my parents or even my grandparents, how did they ever cope without technology? Were they sitting by the cot while the baby slept because there were no monitors? Were they grabbing the horse and cart and racing into town at the first sign of a sniffle to see a doctor? cos I'm definitely guilty of playing "doctor google" more than once!

Rod, during our wedding speech described me as "Professionally smart, socially dumb", I don't consider this a particularly offending, sometimes my brain switches off and common sense just don't kick in, this was evident pre-parenting so I can't even blame baby brain.

So let's talk about "tone", a great example of "Naomi's social dumbness". The day after Leo was born, this word was thrown around by medical staff, not knowing anything about Ds I recall thinking "I wonder why they keep referring to tone, maybe the extra chromosome makes their voices high or low pitched?". So a quick google search and to my relief I'm thankful I never commented during these discussions were being had as I discover they aren't referring to any sound they were referring to "muscle tone".

So in laymen's terms, often babies diagnosed with T21, have low muscle tone (hypotonia), simply this means their muscles feel loose and is sometimes to referred to them as being floppy. When Leo was born we were told he had good (not great) tone for a Bub with Ds, but it's when he gets tired that you can really notice the hypotonia.

In the early months it sometimes felt like his muscles were so relaxed that he was going to slip through our hands when we were picking him up. The best way I could describe this was like picking up a cat under their front shoulders, there is no resistance and it feels like they are going to drop them. Don't think that Leo's going to be a front rower that's for sure.

From the very first week Leo has been working on strengthening those muscles, starting with the midwives placing him on his tummy for tummy time in the Special Care Unit, to start strengthening his neck and core.

I probably realised until around the two month mark when I was holding a friends baby that was roughly the same age the difference between their tone, and so the tone journey of 2017 began as did the physio. A weekly appointment and two hours a day at home has been no easy feat. Yes I am a stay at home mum at the moment, but fitting two hours a day around feeds, a two year old, daily housework and a not-always-so-keen-to-participate newborn has at times has been challenging.

Now let me explain we are not putting Leo through a two hourly Ninja Warrior circuit each day, his PT will give us different things each week to practice at home, normally we break it up into 4 x 30 mins sessions, and it's more like structured play than a therapy session.

Leo is like clockwork, 6am and he is awake, so after a quick bottle and a much required caffeinated beverage for us, Rod normally takes first shift. On any given morning over the past six months, Leo will be strategically be reaching for toys, practising sitting or doing tummy time, on the comfort of our bed, while we are watching morning TV, he must think his parents are real "morning people", secretly we are just on coffee highs!

During the day, Leo rolls around or sits on his therapy ball, often while I am watching whatever program I fell asleep during the previous night, there is a lot of signing and toy shaking to keep his attention, Emmy often helps out by bringing toys or dancing in front of him. If we are practising a skill on the floor, often Emmy will be on my back getting a horsey ride, while I manoeuvre Leo around.

If we are out and about, I will get friends or family to "play" with him a certain way to tick off the session, they often comment how amazed they are that simple activities like reaching for a ball to help his overall gross motor skill development.

Leo is not a day sleeper, maybe a 20 min nap but that's it... I'm not complaining he sleeps through the night. But by the end of the day, he has little tolerance for "play time" and if he is tired it affects his tone, often his tongue (a muscle) starts to pop out, just a reminder to us even though he is much stronger, that his tone is low at times.

I would be lying if I said we enjoy all the structured play with Leo, of course it would be great if we didn't have to do it, but reality is you play with your bubs everyday as a parent, you encourage them to roll, sit, crawl probably without even being conscious of it we are just conscious of it, we know that's it's just helping him develop and are constantly amazed how tolerant he is and well he is doing.

We are not particularly time bound by him hitting milestones, we just want to put in the effort to help him reach them, so if that means strapping him into the Theratog suit or active wear as Rod calls it to help stabilise and work his muscles each day that's what we do.

Everyday babies reach milestones naturally, and Leo is no different also smashing his way through them, but there is a lot of work behind the scenes. we have seen our somewhat "floppy" boy in a few short months learn to hold his head up high, roll over, prop sit and is now in the early stages learning to crawl, all skills that he has worked so hard to achieve, so yes the effort is big but the outcome is greater!

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