A non-event becomes a little event

Well after all that build up for ENT exploratory surgery, it was all to no avail! We had a call from both Nate's ENT doctor and his Respiratory doctor late on the Monday afternoon (the day before the surgery), to say that after further review, they were now thinking it would be best to wait another three months before proceeding.

There were two reasons for this - firstly, they now felt the sleep apnea issue was primarily to do with a central issue over an obstructive airway issue, and that we needed to give the caffeine more time to address this before investigating from an Ear, Nose, Throat (ENT) perspective, and secondly, they wanted him to be a little older/bigger before having a general anaesthetic.

Entertaining Granny

That event now ruled out, we then set about enjoying the last week of Jen's maternity leave - sorting some things on the house build (all fun stuff, like picking lights, ordering carpet, adding a skylight etc), spending lots of time doing Nate's physio, and generally taking things easy!

Unfortunately......Nate then got ill on the Thursday morning. He threw up while at our Developmental Playgroup, and within an hour had a high temperature, and was generally a very unhappy camper. That prompted a quick visit Thursday lunchtime to the GP, and then a referral onto Starship A&E in the early afternoon.

We were then kept in hospital overnight on Thursday and Friday, where Nate was treated for a urinary tract infection (UTI) with some strong antibiotics. Thankfully he started to make a quick recovery even after the first lot of antibiotics, and so then proceeded to entertain the nurses for the next day or so :-).

Check out the YouTube video below!

By Saturday early afternoon, we were finally released to go home. What a relief! Nate was well over that hospital room and completely out of his feeding/sleeping routine. His folks were pretty over the whole thing too, quite frankly. Hospital stays with a six month old are not for the faint hearted :-(.

But other than some pretty strong antibiotics - and some VERY unpleasant nappies for the next six days as a result - Nate has bounced back really well.

Here's hoping that this doesn't become one of Nate's issues (recurrent UTIs that is, oh and also unpleasant nappies!), although I guess in the scheme of potential issues he might face, it could be a lot worse!

Anyway, he was soon back to his old self - chatting up a storm, and more interested in his feeding again :-).

Nate & Nanny Sylvie

Unfortunately those few 'off' days meant that for his 26.5week weigh-in, he only gained 160g over the two week period, now weighing in at 6.4kg. That's less than half his previous fortnight weight gain. His length was up from 60cm to 64cm though, since the prior four week measurement.

Hopefully we can get some good growth in the next two weeks, especially now that he is taking more solids. Check him out with Nanny Sylvie - loves his veges but we're still working on the cereal!

 

 

We had a good week on the physio front - perhaps because he got three days off to rest!

On Mondays, Nate attends Carlson School's free 'Early Smiles' programme with Granny and Nanny Sylvie. At Early Smiles he gets the benefit of a quality hour with both a physical therapist and a speech therapist. They do a routine that is a mix of physio for his gross and fine motor skills, singing, reading, and lots of face time.

Chatting to his own photo, while SITTING!

The repetitive nature of it, means that Nate is starting to remember and recognise the routine, and is making great progress with it. Here he is with Nanny Sylvie, sitting with support, but smiling and chatting to his own picture!

The next two pictures show Nate having further physical therapy during this past week.

Mirror? I'd rather look at the car!

He doesn't always look this strong (his tone can change from day to day), but it's a BIG improvement on where he has been! We've very proud of how hard he tries :-).

Finally we also had Nate's first Needs Assessment with the Taikura Trust, having been referred by our Developmental Paediatrician Dr Rosie Marks.

Jess Jamieson, our Palliative Care Social Worker, kindly sat in with me as I answered a series of questions about Nate's health and diagnosis. It is always quite difficult emotionally, both having to relive the last 27weeks, but also having to discuss current and future concerns. Jess makes it a lot more bearable!

We will now await their response as to whether Nate qualifies for further Carer Support, but I hold little hope that this will be approved, at least at this stage. While they recognise NOW that Nate has a significant disability - one that will definitely result in a delay (known as Global Development Delay or GDD) that will becomes more and more apparent over time - they won't look to offer any support until these medical and developmental issues are actually more visible.

Gorgeous Nate!

I find it somewhat ironic that while his diagnosis is openly acknowledged, the wheels on the bus won't engage until he falls FURTHER off the developmental curve. It's not an approach that I'd call proactive?! Still one hopes that that will change in time........

Final news on our front, is that I returned to work this past week. Thankfully I've had no concerns of Nate's welfare during the day with both Nanny Sylvie, and Granny and Grandaddy committed to our wee boy! In fact when I get home at night, he's like 'who are you?!''. A very happy little camper indeed!

And it's been really good for me to re-engage the brain on a work front. Not only does it help one keep a more healthy (and less consuming) perspective with all that has happened with us, but it's something that I enjoy and have missed.

Many mums of 'special needs' bubs experience a great amount of anxiety around whether to return to work or not - is it best for their child or not? However at the end of the day, it's a very personal decision that really I don't think anyone can understand (or judge), until they step into those shoes themselves. For me, the decision not only provides emotional and mental well-being for me, it also affords us the opportunity to provide Nate with support and therapies that would not be feasible otherwise. Ultimately I feel it's the best opportunity for Nate :-).

To finish off this week's post, I've added a shot of me and our wee man. We have plans to get some professional shots of him done soon, it's just a question of squeezing that in!

I have also included a snippet of Daddy reading to Nate earlier today. Nate loves story time and gets VERY vocal! Especially when he knows the story - in this one, he is building up to his favourite bit (rather impatiently!). Enjoy!

Me and my AWESOME little man :-)

 

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