Thursday, August 14, 2014

Walking.....not bad huh?! Proud, Proud, Proud!

We (well Grandaddy) finally managed to get a few videos of our wee man walking...CHECK HIM OUT! This is Nate at approximately 17months of age - he has been walking a little for the last couple of weeks, but he is really starting to take off now!

Not bad for a kid for whom walking was something that couldn't be guaranteed. And long may he continue to buck such thinking! (Touching every bit of wood we can as we write that :-)).

Here is our little miracle man in action....walking, and a little spot of dancing too...

Cheeky monkey, enjoying his first KFC Crusher!

 

Tuesday, August 12, 2014

Super Power Babies book launch in Timaru!

On Sunday the 10th of August, the Super Power Babies book launch took place at Sopheeze in Caroline Bay park in Timaru, and Granny, Grandaddy, Robin, Nate and I decided we really needed to be there to see our boy in print!

Eating with Daddy before we left home

We flew down to Timaru on Saturday morning, thankfully with a full row all to ourselves - so much easier travelling with a baby that way! Although Nate does like to empty everything from the seat pockets....

We checked into a motel, and hung out with the wee man. Fish and chips, good wine, a warm comfy motel, and some very brisk cool air, made for a great start to the weekend. Sunday saw us all battling a few colds, and Nate some serious teething, but after a few coffees, food, a heat pump, and some pamol, we were set!

Little man ready before we headed off!

Here are a few photos of the afternoon, sadly not as many as we would have liked, but a great afternoon had by all. It was great to see Rachel and Sam again, hear them speak about the book and their experiences, and to meet some of the other families with SPB kids - particularly wonderful to meet Michelle and her son Adam, who I have got to know on the Unique NZ Facebook closed group. Really special to be there and be part of this fantastic initiative....

Some of the 20odd SPB who were there for the launch!
Rachel signing books - book opened on the Nate page :-)
Me with Rachel!
Nate & Grandaddy hanging out at the launch
And with Granny
And with his Daddy

Check out super power babies website here for more details

Click here to see streaming of the event

And check out this link for the Timaru Herald coverage

Back in the motel that evening, we celebrated with some Thai and more good wine! Nate and Grandaddy spent some time hanging out on the carpet chatting....

And on Monday morning, we headed off to the aviary at the park on our way out of town. Here is the little man checking out the parrots - he LOVES parrots so we had to take him here :-)

Plus a brief trip down memory lane for Mum and Dad...we went past the hotel where they spent the first night of their honeymoon - the Grosvenor Hotel in Timaru - some 48years ago! Here it is...a stunning three story number which took awhile to find, but we got there in the end!

After that we headed back to the airport for home, Nate and Grandaddy were both knackered! Here is Nate having a wee snooze before we boarded....unfortunately he then spent the next 1h20m flight awake as a result - we never seem to time that right!! It was also VERY turbulent flying into Wellington, so a very green Mummy had to leave Daddy to manage Nate for most of the flight and the one after it - first time I've had to use one of the little sick bags they give you (oh okay well maybe five of them) - the upshot is, no more small plane flights for me!! Nate on the other hand, thought the bumpy flight was a barrel of laughs....Hhhmm!

Best little BooBoo in the World

 

Granny & Grandaddy are home!

Well Granny and Grandaddy are home! And Nate has revelled in seeing them, and showing off all his new work-in-progress tricks!

And in the last week or so he has made some really big improvements with his gross motor - in fact, after many many weeks (easily 10w plus) of walking 4-5 steps solo, his walking has now really taken off - he can now manage at least 20steps or so on his own, and launches off the sofa towards the table or hallway quite intentionally! So he is not quite up to walking to the letterbox to get us the morning paper, but then not too far off that either :-). Pulling up on counters, sofas, fridges, walls, legs, or anything really, is second nature now. He can also crawl up and down our stairs no problem, and if anything he does this a little too quickly and confidently, so there might be a tumble here to come I think...

Plus his fine motor control is also doing well- with swiping iPads and iPhones, picking up little specks of paper or ricies, and turning beads on his abacus. We are also working on cognitive skills such as building towers, putting toys into boxes, and shape sorting - he has only recently become a little more interested in this - before now it was about destroying towers, and emptying boxes! We are continuing with his physio sessions, weekly conductive education sessions, a developmental playgroup, and now also a jumping beans class with 'typical' kids, where he can 'play' with these emerging skills. Physically his confidence is growing for sure, although his tone, balance and coordination still needs a little work to keep up with those around him :-)

Showing Grandaddy how to use Duplo :-)
Checking Grandaddy's nose & glasses!

We also had a recent visit with our Speech Therapist from CDT, and realised that Nate's feeding and oral skills are somewhat delayed (he's not really into chewing), as is his actual speech. So we are really working on both, as much as we can, to try to catch up. Feeding wise, we are encouraging him with soft finger foods to aid his chewing, increasing textures, and decreasing his formula quantity over time. We are a week in to that now, and he is making really pleasing progress...

Out with the folks, & eating chippies for lunch!

Speech wise, we are using our makaton signs and focusing on single words....nappy, eat, drink, bottle, more, finish, ball, cat, walk, car etc. So far, he can only say 'mon mon' for the cat, 'mum mum' for his mum mum biscuit, 'um um' for his dum dum (dummy), and also his version of the words 'round and round' when you sing 'the wheels on the bus' to him. However he can point to his head when you ask, and occasionally to his ears and nose (if he can be bothered, or you can hold his attention long enough!), so we definitely think he understands more than he is able to actually communicate. We are working on saying animal sounds linked to animal names, body parts, and concepts such as in, out, on, open, close etc.

We have been told that by 18months, about ten words is 'normal', so that isn't looking too likely with Nate now 17months :-(. Although, a delay in speech seems to be usual for our T9M kiddos. Of course we would love to be bucking that trend, so we are continuing to take as many speech classes as we can finance, and have also recently added a singalong class with the Child Development team, in an effort to try to help him along further. Plus he is a HUGE fan of The Wiggles, so with any luck he'll be repeating their songs in time too :-)

Couch wrestling with Daddy

Unfortunately the sleep study results are in, and we didn't pass :-(. So we are now back on an Airvo machine, slightly different to Cpap in that there is no mask, but nasal prongs. We should be on Cpap ideally but Nate struggles with the mask (translation, we struggle with the mask, no-one gets much sleep). So this machine is the second best option for treatment, but better than nothing. Without it Nate will wake repeatedly and not get enough oxygen or sleep - not great for learning basically. Nate is still considered 'severe' as he has ten waking episodes an hour where he desats, versus the thirty he used to have. So progress, but not perfection. So back on a machine we go.....I'll be honest, it was a bit of a downer day.

Anyway on the up note, we are off to Timaru this weekend, for the launch of the SUPER POWER BABY BOOK! Exciting! Coincides with Nate's 17month 'birthday' weekend, and Granny, Grandaddy, Daddy, Nate and I are off to the official book launch to see the wee man in print! :-)

 

Monday, July 21, 2014

The latest on the littlest greatest...

We've had a great few weeks with our boy - with good health, and even better progress!

At 16months 1week, Nate now weighs in at 10.18kg, with a length of 79.8cm, and head circumference of 48.5cm. Pleasingly his head has dropped back from the 91st percentile to more like the 85%. However his weight and height have also unfortunately dropped off, with him currently sitting at about the 40%. Probably impacted by the virus he had a few weeks back. So some fattening meals coming his way soon!

We also saw our Developmental Paediatrician last week, who was pleased with his progress. We have made the decision to delay any surgery for now, with the exception of being put under to try to get an accurate read on his hearing so we can get a hearing aid - and we are now just waiting on that to be scheduled. We also have another sleep study coming up next week, and hopefully he will pass that with flying colours!

Here are a few pics of the man of the month...(well the man of every month!)...

Loves to help Sylvie sweep!

And here he is at home working out with Deb.....

Here he is playing with all his treasures from the great annual The Warehouse Toy Sale (shameless plug!)......we are hoping these will help his skills develop even more (at least that's how I justify the bills! :-)). First up is another 'poetry in motion' sequence of our cheeky monkey.......

With my new tool bench, & modelling my jumper from Great Gran
Daddy working on his new truck.....
...for many hours on end :-)
Finished product!
His stationary wheels

Hanging out with mummy and daddy...

Me & my BooBoo

Here he is at Chipmunks in Albany....

And on a play date with gorgeous little Louie.....funny watching him, he wasn't so sure about sharing his toys, or his Daddy for that matter! A good reminder of 'typical'....:-)

And last but not least - great excitement - Granny and Grandaddy are coming home this week!! The little man won't know what has hit him! He will be looking forward to showing off his newest trick.....some unsupported walking...unfortunately this is all we have on video but he is getting a little stronger with it each and every day!

Nate Selfie 1
Nate Selfie 2

 

Saturday, June 28, 2014

Our Aussie Holiday snaps

Mid-June we headed off to AUS for a weeks R&R - Nate's first overseas holiday! While still recovering from his virus, he was well enough to travel, and after the week prior, we were all in need of some warm weather, some schedule-free days, and some sleep! And so off to Byron Bay we went :-)

As luck would have it, it was the year anniversary of when we first received Nate's diagnosis. Wow time flies. It is said the first year is the hardest, so let's hope that's the case and things just get better and better from here!

Here are some of the shots of our time away...

Nate in the Air NZ lounge - we picked the quietest corner we could!
Reading to Daddy (and all the other passengers!)
Disembarking with Mummy!
On the coast with Daddy
And with Mummy
Me and the BooBoo
Selfie x 2
At the playground, discovering the donuts!
And the swing!
Another day with the swing! Love it!
Swinging with Daddy!
Hitting the beach!
Not sure about this water thing - let me sit down in it!
Another day exploring the playground!
Trying the BIG slides with Mummy!
At Crystal Palace with Mummy
At Crystal Palace in their gardens
Hanging at our unit (taking a break from the Wiggles!)
Heading home, tuckered out!