And it's birthday time again!

So my main mischief maker is turning 8 today!

8 years ago today – 22 Jan – it was a public holiday here in Wellington in New Zealand. I should probably be thankful because I got the registrar on call instead of the OB who was determined, whatever the cost, to prolong the pg – even though I was clearly becoming sicker and sicker.

In the end the on-call specialist decided that with markedly hyperactive, a big BP jump despite the fact it wasn’t high high, the swelling I had and other signs – that in fact I did have pre-e, that my kidneys and liver were starting to fail despite the standard blood tests still being okay – and that I needed another emergency c-section.

N arrived at 8:29pm at 36 + 3 days and weighing 5lb 12 oz and wound up doing 3 ½ days in the NICU and most of that on CPAP.

He did battle with reflux, eating problems, failure to thrive and some developmental delay.

He’s had at least 2 good dices with death – when he was 6 months old and had a really bad bout of croup and chest infection. He was in the ICU and nearly had to be vented. They said when we brought him in he was indrawing so badly that his breastbone was touching his spine. He was so exhausted but would not give in, relax or sleep – he was totally focussed on breathing and staying alive! He had 8 days in hospital and 6 of them on oxygen.

Then when he was 3 he slipped off a rail he’d been swinging on and fell about 4 ft – head first onto concrete. When I rolled him over there was a dent in his forehead but that soon rose into a massive egg! Despite getting the all clear from the GP that afternoon he slipped into a delayed concussion that night and was so unconscious that even the ambulance officers couldn’t wake him. He came round in the ambulance and stunned the docs at the hospital by announcing that his name was N (full name) and his birthday was in January!

He had a lucky escape that time – although suffered double vision, headaches and forgetting well known words (like colours) for about 3 months after the fall.

These days – he is an amazing kid, amazing great and amazing frustrating!

Reflux was finally resolved when he was nearly 7 with a nissen although we still struggle greatly with eating and weight gain.

His ADHD was diagnosed at about 6 ½ and medication has made a big difference to him and all our daily lives although we still struggle with behavioural aspects.

As I said to P a few weeks ago N is one of those people with the strength, energy, drive, determination, intelligence, inquiry – and impulsivity – to change the world we live in. He is going to be a mastermind evil genius or one of those figures who stride across the world stage in some form or other. We unleashed him on the world so it’s our job now to leash him in just enough to keep him on the good side! It’s going to be a bumpy ride – but boy, you can never say life with N is boring!!

Wheeeee woooooo

Yes, that's right! T has loved emergency vehicles since he was tiny (alright then, tinier!)

As the day of his operation is coming closer and we're all suddenly realising what he won't be able to do for a while afterwards - eat his beloved brownies, eat his hehe ray ray (- what he calls cornflakes because of course it's not a kangaroo on the packet but a DOG silly!), jump on the new trampoline, play in his sandpit (sand in healing incisions...don't think so!) or even be too easily transportable - we decided to try and pack in some fun things for him now.

P sings with someone who is also a volunteer fire fighter and had said a number of times that we should organise a time for us to bring the boys down to the station - so we did it this Saturday.

He showed them round all the different compartments and what all the things do. Unsurprisingly N was taken with the tool called a Hoolahan (named after the man who invented it) but they all call it a Hooligan tool - axe/crowbar/metal rod/whatever other wrecking tool you can name! N's eyes lit up at the idea of being ALLOWED to wreck things - a career plan change might be happening for him, especially when he discovered that so long as you are strong enough to carry the gear there is no height or weight restriction for entry into the Fire Brigade here.

They got to get the hoses out and even spray a little. W got really into that...T did the typical thing you see with little kids and garden hoses, right up to the face and then started to fiddle with the triggewr part - that was before he flicked the switches and let them play...

They saw the gear they'd need to use if our hillside went up in flames as well.

Then they got to go inside and try on some of the gear - W had a ball in a helmet and coat carrying round a hose to show that he could take the weight. N nearly dropped an oxygen cylinder!
T looked fantastic in a proper helmet (he'd insisted on wearing his toy one to the station) but declared the boots "too big Mummy!"

Due to N's interest we learnt how the radio works and the different stations called out for different events.

Then we went for a ride! Sadly he wasn't allowed to use lights or sirens because he wasn't on an official job but did let off a whoop as we pulled up outside the station.

He showed us how sprinkler systems work and the benefits and negatives of smoke detectors.

We were there for about 90mins and the boys all had a fantastic time!

I managed to take a number of good photos and have edited and printed them already and put them in T's photo album of current or important events to show people as a talking springboard. He'll thrust them under the nose of anyone prepared to stand still for a minute!

So hopefully when all the post op restrictions come into play he'll have some cool things to look back on - it's only 21 days away now!

Welcome 2009!

And a Happy New Year to you all!

Wishing health, happiness, wealth and gee - let's go all out and wish for world peace while we're at it too :-)

As I went to bed on New Year's Eve I pondered what the new year will bring us.

As I said to P - we know some of the challenges ahead - and we know some of the joys too - one of my sisters is getting married this year and the way it's worked out only I will be going as it's in England but it'll be only my 3rd break on my own since having W. The first was accompanying my mother for moral support while my father had surgery, the second was a Parent to Parent break weekend which was unfortunately the day after I dislocated my shoulder so I didn't really appreciate it as much as I could have done!

T's surgery and learning to eat are a big challenge, like many these days we're facing some big financial challenges.

P's still having random rashes, foot pains etc after the nail incident last year - and we really need to get to the bottom of that one too.

We are working on behaviour modification for N, and scarily I'm going to have to start reading up on Asperger's teens as W is clearly heading that way and already struggling a bit.
Hopefully Tau Toko (an organisation which helped us so very much when the AS was first diagnosed) will be able to help us out soon again - been on that waiting list for nearly a year now.

Anyway, since we have officially ended the holiday period - or what I called the "No number days" when I was little, I want to wish people a good new year with as few big surprises as possible!

Explaination - No number days were the days between Christmas Day (which everyone knows is the 25th!) and my birthday on the 4th of Jan. Those days were always so laid back and relaxed and no one ever seemed to look at the calender that for a while I actually thought those days didn't have dates to them, we just floated seamlessly along in summer relaxation.
Of course it all ended on the 4th because we can't lose track of a birthday now can we??!! :-)

We have a surgery date for T!!!

T is having his reflux surgery on the 3rd of Feb 2009!

When we turned up at the surgeon’s appointment his opening statement was – So you’re here for the surgery then? Guess so, Then I want to place a gastrostomy as well! So he will get the feeding tube or g-tube.

Talk about blow you away! P was settling the older two so wasn’t even in the room for that exchange!

T has dropped below the 3^rd centile on the charts – so seriously Failure To Thrive. Depending on what chart you look at he’s actually now on the 1^st centile. He gained 500g once the Polycal was added but hasn’t gained since and basically he doesn’t eat or drink enough to sustain himself and thrive.

So he is simply surviving on artificial calories, added vitamins, iron etc and huge efforts every day.

The operation will temporarily reduce the size of his stomach so that’ll affect his intake, he’s only able to have liquids for 6 weeks post op and so affect his weight dramatically – and then we have to work with all the learned behaviour of eating hurts so you don’t do that!

We’re still struggling daily with N on that front and our experience with W is that this is not a quick behaviour to break – W took 2 years to be able to eat enough to do without high calorie formulas. So T is in for the long haul here – and the tube will be there until he can do it himself.

The game plan is to do overnight pumped feeds so that he has the opportunity to get hungry and want to eat during the day – but with the safety net of being able to pump in all he needs over night. As I understand it, the process of weaning off tube feeds is that he has to be able to eat enough to continue to gain even through sickness – or at least he doesn’t lose ground then and is able, once well, to resume normal eating! As he improves his daytime eating we can reduce the amount he gets overnight.

I’m mentally planning for this to take about a year – working on the older two’s performance! He may astound us all and be done quickly but it certainly won’t be a couple of months – 6 probably minimum (with essentially two taken up on liquid only diet so you can’t start working on solids!).

Apparently the ‘button’ they put in is pretty much flat to the skin and just has a top you open to give feeds – the pictures I’ve seen look rather like the valve on a blow up ball! So it shouldn’t actually stop him doing any normal activities, incl swimming and gymnastics if he wants.

So we’ve been scrabbling round to find out about pumps, tubing, syringes etc and finding out who you are supposed to ask to organise it! Thanks to people going on holiday around this time (and now having 3 weeks annual leave) time’s incredibly short to actually get it sorted before surgery. What we can’t sort now will largely have to wait until the week before surgery!

So it’s all a bit scary really – having been decided so quickly in the end – although being in the wind for ages. I really thought we were just going to be stuck in this awful situation for ever. So I’m trying really hard to see this as big progress for T, his wellbeing and development – but it does feel rather like I’ve failed in one of the most essential tasks of parenting – you can’t get feeding on a much more artificial basis really!

But, if we’re going to put T through this we have to use it to the best possible ends for him and make the absolute most of the situation – I can tell you he’s not having it out only to have to put it back it – it’s going to wait until we haven’t used it for a bit first!!

Huge decision made and I only hope to God it’s the right one. But it was first suggested in Feb this year so been delayed, and P is now convinced it’s the right move, which he wasn’t 5-6 months ago so that’s all important to. Life shouldn’t change too radically in day to day terms and only get better for T. He might even have enough energy to go to Kindy!

I do feel bad about taking this option – the maybe if I’d tried this, done that, given it a bit longer – keeps coming at me. But, also although I’m relieved, I know the war is far from over and we still have a long way to go – but at least Thomas will be safe now.

And although it’s taken a year to get to this point, at least P is now confident that this is the right thing to do for T. He wasn’t before and it’s important we take this huge step together.

He was playing it down the other day – “just a little surgery” etc and I pointed out this is actually a huge step. We’re not just doing major surgery and messing with his anatomy like we did with N, but we’re also leaving something IN THERE! He’s going to be fed in about the most artificial way I can think of!

It’s a hard decision really – but I’m pulling myself together again and getting my head round it I think. It’ll be hard again when the equipment arrives, and of course the day of surgery. But at least he’s had an anaesthetic before with his gastroscope so I know he’ll do okay with that. Although that was 10 mins under or so and this is nearly 3 hours!

Just back from the dietician who has hooked us up with the community nurses and said as soon as he is home from hospital she’ll email with a feeding plan. She wants continuous feeding of 1000 – 2000mls a day! T drinks a max of 700mls total on an exceptionally good day! But she says she’ll work with what T and I feel comfortable with. Certainly I’d expected continuous feeds for a while post op – but the volume!! However his height is between the 5^th and 10^th centiles and weight below the 3^rd so she says we need to get weight on him as a top priority. She also acknowledged his long history of reflux, pain and eating problems – about $%#$%ing time!!

So pump hire and training is pretty much booked for the end of Jan, the dietician’s on the game plan, we’ve met the homecare nurse, the surgeon and hospital’s booked for 3 Feb. We’re getting the Infinity pump which everyone says is the best, it’s summer so we don’t have to worry too much about tube access through t-shirt and shorts – that’ll be a problem for later…

So as P said, time to sit back for a bit and enjoy Christmas!

Merry Christmas Everyone!

Update Soon

I am around and will update on the boys soon - lots happening and we even have a date for T's surgery and an end to the feeding nightmare!

Maybe the begining of the End?

It's been a while since I posted but we were waiting for appointments to filter through the system...
N saw the feeding therapist and ate everything in sight just fine. She said she'd write up the appointment but nothing's come through .
Who knows where we're going to with him!
I just want to get him to the 10th centile and leave him alone! He was happy and healthy on the 10th so why can't he be there? Trying to get him on to the 50th is just going drive us all nuts!

We're trying to work on his behaviour and supposedly still juggling meds but somehow we fell through the cracks and he got discharged and transferred without us knowing or the GP knowing!

We're sort of getting that sorted - I'll know what's happening on Monday afternoon.

I was going to post on T's appointment this afternoon but N is being impossible and W has just had another dizzy spell - maybe NOT the begining of the end after all!?

As happy as a sand boy...

T, like most kids, likes to dig...
Our old house had a huge section and we allocated an area where the boys could dig to their hearts' content - we did that after W got into digging and the lawn looked we'd been attacked by moles - there are no moles in New Zealand!!!

The house we moved into last year is mostly concrete with some small pebble gardens, and yes, we have had pebble fights! They, oddly enough, stopped when I decided that the boys had to pick up every single pebble which was over the path - after spending most of a day picking things up several times over they decided pebble fights weren't THAT much fun :-)

We're trying to grow some plants and veggies in the little garden we have here and T has got into the spirit...sort of...
I eventually threw out the poor plant after T had dug it up 6 times and we'd replanted it 5!

So before we launched into our veggie garden we decided it'd be best for the plants if T had somewhere appropriate to dig. We are now proud owners of our first sandpit! And T is as happy as the proverbial sandboy :-)
He has learnt not to rub your eyes when your hands are covered in sand - only did that once!
But what is interesting is the way his brothers are very happy to play with him in the pit, separately often as they aren't quite as keen as T for his 2 hour + sessions in the pit!
T can now happily say 'sandpit!' and is very amused to see 'sandpit' in the bottom of the bath after his sessions...
It's great to see him happily doing something so normal!