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
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