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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