Superhero work-outs

Hello everyone! Time for a new post as much has happened since we last posted an update.....

First up.....the Super Power Baby Project is a GO!! YAY!

Recharging his super powers :-)

Rachel and Sam have reached their target (and much much more!) and now this awesome book will be produced!

Not only are we hugely excited to have Nate feature within it, we are just so pleased that future parents of super power babies will have the chance to see something as awesomely positive as this, after being confronted with a shock diagnosis. But also that the rest of New Zealand (and beyond) will have a greater understanding of just how amazing these kids are, and think twice about both their perceptions and their attitudes towards them!

We really want to thank those of you that contributed to this amazing initiative - and there were a lot of you - we are incredibly grateful, thank you :-). We're even hopeful that Rachel and Sam might come and stay with us when they come up to shoot the Auckland-based super power babies. Fingers crossed!

Second (although clearly always first!)....... Nate is doing really well at present! And here are some of the reasons why we say that....

Entranced by ripping up a Burger Flyer!

(1) He's porky! At his fortnightly weigh-in this week at 30weeks (or 24weeks adjusted) he had gained another 300g and now weighs in at 7.1kg. In fact he is now around the 25th percentile for 24week old babies - so he is catching up quickly given that he used to sit around the 2nd and 9th percentile!

His length is also up 3cm this month - he now measures 67cm, which is around the 50th percentile - so he is now of average height for his adjusted age!

That's impressive catch-up growth and is great to see, especially as we have read that Trisomy 9 Mosaics are usually smaller in size.

(2) Solids are a breeze! Linked to the above of course, but our little man is a great eater :-). In fact we're about to move on to mashed over puréed, and are confident that he will manage this.

Aspiration of milk or solids can be a big issue for trisomy kids, and given that we have never had a swallow study done, we're not entirely sure if Nate does aspirate or not.

Feeding time with Granny!

However those babies that do aspirate also tend to get repeat pneumonia, so given that we haven't had any of that as yet, we think that he's probably okay. We'll take it slowly with the stage two solids though, just in case...

(3) He's developing! Nate's development continues to progress well.

We have a plethora of sessions around gross motor and fine motor skills and he is making small steps (although not literally!).

I don't want to exaggerate his progress and have you all think there is no challenge here - there is definitely a delay, and he struggles daily with his low tone. He isn't yet rolling, or sitting without support, and those things may still be quite some time away too. However the quality of his movements is much improved, and his therapists say that he is currently exceeding their expectations with the rate of his progression.

Their experience is based on other trisomies (usually Downs Syndrome) as Nate's exact diagnosis is too rare to allow direct comparison - and of course their feedback to us comes with the disclaimer that every child is an individual, and can be affected very differently, even with the exact same diagnosis.

We hope that if he keeps the same rate of progress, and doesn't have the regression that some trisomies can experience at times, that he may avoid a severe case of Global Development Delay (which is delays on multiple fronts eg physical, social, verbal, cognitive etc). Obviously our BIG dream is that his delays won't be huge at all, but only time and a lot of hard work will tell on that front....

Here are some videos that show him in action.....some from a Conductive Education session we had, one doing physio while trying out his brand new DMO suit (which will aid his low muscle tone), and one at home playing with Grandaddy :-)

In the meantime, we all - Granny, Grandaddy and Nanny Sylvie included - continue the daily dedicated focus on Nate's physical therapy. Obviously we're making a BIG difference, which is awesome to see :-). We're just so incredibly fortunate to have Mum and Dad here to help us with Nate - the progress to date just wouldn't have been possible without them.

Grandaddy is also busy making Nate a plinth for his at-home physio sessions, to make it easier on all of us, Nate included! This allows him to do his tummy time and rolling higher up, where he can see more and be more easily engaged. It also stops us all having to get down on our hands and knees - much better for everyone! And of course Nate's new DMO vest, should really help him with his low tone and feeling his muscles more - exciting!

Plinth in progress

Modelling my new vest & hanging out with Deb!

(4) And finally our wee man continues to be quite the social butterfly! Nate still squeals and babbles away noisily, although he hasn't gone further than 'mum', 'mama' and 'um' in syllables or words. We're working on 'ba' and 'da' at the moment, although that just appears to be a big joke for him more than anything else! Makaton continues - although not with much intensity - we'll really need to start cranking that up in the weeks and months to come :-)

Anyway we'll finish today's blog with a couple more recent shots....Nate holding court in entertainment mode, and then Nate in pooped mode (again not literally!).

Entertaining my Granny while in my Frog Hat!

Phew! Hard work-out! Recharging again :-)

 

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