With Every Beat Of Her Heart -CHD Awareness Week 2015

In Honour of my Beautiful Katie, who fights Complex CHD with every single beat of her Heart,  I am Supporting International CHD (Congenital Heart Disease/Defects) Awareness Week.IMG_7960 copy

 I thought I would start with sharing some Facts about CHD that you may not know, and let you know some ways you can support the Thousands of children and families who battle CHD in Australia and around the world. During next week, I will share with you our store, Katies story and my Story as her Mumma.

BUT for now here are some facts you may or may not of known about CHD.

  • Eight babies are born with a heart defect in Australia every day. That is almost 3,000 every year!
  • Childhood heart disease is one of the biggest killers of children under the age of one.
  • Approx half of children diagnosed with heart disease require surgery to correct the defect.
  • Each week more than 4 Australians pass away as a result of a congenital heart defect.
  • It is estimated that 32,000 children (under 18 years of age) are currently living with CHD in Australia.
  • Some children acquire heart conditions during childhood, e.g. cardiomyopathy, Kawasaki disease or as a result of rheumatic fever.
  • A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is prevalent in many communities.

YOU CAN HELP

You can help raise much needed Awareness, & Funds for family support, also funds that enable more research into the causes along with a cure for CHD by supporting fundraising events like Sweetheart Day

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Many other business’s across Australia are also supporting Heart kids across Australia.

Take Care, and remember LIFE is Precious.

Nicki

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What’s it like to live in Cape York series – The Fishing

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Yeah, I know you want to know about the fishing! everyone who knows anything about Cape York asks about the fishing LOL.

I am not really that keen on fishing(shock horror!!), but my husband is so I am going off the knowledge I have gained from him.

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THE FISHING IS EVERYTHING YOU HAVE HEARD AND MORE

A BOAT IS ALMOST A MUST, Sure you can fish from the Wharf here but honestly its very seasonal and you have to pray that the fish decide to come swimming by.

CROCODILES LIVE HERE, If I had a dollar for every time visitors here have asked me if the Crocs are really everywhere here I would be a Millionaire.

READ THIS, WE SEE CROCS EVERY TIME WE FISH, if you can see them you can bet that there are 5 you have not seen.

BE CROC WISE Just be SMART,

  • DO NOT CLEAN fish in water ways,
  • DO NOT DUMP your old bait near ramps,
  • DO NOT hang over the edges of your boat,
  • DO NOT fight a Croc for a fish (yes people actually do this and we have heard of people having them land in their boats chasing the fish)…….give it to him/her by cutting the line,
  • KEEP CHILDREN & DOGS away from the edges of the BOAT out of the water when loading and unloading boats.
  • DO NOT SWIM in the waters here, EVEN if you see locals doing it, they have lived in and around this water for generations, they know the tides, the best times to swim and the best seasons.
  • DO NOT underestimate how fast, inquisitive and cheeky these amazing creatures are. Just this weekend my hubby nearly had one land in his boat jumping for the bait board attached to his boat! True story!!

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SO the FISHING IS AWESOME, YOU NEED A BOAT & the CROCODILES live here, but here is a tip your likely not going to get from a lot of travel blogs.

This is a beautiful place, it has many attractions but this land is Traditionally owned and managed Lands, The Traditional Owners love their homelands and have lived one with the lands for thousands of years, they are happy for you to visit but PLEASE respect this place, PLEASE ASK before driving or boating in areas off the regular creeks and roads, If your not sure you should be in a location PLEASE ask someone who lives here.

Its very simple you just need to ASK, do not presume. The local community here has many Scared/Historic sites or a area could be closed off due to the loss of a Elder or Community member and you will offend if you enter that area. JUST ASK AND BE RESPECTFUL,

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Now back to fishing, I know nothing about what bait to use (we use live bait and squid the most so that might help), and I know nothing about what tides to fish in, but the Bait and Tackle shop can help you out, I will link their Facebook page here so you can find them.

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OH and if you like to eat Muddies we have them too

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it truly is a beautiful place to live and visit……even if you don’t fish

Be Safe

and Remember life is precious

CHD Sucks!

CHD Sucks!

Long time readers of my blog will know that my daughter Katie has a Complex CHD (Congenital Heart Disease).

Katie was born with a complex condition called Tricuspid Atresia which caused HRHS (Hypoplastic Right Heart Syndrome) it’s caused when the tricuspid valve is either not formed or fails to grow correctly, which then causes the right ventricle of the heart to not form properly or not grow at all.

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Babies born with this condition need a series of life prolonging surgeries (HRHS can’t bee corrected or fixed). These surgeries collectively are called The Fontan.

While the above is a very basic description of Katie’s condition it’s really all that you need to know to read this post. Even to this day I still struggle to understand all the complexities of her condition, most average parents do.

Anyway, one of the side affects of the life prolonging surgeries is that some children develop rhythm issues in their hearts. Their little hearts have undergone at least 3, if not more major heart surgeries and its creates scaring on the heart. These scares can interfere with the electrical systems of the heart and cause long-term issues with the functioning of the Fontan and the surviving Left Ventricle Some times this happens right away, sometimes it happens due to growth of the heart and sometimes they do not really know why.

Over the past few years we have had what most call a dream run with Miss Katie’s health, it’s the kinda like almost too good of a run……the kind that keeps CHD Mummas on the edge and thinking can this be real…..(other CHD Mummas will get this!).

Then Miss Katie had her routine 6 monthly appointment with her Cardiologist in August last year, he noticed a few changes on her ECG, and he suggested she have a 24 hour Holter Monitor test done.

The Holter Monitor in is a mini ECG monitor that is connected to you for 24 hours, while you go about your normal activity and it records what your heart does in that 24 hours, its then taken back to the hospital and analysed.

She had that done and we returned home, and heard nothing. We knew the Cardiologist was away for extended leave but presumed we would get a call from our local GP if anything was wrong.

One thing I should have learnt by now as a CHD Mumma is that you never presume anything.

Lets just say that on return from his leave our Cardiologist found a report on his desk and called us to say things are not okay……..

CHD SUCKS, it really does.

It kicks you in the stomach, it knocks the wind out of your lungs and as a mother it NEVER EVER gets any easier to hear that your child is not doing okay.

Miss Katie has some issues going on, we are not really sure how bad, her Cardiologist is fairly new to us, I can’t read him like I could Miss Katie’s old one, the amazing Dr J who had been with us from the minute we decided to make her our daughter……He stood alongside us for a long hard journey and he was very up front, very honest and very practical and I liked that. Our new guy is good, I just haven’t learnt to read him and I think he is having issues understanding me. I need up front, honest…..don’t sugar coat it, don’t think you have to protect me…….I need it real so I can deal with it.

Being called at home by your Childs Cardiologist always fills me with fear, but this time is took the wind out of me…I had stupidly thought everything was okay when we heard nothing……..Our good run health wise had come to an end.

As I mentioned Miss Katie has several issues going on and although we do not know how bad at present, we know that when your Cardiologist says “plan on a week stay in the city” it’s never good……..or maybe I am just preparing for the worst, maybe after all these years, I am losing my ability to look on the bright side, maybe I am just real, maybe I am broken by CHD……who knows

………..but I have this sinking feeling and I am rarely wrong, don’t get me wrong I want to want to be wrong………but CHD SUCKS, its evil, it takes our babies, our children, our sisters, our brothers, our aunts and uncles, its takes our friends……. and it’s hard to shake that feeling of dread that comes with “plan on a weeks stay” because that often times means 2 or 3 weeks, it often means issues, big issues…….I really hope I am wrong, I hope CHD proves me wrong for once.

I am trying to be positive, Please pray for us, please pray that CHD will lose again and that she will smack it down and keep moving forward. Miss Katie is such a fighter, she has won the battle with CHD so many times…….she is my joy, my precious beautiful girl and I need her to win.

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What’s Remote Living really like?

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I get asked this question a lot, so I thought I would start a series on my blog about what its really like to live in a remote community.

I will share a piece of our life every week, you will get a glimpse of the funny, frustrating and to be transparent, the not so great things about living in a remote community.

IMG_4927This week I am going to share just how remote we live:

So when I say we live remote, people often do not really get that I mean “REMOTE”. I will get comments like “Oh I used to live remote, I had to drive 2 or 3 hours to the City” erhhh NO thats not remote that is living in the Country.

WE really do live in a remote community. We live at the very tip of Australia, you can’t go any closer to PNG without heading out to The Torres Strait Islands. Our community is roughly 1000km by road( or the Track as we call it) from a Major City/Town, this Road Track is usually not drivable for about 4-5 months of the year due to the wet season which for the NO Tropical Living Aussies is December -March.

When we can’t get in and out by Road, we fly!

Above is our current Airline, a Charter service being paid for by the government because our long standing airline went into receivership.

This is our life line at this time of the year, and for people needing to see Dr in the City all year, so losing our Airline has NOT been a fun time for anyone here.

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Over the last 2 years, Our kids have got some serious Frequent flyer miles up. We fly a few times a year to Cairns and once or twice to Brisbane to visit family.

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YES that is my 3 year old reading the safety card, she does it every time we get on a Qantas flight LOL.

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Flying isn’t much fun anymore, we are all kinda over it, but its just part of living here on the Cape so you just learn to deal with it.

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I guess one perk is; not many people these days can say they have sat and watched the controls on their plane as it lands.

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Be safe,

Nicki

Sarah’s Tribute

I have been honored to follow the blog of Nora Rose, a precious baby girl born with a very rare condition, she and her family have been an amazing joy to get to know over the last 2 years, via the amazing blog posts her Mum Aleisa shared with us all via her blog “I will Carry you”

Last week Nora passed from this world to the next surrounded by her loving family, I can’t tell you how much I have enjoyed this precious babies updates, sharing in the joy that was her life.

We will all miss her so dearly, we will miss her Nor Nor updates, the joy and love her family shared with us, the witness they all are.

This was Nora Rose’s Aunties tribute to Nora at her Funeral service, I think its speaks volumes of the joy and love she brought to everyone she touched.

Rest in peace precious Nora Rose

Sarah's Tribute.

Hugs your babies close,

Nicki

My Little Blog

Yeap I am neglecting this little blog again and really have no excuses.
Recently I have recently found out that a few people have learn’t alot about Cape York though this blog and even followed us before they moved here. I have to admit I was kinda excited to know anyone is following here on my Little Blog…….let alone that I helped in some small way to make their transition easier.

So because of that I thought I would try my hardest to update here on a more regular basis. I really had no idea people would want to hear about our everyday.

Also if there is anything you would like to know about, PLEASE let me know by sending me email or go over to the facebook page and I will to my best to do a blog post about it.

Keep Safe and Love every day
Nicki