Owen is our wonderfully happy little munchkin. He has a few battles on his hands but he doesn't let it stop him enjoying life. Owen has pulmonary hypoplasia and chronic lung disease. He was diagnosed at 10 months with a heart condition also. He struggles with severe reflux and has a lot of difficulty eating. Owen also has low muscle tone and global developmental delay which means he's doing things in his own time. We love him just the way he is. He's perfect.

Tuesday, September 2, 2014


Whoops, I forgot to write about Owen's surgery being postponed.  It was meant to be on August 22nd but had to be rescheduled for September 12th.  Unfortunately the reason is not a good one...

Owen had another barium swallow done a couple of months ago and it shows that he is refluxing really badly.  The surgeon has decided that he will need to have surgery (a nissen fundoplication) to try and stop the reflux  at the same time that he has the PEG surgery.  Basically Owen will have the top part of his stomach wrapped around his esophagus to stop his stomach contents from coming back up.   
They had to change the date of the surgery because it will now require 2 surgeons.

We've got another wee spanner in the works now too; Owen's got a cold.  Because he's high risk for an anesthetic even when he's well he wouldn't be able to have an operation when he is unwell.  So fingers and toes crossed that his cold doesn't turn into a nasty respiratory infection.

I'll post again at the time of his surgery to let you all know how he gets on (if he has it!)


Friday, June 13, 2014

You win some. You lose some.

We have had to admit defeat.
Owen is getting a feeding tube.

We've worked hard over the last 4 1/2 years to avoid it but Owen's eating problems have finally got the better of us.
We knew we were on the slippery slope last October when he started pocketing his food (holding it in his mouth rather than swallowing it).  The doctor put him onto a milk supplement called Fortini to make up for the lack of nutrition from food.  As time has gone on he has eaten less and less food.  Now we are at the point where he has one teaspoon of food per day and the rest is Fortini mixed with cream to keep his weight up.

Unfortunately there is going to be no miracle where it all clicks for Owen and he starts eating food.  

Owen is booked in to have surgery to have a PEG placed in his stomach on August 22nd.  He will most likely also have Orchiopexy surgery on his right side at the same time.

I can't lie.  We are gutted.  
We're trying to focus on the positives:
  • Owen won't have to go through the upset and trauma of eating anymore.
  • We will be able to leave the house for more than 3 hours at a time (as we won't have to rush home to have him drink his milk.  He generally will not eat or drink out of the home except at his Nana and Grandad's house).
  • Owen's nutrition will be improved.  No more cream for him.  Currently he has about 250 to 300 mls a day.  His dietitian is horrified by this :) 
  • Meal times won't take up huge amounts of time in the day.
I'm worried for him though.  The poor little man won't know whats happening to him.  It's not like I can explain to him that he is going to go to the hospital and have an operation which he will wake up after with a ruddy long tube hanging out of his stomach.  He just doesn't have the understanding yet to be able to prepare him at all.
Then of course we will have the mission of trying to stop him from pulling it out.  Owen doesn't even like having a plaster on him let alone a PEG tube hanging out from his tummy.
He's at a tricky age and stage of development to have this done.  Most children that have PEG's are little babies so they don't know any different.  Owen is at an age where he is well aware of his body and what he likes and dislikes but he is at a stage where he can't really be rationalised with.

I'm sure that in time we and he will adjust.  We always do.  I really hope that in a few months I can write a blog update saying that getting a PEG was the best thing we could have done for Owen.
Other parents at the Champion Centre whose children have PEG's have reassured us that we will be glad we've made this decision.  I'm holding on to that :)

We don't know how long Owen will have a feeding tube.  It could be only a couple of years or it could be his whole life.  I think it will be a longer length of time rather than shorter.  Owen's eating issues are very complex.
The hope is that by taking the pressure off Owen to eat, he will eventually lose some of his negative thoughts towards eating and drinking.  Then we can begin providing therapy for him; teaching him to touch food, experiment with it and hopefully one day eat it.

I can't imagine him ever putting anything to his mouth willingly.  That would be a miracle.  That's what we will hold out hope for.

Apart from all of this eating stuff that's been going on lately Owen's been doing lots of awesome things, like going on his first plane ride.  He's also been sick with a horrible cold that has lasted over 3 weeks.

I'll update again soon with all the cool antics Owen has been up to.

Wednesday, April 16, 2014

A big ol' bit of wonderfulness!

I haven't told you all about something so amazing that happened 6 weeks ago.  

Out of the blue Owen started talking!!!!!!!!!!!!
Yes, just like that he decided he would try and imitate words.

Just to put it in perspective for you, before this he was able to say "more" and "up" with prompting and that was it.  We had no idea if he would ever speak.  It was looking like quite possibly not.

One day we were just sitting around playing and I asked Owen to say "mama" and he did, then "baby" and he did!  Of course we made a big fuss clapping, which he liked, and then he decided that talking could get you lots of great applause from your audience so it was all on.

He's very much at the stage where he is copying language rather than using it spontaneously; but that is just fine by me!  I am so proud of him.

When every little milestone takes so long and involves so much hard work for Owen it is all the sweeter when it comes.  We take NOTHING for granted.

His use of language makes us chuckle a lot because he doesn't always understand questions and requests; for example when we say to him "Owen what do you want?" he says back to us "do you want".  And when we hold a tissue to his nose and tell him to blow he says "blow" instead of actually blowing.  Bless his little cotton socks, he is a delight.

Here's a wee video I took just now to try and catch him speaking.  He didn't really want to play the game he just wanted to look at the photos on the camera :)
He's got a croaky little voice at the moment cause we're both full of colds.


Tuesday, April 1, 2014

Summer Holidays

The weather this summer was a bit crummy really.  
We did strike it lucky though and got pretty good weather on both our camping trips.

We went to Okains Bay for a few days at the end of January.  This was a great place to camp with Owen.  It has a great beach with an estuary that has really safe swimming.  Owen adores swimming and playing at the beach so he had a glorious time.
Nana and Grandad came too.  Double the fun!

Owen's a good wee camper.  He likes getting away from home and trying new things now.  Who would have thought it?  Not all that long ago anything new was met with a lot of resistance.  I'm so proud of this little guy.

For our second holiday we went camping again.  This time to Kaiteriteri.  I love it up there, it's such a great spot.  We went with Nana and Grandad again and this time Owen's Aunty Judy came too; all the way from Australia!

We stopped at Maruia Falls on the way for a bit of lunch.  Owen was amazed.  I was not; the sandflys were terrible!

Hanging with Grandad and Judy in the campervan before bed time.

Owen loves a bit of nude bathing :)

 Owen had his first adventure on Grandad's boat.  He thought it was pretty cool.

I almost forgot that we had a mini holiday in-between these two as well.  
We went away for the weekend to Kaikoura with Owen's Aunty Sonnies, Uncle Bri and cuzzies James and Sid.
This holiday had been a long time coming and marked a huge milestone really.  
You see, before Owen was born, Sonya, Bri, Phil and I (and then baby Jamesy) would stay at the bach in Kaikoura all the time.  We would take Brian's boat out fishing and put the cray pots out.  When we were expecting Owen we all just presumed that we would continue this tradition and have many many weekends away together.  However, when everything changed with Owen's condition life took a sharp change of direction.  
For so long Owen was far too medically fragile to travel far from home (or a hospital).  Over the past  year his health has stabilised quite a lot; ironically though as his health improved his anxieties increased and staying in a foreign environment was just far too overwhelming for Owen.  However Owen's confidence in coping with change has just come a long in leaps and bounds in recent months.  This gave us the confidence to try a weekend away.  
It was a wonderful success and we all had a fantastic time.

Owen particularly loved being towed in the trailer on the back of the quad bike.

Owen and Sid being more than a little cute together in bed.

Tuesday, March 25, 2014

Christmas 2013

Oh my, it has been a very long time since I have updated this blog!  There's a couple of reasons; one, Owen dropped the camera back in October and we didn't get it fixed for ages and two, I never seem to find the time.

I'm determined to keep up to date with it this year though.  I love being able to look back and see Owen's life in photos and stories so it would be a shame to stop doing this blog now.

I'll skip back 3 months and show you what a lovely Christmas we had....

My sister Andrea and her family came to stay, so we had so much fun with (almost) the whole whanau.  Owen loves all his cuzzies so much.

Two days before Christmas we went with Andrea, Adam, the girls and Mum and Dad for a trip to Hanmer for the day.
Owen loves the pools.  Unfortunately I don't have any photos of the kids in the pools, just these ones having an ice cream afterwards.  

Here's Jade looking very cute!

We spent Christmas day at Mum and Dad's house.  As usual there were far too many presents and everyone got spoiled.  

 Jade looked very sweet as the Christmas angel.

The kid's table.  Check out Owen and Phil.  Like father like son!

 It was quite a nice day so the kids got to play outside with the hose  Jade and Owen are very sweet together.  It's so nice seeing them get to spend time with one another.  Living at opposite ends of the country is a real shame!

On boxing day we had 4 birthdays to celebrate!  We had a combined party for Skye's 12th birthday, Chelsey and Brenna's 8th and Jade's 2nd.   
The girls were very brave and went in Aunty Leigh-anne's pool.  Owen and I were not that silly cause it was a freezing cold day.

 They all had to warm up in the bath afterwards.  You can see Owen looking on.  He was tempted to get in but resisted the urge.  Too many girls I think :)

Andrea, Adam, Bree, Skye and Jade went home a couple of days later.  We wished they lived down here or a little bit closer at least.
Now that Owen's getting older and a bit more robust we should be able to get up to Tauranga to visit them some time.

Check back in a couple of days and hopefully (!) I will have written about our summer holidays (2 this year!).

Thursday, October 10, 2013


Happy 4th Birthday to the best son in the world!

Every year Owen's birthday sneaks up and always manages to surprise and amaze us.  We don't take one moment of this little boys life for granted and to think he is turning 4 is just a miracle really.
Owen's 4th year has been a whirlwind, full of excitement, fun, challenges and new experiences.
He's so brave, giving so many new things a try in a world that often doesn't make sense to him and doesn't always cater to him all that well.  He still gets out there and gives things a go.  He's the most inspiring person I know.

We celebrated his birthday on Sunday, in grand fashion, with a big family party at Aunty Leigh-anne and Uncle Peter's house.
There was a bouncy castle, lamb feeding and lots of fun!

Happy birthday Owen.  Mummy and Daddy couldn't be more proud to call you ours.  We love you.

And just for fun, check out how much this boy loves a bit of adventure...


Tuesday, September 3, 2013

August - And on it goes...

The continued love of riding in or on anything has continued this month.  
A very kind digger driver who was in the neighborhood noticed Owen watching in fascination as he worked and asked if he wanted to have a go.  He did!!!!!!!

Another highlight for Owen recently was having a turn in the dodgem cars with his Daddy at Chipmunks .

Owen's confidence has really grown lately.  He still may have fearful moments when he doesn't know where we are or what we are doing, but complete freak outs are few and far between now.  However this said it would seem that the museum is still a no go place.  We tried to take him last week and he just whimpered the whole time and tried to look for the door out.  I think because the Canterbury Museum is quite dark and gloomy it brings out Owen's sensory issues and scares him.  Poor baby.  We didn't stay long!
On the up side though Owen really enjoys the supermarket now.  Not all that long ago we couldn't get him out of the car to even go in.  Now this....


The highlight of Owen's month has to have been going on the Weka Pass Railway on Father's Day.  We spent a lovely day with Nana, Grandad, Aunty Leigh-anne, Uncle Peter, Chels and Brenna.
Owen just loved the train, especially riding on the open carriage with the wind in his hair!

My Mum will kill me for this photo!
Owen's love for playing at parks has increased even further this month.  He is doing some amazing things on the play equipment!
check out this video.


And some silliness :)



We spent a lovely day in the gardens on Saturday.  It's getting to the point where we often don't need to take Owen's pushchair places with us.  He managed to walk a long way around the gardens without getting too tuckered out.  Of course we had to stop lots to take a closer look at EVERYTHING.  It's just wonderful to see Owen so curious about the world.

Now that I have subjected you to a million photos I have to go and pick up Owen from Kindy, where they are having dress up day.
Owen went as a pirate...

Oh my, such a sweet boy :)

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