Grandad Roy's Legacy - Massive Thanks

Hi everyone,
We wanted to say a massive thanks to everyone who has so kindly contributed to Nate's
 Therapy Fund, 
in honour of Grandad Roy. 
We were just blown away by the generosity, and feel extremely fortunate. 
And 
given what a generous man Roy was throughout his lifetime, it really seems fitting to his spirit and memory.
It's a massive help and we really can't thank the people listed below enough! 
Hopefully we got everyone's name although there were some anonymous, so sorry if we have missed 
any and please do let us know!
It will really help in taking some of the pressure off us over the year, especially as Nate's therapy 
increases as he grows.
We are just so confident that the programme we've embarked on is the right path for 
Nate. 
Admittedly its pretty full-on stuff for an eleven month old right now! 
However given the results that we've seen to date, it seems absolutely the right thing for him.
We look forward to posting pictures of our wee man crawling, walking and talking, in time that is :-).
We want to thank you all so so very much for helping Nate in 
reaching his potential.


Thanks so much,
Robin, Jen, Mia, Ruby, and Nate


Superhero Supporters
Yvonne Barlow
John & Rafi Halksworth
Lizzie & Grace Halksworth
Henry & Alice Gregory
Mike West
Paul & Alison Coates
Bea Canitrot
Neil Mott
Netty Gijsselaar Toffoletto
Keiran Chang
Dave & Jacky Collins
S.Smith
Sarah & Jerry Slade
Kathryn Coviello
Sally Chang-Warburton
Audrey Raymen
John Payn
Tim, Jackie, Carlie & Mike Barnes
David & Jean Soulsby
The Barnes
Gwenda Payne
Jenny Farmer
Jerry Green
Paul Dudman / Paul Overton
Theodore Hesse
Srdan Bilic
Katie Bradshaw & Family/Jeanne Quinn & Family
Karen Payne
Margaret Card
Jane & Hector Charvetto
Jim & Collie O'Donnell
Cheryl Beattie
Jeremy Anscomb & Alison Le Dauarec
Clive Roberts & Dave Jones
Joan Durrell, Connie & Marilyn Durrell
Mike Joyce
Dipti Kumar Ghosh
John Goldenberg
Bruce Blake
Michael, Catherine & Anthony O'Donnell
Peter Ward
Robin McDermott
Brendan McQuillan
Harry Crummy
Janet & friends from Holy Trinity School
Luke Warburton & Family
Lewy Farrer
Melanie Burn
Rob Best
Teesdale & Curl
Lisa & Lana Payne
Will & Renata
Richard Warbuton
Fran Fullarton
 
 

 

 

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Daddy's home & it's SUMMER!

Well Daddy is home and it's been a busy couple of weeks for Nate catching up with him! After only staring and smiling at Robin on Skype for the past month, there was great excitement about being able to chat and 'paw' at him in person! The legs go into excitement overdrive regularly! (Nate's that is, not mine!)

Mini-me outfit from Daddy!

With Daddy en route to a Starship appointment

And since Daddy got home, we seem to have got in to a slightly better routine on managing Nate, our respective work commitments, running a household, and fitting in all of Nate's various appointments. Fingers crossed that continues! Of course, it wouldn't be at all possible without Granny, Grandaddy and Nanny Sylvie....doesn't bear thinking about really.

The house renovation is still ongoing, and a little less easy to manage along with everything else, but here's hoping we will be through all that soon. Touch wood - literally.

We have even managed to get out and do some fun stuff with Nate since Robin has been home! Check him out.....

First time at Grey Lynn Paddling Pool!

First time on a swing!

Hanging out the Grey Lynn Park!

Time for a snack!

Back at the pool, walking Mummy around!

Got my ball, and I'm not letting it go!

And we even had a play date with Nate's girlfriend from NICU - gorgeous little Mackenzie! Nate spent most of his time staring at her, while she had a play with his lovely array of toys - but eventually he made his move and grabbed her hand :-). So cute! Hopefully we see more of Taryn and Mackenzie this year!

Chilling with Mackenzie!

Nate continues to do really well. Today at 11months 2 weeks (or 10months 1week adjusted), he weighed in at 9.22kg, which is bang on the 50% percentile for his adjusted age. His length was 74cm which is a 2cm growth, and puts him slightly above the 50% percentile for length. His head continues to track just above the 91st percentile. So good growth.....but.....also some good teething going on (is teething ever really good!?!). With two bottom front teeth well out now, it looks like we have some more on their way - there is a lot of biting happening and a fair amount of drool (Nate that is, not Robin).

Developmentally, he continues to get stronger - getting on all fours and creeping are still too much of a challenge for him, but it is progressing. Loves to stand though, so really not sure if the crawling thing will be much of his gig! His latest party trick is clapping - loves to grin at Grandaddy, and clap his hands at him (although at this stage there is more similarity with a seal clapping than a person - Nate that is, not Grandaddy - but it's coming together!). Waving goodbye is also starting to feature in his repertoire. Along with a couple of new sounds emerging :-)

Peaceful moment with Mummy....

...finally she stops singing :-)

We also had a session with our Developmental Paediatrician recently - things seem really pretty promising right now. As I mentioned last time, we do expect some surgeries to come this year, but for now no real majors. We will have a spine x-ray when we are next in at Starship (March for yet another hearing test), but more just to make sure there are no signs of any spine curvatures as yet. Those are not at all uncommon with T9M, so we are keen to be on the front foot with seeing any sign - that way we can try to target the issue with physio. Anything really to avoid what is a possibility (but a small possibility) of Nate having to have yearly rod surgeries on his spine for possible scoliosis or kyphosis (yes more words we wish we didn't have to know about!). So we are pleased we will have the X-ray as a benchmark to monitor against over time.

Also this month is rare disease day - not really convinced on the word disease, in my mind its more a condition or a disorder, but nonetheless that is the term that was decided in in the UK. I also found out recently that there are more like 85 T9Ms in the world, far less than the previous 120 odd that we thought there were. Our boy just gets rarer and rarer, and more and more precious :-)

 

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