Blog shifting to Facebook

Hi everyone!

Thanks so much for sharing in our blog updates, tracking the life journey of our gorgeous little Nate Star Superhero. Nate is nearly four years old now, would you believe!?! We can't quite believe how quickly the time has passed.

It's been nearly four years filled with some very crazy times captured in our blog updates! Lots of medical and developmental challenges and lots and lots and lots of appointments (not to mention, highly emotional times), which is pretty much what as you'd expect when parenting a child with an extremely rare and life-limiting genetic condition (Trisomy 9 Mosaic), and which unfortunately won't be stopping anytime soon either (translation, ever!).

But at the same time, it has also been filled with lots and lots and lots of amazing, joyful and fun times. While Nate is without doubt significantly impacted by his diagnosis and will continue to be so, he has already surpassed what many doctors suggest isn't possible for a trisomy child - he walks, runs and jumps (still working on a hop, that requires more core and leg strength than he has right now), he can feed himself, sleeps unaided without cpap support, and is learning to communicate more and more everyday (in Nate style anyway). He is a cheeky little man who loves to play, to wrestle with his Daddy, to play hide and seek, loves his cars and trains (anything with wheels really), the alphabet and sing-alongs, he adores his hugs with Mummy, is always super-pleased to see his Granny and Grandaddy, loves to hang out with Nanny Helen, and is SO EXCITED whenever his gorgeous older sisters Mia and Ruby are around to play ball with, or trains, or play dough, or whatever else he decides they all need to do! Cue a lot of squealing and quivering (Nate's that is!). Oh yes and he LOVES his ipad, ice cream, and his Kinder Surprises! Put simply, our boy is a total delight and we simply couldn't adore him more :-).

And now of course Nate has a new baby sister Lola, and our lives have got a whole lot busier again :-).

Lola is a typical baby, loves her food, enjoys attention, is very very very alert and delights in being smiley, loud, and sassy! At about four months she was rolling, and now at nearly six months she is even sitting briefly on her own. She adores her play mat and toys, her jolly jumper, and her bouncer. Health-wise, she has grown incredibly well inspite of her ongoing reflux, and now demands solids at least twice a day, and most recently, has just cut her first tooth! She loves to watch her big brother Nate and her eyes follow him almost constantly when he is nearby. Nate is super-cute with her, frequently giving her cuddles and forehead-kisses, although he isn't so keen on her touching him and often removes her hand and gently pushes it back at her! Maybe once she passes the grabbing and pinching phase, that will change?! Unfortunately unlike Nate, Lola isn't so keen on her sleep though, particularly at night. I blame that on her night-owl father LOL! So as she nears six months of age, we find ourselves completely shattered, in need of a jolly-good nap, and ever hopeful she'll one day sleep through the night (or even just 5-6hours of it :-|!)

Anyhow...the reason for this update, is that with everything we have on (and I'm not even back at work yet) it's proving rather hard to keep our blog updated! The admin alone for Nate is pretty full-on, and therapy requirements just add another whole layer of super important but time-sucking appointments, add on the care of a infant, and time is SHORT! However we don't want to stop updating about Nate - having our blog is important to share news with all of our families overseas and for our own personal memories, but also to remind ourselves in tougher times, just how well our little superstar has done. I also know that it has given other new T9M families hope in those awful first few months post diagnosis, so we really want to keep that up - after all it's very rare, and good news stories are hard to find about it on the Internet. We think we can make things a little easier by shifting his updates to a Facebook page and just updating in little bursts as and when things happen.

Unfortunately I know that not all of our family and friends are on Facebook (why?!), but I'm hoping we can make it easy for you to find through the link below. For those that are, just 'like/follow' us!

https://m.facebook.com/natestar.superhero.t9m/

I'm really hoping that those of you who are interested (family and strangers alike) will still continue to follow our beautiful boy Nate's progression and to support us with that - we really really do value and appreciate it :-)

Below is the link to my Facebook page too - for known family and friends, please feel free to 'friend me', then you will also see other shots of our boy Nate and sister Lola, as well as other family news and events.

https://www.facebook.com/jenni.ryan.54

Lots of love,

Jen & Robin

X

 

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Working on Nate's social anxiety with lots of outings

Over the last month or so, I've been trying to get Nate out to new places in an attempt to help him with his anxiety by experiencing new places and people. We tend to do about one a week, although sometimes we have managed two.

On another post you can see our zoo trip with Bear Park, which was followed up the next day with a birthday party for a friend Oliver at Chipmunks - both went really well, and Nate was a super-star!

Other times we have been to Chipmunks, Bounce & Beyond, and Takapuna playground and we have plans to try the museum, Motat, and also Kiwi Valley Farm. These ones seem to go okay as Nate can see it's about fun, and so participates. Could be interesting as we try other new things where he might not understand the 'fun' to be had! But got to be good for him :-)

Here are some of the recent shots from Chipmunks....

Click here to see Nate on the big slide....... http://www.youtube.com/watch?v=whiONB-ocxk

And some from Bounce and Beyond.....

Fluffy and treat after a play at Takapuna playground.....

And here he is at the very busy Special Childrens Christmas Party....I had been worried about how he would cope with the crowds of people, but we made sure we got there super early so we were first in line to most things as I really don't think he'd understand the waiting your turn concept yet. He loved the police cars (signs 'please' and 'car' because he can't really hear the difference between 'please' and 'police'!), and also the bee. For those of you on Facebook, you can see the video of him dancing with the bee, so cute!! Such a great event, and he came away with some treasures...couple of wooden cars, two new books, a toy drum kit, bubbles, a large soft toy reindeer, and goodies to eat! Very generous event and awesome for special kids like Nate.

Click on the link here to see Nate on action......... Dancing with the Bee

 

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Painting and PlayBall at Bear Park

Two great updates from Bear park about our boy this week - we really are lucky to have him with such an amazing team of teachers who clearly adore him. Here he is working on his fine motor and muscle tone to build strength by painting (strengthens his hands, arms, and shoulders), although drawing circles continues to escape him, and also his physical skills and balance and co-ordination with PlayBall. Love our little man....

Thursday the 8th of December.....painting a Christmas picture..

Friday the 9th December......

Congratulations Nate! You have had such an amazing day today! You won the Playball medal and you were also the kaiāwhina this afternoon!

Have fun sharing your medal with all of your family over the weekend! Even though you weren't too fussed on wearing the medal, you were pretty excited to receive it and show everyone!

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Nate's development - an update

Developmentally we haven't seen much more progress over the last little while...

• Nate continues to strengthen physically, although he is still pretty unbalanced and uncoordinated when he is running. While he loves to try to hop, it is only possible when he holds into a wall or furniture - and even then he can't quite hop up in the air as yet - that takes a fair bit of muscle tone and co-ordination, but it's super cute to watch him try!
• He has yet to toilet train, or to even understand the sensory component of toileting so we are likely a ways off that. He is also unable to fully undress or dress himself, although he does endeavour to help and can take his pants off by himself.
• His eating has improved and his diet has widened a bit (bacon, hash browns, spinach smoothies, baked beans, spaghetti, chicken nuggets, vege chips etc), and he likes to feed himself and be independent. He has yet to master a fork, but copes well with a spoon and a cup with a lid on it.
• He has yet to master circle-drawing (which is needed as part of pre-writing development), so we have more work to do to build up his finger and hand strength, as well as his shoulders.
• Speech wise we haven't progressed much beyond our existing words, although he is getting a LOT better at using his core board so that might eventually be our best communication route. He attends both speech and music therapy as well as watches Gemiini, and we remain hopeful that that will come over time.

Having said all that, he has done so much better already than we ever thought possible upon his diagnosis. Certainly our regular therapy sessions at home and with therapists (speech and music, as well as a group music class), our day-trips out and about to new places (see other blog posts for those) which are designed to help him overcome his behavioural anxiety, and his weekly time at daycare to practise engaging and interacting with other kids, as well as lots of routine and repetition, is definitely benefiting him (and us!).

We really are so proud of him, even though we know that we have a very long way to go and likely some incredibly challenging times ahead of us. I do try to avoid thinking too much about how he will cope with school - while it's still a ways off, and developmentally he may make some leaps and bounds before then - at this point I can't even begin to fathom how he will cope especially as it is highly unlikely he would be given any one-to-one support. That's pretty tough when you have a child who can't toilet, or even use a fork, let alone one that can't speak, or follow instructions or social norms easily :-(. I'll be honest I'm not feeling good about the reality facing us.

Anyway all of that said...let's remember what he can do! He is a great little sleeper and has good bed habits evening and morning (cue, doesn't wake his parents up in the middle of the night (unless sick!)), he adores his little sister and gives her 'Nate kisses' on a regular basis, he loves to wrestle and play fight his Daddy, he is a pro on a playground, and a real delight to be around. We love that he is so happy :-)

He has been super busy around the home a lot of late - helping Grandaddy and Daddy outside with the deck cleaning, and (sort of) helping inside with the laundry. Well helping as in sitting in the laundry basket and pretending it's a car while the laundry is being folded. Talented chappie!

 

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Bear Park Birthday / Christmas Party

Bear Park recently held an evening celebration for their Birthday at the zoo. It was held on a Friday night from 5pm after the zoo closed to the public, and tickets were sold to students and their families from all the Auckland Bear Parks. I was a little nervous about taking Nate as his anxiety can be a challenge at times and that could have meant that no sooner do we get there than we would have to turn around and head home again. Especially when it was after one of his days at school, and he typically comes home from those shattered from all the sensory input.

But in this case, I needn't have worried - he was super excited when we arrived, and particularly when he saw one of his teachers near the front gate (Hayley), followed up by the Bear Park bear who he was particularly excited about! Our daycare's picnic location was right by the play ground which suited Nate perfectly with great access to the slide :-). Nate had a ball, and even posed for some photos with another favourite teacher (Laura). A great night and a lot of fun to be able to participate and be part of.....

 

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