May Madness with Natty Nate

Well figured it was about time that we gave another Nate Update! Time gets away a bit more on us these days, now that we have a busy little toddler hanging about :-). At 2years of age, Nate has a weight of 12.3kg and a height of 89cm, both around the 50% percentile. And now at 2years and coming up 3months of age, he seems even bigger and stronger again...here he is over the last month...

Out with M&D for a weekend play!

Our cheeky monkey!

Wanting my evening snack....

Evening wrestling with Daddy...

Medically, Nate has been doing not too badly of late, although I can appreciate that for those out there without medically fragile kids, that this might not seem like 'not too bad'. Still it's all perspective, right?!

He has had a recent surgery and overnight stay at Starship to sort his undescended testes out. While the Ministry of Health ideally likes that dealt to by age two (due to testicular cancer risks), we hadn't wanted to rush it due to the fact that it required a GA, and he has respiratory challenges that adds risk. And frankly, Mummy wasn't quite up to the concept of a GA until now. And honestly even now, I'm not really 'good' with it. However the surgery was very successful and the wound is now healing well (I'll spare you all any gory pics!).

Hanging on mummy's bed, less stressful than my hospital cot!

Unfortunately though, Nate's anxiety and unhappiness at being in hospital and being put under, not to mention seeing a bunch of doctors (strangers), was pretty full-on for him, and he wasn't the happiest camper throughout. Auntie Helen got the worst of that and we have a lot to thank her for. I think we may have to start reading hospital books and playing doctors & nurses to try to make that a bit more of a fun experience, because in reality we will be visiting many more times I'm sure.

In fact coming up soon, Nate will have to have another GA to sort out his eye cyst out. Pretty gutted that this wasn't done at the same time as the testes, but the eye doctor assured us it was just a eyelid infection and prescribed a cream instead saying that it would clear it and that he wouldn't need surgery. Well wouldn't you know it, the cream hasn't sorted it, and Nate will ultimately need another surgery. Gutted, and actually pretty pissed about the whole thing, just as I'm sure our Nate will be when he realises :-(

We also have another GA coming for a brain MRI, that can't be done at the same time as the eye surgery as would require transporting Nate across floors of Starship which is just too risky under GA. But as much as we don't want yet another GA, we definitely want the MRI. Nate has always had a big head (91st percentile at birth, which they said was his body protecting the head through pregnancy by focusing the growth there - remember Nate was IUGR at birth and only a tiny 1.58kg), but lately it has grown through the percentile lines such that it is now 51cm and on the 98th percentile. That prompts a worry as to why. I'm keen we get a read to make sure it isn't fluid building up as ultimately that can result in hydrocephalus (fluid around the brain), excess pressure, and can cause seizures and other freaky and awful things. In fact sometimes shunts are put in to drain fluid away. Let's hope it doesn't come to that, but best to be proactive and check it out. So we're on the waitlist for an appointment, which will mean another GA and overnight stay at some point soon.

We are hopeful that at the same time they do the Brain MRI, that they can also check his spine for scoliosis - not that we think he has any sign of this as yet, but it's extremely common with trisomy, and trisomy 9, so again it's one for us to watch. There are various possible treatments for scoliosis (none of which I would say are pleasant) but it requires a close watch as ultimately can put a lot of pressure on the lungs over time. Yep some scary stuff.

What else? Well that's the big stuff. We also had an ENT appointment (Ear, Nose, Throat) and that went really well. In fact, we are going to try weaning him off his ranitidine for his reflux, which will hopefully go well. We still keep his cot elevated (which is the main thing for reflux), but we are hoping we can come off all meds in time (Gaviscon Infant too). Plus we also had a brief Respiratory check-up too, and Nate will be having another sleep study in about August. Hopefully hopefully hopefully he will pass that and we can come off the Airvo machine at night. Touch wood. Nate also saw the Starship Dentist this month, just to make sure his teeth are coming in normally - so far so good, but again we are being proactive as teeth issues are not uncommon with trisomy. Phew.....and if that reads like a lot of hospital appointments in the last month, it was!

Developmentally, Nate continues to do pretty well. He continues to go to Conductive Education, Jumping Beans, and Music Therapy, once a week. He gets a lot out of all of these - here are a few snaps of him in action......

Practising stairs...

And uneven surfaces...

And obstacles...

But I do love my ducks!

And hiding things in play dough :-)

And here he is at music therapy with Helen....he loves the singing and dancing!

Front and centre with all the action!

Plus he gets many visits out and about to the park with Aunty Helen....

Speech remains Nate's biggest challenge. At 2y 2m, we really haven't progressed too much further than previous posts :-(. Not for a lack of trying on everyone's part though.....we have speech therapy weekly, we watch Bumblebee Kids Vocabularly Builder DVDs and Baby Signing Time DVDs, and we spend a lot of time modelling and repeating 1-2 word sentences, and praising any attempts at sounds. Plus he gets to spend a couple of days a week at daycare, where we are hopeful that the other little kiddies speech rubs off on him. Occasionally we do get the odd word that slips out, but it's almost as if it happens when he isn't actually trying.

I'm actually about to sign him up for a new programme called Gemiini to see if that can help. At a $100 USD a month for the subscription, I'm really not sure how we will manage it on top of all his other therapies, but we need to try. That programme features thousands of videos available on YouTube, and that focus a lot on the mouth and formation of the mouth for sounds. The idea is to play the videos over and over and over again. Like everything out there, there are no guarantees, but there are some success stories that are pretty awesome. What I would give to have our little man talk.....fingers crossed it happens for him.

Nate is continuing to go really well at daycare - he manages two days a week at present. Granny and Grandaddy drop him off at 8.30am in the morning, and the pick him up mid afternoon. He still gets upset when they leave, but is always very keen to see them when they come back - Nate happily 'chats' to Grandaddy as Grandaddy walks him back out to the car as Granny signs him out.

On the last pick-up Granny and Grandaddy managed to sneak in behind him and observe him for 20mins or so before he saw them. Pleasingly he was happy-as-larry, eating his afternoon tea with the other kiddies, and then cheekily pinching the chocolate cake off the little boy next to him's plate! Monkey! (Not sure who he gets that from?!). Fortunately he didn't get away with it, the teachers quickly whipped it back off him! He is such a big fan of the Bear Park sandpit, books, and cars, and has really settled in well there - we are so lucky to have found such an awesome place for him to be :-)

Grumpy Spider-Man impatiently waiting for use to hurry up and take him out - get your shoes on mummy!!!

Still super cute though!!

Well that's us for this update.....for those of our friends and family who are following Nate's journey, please feel free to find me on Facebook too - Jenni Ryan in Auckland, New Zealand :-)

 

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