House update as at the 19th October

The latest photos for those overseas who are wanting to see the progress. Mia and I popped around on Saturday to snap some progress shots, as did Robin and Ruby on the Sunday. Lots of progress happening now!

The view of the 'circus top' from the top of the street

And looking up the street

Garage door to go in this week

Looking out the garage opening

Garage storage area

Downstairs hallway, Mia in the wine cupboard!

Mia in her room

Mia in the Master Bedroom ensuite

Looking left to the wardrobe

From the hall into the kitchen & lounges

The kitchen!

Looking towards the scullery

In the scullery

The formal lounge/dining area

Mia in the formal lounge/dining

In the informal lounge

I think I have to end on a curtain fabric now, seems I've started a trend?! Check out the roman blind fabric for the upstairs guest room and the girls' rooms (although the girls will have the beading added too). Slowly coming together :-)

 

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Bouncing rocks!

Nate's bouncer almost deserves its very own post - $45 of pure magic! He LOVES to kick against the couch and bounce himself, and loves it even MORE if you bounce with him - many an hour is spent in this way! We figure that it has to be good for his muscle tone too, so we encourage him even more :-)

So to kick off this week's post, check out the videos below of him in action.....the second one is with his sister Mia - his next favourite thing is playing with her hair!

But it's not all fun and games in 'Nate World' unfortunately! Next week we have yet another onslaught of Starship appointments....

• First up is Ear, Nose & Throat (ENT). Some of you may remember that about 6 weeks ago, Nate's exploratory surgery was cancelled as the view was it was better to wait until he was a little older/bigger, and to see what effect the caffeine had on his apnea, seeing as the view was that it was central-system related. Well this week we are back to see his specialist to find out the next steps.....and given that we still have some snoring, reflux, and on occasion heavy breathing, they may well decide that soon is the time.
• Next up is Cardiology which is the long-awaited check on his heart. Not looking forward to that one, as the booking confirmation suggests a 2-3 hour appointment - never good with a baby! But I've been worrying about his heart, as heart issues are not uncommon with T9M, so it will be good to get that thoroughly checked. I guess those are the sorts of checks that tend to happen with babies diagnosed while still in NICU (which would be most babies), and which of course we never had. So it's all a bit unknown.
• And finally another ultrasound on the kidney and renal tract. A follow up to prior, and possibly a little more in scope, and I guess 'no change' would be good news on that one. Fingers crossed.

So.....big week coming! I'm sure Robin and I (and Nate!) will all be pleased when these Starship appointments settle down. Having said that, I'm constantly struck by how fortunate we have been to date. And yet it still feels odd even writing that, when I consider all we do have to deal with!!!

However what we have experienced to date, pales in comparison to many others we've heard about. Since we were diagnosed, I think there have been at least another five babies who have joined the T9M Family Facebook group, with the current membership now sitting at 132 worldwide. And some of the T9M'ers and their families are finding it pretty tough going right now...

• Russia's only T9M baby has just been diagnosed and joined our group - unfortunately suffering a heart attack over the weekend due to her T9M-related heart condition, and so is currently in ICU. Hearing from that Russian family around what little support exists there - both medically and developmentally - and you realise how views, attitudes, and perceptions of Trisomy kids, have a LONG way to go in parts of the world. That family was basically told to leave their child at the hospital. And finding a cardiologist there who will treat their baby, is proving nigh on impossible. Just tragic. Fingers crossed they find help, and that little Glasha pulls through ok.
• Another four year old in California had to have brain shunts put in place over the weekend to reduce fluid and pressure, and then suffered stroke-like symptoms, so is now also in ICU. Her mum reports that after a few shaky days, Annabeth looks to be turning the corner now.
• Another very wee one in the States just joined us - the baby is only about 7weeks old, on ventilation with a trach coming, has significant organ challenges, and is still in NICU. Her parents are bravely trying to navigate all that now. Don't envy that for a moment.
• Even Nate's T9M sister (one day older Felicity) in the United States is in hospital tonight with croup and severe dehydration. Felicity has also been found to be a silent aspirator and is now on thickened fluids and may need a mic key button in time.

All in all, some scary stuff out there. But this wouldn't be an account of a T9M journey if i didn't acknowledge that. Hard to read about sometimes (in fact often), but at the same time worthwhile, just to be able to understand some of the potential risks, what to watch for, as well as well-needed advice at times. It also reaffirms to me the value of keeping Nate away from bugs, and I'm pleased that we've been so rigid about that with visitors. The risk of a cold or flu quickly becoming pneumonia, is too great, especially if there is silent aspiration going on. It's an approach I'm going to keep up, until he is safely through his first couple of winters. (So sorry if that means I come across as rude to people who want to visit!)

Anyway moving on to some happier stuff....:-)

• Grandaddy's plinth is now complete! Physio still isn't Nate's preferred past-time (by a long way!), but it's a WHOLE lot more enjoyable for him on the plinth than it was! Plus 'raspberries' have become the sound of the moment, and Nate is delighting in making them and having them made back to him :-)
• Nate's also been spending lots more time in his Bumbo seat practising his sitting, feeding himself his rusks, and holding his own sipper cup :-). He continues to eat really well, and we are sure his growth will reflect that at his 32.5 week (or 26.5 week adjusted) weigh-in this Wednesday. And we have just bought him a high chair, so more fun and games to come on the feeding front I'm sure!

• Nate's quilt has also finally turned up! Robin's Aunt Sally made a quilt for Nate and sent it sometime back, and we thought it must have got lost with us moving house. BUT surprise surprise it turned up the other day....a gorgeous dinosaur-themed piece, with a really lovely connection to Robin's late Mum incorporated within it. Just beautiful. And interestingly enough - and without even knowing - Sally picked the same theme as Nate's name card in NICU :-)

Nate's incubator name badge

Quilt from Great Aunt Sally

• Work is also going well for both of us, and I'm particularly enjoying being back at work. It has its manic moments of juggle (Nate appointments the main reason), but we can both see how things can get more settled in time....
• Speaking of which, we should be back in our own home within about four weeks time! Exciting and a huge relief at the same time. Looking forward to not having to camp in a rental, or having to spend weekends sorting house stuff like paying reno bills, choosing carpet, curtains, wood, window fittings, taps, door handles, doors, and the list goes on, and on. It's been a great experience so far, and just what we imagined, but it will be nice to see it all done and dusted too :-)

Our final couple of videos for today are with Daddy (exploring his face, and having a laugh!), with Granny and Grandaddy (having a chat!) and with me (having a chat and blowing raspberries!)......enjoy :-)

 

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Nate's Digs progressing further...

Here are some current pics of our new digs, posted especially for Nate's Grandad Roy (Robin's Dad), who we talked to about the house a lot, on our last visit to the UK. Amazing to see it all finally happening...check out these photos from the 12th October....

My Dad standing in the garage

Tradesman working in the downstairs bathroom

Standing on the internal stairs looking down to the girls bedrooms

At the front door looking out over the porch

From the front door, looking down the hallway

From the top of the stairs, looking along the hallway to the kitchen/lounge

From the entrance to kitchen/informal lounge, looking back to front door

Family bathroom off the hallway

A bedroom, with builders make-shift toilet!

Master bedroom, looking at wardrobe & ensuite

Dad standing in the kitchen

Looking towards the scullery off the kitchen

Informal lounge, right of the kitchen

Formal dining & lounge area, further on from the kitchen

Window seat area in formal lounge

In formal lounge, looking back to informal lounge/kitchen

And here is something a bit random....an Auckland politician (who shall remain nameless in my copy, just so we don't have any google links from anyone doing a search on him!) apparently stopped by the house to have his photo taken on site?! Odd?! Well the photo has now featured in the NZ Herald, with the accompanying article being about his impending second term as mayor, and a battle he will be taking on around home loan restrictions that will make it difficult for first home buyers in Auckland.

Not really sure that this fits the 'first home' brief, or why he chose our place given how many builds there are around here at present - but here he is, standing in what we think is Ruby's room. Our builder Rod reckons that he chose our place as he recognises good workmanship :-)

NZ Herald 13th October 2013

So all in all it's pretty exciting! And given that our rental is nearing its end, we SHOULD be back in by mid November!

And for those of you less interested in the house and more interested in Nate, don't worry, I've found a tenuous connection to bring it all back around to our boy! I've included a pic of what will be his light shade and roman blind fabric (on the left), as well as the frieze on his bedroom walls (on the right). It's called Far Far Away and features everything from a London bus to a New York cab - TOO cute!

Perfect for our cheeky monkey...see below :-)

Too Kool By A Long Way!

 

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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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