Nate makes the cut!

Good news - worthy of another quick post!

About a week or so after Nate's diagnosis, we heard of a photographer (Rachel) and her husband (Sam) who were hoping to embark on a project to photograph unique chromo kids within New Zealand. I actually referred very briefly to this in a past blog - they were the inspiration behind us referring to Nate as our little superhero :-).

Refer to www.superpowerbabies.com for more info...

Super Power Baby Project

Rachel and Sam's' motivation is simple - to capture the essence of these gorgeous kids, focusing on what they CAN do, as opposed to what they can't. It is intended not only for the families of chromo kids today, but for parents and families of chromo kids in the future - after all it's a very scary thing having a unique chromo child, and getting your head around all the challenges of that, and a book that celebrates the good within that would be well worthwhile. The idea was actually inspired by Rachel and Sam's own unique wee girl Evie, and it is intended as a tribute to her and all of her awesomeness (refer to their website for more on that!).

Well, way back then, we submitted an application about all of Nate's superpowers (naturally there were lots!), and have been hoping ever since that MAYBE he might just be lucky enough to get selected (if the project ever gets off the ground).

Well this week, we found out that our little superhero Nate HAS been selected!!!! Yay!!!!

And the project is well on its way to being funded with about $25k fundraised already! So FINGERS CROSSED that it gets there!!

We're also hoping to convince Rachel and Sam to come and stay with us, when they come to Auckland to photograph all the gorgeous kids up in this neck of the woods! And it would be amazing to be able to help them get this worthy initiative off the ground - please go to https://www.pledgeme.co.nz/1392 if you are interested in helping this along too - the bonus is you can get your own copy of the book with our wee Nate in it :-).

PledgeMe - Super Power Baby Project

Toy focused and blowing bubbles - and all at the same time!

 

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Nate's new digs

This post isn't really Nate-related, unless you think of it as a post about Nate's future abode :-)

I've been meaning to share some pictures of the house project - and yes we pick our timings to undertake a large renovation - although in fairness, we weren't really counting on a Trisomy 9 Mosaic diagnosis to boot (who does?!).

Anyway, undertaking a renovation of an old villa or bungalow, and navigating all the joys, challenges and learnings that come with it, has been on my 'experience wish-list' for a LONG time. Having bought the 1930s bungalow back in November 2011, we have been working through when and what exactly to change. More recently, we have firmed up plans with an architect, gained the council resource and building consents, and in April of this year, we finally moved out and got things underway.

That timing was always intended, as there was no way we could have brought a newborn baby home there over winter (no insulation, holes in the walls, and generally just not a safe environment). However our move turned out to be quite timely - as when the movers moved us out, the rotten stairs gave way on them (thankfully no one was hurt), and the builders told us that the electrics in the kitchen were hazardous.

The below captures some of the journey to date. We've been fortunate to have secured a great builder (and bank manager!) who understood when we went MIA a couple of months back with Nate, and who continued progressing the house (fantastically), in our absence. Rod, we're really grateful!

And fingers crossed (yes please, Rod), that we'll be back in by early November :-).

The demolition starts - April 2013

Excavating for Garages, Bedrooms, Laundry, Bathroom, AND wine cupboard :-)

Clearing the backyard for 14m more of house!

Knocked the back of the existing house off!

Sorting foundations of the new kitchen & living areas

Early work on the kitchen & living areas

Looking down into the basement, from the new living area

And where things are at as of today, the 14th of September 2013.......

Taken from inside the scullery, looking into the kitchen

Looking from the kitchen, into the living area and outdoor area

Standing in the living area, looking left to the kitchen, and ahead into the dining & formal lounge

Looking from the formal lounge & dining back towards the living area & kitchen

Looking from the front door, along the hallway to the new build

The internal stairs - watch this space for a special feature here :-)

Looking down at Robin from the front door!

 

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A non-event becomes a little event

Well after all that build up for ENT exploratory surgery, it was all to no avail! We had a call from both Nate's ENT doctor and his Respiratory doctor late on the Monday afternoon (the day before the surgery), to say that after further review, they were now thinking it would be best to wait another three months before proceeding.

There were two reasons for this - firstly, they now felt the sleep apnea issue was primarily to do with a central issue over an obstructive airway issue, and that we needed to give the caffeine more time to address this before investigating from an Ear, Nose, Throat (ENT) perspective, and secondly, they wanted him to be a little older/bigger before having a general anaesthetic.

Entertaining Granny

That event now ruled out, we then set about enjoying the last week of Jen's maternity leave - sorting some things on the house build (all fun stuff, like picking lights, ordering carpet, adding a skylight etc), spending lots of time doing Nate's physio, and generally taking things easy!

Unfortunately......Nate then got ill on the Thursday morning. He threw up while at our Developmental Playgroup, and within an hour had a high temperature, and was generally a very unhappy camper. That prompted a quick visit Thursday lunchtime to the GP, and then a referral onto Starship A&E in the early afternoon.

We were then kept in hospital overnight on Thursday and Friday, where Nate was treated for a urinary tract infection (UTI) with some strong antibiotics. Thankfully he started to make a quick recovery even after the first lot of antibiotics, and so then proceeded to entertain the nurses for the next day or so :-).

Check out the YouTube video below!

By Saturday early afternoon, we were finally released to go home. What a relief! Nate was well over that hospital room and completely out of his feeding/sleeping routine. His folks were pretty over the whole thing too, quite frankly. Hospital stays with a six month old are not for the faint hearted :-(.

But other than some pretty strong antibiotics - and some VERY unpleasant nappies for the next six days as a result - Nate has bounced back really well.

Here's hoping that this doesn't become one of Nate's issues (recurrent UTIs that is, oh and also unpleasant nappies!), although I guess in the scheme of potential issues he might face, it could be a lot worse!

Anyway, he was soon back to his old self - chatting up a storm, and more interested in his feeding again :-).

Nate & Nanny Sylvie

Unfortunately those few 'off' days meant that for his 26.5week weigh-in, he only gained 160g over the two week period, now weighing in at 6.4kg. That's less than half his previous fortnight weight gain. His length was up from 60cm to 64cm though, since the prior four week measurement.

Hopefully we can get some good growth in the next two weeks, especially now that he is taking more solids. Check him out with Nanny Sylvie - loves his veges but we're still working on the cereal!

 

 

We had a good week on the physio front - perhaps because he got three days off to rest!

On Mondays, Nate attends Carlson School's free 'Early Smiles' programme with Granny and Nanny Sylvie. At Early Smiles he gets the benefit of a quality hour with both a physical therapist and a speech therapist. They do a routine that is a mix of physio for his gross and fine motor skills, singing, reading, and lots of face time.

Chatting to his own photo, while SITTING!

The repetitive nature of it, means that Nate is starting to remember and recognise the routine, and is making great progress with it. Here he is with Nanny Sylvie, sitting with support, but smiling and chatting to his own picture!

The next two pictures show Nate having further physical therapy during this past week.

Mirror? I'd rather look at the car!

He doesn't always look this strong (his tone can change from day to day), but it's a BIG improvement on where he has been! We've very proud of how hard he tries :-).

Finally we also had Nate's first Needs Assessment with the Taikura Trust, having been referred by our Developmental Paediatrician Dr Rosie Marks.

Jess Jamieson, our Palliative Care Social Worker, kindly sat in with me as I answered a series of questions about Nate's health and diagnosis. It is always quite difficult emotionally, both having to relive the last 27weeks, but also having to discuss current and future concerns. Jess makes it a lot more bearable!

We will now await their response as to whether Nate qualifies for further Carer Support, but I hold little hope that this will be approved, at least at this stage. While they recognise NOW that Nate has a significant disability - one that will definitely result in a delay (known as Global Development Delay or GDD) that will becomes more and more apparent over time - they won't look to offer any support until these medical and developmental issues are actually more visible.

Gorgeous Nate!

I find it somewhat ironic that while his diagnosis is openly acknowledged, the wheels on the bus won't engage until he falls FURTHER off the developmental curve. It's not an approach that I'd call proactive?! Still one hopes that that will change in time........

Final news on our front, is that I returned to work this past week. Thankfully I've had no concerns of Nate's welfare during the day with both Nanny Sylvie, and Granny and Grandaddy committed to our wee boy! In fact when I get home at night, he's like 'who are you?!''. A very happy little camper indeed!

And it's been really good for me to re-engage the brain on a work front. Not only does it help one keep a more healthy (and less consuming) perspective with all that has happened with us, but it's something that I enjoy and have missed.

Many mums of 'special needs' bubs experience a great amount of anxiety around whether to return to work or not - is it best for their child or not? However at the end of the day, it's a very personal decision that really I don't think anyone can understand (or judge), until they step into those shoes themselves. For me, the decision not only provides emotional and mental well-being for me, it also affords us the opportunity to provide Nate with support and therapies that would not be feasible otherwise. Ultimately I feel it's the best opportunity for Nate :-).

To finish off this week's post, I've added a shot of me and our wee man. We have plans to get some professional shots of him done soon, it's just a question of squeezing that in!

I have also included a snippet of Daddy reading to Nate earlier today. Nate loves story time and gets VERY vocal! Especially when he knows the story - in this one, he is building up to his favourite bit (rather impatiently!). Enjoy!

Me and my AWESOME little man :-)

 

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Dads, ducks, and duds!

After the last 'honesty' post, I've decided that this one will be GOOD NEWS only :-). So here goes....break out the balloons and streamers!!!

Weight gain - Nate is up another 400g this fortnight, growing like an absolute trooper and now an impressive 6.24kg at nearly 25weeks. Frankly, he's positively porky (okay, a little stretch of the truth there!). And last length measure was two weeks ago, and he was 60cm then.

Arsenal - he finally fits his arsenal kit. Daddy is happy. The world is at peace. Football reigns supreme :-)

Can now suck from two more bottles types - had a go on two different types of 'typical' bottles, and managed both easily. Now all we have to do is convince him to be bothered with working that little bit harder with one of those bottles, for a couple of feeds a day! We're determined to work those low tone mouth muscles (so he can keep up with Daddy on the talking front :-)).

Goodbye Cpap! After not even one remotely full-night sleep since Cpap arrived (for any of us!), we're now investigating other options to help Nate's 'central'-related sleep apnea issues.......

.......and so hello caffeine (well he is from Auckland!). Nate is now sharing a twice daily caffeine habit with Mummy, as an alternative to Cpap. No trim lattes though, just a straight shot! The first day was Wednesday last week - TALK ABOUT WIRED!!!! No sleep from 4pm through till 1am!! But he's adjusting more and more everyday. We are likely to have oxygen therapy added into the mix too...watch this space on that one (we are waiting on the results from an oximetry that as run over the weekend before that's determined).

Sid Vicious bodysuit courtesy of the Normans

ENT exploratory surgery - scheduled for early this week. Some might say that that doesn't qualify for good news, but at least then we will know if Nate has an obstruction that may be complicating his sleep apnea condition, or whether it's just part of the muscle floppiness that will hopefully change as he grows.

Saying ''mum" - yep he can say it, just not direct it discriminately :-).

More makaton madness - in this household, we now also speak Makaton sign language. T9M-ers often learn to sign before they actually speak, so we've decided to embrace the concept early. We figure that learning it may well be harder on us than it is on Nate! He seems to have nailed 'bottle', and 'nappy', well at least the understanding part. So the latest signs that we are learning now include some of his favourite things - 'Froggie' for his green frog toy, 'Cat' for Monet, and 'Duck' for Jemima Puddle-duck. (Those of you who know Grandaddy, feel free to test him too :-))

Stylish threads - where do we start?! Got to be one of the coolest kids around! And not hard with Granny onboard! Huge thanks to everyone who keeps sending clothes - how spoilt is Nate!?!!! And thanks also to Uncle Darryl, Auntie Jo and cousins Thomas and Ethan for the cool bubble gun, the shaker, and cds! (it's just so fantastic listening to 'three blind mice', 'I'm a little teapot', and 'bananas in pyjamas'?!?!?! Daddy is well thrilled :-)). Anyway, check out some of his 'looks' in the photos that follow below...

England!! Outfit sponsored by Uncle Darryl and Auntie Jo!

First Puma Tracksuit, courtesy of Uncle Craig and Auntie Kate!

What else is new on the Nate front?

Well this week, he has just learnt to roll from his tummy, back on to his back (anything to get out of tummy time!) - great to see some progress :-).

Plus soon we will have a custom-made neonate suit! Watch this space for pics to come, but Grandaddy and Granny are shouting Nate a support suit to help his low trunk tone - we get measured up this coming Friday! It's thought to help hypotonic wee ones with the challenges of learning to control their trunk, and ultimately to sit up and crawl.

They are a really common therapy tool for hypotonia in the UK and the USA, but sadly aren't yet recognised or funded here under the Ministry of Health. One hopes that will change in time but we're not holding our breath :-(. Although interestingly enough, apparently ACC (a separate department run under the exact same government, but which won't cover Nate as his condition is congenital, not an accident) does recognise the suits' benefits and WILL fund these to treat the same hypotonic conditions that exist with cerebral palsy patients?!

Either way, we're not going to let that bureaucratic rubbish hold our Nate back :-)

Breaking out the solids ! Unlike some T9M-ers, Nate doesn't seem to aspirate, so we can more safely look at a move to solids, even though he isn't yet anywhere close to sitting up.

We've had four days of organic pear and are now on day two of sweet vegetable - although so far we're pretty much just practising spreading it on the bib and screwing our face up (Nate that is, not us).

And today was a special day, it was Fathers Day!

So we celebrated with Granny and Grandaddy, with Mummy and Nate shouting brunch and then we went down to the park by Motat and the Zoo. We enjoyed a short walk around the lake, where we spent time watching all the ducks, and making the most of the sun.

Enjoy the photos that follow....

And last but by no means least, there is a small small possibility that we've starting teething. Either that or we're just currently blessed with an excessive amount of drool and some lovely rosy red cheeks on occasion :-). Either way, it's fun and games!

Xxx

The three amigos!

Chilling by the lake, holding his new 'Sophie' from Granny

Happy days :-)

 

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