Nate-star - a Super Power Baby!

Here he is - our little eight month old (at the time) superstar - Nate David Roy Ryan-Chang! Super power baby :-)

Click here to see the Sunday TV on SPB featuring Nate

 

And some recent snaps of the little man in action......

Cot standing - EASY!

Modelling my new Jasper Conran courtesy of Brian and Dorothy!

Developmentally, we're continuing to work on his standing, his supported walking with his push walker, and more recently, a little bit of crawling!! He is continuing to gain strength and we are just thrilled! Given we are on leave this week, we had an extra physio session so Robin and I can be there, as well as a speech session too. Here is a wee snippet of Nate cruising.....

We are also continuing the focus on his speech, and trying to encourage as many new sounds as possible. He loves to play 'sound mimic', although its more about who can be loudest - Mummy or Nate! There are really no clear or consistent words as yet, except maybe 'Hi Mon-Mon' for the cat. Granny and Nanny both swear they have heard him at various times previously though, and tonight I am sure he said 'Uck' for 'Duck' while he was in the bath.....I had only had two vinos (it's a holiday week!),so I am almost positive!?!

Medically we had several checks this week, with both ENT and a bonus unplanned catchup with his Respiratory Doctor, who heard we were in at Starship so popped by to see Nate while we were there. Saves us a later trip back in, so we were very appreciative! Everything seems to be good on the ENT front, with no plans from our ENT Doctors perspective for exploratory surgery at this point (unless Respiratory feel its warranted), although we may have to have a general anaesthetic to have his hearing properly tested at some point soon.

Respiratory-wise, we were asked to complete another overnight oximetry test last night (checks his oxygen saturation levels, when he is sleeping without cpap). The results for that will come at some point, but that will probably lead to another overnight sleep study at Starship. When/if he ever passes that sleep study, then he could one day come off Cpap altogether! Here's hoping. If his apnea is linked to hypotonia, then this could be just a matter of time. Of course if its more about obstruction, it could be longer/unknown :-(. We were also prescribed a preventative inhaler for possible asthma, as he is quite wheezy. That wasn't unexpected, and will be interesting to see how that goes for him. Plus Nate is a big fan of face masks! Not! :-(

All in all, not a bad week for our perfect little super-star :-)

Xx

Practising on his saxophone like Grandad Roy used to!

A stirring rendition of 'Old MacDonald' underway :-)

 

 

 

 

 

 

 

 

 

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First Month as a One Year Old

It's been a month of solid progress on the developmental front, well really its been a solid four months! Nate has mastered rolling, sitting, creeping, and is now starting to pull up into all fours on his own (no crawling as yet, but that isn't unusual for trisomy kids given the lack of core strength), and is now also in the early stages of learning to walk!

He is already a master in his walker - as you can see from the shots and video below - he charges around the kitchen following Nanny Sylvie during the day, helps Daddy out with dinner at night (or tugging on his 'man apron'), and loves to check out his toys, along with special friend Elmo, from a whole new height and angle :-)

Daddy & Nate in our new kitchen

And here he is below at Early Smiles, where he had his first go with a special push walker....he was SO pleased with himself after that successful attempt! We now have the loan of the push walker to practise with around home, pretty soon we'll have him getting the morning paper for us (well, when he can master stairs, that is!).

In Conductive Education, he is currently working on his sitting on a stool, and practising his weight bearing so he can get more used to stepping up and being on his feet. Although he seems to especially love being on his feet, more so than sitting. Check him out....typical boy with all his banging!

We have also recently added to Nate's weekly therapies, with the addition of a playgroup that is run for other chromo kids. It runs every second Wednesday by a couple of retired physio and speech therapists, so while it is 'play', it is in a more structured developmental way. What is particularly great about it, is it gives Nate the opportunity to mix and mingle with other kids while he 'works out', which will help with his social, emotional, and communication skills. We intend to add another playgroup in time too, but one with more typical kids in it. Probably a local neighbourhood one, although not sure those kids would be classified as 'typical'! Slightly bohemian more likely! We also started private speech last week too, which will be a fortnightly addition to our plan. Here's hoping that investment pays off with some more meaningful sounds coming our way soon :-)

Playing with my sister Mia - she builds 'em, I knock 'em down!

On the medical front, we have had a relatively quiet month on the appointment front, although we have a few more coming up. We've still to hear about the spine and hip x-rays, which is something we'll need to chase up on, but hopefully nothing up with that. We see ENT again in another week or so, Hearing in a couple of weeks (still trying to get an accurate read on the right ear), more vaccinations to come (just had his measles, mumps, rubella, & chicken pox one), as well as a few consults for upcoming surgeries, both ENT and general surgery for his undescended testes. We also have to apply again for his disability support, although I'm guessing once they know his official diagnosis, this might be the last time that we have to go through that step! It really isn't something you grow out of :-(

But it hasn't been ALL hard work over the last month....here are some of our lighter moments.....

Bubbles are ALWAYS a hit!

Out and about in GL with the folks!

Chilling on my sofa with my remote - mimicking Daddy :-)

Yep it's all pretty funny stuff!

One of my fave times - bath time! (Ignore my tum redness, it's from my sticky tape holding my apnea monitor - looks sore, but doesn't bother me!)

And pooped in the evening!

Nate had his first party invite too, and to Granny's 70th no less!! We have spent a lovely weekend at Waiheke, helping Granny celebrate. The weather was just beautiful, lots of great family friends came over to share in the auspicious occasion with Mum and Dad, there was plenty of yummy food, the wine was flowing, and all was just perfect :-). Happy 70th Granny!

Granny about to do her 70th speech!

Granny mid-speech (note the classy stair barrier, Nate's on the move!)

4 generations of Ryans!

And a big thank you to Jan and John Keating, for Nate's gorgeous new quilt - it's a competition piece, with the Jeremy Fisher theme - very very special!

And last, but by no means least, the long awaited 'Sunday' TV programme about Super Power Babies, will go to air on Easter Sunday! Yay!! It will do wonders in raising awareness! We are not sure if Nate will feature in that or not - but here's hoping so. So be watching! And the book should be out by July too.....

 

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