Saturday, October 18, 2014

The boys hang out for 10days, sans Mummy!

In October, I went to San Francisco and London for ten days for work - which is my first extended time away from Nate. Needless to say I was a little apprehensive about going. Here are some of the shots of us at the park, a few days before I flew out.....
Having fun on the see-saw!

I wasn't so much worried about how everyone would cope with looking after Nate without me - we do have a great team around Nate with Granny and Grandaddy, and Aunty Helen, and our boy is very well cared for. But I was worried about the small possibility of Nate getting sick. Even a simple bug has a much greater risk of putting him in hospital (much more than it would a typical kid), and in fact each time he has caught something, we have ended up in Starship or at least in A&E :-(. At only 19months old and with a rare genetic condition and associated airway challenges, any bug carries extra risk for Nate. I really didn't fancy being in the other side of the world should he be even remotely sick.....but fortunately it wasn't a problem, Nate was 100% fine :-).

And actually so was I - Robin, Granny and Aunty Helen sent me lots of updates on wee Nate, and we skyped a lot - so I never really felt that far away. In fact, Mummy coped remarkably well being away from her boys!! Here are a couple of pics of some of the more exciting highlights of that trip......

Trying Google Glass out
Cycling around Google campus :-)
Catching up for dinner with my bros in London!

Health-wise and developmental-wise, Nate has continued to do well over the last month. Physically he weighed in at 10.96kg at his 18m2w weigh-in, which isn't bad considering he was sick the week prior. His length is 82cm, and his head circumference 49.3cm. He continues to track at about the 50% percentile for height and weight versus typical kids, which is awesome (the exception being his head which continues on the 91st percentile - not sure he will ever grow into that!). I think I have mentioned that T9Ms tend to be smaller of stature, which can impact development of their physical milestones, so keeping him bang on average has many benefits and we're thrilled he's holding on the curve! He's eating well too, a much better appetite :-)

Plus this month, we finally got our first hearing aid - you might see it in some of the shots below (it's a bright blue unit, with a orange cord attaching it to his clothes (just in case he gets tempted to ditch it!), and sits behind his right ear). No issues with him wearing it so far, in fact he actually seems to like it....so it must be helping.

He also has continued to gain confidence with his physical and fine motor skills, but our key area of focus now is very much with speech, especially now that he has the hearing aid. He understands some makaton signs (like yes, bye, no, up, more, nappy, bottle, eat, drink, bed, book, finish, dummy), and actually can make a couple of signs himself, like nappy and bye. However his actual speech remains very limited, although we do get 'round and round', 'more', 'duck', and sometimes 'up'.

We are working with a private speech therapist as regularly as we can manage, to try to help this develop. Lots of repetition and single words are the focus around here! Hopefully we see this pay off....from what we can see around the world, some T9Ms can speak fairly well, while others use makaton sign quite extensively instead, and a few remain non-verbal using only limited sign or pictures to communicate from. Touch wood we see the former with Nate.....

Here are some shots of him enjoying one of his favourite places in the world.....the local park :-)

At the park, rocking the Adidas
At the park with Daddy, when Mummy away
And out at Jumping Beans....
Playing with Mummy's shoe while she's away
At home in his tent

Practising his drawing at home
Resting in the evening, with the Wiggles
Nap time with Monet (for about 5seconds I would think!)

And to finish, a shot of our little man, looking less than happy - while he doesn't speak, he can surely communicate how he is feeling when he's tired! But even when he is grumpy, he's adorable :-)

 

 

 

 

Saturday, September 6, 2014

Grandaddy's 70th, plus a few pics & videos

Here are some recent pics of our little man in work out action - over the last few weeks, his physical development has been going gang-busters!!!

At the park with Mummy & Daddy
Loving the swings!


Loving his time at Jumping Beans....

'Playing' with Ildi at conductive education.....

Must learn to look where I'm going!!
Bubbles!
Learning to kick!


Hanging out at the weekend with the folks at a food court playground....

Wearing his new backpack at home to help him develop his balance.....

Here he is out at a local pub for lunch celebrating Grandaddy's 70th birthday with Granny & Grandaddy, Chris & Norm, and good friends Toni & Gary....

Having cuddles with Aunty Helen....

And hanging out in the evenings with Daddy.... Playing chase! Lots of squealing!

Finally, our favourite....ring a ring a roses.....too cute :-)

Looking trendy......snazzy jeans and top.....even with holes in his slippers :-)

 

Finding needles in haystacks

For those interested, here are a few videos and articles I have come across lately (so if you're looking for pics only, skip this blog update!)

The first is a lovely positive one about a UK get together of the T9M families. There are now four T9Ms in NZ - an approx 3.5year old, an approx 2.5year old, Nate at 17m, and an approx 4m old baby. Three girls, and one boy. One day soon we hope to have our own gathering, hopefully later this year when summer rolls around with its warmer weather. Amazing to think there are 4 in NZ alone, given the odds of having a T9M (based on current known numbers worldwide), are actually one in a hundred million....

UK T9M Families unite

The next two are quite interesting articles about latest research into detecting trisomies. Gradually doctors are learning more and more - although frankly it really can be like a needle in a haystack - as you can see from these......

Latest research into advancing trisomy detection

Amazing story of a family fighting a one of a kind disease

Some may find the rest of these a little harder to read - they can be quite confronting (well they are for us), about the path ahead and the realities of life with genetic conditions. I see this everyday in the various Facebook groups I belong to, and while it's really comforting to have those support groups, it is also challenging to see and think of the possible path ahead, both medically and developmentally.

One of our biggest fears is what happens for Nate when he is older (given that we ourselves are older) - who cares for him, and how on earth do we fund that when we aren't here. Esp when there is some evidence of a Trisomy 9 person at age 65years (see below) - on the one hand, that is just so pleasing and hopeful, and on the other, also somewhat worrying! There are many parents with special needs kiddos sharing that exact same concern for the future - in fact beyond the biggest fear, which is of course around their health, the medical unknown, and the risk to life - it's the next major concern for parents, and it can all be pretty tough stuff to deal with.

One UK 14year olds story with a rare chromo disorder

One wee boys very rare genetic disorder

Evidence of a 65year old Trisomy 9

It can be really hard not to fret about the future, and to live in the moment and enjoy our wee man, but we try really hard to. That is something that being part of the Super Power Baby Project has really taught us - and the recent, and hugely sad, loss of one of the SPBabies has only emphasised the importance of that even more. So who knows exactly what our journey will be, but we hope daily for miracles, and at this point we seem to be remarkably blessed with what we've had to deal with.

More recently I have read some articles that I think sum up very well how we can feel at times, as we balance the highs and lows of this journey, but also show that time does help things.....sure it never goes away, but the pain and the grief does ease.

Dear Newly Inducted Special Needs Parent

Special Needs Parenting, what dies and what is born

There are of course lots of articles giving support and advice for families too, albeit more so globally than locally. It's stuff that we may well need in time, but at this point we're just picking what works for us, and mucking on through it kiwi style! I'm including the links now as who knows, might help someone :-)

Advice on dealing with a rare chromo disorder

Healing for caregivers