Time for better news

It's been such a busy few weeks for us of late with so much on our plates, but at least it feels like we are getting more sorted as each day passes.

Gorgeous in his Disney Winnie The Pooh outfit!

We are mostly looking forward to getting past all our hospital appointments, and settling into more of a rhythm with Nate's check-ups.

We don't have too many more specialist appointments this side of Christmas (mainly audiology for his hearing aid), but a couple of others to come in January and February around paediatric surgery and ENT, and probably another sleep study sometime around March or April. All of those will require hospital stints, but touch wood, that should be it until his first birthday in March. It isn't uncommon for T9Ms to require orthopaedic surgery at some point in time, but with any luck we won't have to cross that bridge, or at least not for awhile.

For now, Nate is doing well, bar a cough that has troubled him over the last week or so. We did take him to the GP, who said it was just a virus, and his lungs were clear, so he wasn't overly concerned. In fact he described Nate as 'bonny' and 'robust'. First time I've heard of a hypotonic baby called 'robust', but I'll happily take it :-)

In our most exciting news of the past week, we (Nate, Granny, Grandaddy and myself) had the pleasure of meeting Rachel Callender of the Super Power Babies Project, for Nate's photo shoot! Such an awesome experience and thankfully Nate turned on the charm for some really amazing shots!

TVNZ's 'Sunday' were also there, filming parts of Rachel's trip around NZ photographing chromo kids, and covering the SPB project itself. Janet McIntyre and cameraman Dave were watching Nate's shoot. Nate and I were also filmed discussing our experiences to date, as well as Nate's superpowers. So with any luck, Nate won't just make the SPB book, but 'Sunday' TV as well! True superhero stuff :-)

However in all the excitement of the session, we forgot to even take a SINGLE photo or video of the whole experience, for the blog!!! :-( Sorry everyone! You'll just have to take our word :-)

The book is expected to publish around July of next year, although not sure when that Sunday episode will go to air. Watch this space!

And the house continues to progress along as well...here are the shots from this week. Plus we move next week!! It's all getting a little more believable now! Next shots might even be finished ones?!

Prepping the gate / stair area

Driveway in

Stairs to come

Downstairs bathroom, tiling not yet complete

Upstairs bathroom, vanity not complete

Nate's bedroom

Light in guest bedroom

David Trubridge hall lights in, floors still to be stained

Stair feature to be done next - watch this space

Looking from hallway door into kitchen and lounges

Kitchen island still a work in progress

Kartell lights in, although still to be lowered

Lights in the formal lounge, floors still to be stained

Deck complete, fireplace & pergola still to go in

Standing where the fireplace will be

 

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A sad day in T9M world

It's a sad day in T9M world today. Little six month old baby Glasha, the Russian baby that I wrote about a few blogs back, passed away last night.

Like all T9M babies and children, Glasha faced her own set of unique challenges, as defined by where her mosaic third chromosome cells were. Unfortunately some of these were in her heart and while these would have been treatable in time, her health was recently further complicated by respiratory issues, pneumonia and other challenges. While she has been in intensive care over the past week, as well as in the thoughts of many around the world trying to help her, sadly it just wasn't enough.

Understanding the health challenges - not to mention trying to understand the Russian health system that allows only one parent a day to visit their child in intensive care, and for only ten minutes a day (as well as one which suggests that parents leave their trisomy child in hospital at birth, to be raised as a hospital child), has been hard. Some of the differences compared to what we would experience here, really are unfathomable.

Naturally her parents Olga and Ivan are distraught. As is the entire T9M global community. It cuts far too close to home for all of us - it really is heart-breaking. Tonight there are candles being lit all around the world in wee Glasha's memory, and there are many facebook posts of love and support for the family.

Our candle for Glasha

I don't really know what else to say now. It brings me to tears just thinking about her. We have lit our own candle in her memory tonight along with one of Nate's soft toys. Rest in peace little Glasha.

While it is apparent from the various Facebook groups that I follow, that some trisomy babies 'gain their angel wings' far too early, it is less common in T9M world, than in some of the other trisomy worlds. Clearly this is not the first T9M loss that the global family have faced, but it is the first for us.

On top of that shock, I am stunned by what some of the babies and parents are dealing with around the world. Like two year old Annabeth in Sacramento, who is now having her fourth brain surgery in less than a month. Or little Brianna, who after vomiting bile and having a distended belly, and who has now got gallstones. Or the wee ones who fight repeated bouts of pneumonia and seem to be in and out of hospital like yo-yo's. Or even the parents who manage their children in casts at home for six week periods at a time, while hip joints are reset to better enable their chances of walking. The mind boggles as to how these families keep things together.

It is awful to feel so incredibly sad for Olga and Ivan, and yet at the very same time feel so very relieved and so incredibly fortunate that Nate seems comparatively healthy. It is a reminder for us of just how vigilant we need to be around his health - coughs, colds, and flus - sometimes its easy to forget that he actually has this condition, and that we need to be so careful.

But even more than that, this is all just a massive reminder of how important it is to make the most of every day that we have with our gorgeous wee man. Tonight we have sung some songs, had a number of noisy chats, mum-mum-mum-mum-ed each other, showcased our raspberries, and had lots of cuddles and kisses. Love our perfect little man. X

 

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Me & my boy!

And here's some shots of Nate in action at last week's physio.....(no, he didn't get out of it just because he was in hospital!)....

Sitting practise

Working on lower back strength

And some house progress pictures to follow....hard to believe that we're moving in in less than two weeks huh?! Yeah we think so too!!

New trench being built for power, phone, gas etc

Downstairs first coat of paint, doors still to be done

Girls bathroom shower area to be waterproofed

Upstairs hallway painted

Master bedroom underway

Master bedroom window seat still to be rebuilt

Family bathroom about to be tiled

Kitchen & lounges

Formal lounge painted

Deck & fireplace area still very much a work in progress

Back yard clearing underway

But some landscaping required :-)

And to end.....a bit of a 'funny' that I recently saw on one of my facebook group pages.....what do trisomy parents see when looking at a couple of sour worm lollies?

Answer ....a pair of chromosomes! (Just missing the third one though! LOL :-)!)

 

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A 'Sleep Study' Fail

Well it's official - we just failed our second sleep study :-(.

Not a surprise this time around - so nowhere near the emotional angst that we experienced last time. In fact I remember being nearly in tears when Dad arrived at the hospital and feeling at my absolute max in terms of coping, back in July when we failed the first one.

So are we becoming more seasoned to less-than-ideal news?? Or maybe just more aware of our blessings with Nate, especially as we learn more about T9M?? Or maybe just more in control as a result of time, more sleep, more knowledge, and more support in place?? I think its probably a combination of all of that!

Anyway the little man put up with the awful process - that involves hours and hours, as well as lots of gunk and electrodes all over him - like an absolute trooper. (I think he gets that from me! :-) LOL!).

Nate and Nanny Sylvie

Wired up for the night!

So after three days and two nights in hospital, we are now back home! Yay!

Back home on Cpap again, but still home (refer to the July blog 'The Check Ups Begin', for more info on Cpap). It's still very disappointing that we need it - but comparing the results of the overnight sleep study with a night on Cpap, the benefits to Nate are very clear. No de-saturations lower than 89% and an average of 98%, after experiencing one within his sleep study that was as low as 68% and one that was less than 88% for a period of 18seconds. So it's a no-brainer really. Lets just hope that he accepts it better than last time - the fun and games begin!!!

First night back on Cpap in Starship

We really want to thank our wonderful Granny, Grandaddy, and also our marvellous Nanny Sylvie - who took care of Nate in hospital during the days. We really could not have managed without them and are so lucky, lucky, lucky to have that support. Nate's face just lights up when he sees them, and is so comforting to know that he has 'Team Nate' looking after him and rooting for him :-). The Ward 26B team - who Nate loves to flirt with every time one of them comes into his room to check on him - were also just awesome. So big thanks all round!

Robin took the first night with the sleep study itself, and I had the second night as we re-introduced cpap. I suspect though that we probably had the easy shifts, as those hospital days can be very very very long with a baby. Check out the awesome sketch of Nate by Nanny Sylvie when they managed to finally get him settled and asleep one day - talk about talent - we really lucked out with a nanny-extroadinare! (And no, none of you other Mums are allowed to poach her!!)

Beautiful Nate - by Nanny Sylvie

So only two more hospital appointments to go......this week!

They ('they' being those who have been there, done that) say that the first year is the worst as you go through appointment after appointment of medical checks. Apparently it all settles down once you know what you're dealing with, so here's hoping we're well on our way to that stage!

Nate & Sophie practising raspberries :-)

 

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