A long blog!

Busy month, so excuse the multi-topic update! Firstly, here are the official Super Power Baby photographs from Nate's photo shoot back last year. Cute!! Not sure which will go in the book, which is due out in around July of this year.

It's also been a busy few weeks on the Nate front - the hospital and therapy appointments have picked up pace again. Two weeks ago we had a Paediatric Surgery appointment at Starship. And last week we had CDT Speech, and Conductive Education. This week we have had an ENT appointment, and we have a Developmental Paediatrician appointment to come this Friday. We also had a District Nurse check-in, as well as CDT Physio, and Conductive Education x 2.

Our ENT appointment was just a general three month check-in to see how Nate is doing (which is well). ENT work closely with the Respiratory team, as Nate's apnea is thought to be both obstructive and central related (hence the Cpap). So at some stage before Nate is two, he will undergo exploratory surgery to try to determine the obstruction and remove/deal with it. He will probably need his adenoids and tonsils out too. Given that he will have a general anaesthetic when they do this, we are also hopeful that they can do his next brain MRI at the same stage - then he is only under once. I imagine they will start to talk to us more about this towards the end of the year. No rush. We are not keen on the whole general anaesthetic thing!

Our paediatric surgery appointment was similar, in that at some stage within the next year they will look to correct his undescended testes. This isn't uncommon with premature babies either. It doesn't seem to be too big of a deal - its just a day surgery with no overnighter required. So no biggie and pretty straight forward, and just something we will need to fit into his year planner.

Anna our District Nurse popped by today too - Nate now weighs in at 8.84kg, which is pretty much bang-on the 50th percentile for his adjusted age (9months, 1week). His length is 72cm, which is now about the 50th percentile too, and his head still sits bang on the 91st percentile. His non-adjusted age is 10months, 3weeks. We now need to move him to more finger foods and more textured solids, given that we don't think there is any aspiration going on at all.

So what's helping him gain such good weight - well those of you who know me, know that I rarely cook - why compete with Robin, when my skills lie more with the cleaning?! But for the Boo-Boo, I make an exception! Check out Nate's freezer drawer below.....all homemade! I kid you not!! (The other freezer drawers are of course mostly empty, although the wine fridge is well stocked :-)).

Developmentally Nate has had a good month, having learnt to hold his sitting position. However the hard work has to continue to keep him progressing - our focus now is on teaching him to transition to and from sitting, getting up onto all fours which is very hard for him, and sitting with his legs straight out in front of him. With me being on annual leave the last two weeks, we have slotted in more Conductive Education sessions around his other hospital appointments - makes for a busy week though! Here he is in action below....

Hanging out with Gabi

A few people have asked me recently, what we have to pay for and what support we actually qualify for. We pay for Conductive Education which is something Nate attends weekly, and has helped him considerably. It pushes him physically but also cognitively. He also attends private physio once a fortnight with Deb, which is really beneficial in terms of developing his strength, stretching him, while also giving us things to work on with him. Shortly Nate will start private speech too, and possibly will require private occupational therapy assistance too in the months to come.

We do get some assistance for free though, or rather courtesy of our taxes :-). This includes the fantastic weekly Early Smiles class for Cerebral Palsy kids that Nate can attend up until he is three years old (not that Nate has CP, but his hypotonia or weak muscles has some similarities, so its still very helpful for us). Nate also has support from the government-funded Child Development Team (CDT) for physio and speech, although this is less regular and is not a structured proactive development programme, more around working with observations or issues noted within the child as they develop.

And of course there is us (Robin and I, Granny and Grandaddy, Mia and Ruby, and Sylvie) who work with Nate daily to help develop him - free naturally! :-). Here are some videos of him 'at developmental play' at home....

Modelling one of Great Auntie Paula and Uncle Les' suits

My sister Mia really likes my toys!

Nate and I also spent a few days at Waiheke with Granny and Grandaddy, while the floors were being addressed. Unfortunately this timed with Nate's worst spell of teething and cpap rebellion, in addition to very wet and windy weather. So it wasn't exactly a restful summer break, but just lovely to be away and have support and help in managing Nate. Here's a pic of Nate in Grandaddy's fishing cap.....no fishing on this trip though :-(.

Not overly impressed with this cap!

Nate and I also enjoyed the company of the girls a couple of weekends while Robin was away. The girls are always great at playing with Nate and helping out. Funny how the household chores mount up with a baby in the mix :-). Last weekend we had to spend a whole day out of the house while the flooring guys were staining the floors again - hard to keep a baby away from his cot ALL DAY! However we filled in the day with breakfast out with the girls, and some good quality retail therapy in the afternoon :-). I guess Nate may as well get used to that with the girls around!

Hanging with my sisters, just missing my own MacBook :-)

Still this red ring is pretty good :-)

And news on the house front - progress but less visible progress, as its now more the finishing touches that are being worked through. Inside the floors have been re-stained darker which is looking much better, but the stairs are still to be done so that will mean another day or two out of the house while they sort that. Interior painting has continued too, although there are still a few places that need sorting with that.

The outside has seen more progress, with exterior painting progressing, gates being made, and planter boxes worked on. Hopefully the planter box walls will get sorted next week along with the front gate and letter box area. (Although filling them with plants will probably take us a bit longer!)

Side of the house, decking leading around to the pergola area

Porch still a work in progress

Master bedroom window seat progressing

And for a close-out shot for today - he is the BooBoo having morning cuddles and giggles with Mummy :-). The little man will be SO excited to see his Daddy, with Robin getting back from the UK TOMORROW!!!! It has been a tough month all round, so it will be really good to have us all back together again. It will also be good to plan our special dinner or lunch, in honour of Grandad Roy.

Finally I also just want to say thank you for the lovely supportive emails that we get after the blog updates, and also from people we have lost touch with over time but who reach out when they hear about Nate. I am sorry it takes me awhile to get back on each one, but they are really really appreciated thank you. Also a few people have asked why no one posts comments in the blog itself?! I'm really not sure why, but I'm guessing you're either shy or that very few people actually read our blog! But comments welcomed if inclined!

Nate Ryan-Chang 10.5months (or 9months adjusted)

 

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Sad times

On Tuesday the 14th of January, Robin's Dad Roy (Nate's UK-based Grandad) sadly passed away. Roy had been diagnosed some time back with prostate cancer and more recently with bone cancer, and after many months of treatment, recently lost his fight.

Robin has been over in the UK since the 31st of December, and was able to spend a couple of weeks with Roy, helping in tending to Roy's care at Lise and Patrick's house (Robin's sister and brother in law), where Roy was visited and supported by the wider family on a daily basis.

It is an incredibly sad time for everyone, but especially for Robin, and his sister and brother, and their families. But thankfully, Roy is now at least out of pain, and at peace. Later this week (Friday the 24th of January), the celebration of Roy's life - and the amazingly loving and generous family man that he was - will take place back in Woking.

It is extremely upsetting for us that we never had the opportunity to introduce Nate and Roy in person. Had Nate's health not been as it is, we would have taken him back to the UK last year. Had Roy's health not been as it was, the same could have applied.

We are also saddened that a man who should have played such an important role in Nate's early years (after all, who doesn't remember holidays and Christmases with their grandad?), wont be able to, at least not in the typical sense. This is especially sad given that Roy was such a family man, and a fabulous Dad and Grandad, and he would have delighted in doing that.

However in typically generous Chang fashion, Roy and the family have asked for those that are wishing to send flowers to the funeral, to instead consider a donation to Nate's ongoing medical, and physical, occupational and speech therapy costs, associated with his Trisomy 9 Mosaic (T9M) condition.

So, in his own special way, Nate's Grandad will continue to play a key role in helping Nate achieve the best that he can be, inspite of the challenges that he has ahead of him. Our role will of course be to ensure that he 'knows' his Grandad Roy, and how very much he was loved by him.

Today's blog is dedicated to Roy Chang, Nate's Grandad. Below are some photos of Roy, as well as a short update on Nate and some of his photos and videos from the last twenty days.

Roy and Robin

Grandad with the girls on Waiheke

Man about the world

Nate has continued to make some fantastic leaps and bounds, and we are heartened by his current rate of progress. Long may that continue - he might be delayed, but he surely is a determined wee chappie! He also has what seems to be a plethora of teeth coming through, so the last few days and nights have been very gummy and quite sleepless (especially for Mummy!). Pamol is our new friend right now!

Our gorgeous little Viking (outfit courtesy of Jesper and Natalia)

A new year begins

And so 2014 begins! The last few months have flown by with just so much to work through, lots to do, and many, many balls in the air. Really hoping that this is now the start of a much quieter year - on all fronts, but especially for the Nate-star. He continues to do really well, and we're hoping that the next few rounds of hospital appointments follow the same trend. Here are some more shots of him from over the Christmas / New Year period.....

I like to stand (and hold court at the same time!)

Playing with Donald

Having a giggle with Mummy

Flying my plane with some backwards stepping

Current favourite toy - spins and makes (repetitive) noises :-)

His big reveal after a game of his favourite, 'where's Nate'!

Here are some promised photos of the house progress, although everything has pretty much stopped with the Christmas / New Year break. We are hoping that the rest can be completed throughout January, although the list of things for the builders/tradesman to complete, still feels pretty long. We also haven't really begun to unpack much beyond the kitchen - everything is still pretty much in the garage (as you can see from the below photo) - because the internal painting is not complete enough yet for us to move things into wardrobes and storage cupboards etc. So it's still a little bit like camping, albeit glamour-camping with a fully spec'ed kitchen and bathroom :-)

New pergola up, still to be painted properly, fireplace still to go in

Looking back towards the house

Looking around the side

Formal lounge area with a fair bit still to do!

Kitchen is all in, and gorgeous

Looking down the hallway

The garage, and this isn't even the half of it!

And the piece de resistance...check out Nate-star's room!

Nate-star's completed digs :-)........

...where lets hope he sleeps peacefully!

New Year's Eve was a quiet night for us all. Nate, the girls and I shared some take-out, and then a New Year toast with Mum and Dad later in the evening. Robin was on a plane en route to the UK to see his father who is very unwell, and he arrived there New Year's Eve UK-time. The original plan was for Robin to be away from the 7th till the 31st, but this has been brought forward with Robin now away until the 23rd of January. It's fantastic that Robin is now over there with his Dad and his family, although challenging with his Dad being so terribly unwell.

A shot with Daddy before he flew out

Sending him on his way

With Mia (Dad, you better grow some more!)

Nate-star hanging out with the gramps at the house. Doesn't look too worried without Daddy around yet, but it's early days!!

Morning cuddles with Mummy

Daddy sent across a shot of him as a wee one. Check out the baggy pants :-). I think Nate-star will 'out-cool' Daddy in the style front, but i must admit Daddy was a cutie!

Daddy also sent an mpeg of Nate's other Grandad (Robin's Dad, Roy) back in the UK. Here he is in action back in September 2013, doing what he loves. A very talented man. Wish we had the opportunity for Nate and Roy to easily meet, but instead he gives Grandad his gummy smiles over Skype :-)

January the 9th has just past, and Nate is now ten months old (eight and a half corrected). In fact, we'll soon need to start planning his first birthday party :-). We'll probably opt for a little bit more fanfare than my recent 40th (which came at a bad time on the renovation front), but was a lovely evening shared with my folks, Grandy, Chris and Norm, and Mike and Claire.

Developmentally Nate is doing really well. He continues to get stronger, and while delayed, is progressing nicely. His latest trick is a spot of sitting :-). It's short durations at this stage, and he can't transition himself to or from this position as yet, but we are sure he soon will!

Nate-star's new trick!

Nate now has two teeth on their way through, and he weighs in at 8.44kg (roughly around the 40% percentile), with a length of 71.5cm (roughly the 60% percentile), and a head circumference of 46.5cm (the 90% percentile), so he is slowly growing into his larger head :-)

Here are some of our more recent video's of him in action......

Me and my BooBoo :-)

 

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