May, Mothers Day, and Movement

May brought me my second Mothers Day as a young Mum! Just another little reminder of how LUCKY I am to have wee Nate in my life - he is of course pure joy! And he splashed out and got me some slippers as a pressy - with winter coming, mostly wooden floors, and an unfinished house, it's not the warmest at our place so they will come in very handy - and with diamantés on the top to boot :-)

And on Mothers Day, the grandparents toodle-ed off for their latest overseas jaunt - cue ten weeks of jetsetting about.....(insert any or all of the following)......

• sightseeing like drunken teenagers,
• drinking fine wine/beer/whiskey (likely on the same occasion(s)),
• living large (definition of exactly how large is unknown),
• dining at some multiple Danish and English pubs and eateries,
• indulging rarely seen and highly precious grandchildren (perhaps even their own children :-)),
• visiting old treasured friends,
• ....and generally behaving like a couple of students on their OE (who've either won lotto or are maxing their student loans out), eating at said fine eateries, and choosing single malts over blends. So be warned...a couple of 70year olds (rounding) are out on the town world!
• Here are some shots before they flew out...

Walking Granny around the house :-)

So ten weeks without the gramps, but with Skype we'll stay in close touch, so Nate can get his weekly dose. And we'll post lots of Nate video on the blog, so they can get theirs! While Granny is away, Aunty Helen (the girls Mum) is kindly helping us out, and Nate has taken to her hugely! Always keen to show off his latest tricks to anyone, he is especially keen on Helen for many reasons - her animal sounds when reading his animal books, hugs, and mat time. Helen's first day solo was also my first time away from Nate - two and a half nights away in Australia for work - but we all survived brilliantly! We're very lucky Nate has such great caregivers - Team Nate rock!

Developmentally, Nate continues to make progress. At 14months of age (non-corrected) he now weighs in at 10.2kg, and 77cms long - both on the 50% percentile. His head continues to track just under the 91st percentile, at 48cm. After the last month, where he has been unwell, we're pleased he hasn't dropped off the growth too much. He has a few more appointments coming up soon - more hearing tests pre his hearing aid fitting, respiratory sleep study to come, and few jabs (flu jab, 15month jabs, and also meningococcal). He is also continuing with all of his different therapies, although with his recent illness we had to cancel a few, but he isn't letting it slow him down too much, and is still up to all his inspiring tricks!

And speaking of inspiring, here's another story of such, not a T9M'er, but another example of how anything is possible! Click to see another inspiring story :-)

Here is our Nate cruising the furniture....

And crawling in the tunnel that Sylvie made him...

And - rather grumpily - pushing his bunny walker down the hallway (when really he just wants his lunch!).....

Crawling the hallway, and helping Daddy to vacuum....

And afterwards, exhausted, chilling out and watching some Wiggles on his sofa......

And what's coming up? Well next weekend two other wee kiddies with very rare chromo conditions, Lily and Louie (who is also a fellow super power baby and featured on the Sunday TV programme) are coming round for a play date! Part of me feels I should launch into scone/cake baking for the occasion......but knowing how little time we seem to have these days, it's unlikely!

Last, but by no means least, click on this link..... Check out how cool my Grandad Ryan is!

Modelling my monster jeans - check out the knees! :-)

 

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MAY (2014) the house ever be finished?!

Well by special request from one or two of you, here is an update on the house. Most of you probably think that by now we must be well and truely done on 'our six month build'. Hhhmm. Guess again. We're over a year now!!

Here are some pics of where we are at....excuse the mess.....there a few reasons.....firstly, we still have a fair bit to finish on the house, so unpacking remains a future action for us......and secondly, Nate has really taken over! One day we'll get all sorted, but as at May 2014, we've still got all of the below to go......

• Deck area - lighting still to be added to the pergola, external fireplace still to be installed/built, and then installation of the automation rock speakers can happen
• Informal lounge - painting of entertainment unit, painting of exteriors of the slider door, and furnishings
• Formal Lounge / Dining - tv installation, internal fireplace connected and tiling done, lights moved and rehung, painting completed, and it's with us to complete the entertainment unit painting and organise window seat squabs (and one future future future day, furnished!)
• Hall / Stairs - stair feature to be completed (99% there now, which is great!), stair area still to be painted, internal handrail to be added, fit-off of hall coat closet and linen closet, venting to automation cupboard
• Laundry - fit-off to be completed by us (benches, cabinetry, shelving, tubs), and venting to exterior/garage
• Master bedroom - wardrobe installed, painting completed, blinds made, window seat squab made, wallpapered (all with us to do)
• Bedrooms - wardrobes in the folks room, the girls rooms, and Nate's room, plus wallpapering in the guest room, and replacement window in the guest room (all with us to do)
• Garage - gibbing, painting, and dented garage door replaced
• Front Porch - floors sorted, and painting completed
• Front planter boxes and front gate - masonry completed, power and irrigation completed, an additional scoria load, installation of handrail, installation of automation keypad, and then with us for soil load and planting
• Backyard - fences replaced, landscaping, and council-required planting (all with us to do)
• General - various spots of painting, unfinished trim/pieces throughout the house etc. But on the up note we're fully alarmed, and ultra secure :-)

Yep.....still some hard yards to go, and a fair chunk of it is unfortunately still with our builder and his tradesman to complete, which then affects how quickly we can get the next things done (you know, like furnishing, unpacking, planting, final automation etc etc).

But on the up note, with a week off work recently and an up weighted drive/focus ourselves, we have started to made some serious inroads in OUR list of tasks.....Robin has filled, sanded, and painted the biggest side of the formal lounge shelves (one small side still to do), and stained the deck and exterior walkways. We also had the scullery blind installed, we've finalised and ordered the laundry fit-off which we're now waiting on installation of, the master bedroom wardrobe is also under construction now and due for installation shortly, the wallpaper has been ordered for bedrooms (a month indent from the UK), bedroom blind fabric and window seat squab fabric chosen, master bedroom curtains now ordered, the scullery splashback and scullery blind have gone in, some of our prints have been hung, and all of the lounge windows have now been tinted. Phew! Progress at last! Here's some proof....

Masonry walls on the planter boxes are now underway

But more coats needed, plus painting and automation keypad put in

Top of the stairs, looking back at the front door

From the front door, looking towards the lounge/kitchen

Kitchen pretty much done (still to find chairs)

Informal lounge - still painting to happen

Our newly painted shelves (courtesy of Robin!)

Robin's newly stained deck

And we're now working through some quotes for the informal lounge sofas (sorry Mum and Dad, but the 25year+ old holey, floral sofas will soon be needing a new home, antique as they are). I'm sure going to miss the sofa padding falling out on a daily basis...

Needs no further caption really, does it?!

So in summary, we are completely over this unfinished house thing - we're aiming for done ASAP - watch this space for final shots SOON!

 

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Meet some of Nate's global T9M family!

Well apparently Nate now has 104 super-rare and super-hero T9M brothers and sisters in the world, at today's count anyway!

Check out some of the gorgeous kiddies, teens and adults from around the world - hopefully we'll have the chance to one day meet some of these awesome superstars in person :-)

Alana, 4yrs, USA

Daria, 3yrs, Ireland

Reece, 9yrs, UK

Sienna, 4yrs, Wales

Sara, 7yrs, USA

Stacey, 28yrs, USA

Elijah, 2002, USA

Kylie, 2004, USA

Gia, 2010, USA

Steven, 2008, USA

Felicity, 2013, USA

Tegan, 2011, New Zealand

Holly, 2009, UK

Liv, 2011, Nederland

Kennedy, 2013, USA

Mackenzie, 2009, USA

Megan, 2013, USA

Lieke, 2008, Nederland

Ben, 2012, Dubai

Arianna, 2011, Singapore

Caoilainn, 2009, UK

Mikki, 2009, Nederland

Phillip, 2007, USA

Grace, 2012, USA

 

 

 

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One in a 100,000,000

Well it's official, Nate is one in a hundred million! We knew he was rare, but THAT rare?!

Check out this video of Holly Abigail Kitchen, a wee T9M girl who lives in the UK. Her brother Louis produced it - to bring more awareness to T9M and the impact on family life. Louis worked out that Holly is one in a hundred million, and actually Nate is likely to be even rarer still, given that T9M males are less common than T9M females.

Holly has the exact same diagnosis as Nate, and is 30% affected tested by blood (Nate is 27% affected). Of course no two T9M children are the same, and the affected parts can differ markedly. That is why doctors refrain from giving parents much in the way of expectation - in reality children can have very different medical challenges, and the developmental difficulties can range from mild to severe.

Click on this link to see Holly

So there really is no way of knowing what is to come........it's all just part of the journey.......yep, that's something that's readily accepted by any parent, not to mention those with a child facing hardship. Ah...'yes NO', as us Kiwis would say!

Over the past week or so Nate has been a bit off colour. Last week we had a few chunders of worthy note, and the kitchen floor and table needed a solid wash as a result. Then this week we had another couple of chunders, more floor washing, and a truckload of laundry too (you know, more than normal!). Some sort of gastro as the nappies weren't so pleasant either! Prompted a trip to A&E at Starship to make sure we weren't dealing with another UTI or anything more sinister, but nope just your common gastro!

Hanging with Nanny Sylvie at A&E Starship

That combined with a cold, a cough, some teething, and an ear infection, have made for a some what irritable wee man over the past week (Nate that is, not Robin - although to be fair, with all the sleepless nights that we have had over the past two weeks, some grumpiness on the part of everyone has been more than fair!).

Pleasingly though, we seem to be just about through that now, and back into photogenic and happy camper Nate...here he is turning on the charm once more....

Ready for a fun day with Nanny Sylvie at home!

Wearing my Nature Baby from Auntie AK!

Checking out Daddy's sneakers....

Me and sister Ruby hanging out!

Poetry in motion......

Gorgeous gorgeous BooBoo

Finally, here he is helping Granny with her knitting earlier tonight......Nate's job is to pull the string :-)

 

 

 

 

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