tag:blogger.com,1999:blog-11164899459802825962024-03-13T15:44:14.216+10:00Saving JulesI decided to create 'Saving Jules' in the hopes that other parents will chance upon my blog and discover others on the same journey they are, with a diagnosis of Idiopathic Pulmonary Arterial Hypertension. Yes, we face every day with the knowledge that this may be Julian's last, but what a journey we are on with him!Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-1116489945980282596.post-35327603522301505312015-11-22T18:39:00.001+10:002015-11-22T18:48:31.686+10:00Just Breathe<div class="separator" style="clear: both; text-align: center;">
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<br />
<br />
I'm not sure what words will describe how I'm feeling right now, but I did feel the need to get all this out, even if it is extremely personal. Actually, I do know what words will work. I just can't repeat them in polite company.<br />
<br />
I have found it harder and harder to hold on to my emotions these past few weeks. I'm sure Jules can see the worry in my eyes whenever he gets out of breath, despite my best intentions to hide it from him. I'm trying desperately to stay calm when he collapses to the floor, resorting to pathetic jokes about how out of shape I am while I put my arms around him from behind and help him to stand up.<br />
<br />
When I think about what's coming up, my heart races. I feel sick. My hands tremble. So does my chin. Hell, my whole body does. My throat gets tight and starts to ache. But I grit my teeth and swallow it all back down. <br />
<br />
Because Will and I only cry when Julian's gone to bed. He's not supposed to be our rock, and he's not supposed to see our tears. We can't put that responsibility on him.<br />
<br />
Dammit. It's not fair. <br />
<br />
A few months ago, while Julian & Will were in New Zealand - thanks to the generosity of a number of people - we found out that there were a few locals getting quite nasty about us because we had started a GoFundMe page for Julian to travel to New Zealand. To fulfill his big dream before starting 'Veletri'. One of the things that was said was that we "always had our hands out, just because we had a 'sick' child". There's a long story behind that. I won't bore you with the details though. <br />
<br />
If only. If only he was just 'sick'. I would do anything for just 'sick', instead of terminal 'terminal' and 'incurable'.<br />
<br />
You know, on a day to day basis I can usually ignore the fact that my son is dying, bit by bit. One heartbeat at a time. Most days, it's easy. Julian looks 'fine'. He's got great colour. He growing so tall, and his feet are bigger than his Dad's! He's funny, he's a ratbag, he's so much fun to be around.<br />
<br />
And then, out of nowhere, he goes pale. He struggles to breath. His heart pounds so hard that it vibrates the sleeve of my own shirt when I put my hand on his chest to check his heart rate. His heart races so fast I can't keep count of the beats. He collapses to the floor and can't get up without help.<br />
<br />
He wakes up out of breath.<br />
<br />
I'm just happy he wakes up.<br />
<br />Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-37413471294728992112015-11-18T13:45:00.000+10:002015-11-18T13:45:08.654+10:00Jules has gone purple! <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1JU6oS_vqHxmipnhYRQF06OHGGI-3ylWDW5VgCUUjM0JoxNGP0fyThTs074knBN5rllTPhyKuXaUrBMIaJhYTJCKWtW156vPsqOTtsFJI5-fJ18lBu28VuOHx9EMXiMUlhJWGiTELy_c/s1600/12241454_562153397267117_7094807413954945456_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1JU6oS_vqHxmipnhYRQF06OHGGI-3ylWDW5VgCUUjM0JoxNGP0fyThTs074knBN5rllTPhyKuXaUrBMIaJhYTJCKWtW156vPsqOTtsFJI5-fJ18lBu28VuOHx9EMXiMUlhJWGiTELy_c/s320/12241454_562153397267117_7094807413954945456_n.jpg" width="240" /></a></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
Why? Because it's Pulmonary Hypertension Awareness Month!</div>
<div style="text-align: center;">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhceNu4iQqbtbu1gSNn79LVmlz62fpuL8rN1jCPBZ53hWYDOonl8C-fqHmpTszkGCJfaHbl3pNfJDmDS9Vl7atfutDo5alq5Qd_jcd2NSn30BZm2-EWLkvqxllji6s9vQ-58PAOuB-JMEo/s1600/12247001_562153383933785_2300579850024217834_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhceNu4iQqbtbu1gSNn79LVmlz62fpuL8rN1jCPBZ53hWYDOonl8C-fqHmpTszkGCJfaHbl3pNfJDmDS9Vl7atfutDo5alq5Qd_jcd2NSn30BZm2-EWLkvqxllji6s9vQ-58PAOuB-JMEo/s320/12247001_562153383933785_2300579850024217834_n.jpg" width="240" /></a></div>
<br /><br />
11.5 years ago, my husband and I were told this strapping young man (who is turning 15 next week) only had between 2 - 5 years to live when he was diagnosed with IPAH at just 3.5 years old. He continues to fight with everything he has, so what else can we do as his parents but fight with and for him too? Julian is an awesome - although somewhat irritating at times - big brother to his 2 little brothers and his little sister. <br /><br />He is a ratbag, he is hilarious, and he - like every other teenager his age - is trying to figure out where he stands in this world. <br /><br />He is my hero.<br /><br /><br />
<br />
<br />
Next Thursday, on the 26th November, he will be going in to the Lady Cilento Children's Hospital to have a PICC (Peripherally Inserted Central Catheter) line put in. He'll be coming home that day so he can spend his birthday - 27th of November - at home. On the 30th November, he will be admitted to the LCCH for 2 - 2.5 weeks to go on a medication called 'Veletri', which is administered through the PICC line via a 24hour pump. My husband and I have to learn how to mix his medication, change the medication cassettes, change lines, change dressings, not to mention learn and understand all about this new medication. Can you believe we have to buy a cupboard to put all his medication, lines, dressings, etc in???? We will be away from our other 3 children for this time, and my MIL will be staying with them so they can finish off their school year without too much disruption. Thankfully, they go to an awesome primary school with awesome staff and teachers!<br /><br />So, can I ask you all to 'Like' & 'Share' my Facebook page - <a href="https://www.facebook.com/SavingJules/" target="_blank">Saving Jules</a> - to help us to raise awareness of this terrible condition. Follow Julian's journey with IPAH and have a bit of a laugh at his antics. You'll be amazed at how he faces each day.Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-70128406852791531512015-10-09T10:45:00.000+10:002015-10-09T10:45:59.048+10:00Straw ChallengeI read about this great idea to help people understand how Julian
feels each day, so I would like to present a challenge to you all!<br />
<br />
I
would like you to take a straw and breathe through it for a few minutes.
You might think, oh that's easy! But it's not. Keep going. Little
bit more. Little bit more. Are you starting to struggle? Are you
breathless, do you feel an ache starting in your chest, even your
stomach?<br />
<br />
This is how Julian, and other PH, PAH & IPAH sufferers
feel. Every. Single. Day. No break.<br />
<br />
Now, take the straw out of your
mouth. Feel a bit of relief? Unfortunately, Julian never gets to feel
that, never gets a break from breathlessness. It's just a matter of
how breathless he is, not if he is or isn't.<br />
<br />
Let me know how you go!Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-61610152744999861002015-09-19T12:31:00.001+10:002015-09-19T12:31:12.544+10:00Brave Warrior12 months ago, the world lost a star that shone so bright that in the time we all took to shelter our eyes from his brilliance, he was called home to the Angels.<br />
<br />
On the 19th September 2014, at just 4 years of age, little Talon lost his battle with Idiopathic Pulmonary Arterial Hypertension.<br />
<br />
I am sitting here in my lounge room, trying desperate to think of the right words to honour his memory, and it's hard. How can I explain to you all the connection I saw between Julian and Talon? How proud I felt watching my own 14 year old son finally find his own personal hero in a little boy 10 years younger than him?<br />
<br />
Should I tell you about the first time I attempted to chat with this shy little human, and how I had to resort to bribery in the form of chocolate brownies? Should I tell you how he looked at his Mum and Dad as if to say "Who on earth is this woman? And can I have a brownie?"<br />
<br />
Should I tell you about the too short amount of time Jules and Talon visited in the hospital, when they were both admitted on the same ward? And how Talon finally came out of his shell when Julian found a way to connect with him? Card tricks. Clearly my brownies stood no chance again the magic of my own son!<br />
<br />
Should I tell you how Julian's attention transformed from a shy little boy to a chatterbox? How I felt a lump in my throat when he started to show me his fire truck? How proud I was as a mother when I watched Julian teach him how to grit his teeth and growl "Just do it!" when the nurses had to do a blood test? The connection I felt with his own Mum, while we watched our soldiers, both big and small, grinning at each other with the same glee only boys can grin with? You know that cheeky grin I'm talking about.<br />
<br />
Should I tell you how Talon's favourite nurse is Julian's favourite nurse?<br />
<br />
Or should I tell you how my chest went cold and my heart stopped for a while, only to start pounding so hard I could hear it's echo in my ears when I read the devastating news that Talon had lost his battle, that his too small body had let go of this life?<br />
<br />
I'm finding it so hard to find the right words to tell you all how it made me feel to watch him, in that short amount of time, fight with all his heart. He was such a brave boy and an enormous inspiration to Julian, who said to me when we left the hospital "Mum, he's my hero. He's so brave. I've never met anyone like him, I can't wait to watch him grow up. He reminds me of me at that age."<br />
<br />
Talon, thank you. Thank you for opening your heart to Julian. Thank you for your friendship with him. Thank you for being fascinated by Julian's card tricks. Thank you for helping Julian to remember why he fights IPAH every day.<br />
<br />
Thank you for the smile that reached your eyes, lit up the room and brought an answering smile to everyone's lips.<br />
<br />
Thank you for showing us what it means to be brave and fight on even when we're too tired to join the battle over and over again. Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-53767969275392579102015-07-04T15:04:00.001+10:002015-07-04T15:04:09.248+10:00A Message From Jules<!--[if gte mso 9]><xml>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPCJAE6SMwSssplht0sBIMWnWIALAWHPj1M8HozgXwo-33i0MEw530esHz23RpelyVhaQe28e5S47q79KiV3z5HGZuNX8RREVWnmLnHZaT-RutLLORuLAyJgJngo16zCTUjEUlEAdIMSY/s1600/IMG_6060.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPCJAE6SMwSssplht0sBIMWnWIALAWHPj1M8HozgXwo-33i0MEw530esHz23RpelyVhaQe28e5S47q79KiV3z5HGZuNX8RREVWnmLnHZaT-RutLLORuLAyJgJngo16zCTUjEUlEAdIMSY/s320/IMG_6060.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My younger siblings and I</td></tr>
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<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">I am feeling shocked. Well, to be honest, I am feeling
like any teenager right now, with all these emotions raging inside me. But most
of all I was feeling shocked. Here, let me tell you why.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">Last Thursday (25<sup>th</sup> June) I was at my
eight-weekly clinic appointment (or check-up, whatever you want to call it) and
I was bored <i style="mso-bidi-font-style: normal;">out of my mind</i>. It was
literally one of the most boring days of my life. When I was talking to
friends, or seeing one of the doctors, that, was different. I had something to
do. Even though it is tiring and tedious talking to cardiologists and physios
and psychiatrists and cardiac fellows, etc. It gives me something to do. But,
when we’re just sitting there, doing nothing but <i style="mso-bidi-font-style: normal;">waiting</i>…. Ugh. Talk about not having anything to do. And then, when
I go to make a cup of tea for mum, I get told off, getting told that “us
children aren’t allowed in there”. Being one to respect older people (in most
cases) I walked out and left it alone. That didn’t mean I wasn’t just a little
ticked off though. </span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">Anyway, while I was waiting for my final appointment, I
sat in a beanbag (well, more like lay in my beanbag) wondering about what I was
going to do when I got home, when I fell asleep for about two hours. Although
we thought that my final appointment – the one with all my doctors – would be
at either 1:00 or 2:00, I ended up waking up at about 4:00 for the appointment.
Go figure.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">I
walked into the consultation room, still dozy and groggy from sleep, expecting
the normal brief about how my INR has been going, keep doing my regular
exercise, blah blah blah. What I did most definitely not expect was for my
cardiologist – Dr. W – to tell Mum and I that I was going to have to be put on
a new medication called Prostacyclin (Veletri). If you aren’t familiar with
this medication, let me tell you about it. Basically, this medication will hopefully
make me the healthiest I have ever been, along with the added bonus of making
me feel a whole lot better. But, like any good thing, it comes with a price.
Basically, this medication being given to me is </span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">“Like
a doctor telling a paraplegic that his legs are cured but he still can’t walk
for the rest of his life”<span style="mso-spacerun: yes;"> </span>– Will (Dad) Forester, a couple of days ago.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">So,
basically, I won’t be able to do most of the stuff I can do right now. Things
such as:</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Rollercoasters</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Water
Slides</span></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Swimming</span></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Kicking
a soccer ball around</span></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">And
more.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Which
is honestly going to drive me absolutely crazy over the next couple of years,
or until the oral medication comes out. But that’s OK! This will give me way
more time to practice my hobby. Shhhh, my hobby is a secret. No-one shall know.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">The
way I felt when I was told that I’d have to start Prostacyclin was a very
strange feeling. Because I had been told in the past that it was only a
medication to be used as a last resort, I was furious. So very, very angry.
But, then, there was the feeling of excitement. The feeling that said to me
that maybe – just maybe – things would go upwards for a change.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Right
now, at this moment, I still feel the same way, sort of. I still feel angry
that I have to go on a “last resort” medication, but it’s more suppressed. Also
it’s suppressed because Mum told me that Dr. W has never led us astray before.
But things are definitely going to get better, based on past results. So I will
be looking forward to that.</span></div>
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<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">That’s
all from me this time. I’m not sure if I’ll be writing more blogs for Saving
Jules, but if I’m asked to I will definitely do it. It was a pleasure writing
down my feelings and getting them off my chest.</span></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Until
next time, have a good night and good day.</span></div>
<div class="MsoNoSpacing">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><span style="mso-spacerun: yes;"> </span>– Jules</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com1tag:blogger.com,1999:blog-1116489945980282596.post-90408648180652385922015-07-01T14:30:00.001+10:002015-07-01T14:32:39.748+10:00Hit by a Bombshell<!--[if gte mso 9]><xml>
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<br />
<span style="font-family: "Arial","sans-serif";">At Julian's last appointment of the day last at the Pulmonary Hypertension Clinic last week (Thursday 25<sup>th</sup>
June 2015), we had a bit of a bombshell dropped on us.<span style="mso-spacerun: yes;"> </span>It was one of those appointments when I
wished Will had been with me, but we have 3 other children in primary school
and someone needed to be home for them when they came off the bus.<span style="mso-spacerun: yes;"> </span>I’m just thankful my Mum had gone in with us
this time to visit my teenage cousin who was in hospital for a ‘tune up’ for
Cystic Fibrosis, because I was absolutely shell shocked when we walked out of our final
appointment.</span><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghhbWy7ItQpROtdf8cQlO4C6RS_e6STixcNE2u5AfC7EDoGQdVNdnPJf2BIrYCdRoo2wUp6kORUbxJpDrQRlyMj2LSEqpxTudhvYEBqqLbPRImti94zqjjzGmvaZ3G8WQUrbK3Re46yZw/s1600/20309_10205509529990985_8348913092625189875_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghhbWy7ItQpROtdf8cQlO4C6RS_e6STixcNE2u5AfC7EDoGQdVNdnPJf2BIrYCdRoo2wUp6kORUbxJpDrQRlyMj2LSEqpxTudhvYEBqqLbPRImti94zqjjzGmvaZ3G8WQUrbK3Re46yZw/s320/20309_10205509529990985_8348913092625189875_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Exhausted after a day of testing</td></tr>
</tbody></table>
<span style="font-family: "Arial","sans-serif";">Long story short, sometime
between September and the end of the year, Julian will be started on a
medication called '<a href="https://en.wikipedia.org/wiki/Prostacyclin" target="_blank">Prostacyclin</a>',
which 'inhibits platelet activation and is also an effective '<a href="http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/high-blood-pressure-medication/art-20048154" target="_blank">vasodilator</a>'.
It will be given through a <a href="https://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter" target="_blank">PICC line </a>or a <a href="https://en.wikipedia.org/wiki/Hickman_line" target="_blank">Hickman line</a>.<span style="mso-spacerun: yes;"> </span>As I understand it, this used<span class="textexposedshow"> to be a
'last resort' medication, but Julian’s cardiologist has been in contact with
other specialists in the field, and it is now thought it is a far more
effective preventative, rather than a last resort, as there is no guarantee how
effective it would be when people got that sick that they had no choice but to
be put on it.</span></span><br />
<br />
<span class="textexposedshow"><span style="font-family: "Arial","sans-serif";">At
first, Julian was on see-saw of emotions, ranging from “At least I will feel
better” to “You would all be so much better off without me, look at all the
problems I cause."<span style="mso-spacerun: yes;"> </span>Now, he seems to be very
accepting about it. </span></span><br />
<br />
<span style="font-family: "Arial","sans-serif";">This is going to be such a
huge lifestyle change for all of us and there are so many things I want Julian
to experience before he has to start on Prostacyclin - which will be very restrictive to what he can and can't do. I want him to go to town on all the
things he won't be able to do once he starts. New Zealand. Water parks. New
Zealand. Roller coasters. New Zealand. Swim with dolphins. Did I mention New
Zealand??? <span style="mso-spacerun: yes;"> </span>As if Julian doesn't miss
out on enough of life, now he will be even more restricted.</span><br />
<br />
<span style="font-family: "Arial","sans-serif";">This is completely unexpected
for us, and not something you can ever plan for. We have done our best to make
sure we can do everything together as a family. Some of you may not know, or
may not realise that Julian's condition - <a href="http://www.phaaustralia.com.au/content/what-pulmonary-hypertension" target="_blank">Idiopathic Pulmonary Arterial Hypertension</a> - is terminal. That means it will kill
him. Not might. WILL. It's not a matter of if, but when. This is why we want to
get as much done for him as possible.</span><br />
<br />
<span style="font-family: "Arial","sans-serif";">Our family is so appreciative
of all your support.<span style="mso-spacerun: yes;"> </span>Julian especially
loves the messages of encouragement he receives from you all.<span style="mso-spacerun: yes;"> </span>Keep an eye out for a blog post from him, to
all of you, letting you know how he felt, how he feels now, what he will miss
and what he’s looking forward to.</span>Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-13630793186060146862015-01-09T09:36:00.001+10:002015-01-09T09:36:18.689+10:00Recording Life<!--[if gte mso 9]><xml>
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<![endif]--><span style="font-family: "Arial","sans-serif";">On the way home from
the new Lady Cilento Children's Hospital late Monday afternoon, Julian was being his usual self in the car –
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<span style="font-family: "Arial","sans-serif";">So, I told him he should
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Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-65466395718079270932015-01-06T17:41:00.001+10:002015-01-06T17:41:09.291+10:00A trip to the new hospital!<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial","sans-serif";">We were at our
neighbours son’s 7<sup>th</sup> birthday party last Sunday morning when my 11
year old came up to me and told me “Mum, Julian’s not feeling well.”<span style="mso-spacerun: yes;"> </span></span>
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<br /></div>
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<span style="font-family: "Arial","sans-serif";">I looked over to the
swings – where all good teenagers and pre-teens go to play at a playground! –
to see him slumped over one of the swings on his stomach with his forehead
resting on the ground.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif";">When I got to him and
helped him to stand he said that he was having chest pains, so I walked him
over to the picnic tables and helped him to sit down.<span style="mso-spacerun: yes;"> </span>He flat out begged me not to call an
ambulance – he didn’t want to frighten the little kids at the party – so I kept
a close eye on him for a while.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxaoEHBiBNP_eHWmcrx9WAc_0_mqdAB_9fCjnNgs_cMmW6vfHm_lSAsklHtaC22BVgGr7AqWaJ8XDW7majfu4sE__RDL6gTmjHo9qNPkmoW06KMNrCsSdjcULgY7QZ4E5R-9FLuxLuGsk/s1600/20150104_115637.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxaoEHBiBNP_eHWmcrx9WAc_0_mqdAB_9fCjnNgs_cMmW6vfHm_lSAsklHtaC22BVgGr7AqWaJ8XDW7majfu4sE__RDL6gTmjHo9qNPkmoW06KMNrCsSdjcULgY7QZ4E5R-9FLuxLuGsk/s1600/20150104_115637.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank you Fairy Raine!</td></tr>
</tbody></table>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">He rested for a bit,
then we did a slow treasure hunt and he had his face painted by a lovely lady
called “<a href="https://www.facebook.com/FairyRaine?fref=ts" target="_blank">Fairy Raine</a>”</span><span style="font-family: "Arial","sans-serif";"> who went along brilliantly with my
dare to have his face painted like a Pirate Princess (we were at a Pirate Party
to, after all) – he got $10 out of it too!<span style="mso-spacerun: yes;">
</span>By the way, I can’t recommend her enough.<span style="mso-spacerun: yes;"> </span>She was absolutely brilliant, related
fantastically to all the kids, and my own 4 thought she was fantastic.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">So, long story even
longer.<span style="mso-spacerun: yes;"> </span>He tried to get comfy on the
picnic bench, slipped, bent his finger back and promptly sat on it.<span style="mso-spacerun: yes;"> </span>Arrrggghhhh!<span style="mso-spacerun: yes;">
</span>It swelled up like a bloody balloon, and we toddled off to the local
Ambulance station to see if they thought it was broken or not.<span style="mso-spacerun: yes;"> </span>No one was there so Will and I made the
decision that I would take him to Robina Hospital ‘just in case’.<span style="mso-spacerun: yes;"> </span>He is on Warfarin, so our worry wasn’t just
that it was broken, but may be bleeding in the joint. </span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj98nMnap2qRGl4pgFCwqVXl5Yr43PiSVAyE32BidKm-zF_I84xMdSA-7LSbQU990TDeAg8V0x30zbov_HSAJyAdv9huR8CvfLMPK1ibVGOw_L5ufcxuPvM8-pBUcCGlJCrVJ25qoN_sDk/s1600/20150104_141907.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj98nMnap2qRGl4pgFCwqVXl5Yr43PiSVAyE32BidKm-zF_I84xMdSA-7LSbQU990TDeAg8V0x30zbov_HSAJyAdv9huR8CvfLMPK1ibVGOw_L5ufcxuPvM8-pBUcCGlJCrVJ25qoN_sDk/s1600/20150104_141907.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for results . . . </td></tr>
</tbody></table>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">When we got to Robina
Hospital, they took us straight through once they heard how he had injured his
finger.<span style="mso-spacerun: yes;"> </span>He was hooked up to an ECG,
bloods taken, xrays done and they were in constant contact with the Cardiac
Fellow at the Lady Cilento Children’s Hospital.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Arial","sans-serif";"><span style="mso-spacerun: yes;"> </span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaDh_S66FR-Xqmcx9QFrUjh8A8_mCvyBOWjxA40zQKjBrCS8fgz6zNIuXrEyqDRRlMxwWfgeGH2q2gyBTmZKMkiN23NFVQJTmqVYJAkO7k33b5r-K9lRBX5ALqnnLnaG8U9qoJ87borzc/s1600/20150104_203533.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaDh_S66FR-Xqmcx9QFrUjh8A8_mCvyBOWjxA40zQKjBrCS8fgz6zNIuXrEyqDRRlMxwWfgeGH2q2gyBTmZKMkiN23NFVQJTmqVYJAkO7k33b5r-K9lRBX5ALqnnLnaG8U9qoJ87borzc/s1600/20150104_203533.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">HUGE tellies in the ED at Lady Cilento</td></tr>
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<span style="font-family: "Arial","sans-serif";"><span style="mso-spacerun: yes;"> </span> </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">A few hours later, he was transferred to the new Lady Cilento Children’s
Hospital where he spent the night, and then spent Monday having tests done. The new hospital is great, I just wish we hadn't had to see it so soon!</span></div>
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<span style="font-family: "Arial","sans-serif";"> </span></div>
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<br /></div>
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<tr><td class="tr-caption" style="text-align: center;">HUGE rooms too!</td></tr>
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<br /></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif";">Nothing was found, and
his results were all almost identical to the results from the Pulmonary Hypertension
clinic in November.<span style="mso-spacerun: yes;"> </span>The doctors are of
the opinion that he just did too much.</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif";">So, now to figure out
how to keep a teenager quiet for the next few days . . . </span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-36411855356251096062015-01-03T13:30:00.002+10:002015-01-03T13:30:33.503+10:00A heartbreaking lesson about friendship<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial","sans-serif";">Julian learned an unfortunately
hard and heartbreaking lesson today about friendship.</span></div>
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<span style="font-family: "Arial","sans-serif";">Friends don’t always
value you as much as you do them.<span style="mso-spacerun: yes;"> </span>He has
discovered that it is all too easy for some people to dismiss who you are and your long-standing friendship when what you say doesn't suit them.<span style="mso-spacerun: yes;"></span></span></div>
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<span style="font-family: "Arial","sans-serif";">I must admit, I am desperately worried about
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rumours and lies.</span></div>
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<span style="font-family: "Arial","sans-serif";">I’m looking forward to
meeting his new friends and hope that the old ones soon learn what they are missing out on.</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com3tag:blogger.com,1999:blog-1116489945980282596.post-76604594590373084112014-08-11T09:23:00.002+10:002014-08-11T09:24:49.279+10:00Chewing Gum and Duct Tape<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial","sans-serif";">I learned something about
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to me, just a realisation that came upon me suddenly while I was clicking my
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<span style="font-family: "Arial","sans-serif";">I’ve been hiding myself
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<span style="font-family: "Arial","sans-serif";">I may seem fine on the
outside, but if you don’t see me here or on the <a href="https://www.facebook.com/SavingJules" target="_blank">Saving Jules</a> Facebook page, it
may be because the chewing gum and duct tape that are holding me together
inside is coming loose.</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-22284682211678596652014-05-31T21:19:00.003+10:002014-06-01T00:08:12.444+10:00Introducing Julian!!!<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Well, we’ve had a pretty crappy year this year so far.<span style="mso-spacerun: yes;"> </span>The last few months we’ve spent packing and
moving, which was not a lot of fun for any of us.<span style="mso-spacerun: yes;"> </span>On the day of my last post (in fact only a
matter of a few hours later) my cousin passed away unexpectedly, and I lost a very good friend to Pulmonary Hypertension a few weeks later.<span style="mso-spacerun: yes;"> </span>My Nana’s health started to deteriorate
quickly after the loss of my cousin and in March she sadly passed away at the wonderful age of
90-almost-91.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">This morning I woke up with a strong feeling that I really needed to get
back into the swing of things with Saving Jules and today I really wanted to
introduce you to Julian himself, and the kind of person he is.</span></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt; text-align: center;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">He loves to read.</span></div>
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<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwffce_ZmCMt3wDqvuEyDUo2sdB_q9LKHopozmUcpNIkOIBbcBQLUnqS-rkezAHWIKAXAGfuI8MEv9JLj2fOYkndyxkFYrOjrKh8eSmOVZtw9Y4PmoRAbWWof4p0KoEh1kCnEk54hBnRU/s1600/06-05-12+290.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwffce_ZmCMt3wDqvuEyDUo2sdB_q9LKHopozmUcpNIkOIBbcBQLUnqS-rkezAHWIKAXAGfuI8MEv9JLj2fOYkndyxkFYrOjrKh8eSmOVZtw9Y4PmoRAbWWof4p0KoEh1kCnEk54hBnRU/s1600/06-05-12+290.jpg" height="200" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With his favourite author, John Flanagan</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqpwT-BiGw8Z9EKyHB2uUWGSiBTCauBXOyHf-M1S0HLvJts8VsNz-0hxqwU7DzU1Ax_byBlxfGuilVVCHoavhaNTRwk7fXCFgrhsbAy1MpfhYqjFd4c5I1yTsz0xD0bevZGrR8SxjFVKQ/s1600/IMG_2312.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqpwT-BiGw8Z9EKyHB2uUWGSiBTCauBXOyHf-M1S0HLvJts8VsNz-0hxqwU7DzU1Ax_byBlxfGuilVVCHoavhaNTRwk7fXCFgrhsbAy1MpfhYqjFd4c5I1yTsz0xD0bevZGrR8SxjFVKQ/s1600/IMG_2312.jpg" height="200" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kicking it back with a book</td></tr>
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<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> </span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt; text-align: center;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">He's dramatic. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1oFf14TYMZUTBMYZ1DA6S9DjBeezGW8ki3H3lA5a5-mwXiw5g18FIkTSpiKoA207it45C3DNPhzQ6Eh-t4SoU66Cl-xY27tqI4JQyy0UnRr8J0CtrWcgkDmXyRYGywAj4jKsYkDgsxx4/s1600/20140330_152339.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1oFf14TYMZUTBMYZ1DA6S9DjBeezGW8ki3H3lA5a5-mwXiw5g18FIkTSpiKoA207it45C3DNPhzQ6Eh-t4SoU66Cl-xY27tqI4JQyy0UnRr8J0CtrWcgkDmXyRYGywAj4jKsYkDgsxx4/s1600/20140330_152339.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Arial","sans-serif";">Oh, the humanity!</span></td></tr>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt; text-align: center;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> He’s artistic. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkIjn-iE6lEV9Xk3B249SQ42M0LldNhhbjzsF719DIygotjb5hnKHYPythIZrjtTOmyBzvtES2Err7m_wnSalXmry_Oy1X-Df9svqBrkslb0qTFNP2DrjQQdfo2nDWp5e0TeLLFI8MGYA/s1600/IMG_2666.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkIjn-iE6lEV9Xk3B249SQ42M0LldNhhbjzsF719DIygotjb5hnKHYPythIZrjtTOmyBzvtES2Err7m_wnSalXmry_Oy1X-Df9svqBrkslb0qTFNP2DrjQQdfo2nDWp5e0TeLLFI8MGYA/s1600/IMG_2666.jpg" height="200" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fighting boredom at a clinic</td></tr>
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<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjXk_qVVzBUycintdG4IR5Ln5-j-KJdEScYi0qOP4CNCLccklCofOfYMEIWMOCQSY-8eqrsT1AMhAT4MEUwlGqPtlltQIqPPk_QXBv5J9-Tts5IT2uc5PlmZS5aKc9y3c6pQYxq6bcNCM/s1600/IMG_3341.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">He’s loving and affectionate. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjobw1wW8FgCKcIHU22Fd8pM4_BkIKyu679myTjkjQagMIjdmvlNJZSMKpr_Adz6AEqwFGJL9UEdUQ55srFAgrt08CnhYr5IoNWi0XhuVyoct4TBfEPrEanur_Xl_W2C_wu3JGlueKmcJI/s1600/DSCF0938.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjobw1wW8FgCKcIHU22Fd8pM4_BkIKyu679myTjkjQagMIjdmvlNJZSMKpr_Adz6AEqwFGJL9UEdUQ55srFAgrt08CnhYr5IoNWi0XhuVyoct4TBfEPrEanur_Xl_W2C_wu3JGlueKmcJI/s1600/DSCF0938.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cuddles with Omar </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjXk_qVVzBUycintdG4IR5Ln5-j-KJdEScYi0qOP4CNCLccklCofOfYMEIWMOCQSY-8eqrsT1AMhAT4MEUwlGqPtlltQIqPPk_QXBv5J9-Tts5IT2uc5PlmZS5aKc9y3c6pQYxq6bcNCM/s1600/IMG_3341.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjXk_qVVzBUycintdG4IR5Ln5-j-KJdEScYi0qOP4CNCLccklCofOfYMEIWMOCQSY-8eqrsT1AMhAT4MEUwlGqPtlltQIqPPk_QXBv5J9-Tts5IT2uc5PlmZS5aKc9y3c6pQYxq6bcNCM/s1600/IMG_3341.JPG" height="200" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A new cousin</td></tr>
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<div style="text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjobw1wW8FgCKcIHU22Fd8pM4_BkIKyu679myTjkjQagMIjdmvlNJZSMKpr_Adz6AEqwFGJL9UEdUQ55srFAgrt08CnhYr5IoNWi0XhuVyoct4TBfEPrEanur_Xl_W2C_wu3JGlueKmcJI/s1600/DSCF0938.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a></div>
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<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> </span><span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> He’s a risk tasker.</span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuCy_Ry6O7cAZNnAeO9BkSFwCdMcuu637XYK7DR_tFUEINnQzYKsqh1ZQXyGXqMa5mDigRL6GiDmyTHhx047Q7OKwZus_FAVcyu3GddonDBPNGVnP6yj5ii_UQWKOtn8DKWVZ9v0TfElU/s1600/DSCN2631.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuCy_Ry6O7cAZNnAeO9BkSFwCdMcuu637XYK7DR_tFUEINnQzYKsqh1ZQXyGXqMa5mDigRL6GiDmyTHhx047Q7OKwZus_FAVcyu3GddonDBPNGVnP6yj5ii_UQWKOtn8DKWVZ9v0TfElU/s1600/DSCN2631.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Climbing a Pandanus Tree at Fingal Head</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmt9Xwm7Y-XY9D0Uv2DPcsX_G_cmLtCbD69UP3T9BtfH6tuIGFcpHYDTFcfQCdt3T-EN7-j2kPyB8eJZzd7Eng1DdKhTv_dOi-79UArKsmBBGCtVnQ2SZYIWXeF9yeAgswyNeGcr57vhQ/s1600/20131104_121518.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmt9Xwm7Y-XY9D0Uv2DPcsX_G_cmLtCbD69UP3T9BtfH6tuIGFcpHYDTFcfQCdt3T-EN7-j2kPyB8eJZzd7Eng1DdKhTv_dOi-79UArKsmBBGCtVnQ2SZYIWXeF9yeAgswyNeGcr57vhQ/s1600/20131104_121518.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An Essex-Lopresti fracture</td></tr>
</tbody></table>
</span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuCy_Ry6O7cAZNnAeO9BkSFwCdMcuu637XYK7DR_tFUEINnQzYKsqh1ZQXyGXqMa5mDigRL6GiDmyTHhx047Q7OKwZus_FAVcyu3GddonDBPNGVnP6yj5ii_UQWKOtn8DKWVZ9v0TfElU/s1600/DSCN2631.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
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<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> </span><span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">He loves to make people laugh.</span></div>
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<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYikvDDfpOyrtkEH-Q6udJIRnsbQsFr2I3MVDM6W_Z2CE7p2bDfhXFS8XvWnyyRhmt3UtxNaHgwaxbX4J8jiAvfhXCnEiMhaB94ggOmaPp6uXuG8fHmQOTlflurcpOyyQRu07aNIztz5g/s1600/DSCF0848-LR.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYikvDDfpOyrtkEH-Q6udJIRnsbQsFr2I3MVDM6W_Z2CE7p2bDfhXFS8XvWnyyRhmt3UtxNaHgwaxbX4J8jiAvfhXCnEiMhaB94ggOmaPp6uXuG8fHmQOTlflurcpOyyQRu07aNIztz5g/s1600/DSCF0848-LR.jpg" height="200" width="141" /></a><span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> </span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg63hEtP0CYciypFTIt8bRmpvEX8UdDeziHI4RX8Fwwf8DgMyPi8O_LdnMt87mk81_Q5QUaLy3May5k33EY3lspNCFFyhqV8WFd4X527-ghet2GdVkMNJauDxtrzcP03rKCqJp_9DV5ibk/s1600/DSCF0845-LR.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg63hEtP0CYciypFTIt8bRmpvEX8UdDeziHI4RX8Fwwf8DgMyPi8O_LdnMt87mk81_Q5QUaLy3May5k33EY3lspNCFFyhqV8WFd4X527-ghet2GdVkMNJauDxtrzcP03rKCqJp_9DV5ibk/s1600/DSCF0845-LR.jpg" height="200" width="146" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">With his Dad, Nigel</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">With his younger brothers and sister</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYHzugyZrjA4Vbutph-E87_H-z7EzSwNi1Vc5FsyqlQPKBej7VkyYrHSS3jvHlHfmIcI2xYcIeFZyCMJPiEsijiXjoec6u9JVjVYQ4MN3NbF_qD-9S93qmjwq3ukSrqeQHoaSGPmHMpHg/s1600/20140531_104234.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYHzugyZrjA4Vbutph-E87_H-z7EzSwNi1Vc5FsyqlQPKBej7VkyYrHSS3jvHlHfmIcI2xYcIeFZyCMJPiEsijiXjoec6u9JVjVYQ4MN3NbF_qD-9S93qmjwq3ukSrqeQHoaSGPmHMpHg/s1600/20140531_104234.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Julian, Ayan, Ella-Shae & Boey</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Julian & I</td></tr>
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<br />Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-65804432146283584162013-12-29T15:21:00.001+10:002013-12-29T15:21:39.727+10:00Too busy to write? No, not really. Just slack!<!--[if gte mso 9]><xml>
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and to be honest, I don’t really have any reason not to be sitting at my
laptop, tapping away at the keys.</span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxAUChyphenhypheny4b0mPvwKhyphenhyphenyFl8-e3Ba_W7mWDIxuLzKfGes_kBMZYouJZremyK0Ks4ybiTiuI1hnprXnlJ4TVavnfxitUBJe_C34ehYFCYw3bXEXoilm_HU9Zv4k09Rnnwg1ZufKfo9grODu8/s1600/20131104_121518.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxAUChyphenhypheny4b0mPvwKhyphenhyphenyFl8-e3Ba_W7mWDIxuLzKfGes_kBMZYouJZremyK0Ks4ybiTiuI1hnprXnlJ4TVavnfxitUBJe_C34ehYFCYw3bXEXoilm_HU9Zv4k09Rnnwg1ZufKfo9grODu8/s320/20131104_121518.jpg" width="240" /></a></div>
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">It’s been a big few months for us.<span style="mso-spacerun: yes;">
</span>It turned out that back in October, Julian hadn’t just fractured the
radial head in his elbow, he had what is called an ‘Essex-Lopresti fracture’,
which basically means he fractured the radial head in his elbow, dislocated his
wrist and compressed the ligament in his forearm.<span style="mso-spacerun: yes;"> </span>He ended up with a ‘sugar-tong’ cast for 4
weeks, and he has healed quite nicely.<span style="mso-spacerun: yes;">
</span>It took about a week and a half for him to be able to straighten his arm
out properly though!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-tkebDpqoXxeVq4xdO581HeVcO4cWvCQcf6WWkqc8uz-1sdS2nClD43UXFbnNHNGA-9L4Tkdg6lIaFibaWL_xUqt93nA0pCTiyPwNDHVx5iZ8ES4AYeQ-8GEBKjPl1qRmaOr7nrvR3tA/s1600/1452387_10202041017400915_2004395938_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-tkebDpqoXxeVq4xdO581HeVcO4cWvCQcf6WWkqc8uz-1sdS2nClD43UXFbnNHNGA-9L4Tkdg6lIaFibaWL_xUqt93nA0pCTiyPwNDHVx5iZ8ES4AYeQ-8GEBKjPl1qRmaOr7nrvR3tA/s320/1452387_10202041017400915_2004395938_n.jpg" width="213" /></a></div>
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Julian turned 13 last month!<span style="mso-spacerun: yes;"> </span>Such
a huge milestone for him, and given his pre-teen attitude up until that point,
nothing short of a miracle!!<span style="mso-spacerun: yes;"> </span>Just
kidding.<span style="mso-spacerun: yes;"> </span>It was a pretty big deal
though.<span style="mso-spacerun: yes;"> </span>He wanted to go out to dinner in
a restaurant for his birthday, so 36 people ended up at the Hog’s Breath at
Main Beach, including 3 of his mates for a stomach bursting meal.<span style="mso-spacerun: yes;"> </span>Of course,
teenagers being teenagers, he and his mates ended up watching Hitchhikers Guide
to the Galaxy while eating chips and finally crashing at about 1am . . . after
which, Nigel & I thankfully crashed as well!<span style="mso-spacerun: yes;"> </span>A big thank you to my folks for taking our
younger 3 for the night, and to all our friends and family – some of whom
travelled many hours to get there – thank you so much for making Julian’s
birthday something he will never forget.</span></div>
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gone - my family's first Christmas without my big brother - and we are so close to 2014 we can just about touch it! </span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhurKKQRTHHO4lsQhp56mlLWlW8Cfkwsl4EDVCAVy4aFZJ4jfeNQu06sE6FDn1y24U-2ypvYUKG_Rqbp8X5cb-MZeTJANVgvG1pm2mSTp4sCfIJmrLByHmkabbNhg95jKcQcq1cleEGy-M/s1600/1488303_10202185078802360_1948137973_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhurKKQRTHHO4lsQhp56mlLWlW8Cfkwsl4EDVCAVy4aFZJ4jfeNQu06sE6FDn1y24U-2ypvYUKG_Rqbp8X5cb-MZeTJANVgvG1pm2mSTp4sCfIJmrLByHmkabbNhg95jKcQcq1cleEGy-M/s320/1488303_10202185078802360_1948137973_n.jpg" width="213" /></a></div>
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with teenage attitudes!) remember that no matter how close you come to strangling
them, you love them with all your heart, and you always will.</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-30685274738157104632013-10-30T13:27:00.001+10:002013-10-30T13:27:12.562+10:00What HAS he done now?<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Nigel’s brother has spent the last week with us, and we decided to have
a family day last Saturday for my birthday.<span style="mso-spacerun: yes;">
</span>It was lovely.<span style="mso-spacerun: yes;"> </span>Wayne took my
parents in his 4WD ute, we had the kids in ours and we took the drive to Lost
World Valley (part of Lamington National Park).<span style="mso-spacerun: yes;">
</span>We picked wild raspberries, got a bit edgy when a bull came very close
to us protecting his ‘Wifey’ and the kids had fun skipping stones in the creek.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">From there, we took Duck Creek Road (4WD only) up to O’Reillys
(Lamington National Park) for coffee, juice and hot chips before stopping off
at one of our favourite lookouts – Kamarun lookout – to take in the gorgeous
view before the long drive home.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">We had no sooner gotten out of the car when we all heard a loud thud,
then a scream, and turned to see Julian lying on the ground half on his side,
half on his stomach – very still - near the covered gazebo.<span style="mso-spacerun: yes;"> </span>Nigel and I raced over to see what had
happened (closely followed by Wayne, Mum and Dad) and ended up with Julian
screaming at us “Don’t touch my arm, don’t you dare touch my arm!”</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Between the two of us, we managed to convince him to let us roll him
over onto his back so Nigel could check his arm while I supported him from
behind.<span style="mso-spacerun: yes;"> </span>Mum came over with her every
present, fully stocked first aid kit and while I cleaned the scrapes on one
arm, Nigel was checking over the other one, which Julian was having trouble
moving, and all the while we were trying to find out what had happened.<span style="mso-spacerun: yes;"> </span>Turns out he had tried to vault a stone
pillar using his right hand, which had slipped and he put his left arm out to ‘save’
himself as he fell.<span style="mso-spacerun: yes;"> </span></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglyuqP_bQuelp6DH6ChvQ1hpRaecTGwrJOajwjILm0pA2FMw8oplIBc5CD13MmiDl3lWJRjgt6a-Lmj7hOe-iCVD56J5Gr7XGKbstQYrVTuCPqctfUfKwaTVOQrKP8LBu6ymx9M5axEHA/s1600/20131027_150616.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglyuqP_bQuelp6DH6ChvQ1hpRaecTGwrJOajwjILm0pA2FMw8oplIBc5CD13MmiDl3lWJRjgt6a-Lmj7hOe-iCVD56J5Gr7XGKbstQYrVTuCPqctfUfKwaTVOQrKP8LBu6ymx9M5axEHA/s320/20131027_150616.jpg" width="240" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">We had 2 junior Doctors come over (they were having a bit of a break
away and had decided to wander up and check out the sunset) who are currently
interning at Redcliffe hospital (what are the odds?!) and offered to check
Julian over to make sure nothing was broken.<span style="mso-spacerun: yes;">
</span>Luckily for Julian, one of them was interning in Orthopedics!!!<span style="mso-spacerun: yes;"> </span>There was no break, however they did say to
keep an eye on his arm because some injuries wouldn’t really show up until the
next day.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_oXmDGGdef_XtQ0xsK-MZt9fTcTyUxMqbvRZP5P9adKTnei1vImMbcA9nN5mQts8CfvJKLflXNct3fakNIY8DuM-POcR4cMk6w_0Guo1MN9j4PpZDI8msMeNH8-AdVrLQSeH7udZu19k/s1600/20131027_151241.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_oXmDGGdef_XtQ0xsK-MZt9fTcTyUxMqbvRZP5P9adKTnei1vImMbcA9nN5mQts8CfvJKLflXNct3fakNIY8DuM-POcR4cMk6w_0Guo1MN9j4PpZDI8msMeNH8-AdVrLQSeH7udZu19k/s320/20131027_151241.jpg" width="240" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">And the next morning, this proved to be true.<span style="mso-spacerun: yes;"> </span>His elbow had swollen up overnight, his wrist
was extremely painful and he had pins and needles in his fingers.<span style="mso-spacerun: yes;"> </span>So, off to the hospital we went.<span style="mso-spacerun: yes;"> </span>The result?<span style="mso-spacerun: yes;">
</span>Julian had fractured the radial head in his elbow and had also severely
sprained his wrist.<span style="mso-spacerun: yes;"> </span>So, we have an
appointment on Monday to see if they’ll keep the cast on or keep it off.<span style="mso-spacerun: yes;"> </span>In the meantime, he’s in a lot of pain, but
very thankful he hadn’t broken anything.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Boys.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Nigel and I would like to send out a huge thank you to the 2 Junior Doctors from Redcliffe Hospital who helped us out on Saturday afternoon. You were both very confident, reassuring and comforting. I may not look forward to meeting you again in the future, but don't take that personally!!! </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Also, a huge thank you to the staff at Robina Hospital Emergency Department. I don't think I have ever seen a more efficient Emergency Department (and I have seen a LOT). No doubt I will be seeing you again sometime in the future! </span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-13720395555229950772013-10-07T14:21:00.002+10:002013-10-07T14:21:33.021+10:00A Day for Jules<!--[if gte mso 9]><xml>
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<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW2hxEQJMbA0_XUWgo5IM3CK0InLGJsM-FihAiATYTxF-03QtpeyVkGRxrSxNtMvK0LptKWPoLWWTiCbeSh4j2SjprLWIwqXsRGX9Xd2_4pX2Zpqu7skLszvLI8aMG-RnNnknx5-uZtds/s1600/DSCN2648.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW2hxEQJMbA0_XUWgo5IM3CK0InLGJsM-FihAiATYTxF-03QtpeyVkGRxrSxNtMvK0LptKWPoLWWTiCbeSh4j2SjprLWIwqXsRGX9Xd2_4pX2Zpqu7skLszvLI8aMG-RnNnknx5-uZtds/s320/DSCN2648.JPG" width="240" /></a></div>
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> Each school holidays, my parents take one of our kids for a week.<span style="mso-spacerun: yes;"> </span>The kids love it!<span style="mso-spacerun: yes;"> </span>They get a holiday with Nanny and Poppy, and
time to themselves away from their three siblings.</span>
<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"> These holidays though, they ended up taking the younger three
instead.<span style="mso-spacerun: yes;"> </span>Two were supposed to go to
their Grandma and Granddad’s, but unfortunately Grandma ended up extremely ill
and in hospital the night before they were going to take them home with them,
so my parents offered to take them as well so they wouldn’t miss out on a
‘holiday’.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">That’s just what my parents do – they hate to see their grandchildren
disappointed and love to help out whenever they can.<span style="mso-spacerun: yes;"> </span></span></div>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">So for the first week of the school holidays, it was just Jules and
us.<span style="mso-spacerun: yes;"> </span>In my post ‘Stress Relief for
Siblings’, I wrote about how Nigel and I took our younger three to Fingal Head
for a day while Jules was on his own ‘holiday’ with Nanny and Poppy.<span style="mso-spacerun: yes;"> </span>This time around, we decided to take the
drive down with Julian.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHPYHOc2_SKpNgLTmr8Gz6FtFaTzaSO6GpfeY8lgDJhlpQkU0M3ogti5j7Rh1pDT-vHeUqSFqXD79zxT8mYdegmEna3OoQVCxQ82OiZcp7f7aipUU7a6Eg4y8VM7rwP-jIsvjcd415Rt8/s1600/DSCN2624.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHPYHOc2_SKpNgLTmr8Gz6FtFaTzaSO6GpfeY8lgDJhlpQkU0M3ogti5j7Rh1pDT-vHeUqSFqXD79zxT8mYdegmEna3OoQVCxQ82OiZcp7f7aipUU7a6Eg4y8VM7rwP-jIsvjcd415Rt8/s320/DSCN2624.JPG" width="240" /></a></div>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
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<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">This isn’t as easy as it sounds – the walk up to the Lighthouse and
cliffs one way would be quite tiring for him, so we needed to find an
alternative way that was a lot shorter.<span style="mso-spacerun: yes;">
</span>We ended up finding another car park that was closer, and made sure he
took it easy on the stairs on the way up.</span></div>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span lang="EN-US" style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">It was a great day.<span style="mso-spacerun: yes;"> </span>Fish and
chips for lunch, wandering along the beach and climbing unusual trees (well,
Julian did anyway) and getting stuck on the way down.<span style="mso-spacerun: yes;"> </span>He did end up getting palpitations on the way
back to the car at the end of the day, so hopefully these were recorded on the
event recorder he was wearing!</span></div>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
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gave Nigel and I a chance to enjoy his strange sense of humour without having
to curb it in front of his younger siblings, and a chance to just sit and talk.</span></div>
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Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-46034391688072766182013-09-26T11:23:00.001+10:002013-09-26T11:23:13.699+10:00Day 4 with an Event Recorder<!--[if gte mso 9]><xml>
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problem that was presenting itself would happen on a daily basis suddenly slows
down and you’re lucky to have just one present itself in a week???<span style="mso-spacerun: yes;"> </span>Grrrr.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDQDbDggPLBPP7GzNdw3fSaPBsBLF4i2WCjmv-RNbcxO-68XczG9GYvcMP5sqoCOP2pRFQnrrf7H2hveObwUhqr5m53cNETlCHugRWH7siUelFELIN5W5DD7qFuz0_a6FZPuKG7XUL9Qk/s1600/DSCN2614.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDQDbDggPLBPP7GzNdw3fSaPBsBLF4i2WCjmv-RNbcxO-68XczG9GYvcMP5sqoCOP2pRFQnrrf7H2hveObwUhqr5m53cNETlCHugRWH7siUelFELIN5W5DD7qFuz0_a6FZPuKG7XUL9Qk/s320/DSCN2614.JPG" width="240" /></a></div>
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me in mild horror) when he said “Do you think you can?<span style="mso-spacerun: yes;"> </span>Knock yourself out” showed me how well he has
come to know me over the past nine years!<span style="mso-spacerun: yes;">
</span>I haven’t tried it yet; I have until Monday.<span style="mso-spacerun: yes;"> </span>Julian’s already started peeking around
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Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-5445261084985160902013-09-16T12:24:00.002+10:002013-09-16T12:24:59.345+10:00Julian and the loss of my brother<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">A couple
of days ago, Mum asked me how Julian was coping with my older brother’s passing,
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loggerheads these past few weeks, I’d hazard a guess that it’s not
fantastic.<span style="mso-spacerun: yes;"> </span>The problem here is that, he
won’t talk to me about it and I’m left wondering if I should push him to talk
or leave him be . . .</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">I’ve
decided to leave him be.<span style="mso-spacerun: yes;"> </span>He’s seeing his
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">I’ve also
decided that this time around, I need to focus more on myself than on
Julian.<span style="mso-spacerun: yes;"> </span>I know he has lost his Uncle,
but I have lost my big brother.<span style="mso-spacerun: yes;"> </span>As you
grow older, you can sometimes lose the closeness you had with your siblings,
especially when you have families on your own.<span style="mso-spacerun: yes;">
</span>Unfortunately, this happened with Robert and I, especially over the last
few years, and there’s a certain amount of regret coupled with my grief.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Robert
was a huge inspiration to Nigel and I when Julian was diagnosed.<span style="mso-spacerun: yes;"> </span>He was born with a Congenital Heart Defect
called ‘Secondary Pulmonary Hypertension’ caused by ‘Eisenmongers’, and also
developed another condition called ‘Polycythemia’.<span style="mso-spacerun: yes;"> </span>Our father and his mother were told that the
chances of surviving his childhood were virtually non-existent, and yet he went
on to be one of the oldest surviving people with his condition in Australia,
passing away just 2 days short of his 49<sup>th</sup> Birthday.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">You can
see why Nigel and I took comfort in Robert’s life.<span style="mso-spacerun: yes;"> </span>When Julian was diagnosed and we were told
that he probably wouldn’t survive his childhood, he reminded us that the doctor’s
had been wrong about how long he would live since he was born.<span style="mso-spacerun: yes;"> </span>We used his life to remind Julian – who will
turn 13 in November - of how it <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">is</i></b> possible to beat the odds the
medical world tells you are against you.<span style="mso-spacerun: yes;">
</span>Every year was a milestone for Robert, and every time the doctors told
him “You won’t” he looked them in the eye and said “I will”.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">I have
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ease his grief and worries.<span style="mso-spacerun: yes;"> </span>And I hope
that it will help him to feel that he can talk to his Dad and I about it as
well.</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-25752635180571734232013-09-03T22:03:00.001+10:002013-09-03T22:03:23.543+10:00My Brother Robert<div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">When my brother Robert was born, he was diagnosed with a Congenital Heart
Defect called ‘Secondary Pulmonary Hypertension’ caused by ‘Eisenmongers’.<span style="mso-spacerun: yes;"> </span>He also had a condition called 'Polycythemia'. Our father and his mother were told that his
chances of surviving until he was 2 years of age was slim to non-existent.<span style="mso-spacerun: yes;"> </span>Then they said 6.<span style="mso-spacerun: yes;"> </span>Then 10.<span style="mso-spacerun: yes;">
</span>Then 16.<b style="mso-bidi-font-weight: normal;"><span style="mso-spacerun: yes;"> </span></b>Then 21.<b style="mso-bidi-font-weight: normal;"><span style="mso-spacerun: yes;"> </span></b>Then they stopped telling
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have.<span style="mso-spacerun: yes;"> </span>No one really knew, and I grew up
having that constantly at the back of my mind.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Yesterday, my brother Robert passed away.<span style="mso-spacerun: yes;"> </span>He would have turned 49 tomorrow.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Our morning had started off like any normal Monday morning.<span style="mso-spacerun: yes;"> </span>Nagging the kids to “Get out of bed, you have
school and Kindy”, organising lunches and ironing clothes.<span style="mso-spacerun: yes;"> </span>Shooing them out of the house to the car,
making sure Julian’s wheelchair was in the back and the last minute race for a
forgotten bag for Kindy.<span style="mso-spacerun: yes;"> </span>Nigel isn’t
usually with me on a school run, however he was yesterday as he had a doctor’s
appointment, and I am so grateful he was.<span style="mso-spacerun: yes;">
</span>After our final stop at Kindy, we decided to stop off at our local Supa
IGA so I could pick up a couple of things for dinner and some fruit.<span style="mso-spacerun: yes;"> </span>We met up with a friend in the car park and
Nigel stayed outside to chat while I went in and picked up what I needed.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">See?<span style="mso-spacerun: yes;"> </span>A normal start.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Nigel was waiting at the check-out for me and after a quick goodbye to
our friend, we walked out to the car.<span style="mso-spacerun: yes;">
</span>Mum rang me just as we had walked out the door; as soon as she asked me
where we were and if Nigel was with me, I knew something was wrong, and despite
the fact that my Nanna has not been well lately, I knew it had something to do
with my big brother.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">I know I cried out “No”.<span style="mso-spacerun: yes;"> </span>I know I
dropped the groceries and I know that if Nigel hadn’t caught my phone as he grabbed
on to me, it would have fallen to the footpath as well.<span style="mso-spacerun: yes;"> </span>I know my legs went out from under me, and I
could feel Nigel’s arms and legs start to shake from having to hold me up.<span style="mso-spacerun: yes;"> </span>I know that for a split second I felt
grateful we live in the small community that we do when I heard a woman ask
Nigel if I was okay, but that faded quickly in my grief.<span style="mso-spacerun: yes;"> </span>And I know that for a very long time, I went
numb.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">We saw our doctor.<span style="mso-spacerun: yes;"> </span>Nigel had a
blood test.<span style="mso-spacerun: yes;"> </span>Both our GP and the nurse expressed
their condolences after they asked me if I was okay.<span style="mso-spacerun: yes;"> </span>I told the nurse that I was feeling guilty
and she wanted to know why.<span style="mso-spacerun: yes;"> </span>I told her that
the night before I had rung my Dad for Father’s Day and he told me Robert had
called him too.<span style="mso-spacerun: yes;"> </span>He said that Robert was
having trouble losing weight, and I got <i style="mso-bidi-font-style: normal;">irritated</i>.<span style="mso-spacerun: yes;"> </span>I told my Dad that it was because my brother
didn’t look after himself.<span style="mso-spacerun: yes;"> </span>He smoked and
he didn’t always eat properly, even though he had made huge changes in his diet
recently.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">I was <i style="mso-bidi-font-style: normal;">frustrated</i> with my
brother, and I let my Dad hear that in my voice.<span style="mso-spacerun: yes;"> </span>Our nurse told me, in no uncertain terms, not
to be silly.<span style="mso-spacerun: yes;"> </span>She told me what Nigel had
been trying to say, but hearing it from someone detached from us made it so
much easier to hear.<span style="mso-spacerun: yes;"> </span>She told me that I
got irritated and frustrated because of how much I loved Robert, and how much I
cared about him and his health, and that it was okay to have felt that way at
that time.<span style="mso-spacerun: yes;"> </span>I shouldn’t feel guilty,
because the frustration and irritation stemmed from love.<span style="mso-spacerun: yes;"> </span>It helped to hear that.<span style="mso-spacerun: yes;"></span></span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">This morning I woke up angry with Robert.<span style="mso-spacerun: yes;"> </span>I was angry because he had started smoking at
such a young age – he was still a kid – and even though I understand his
reasons for starting as a kid, as an adult he had a life with his family to
look forward to.<span style="mso-spacerun: yes;"> </span>I was angry because he
didn’t look after himself better.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">And I’m angry because we had drifted apart over the last few years and
neither of us stood up and crossed the gap, even though we both had many
opportunities to do so.<span style="mso-spacerun: yes;"> </span>Despite this gap
between us, whenever we did see each other at family gatherings, his hugs let
me know how much he still loved his little sis.<span style="mso-spacerun: yes;">
</span>His ‘Olki-Mura’.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibOVmoavlzH9yb1wGscgfZYL6m2qC9aVgANmhEJdo3zvjtaWARNNNC3asoJB-WnDS2R1nPFKWf6kJP04i_64lT-YiQS6o6e2NP2fmlAmk-VnQPpCO-S1_SV9ULY3tZgNHVUDfA4dkt6h4/s1600/7330_1219617203919_3153141_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibOVmoavlzH9yb1wGscgfZYL6m2qC9aVgANmhEJdo3zvjtaWARNNNC3asoJB-WnDS2R1nPFKWf6kJP04i_64lT-YiQS6o6e2NP2fmlAmk-VnQPpCO-S1_SV9ULY3tZgNHVUDfA4dkt6h4/s320/7330_1219617203919_3153141_n.jpg" width="320" /></a></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">I wish I could hear his laugh one more time.<span style="mso-spacerun: yes;"> </span>When my big brother laughed, he did so with
his entire body.<span style="mso-spacerun: yes;"> </span>His shoulders would
shake, his tummy would bounce, even his arms and his legs would jump up and
down.<span style="mso-spacerun: yes;"> </span>He had a way of laughing that made
you turn and look and wish you were in on the joke.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">From the day Julian was diagnosed right up until yesterday, Robert was
our ‘litmus’ for Julian.<span style="mso-spacerun: yes;"> </span>We used his
achievements in life to remind Julian of how possible it is to beat the odds
the medical world tells you are against you.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Thank you, Robert, for giving us hope.<span style="mso-spacerun: yes;">
</span>We will always remember how you filled your life with as much as you
could, how you challenged the limitations doctors tried to place on you.<span style="mso-spacerun: yes;"> </span>How you would just shrug your shoulders and
say ‘Ah, well, that’s just the way it is’ and keep on going with how you had
decided you were going to live your life.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">I love you, and I will miss you for the rest of my life.</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-74421033843917306892013-08-07T20:21:00.002+10:002013-08-07T20:21:21.818+10:00Julian's treatment for IPAH<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Julian is
on 3 specific medications specifically for the treatment of his IPAH:</span></div>
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<br /></div>
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<span style="font-family: Symbol; font-size: 12.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-fareast-language: EN-AU;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> <b>
</b></span></span></span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"><b>Sildenafil
(Revatio) –</b> Sildenafil relaxes the arterial wall, which leads to decreased
pulmonary arterial resistance and pressure.<span style="mso-spacerun: yes;">
</span>This then reduces the workload of the right ventricle of the heart and
improves symptoms of right-sided heart failure.<span style="mso-spacerun: yes;">
</span></span></div>
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<span style="font-family: Symbol; font-size: 12.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-fareast-language: EN-AU;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> <b>
</b></span></span></span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"><b>Bosentan
(Tracleer) – </b>This is a medication called an ‘Endothelin receptor antagonist
(ERA)’.<span style="mso-spacerun: yes;"> </span>It helps PAH patients by
blocking the effects of the extra ‘Endothelin’ their bodies produce.<span style="mso-spacerun: yes;"> </span>Endothelin is a naturally occurring chemical
in your body and is involved in blood flow.<span style="mso-spacerun: yes;">
</span>Don’t worry, I don’t really understand how this works either!</span></div>
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<br /></div>
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– </b>This is an anticoagulant that lowers the risk of blood clots forming by
increasing the time it takes for blood to clot.<span style="mso-spacerun: yes;">
</span>There are two brands of Warfarin available in Australia – Marevan and
Coumadin.<span style="mso-spacerun: yes;"> </span>These brands are NOT the same,
and come in different tablet strengths and colours, so if you’re taking one,
you have to use the same brand unless your doctor specifically tells you to
change.<span style="mso-spacerun: yes;"> </span>Although Warfarin is very
effective, many commonly used medications and foods can interact with it, and
can change a patient’s ‘INR’ (International Normalised Ratio – basically how
long the blood takes to clot).<span style="mso-spacerun: yes;"> </span>INR has
to monitored by blood test or a ‘Coagu-check’ machine (similar to a blood sugar
machine).<span style="mso-spacerun: yes;"> </span>An INR that is too high
increases the risk of bleeding, and an INR below the nominated target increases
the risk of the dosage being too low to be efficient.</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Julian is
also on 2 other medications to treat issues either from side effects of his medications
or variables of his condition.<span style="mso-spacerun: yes;"> </span>One is
for migraines he suffers from which are both hereditary and a side effect of
the Sildenafil, and the other is to help with the difficulty he has sleeping
(both getting to and staying asleep), which for him is a ‘variable’ of his
condition.<span style="mso-spacerun: yes;"> </span>I guess he’s just lucky as
none of the other 3 kids with IPAH in Queensland have either of these!</span></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1b-u4AAbWIXYzwdjlDKacmo4Vgwin96WMUrnvCl_NplpvEfk3q7DNCdqFZtrMTarTDIqBUj3w551jFZDpE1TaaKv9dNJRmB3KnAVAXveGbm3XlinchnvyjkvqFZn2UbDvLxCOrye2XHM/s1600/bas.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipOWjxKNH2_SpxCs9cBfbYATUfnKbs27kliKlnaXeDfAThQ-I9t5uCy1vzV0hv0SehBwsQ1004p3LKBnhov-fYJhqkGJJ3d2fTXcf33R0AFF40qgDPQhD91TjjxkKoUs6oC3mm16bLxP0/s1600/bas.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="229" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipOWjxKNH2_SpxCs9cBfbYATUfnKbs27kliKlnaXeDfAThQ-I9t5uCy1vzV0hv0SehBwsQ1004p3LKBnhov-fYJhqkGJJ3d2fTXcf33R0AFF40qgDPQhD91TjjxkKoUs6oC3mm16bLxP0/s320/bas.jpg" width="320" /></a></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">More and more treatments are
being developed to treat IPAH. <span style="mso-spacerun: yes;"> </span>Atrial Septostomy
(making a hole in the two upper chambers of the heart – the atria- to relieve
the pressure in the heart due to the IPAH) and Prostacyclin (a drug given via a
portacath – in layman’s terms, a portacath is basically a ‘permanent catheter’,
and in the case of Prostacyclin, is put in the chest) can be offered to
sufferers who are failing their other medical therapies, and when all else has
failed, lung transplantation and heart/lung transplantation is also an option
for some –although not all.<span style="mso-spacerun: yes;"> </span>It seems
that different countries follow a different regimen when it comes to using the
different medications available to patients with IPAH.</span></div>
<div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFS0RRL8qt2q7LvaaHnSBRNEQhK5_dHcEUszri7euLWyNOXHgkkemhp_4EwoYiCQ6Ap01QnR_YyJoM7obqYmEqWcMcvJ5F0WjI1fktNQLqEDhBckERRIuuAH2bHLZrKoL-8Wywn2t2V6A/s1600/Rashkind-schema.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFS0RRL8qt2q7LvaaHnSBRNEQhK5_dHcEUszri7euLWyNOXHgkkemhp_4EwoYiCQ6Ap01QnR_YyJoM7obqYmEqWcMcvJ5F0WjI1fktNQLqEDhBckERRIuuAH2bHLZrKoL-8Wywn2t2V6A/s1600/Rashkind-schema.jpg" /></a></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Julian’s
health started to deteriorate a few years ago, and the decision was made to
perform an ‘Atrial Septostomy’ in 2011.<span style="mso-spacerun: yes;">
</span>This was supposed to happen in June, however due to a bad chest cold, it
was postponed to August 2011.<span style="mso-spacerun: yes;"> </span>In his
case, doctors had to first create a hole between the two atrial chambers,
before placing a dumbbell shaped stent in to keep the hold from closing
up.<span style="mso-spacerun: yes;"> </span>While his health never really got
back to what it was before it started to deteriorate, we were very lucky to
have had this procedure performed when it was.<span style="mso-spacerun: yes;">
</span>According to Julian’s cardiologist, he was borderline with the pressure
in his heart to perform it safely.</span></div>
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<br /></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Nigel and
I are continually looking for anything that helps Julian remain as healthy and
as active as he can, and we think we’re doing a bloody good job!</span></div>
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<br /></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-37268651961310486342013-08-02T10:02:00.003+10:002013-08-02T10:02:51.281+10:00I look forward to the silly things he’ll do<!--[if gte mso 9]><xml>
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<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">I
know this sounds a little silly, and a lot of parents dread the phone calls
from the school letting them know their child has run into a pole, jumped off
the slippery slide, or fell out of a tree they weren’t supposed to be climbing, but I'm really looking forward to silly things Julian is likely to do as a pre-teen!</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Over
the past couple of weeks, we’ve had 2 phone calls from the school that went a
little something like this, “Hi Nigel/Coleen!<span style="mso-spacerun: yes;">
</span>Don’t worry, Julian’s fine, but.. .”<span style="mso-spacerun: yes;">
</span>They’ve been greeted with that parental groan we all know so well, and
along with the mild annoyance I’ve felt at his silliness, I’ve also been
pleased at the same time.<span style="mso-spacerun: yes;"> </span>When you’re
told that you will outlive your own son, you start to regret the fact that
he’ll likely never fall off the monkey bars and break his arm – not that that’s
the good part! – and then feel the puffed up self-importance that all kids feel
when there’s a rush by friends to sign the cast.<span style="mso-spacerun: yes;"> </span>There will be no war stories told over the
doctors head while he stitches a leg or hand, no scars to share and brag about
with his mates.<span style="mso-spacerun: yes;"> </span>These are the injuries
that no parents really want for their kids – who wants to see their kids in
that much pain? – but it’s something that I always had a mild, somewhat guilty,
hope for him to experience.</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxfGGmg7-vyD71N5UT2XUHgUfbpTiIdkVr-VTMF7Fx43W0SzXPDsYULHDz8CjJ9Osq10VI7ZpmFsbgODjGRn_JTqO01xKbyy3MQS6J2U3Cza5k9Xgb8ouK-2mf-gLV62uOaH3IGKhyphenhyphenNoU/s1600/glue+stick.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMvd_6l1OWrhhI40BD-fuQ4pMdLBGvqPygem4Z9H2OcnDFbssPpmO6_BSWxZBDlFEfBw2azwmATiS19K9AVWU70vfXzi47-rDhutgaBjx5VQqanOR32aIZmlZFQ1GGwAhzXaUEdteYjjw/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMvd_6l1OWrhhI40BD-fuQ4pMdLBGvqPygem4Z9H2OcnDFbssPpmO6_BSWxZBDlFEfBw2azwmATiS19K9AVWU70vfXzi47-rDhutgaBjx5VQqanOR32aIZmlZFQ1GGwAhzXaUEdteYjjw/s200/images.jpg" width="143" /></a></div>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">His
first misdemeanour was the week they all went back to school, and involved putting his head together with a mate and deciding
that having said friend push him down the hill on the oval in his wheelchair
would be a break from the boredom of high school!<span style="mso-spacerun: yes;"> </span>Let’s just say a clean-up of the wheelchair
was in order after that one . . . </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjq2knmJwlw3Gh5kuITN1AsHtTuP7z6wov5PY8-rF2CO3Z5dpVaQuXGGRzWB8NIVwWXaoISIeHj4xXQk_xAafHEq8KEn6MZQ0BHcrDoBAH-QyeDEFRFv24T8Rlbw0_vqgXJAhCxdCiSPw/s1600/leather+neck+cord.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjq2knmJwlw3Gh5kuITN1AsHtTuP7z6wov5PY8-rF2CO3Z5dpVaQuXGGRzWB8NIVwWXaoISIeHj4xXQk_xAafHEq8KEn6MZQ0BHcrDoBAH-QyeDEFRFv24T8Rlbw0_vqgXJAhCxdCiSPw/s200/leather+neck+cord.jpg" width="200" /></a></div>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Then,
just a week ago we got a call to let us know about a magic trick gone
awry!<span style="mso-spacerun: yes;"> </span>Long story short, it involved
glue, a leather neck band and what looked like carpet burn on his neck . . . I’ll
leave your imaginations to fill in the rest!</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">We
may have been annoyed by his silliness, but boy oh boy, were we pleased he got
to have those experiences too!</span></h2>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-40101498780002120972013-07-11T14:45:00.002+10:002013-07-11T14:45:20.079+10:00Living with IPAH - Part Two<!--[if gte mso 9]><xml>
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<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt;">Warning- this input has one questionable word
that no parent wants their 8 year old saying. Please proceed carefully (not
that this blog series hasn’t had any language in it already, huh?)</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">From
Julian’s point of view:</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU23YXvSoSt5S-rpwHL7SQ-vxHA6vl5XkwwY2F8tXknRQnHl1uDwHpHwe_7cK9O-PQzjac4GPyYbfSAuxuz6YgMkT9UV33NwbhAEaMorkNZkn6Rd46R39fch03xYO6g0_IFxfacZUXi7Q/s1600/IMG_2312.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU23YXvSoSt5S-rpwHL7SQ-vxHA6vl5XkwwY2F8tXknRQnHl1uDwHpHwe_7cK9O-PQzjac4GPyYbfSAuxuz6YgMkT9UV33NwbhAEaMorkNZkn6Rd46R39fch03xYO6g0_IFxfacZUXi7Q/s320/IMG_2312.jpg" width="239" /></a></div>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Wasup
everybody. And welcome to MY point of view. The point of view that comes from
the <i style="mso-bidi-font-style: normal;">completely </i>reliable 12 year old
who never has anything dishonest to say…or at least not all the time.</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Now,
I have a rare heart/lung condition called Idiopathic Pulmonary Arterial
Hypertension.</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">This
entry is not of me saying (imagine these with a posh and British sort of
accent) “Oh, look at me, I have a rare heart condition and the world should
give everything I want… and if not I’ll throw a tantrum” NO. That’s just awful,
don’t you think? </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">A
question I get asked a <i style="mso-bidi-font-style: normal;">lot</i> is:
“What’s it like to have your heart condition?” well, here’s the answer. <i style="mso-bidi-font-style: normal;">IT SUCKS!!!</i> Symptoms that I get are
anything anyone else would <i style="mso-bidi-font-style: normal;">not </i>hope
for. I get fatigue, hyperventilation, shortage of breath, and a whole lot more
that I just cannot memorise. So, once again… MY CONDITION SUCKS.</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">The
one thing that is the most irritating about my condition is the disabled car
park. If you’ve read “You don’t look sick”, post #9 you’ll know. I just hate
sitting or standing next to one of my parents argue over a stupid medical
condition to some bozo who’s just slipped into a bloody <i style="mso-bidi-font-style: normal;">car park </i>just as our responsible father or mother has just been
about to do the same. </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt;">AAAAAAARRRRRGGGGHHHHH!!!!!!!! </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Anyway,
now I’ve gotten that out of me...</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">I
also have lots of food restrictions, like I can’t eat cranberries, grapefruit,
or too many greens. And that fact just blows me away. Greens? Too many leafy
greens? Come on!!!</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">One
leafy green I can’t have too much of: Spinach. And that’s my favorite
vegetable!!!</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt;">DOUBLE COME ON!!!!!! </span><span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"><span style="mso-spacerun: yes;"> </span></span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Anyway,
I think that’s just about covered everything about being ME. From MY point of
view. So, thanks for reading and I might be seeing you soon.</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 9.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Blog
Post by: </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "AR BERKLEY"; font-size: 22.0pt; font-weight: normal; mso-bidi-font-family: Arial; mso-bidi-font-weight: bold;">Julian Summers</span></h2>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-27402607200287157622013-07-02T17:24:00.000+10:002013-07-02T17:24:40.813+10:00Living with IPAH – Part One<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">From
my point of view as a Mum:</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">One
of the hardest things to accept about Idiopathic Pulmonary Arterial Hypertension was hearing that I was going to lose
my son to it.<span style="mso-spacerun: yes;"> </span>No one should have to hear
that their child is being given a life sentence – especially from something
that has no medical reason for happening. And you know what? <i><b>It's not fair.</b></i> I'm sitting here at my laptop listening to Julian chatting with a mate he has over today, and it breaks my heart to think that one day, I won't be able to hear his voice anymore. I won't see those silly faces he pulls, won't be able to wonder at how tall he's growing or feel the comforting squeeze around my waist as he gives me a hug. One day, those bullet kisses he gives me on the cheek at night (the ones where he almost 'punches' his kiss on my cheek!) will stop. I can't imagine a life without my first born son . . . I just know that I will lose a part of myself along with him.</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">My
life seems to be full of disagreements with medical professionals, constant
visits to the doctors, hospital stays for a ‘simple’ bout of gastro, trips to
the chemist (I know almost all the staff by name now and definitely by face!),
calls from the school . . . it goes on and on.<span style="mso-spacerun: yes;">
</span>I’d love to be able to go a day without having to use the phrase “Jules
have you had your tablets yet?” or, better yet, “Julian!<span style="mso-spacerun: yes;"> </span>Why haven’t you had your tablets yet?!”<span style="mso-spacerun: yes;"> </span>Right now, I’m constantly worried about the
‘flu, even though he’s had his ‘flu needle.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNq041xxAufqPtmvBy3AbYSYN6jasQ7ixDS8d9Q6P_4eSP6ruhFN_g68G6IbFSQBhDyr4G-RncFExbgPQgt03IUkfM7yIbijGpDL9tfqV5RUXcWCaYO_w1pec1d2IV8B0vPh7g1S1ECiA/s1600/DSCF1346.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNq041xxAufqPtmvBy3AbYSYN6jasQ7ixDS8d9Q6P_4eSP6ruhFN_g68G6IbFSQBhDyr4G-RncFExbgPQgt03IUkfM7yIbijGpDL9tfqV5RUXcWCaYO_w1pec1d2IV8B0vPh7g1S1ECiA/s320/DSCF1346.JPG" width="320" /></a></div>
</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Sometimes
I wonder what our lives would be like if Julian had never collapsed for that
first time, if this awful condition had never become part of our everyday
family life.<span style="mso-spacerun: yes;"> </span>Would he be sporty and our
afternoons be spent at sports practice and weekends at games?<span style="mso-spacerun: yes;"> </span>Or would he still be my little bookworm that
loves curling up with a great book?<span style="mso-spacerun: yes;"> </span>I
know we would be spending more time in the ‘great outdoors’ as a family,
instead of Nigel taking the kids one at a time for a nice long bushwalk so our
other children don’t miss out on the world. </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Despite
all this, I don’t think IPAH has to be the almost immediate life sentence (between
2 – 5 years) it once was.<span style="mso-spacerun: yes;"> </span>I know that
one day we will lose our son to IPAH but it obviously wasn’t as soon as we were
told we would, and as his cardiologist – Dr. W – once told us, Julian’s life
would have be about ‘quality not quantity’.<span style="mso-spacerun: yes;">
</span>We really took that to heart (excuse the pun!) and I firmly believe that
the ‘quality’ has given us the ‘quantity’ we were told we wouldn’t have.<span style="mso-spacerun: yes;"> </span>We’ve made sure that Julian is as active as
he can be, doing what he can and, being extremely sensible about it, has enabled
him to lead as fulfilling a life as possible.<span style="mso-spacerun: yes;">
</span>So many new medical treatments have become available since Julian was
diagnosed, and I’m sure that there will be many more in his future.<span style="mso-spacerun: yes;"> </span>Julian has told me that he’s just waiting for
the research and technology to allow cloning of a person’s organs from their
own DNA.<span style="mso-spacerun: yes;"> </span>That way, he can have the
heart/double lung transplant he may one day require and not have to worry about
his body rejecting them!</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;">Positive
outlooks are so important, and allow our dreams to flourish where they might
have otherwise perished.</span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"> </span></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in; tab-stops: .25in;">
<span style="font-family: "Arial","sans-serif"; font-size: 11.0pt; font-weight: normal; mso-bidi-font-weight: bold;"><span style="mso-tab-count: 1;"> </span><i style="mso-bidi-font-style: normal;">“Keep your face always toward the sunshine –
and shadows will fall behind you.” </i></span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial","sans-serif"; font-size: 11.0pt;">– Walt </span></i></h2>
<h2 style="margin-bottom: .0001pt; margin: 0in; tab-stops: .25in;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial","sans-serif"; font-size: 11.0pt;"><span style="mso-tab-count: 1;"> </span>Whitman</span></i></h2>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-32447118831484307582013-06-25T13:45:00.001+10:002013-06-25T13:45:05.612+10:00What is Idiopathic Pulmonary Arterial Hypertension?<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Ha!<span style="mso-spacerun: yes;"> </span>I just realised that after all this time, I
still haven’t written about what Idiopathic Pulmonary Arterial Hypertension <i style="mso-bidi-font-style: normal;">actually</i> is!<span style="mso-spacerun: yes;"> </span>*Face palm*</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Pulmonary
Arterial Hypertension is a rare disease where the blood pressure in the lungs
is higher than normal.<span style="mso-spacerun: yes;"> </span>PAH happens when
the blood vessels tighten, and over time this causes fibrosis (scars) of the
vessel and higher pulmonary blood pressure.<span style="mso-spacerun: yes;">
</span>The Right Atrium and Right Ventricle chambers of the heart have
difficulty pumping blood out to the pulmonary artery and through the
lungs.<span style="mso-spacerun: yes;"> </span>There is a large amount of strain
on the heart to overcome this high pressure and the constriction causes the
heart to become enlarged and weakened.<span style="mso-spacerun: yes;">
</span>Eventually, the heart can no longer keep up with the demands placed on
it by the body and can result in heart failure.</span></div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC5Fz8Z2fElVhb6EKLyeuxmTILAEQEh96n-O3nCmrh83Wr9iPjvOzTGKIZO1QGUYuK8VNoDXi6UgdLELSU5BqPPssaS-Y-CL8HxI5t09vb6jqeLsmgqvYjkujbghGie5mVy_6HgExaWDk/s1600/PH+Hearts+from+Nationwide+Children%27s+Hospital.bmp" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="156" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC5Fz8Z2fElVhb6EKLyeuxmTILAEQEh96n-O3nCmrh83Wr9iPjvOzTGKIZO1QGUYuK8VNoDXi6UgdLELSU5BqPPssaS-Y-CL8HxI5t09vb6jqeLsmgqvYjkujbghGie5mVy_6HgExaWDk/s320/PH+Hearts+from+Nationwide+Children%27s+Hospital.bmp" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image of PH Hearts from Nationwide Children's Hospital</td></tr>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Idiopathic
(or Primary) Pulmonary Arterial Hypertension<span style="mso-spacerun: yes;">
</span>is when pulmonary hypertension occurs without a known cause and is not
the result of another medical condition.<span style="mso-spacerun: yes;">
</span>IPAH is extremely rare, occurring in approximately 2 – 10 people per
million per year and although it affects men, women and children it is most
common in women between the ages of 20 – 45 years of age.<span style="mso-spacerun: yes;"> </span>When Julian was diagnosed it was not believed
to be a family or hereditary link, however this belief has changed over the
years, and it is possible that there may be this link.</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">IPAH
symptoms are rather common, and can be mistaken for Asthma, or in cases like
Julian and a friend of his, Epilepsy.<span style="mso-spacerun: yes;"> </span>Symptoms
include:</span></div>
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<li><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Breathlessness,
especially on exertion</span></li>
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during physical exertion</span></li>
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ankle and legs</span></li>
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<br />
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">It can be
diagnosed through a variety of tests (although not all)<span style="mso-spacerun: yes;"> </span>– Echocardiography, Six Minute Walk Test,
Blood tests, Sleep Studies, Lung scans & function studies, and Right Heart
Catheterisation (this is a definitive test to prove the diagnosis and confirm
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">IPAH has
a poor prognosis and <i style="mso-bidi-font-style: normal;">must</i> be
investigated.<span style="mso-spacerun: yes;"> </span>The outcomes from
treatments are largely dependent on the cause of the disease and how quickly
the diagnosis is made.<span style="mso-spacerun: yes;"> </span>When Julian was
diagnosed, we were told that the mortality rate for children was between 2 – 5
years (9 years ago now!).<span style="mso-spacerun: yes;"> </span> </span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Whilst
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easier over the years thanks to improvements in treatments and procedures.</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-22610093391944421182013-06-22T17:50:00.001+10:002013-06-22T17:50:29.627+10:0010 Years Ago To The Day<!--[if gte mso 9]><xml>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmOfz0SeB9VXsB0Vmj9xwcUx19I0dwRXoPpu_loeBJo2zC6OahJO4E9rrqKGe0vX1WtapuPcDfNV6sy6d3VDwjb1hOXsn4fJuO5hAiUW9MVm40H5PYS1pAWa2RsDO2WDwMZoJpwJBmltM/s1600/06-05-12+290.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmOfz0SeB9VXsB0Vmj9xwcUx19I0dwRXoPpu_loeBJo2zC6OahJO4E9rrqKGe0vX1WtapuPcDfNV6sy6d3VDwjb1hOXsn4fJuO5hAiUW9MVm40H5PYS1pAWa2RsDO2WDwMZoJpwJBmltM/s320/06-05-12+290.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Julian with his favourite author, John Flanagan</td></tr>
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<br />
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">10 years
ago to the day, Julian collapsed for the first time at my Nanna’s 80<sup>th</sup>
Birthday party.<span style="mso-spacerun: yes;"> </span>Imagine if you will, the
heart-wrenching sound of your first born (and only at the time) wailing at the
top of his lungs and as you and your husband race towards the sound you <i style="mso-bidi-font-style: normal;">know</i> came from your boy, you see him
collapsing in a heap before you can get to him.</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">“Oh my God, what’s happened?!”</span></i><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;"><span style="mso-spacerun: yes;">
</span>After it’s all settled down, you’re never really sure if you actually
yelled those words aloud or in your head.<span style="mso-spacerun: yes;">
</span>Hands are fluttering uselessly as your husband scoops him up on the
floor and together you bump your way through a gathering of your very large
family and head towards the office where your Mum has worked for the last 9
years of your life and see her holding the door open with the phone in her
hand, waiting to call the ambulance.<span style="mso-spacerun: yes;">
</span>Questions, so many questions are asked by the operator, and after you
hear “Call us back immediately if the situation worsens” you’re not even sure
you were very coherent when you answered them.</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Then,
when you hang up you see two concerned women hovering near the door.<span style="mso-spacerun: yes;"> </span>If you weren’t so worried and almost in tears
it would be a face palm moment.<span style="mso-spacerun: yes;"> </span>In your
hurry to get to a phone, you’ve raced past two of your Aunties who are
registered nurses!<span style="mso-spacerun: yes;"> </span>They are quick to
come in and check over your boy, and you can slowly see the awareness come back
into his eyes.<span style="mso-spacerun: yes;"> </span>Your nephew (who was
playing next to your son when he started wailing) is in tears waiting to see if
he’s okay, so you put your own worries aside to give him a cuddle, reassure him
and ask if he knows what happened.<span style="mso-spacerun: yes;"> </span>He
doesn’t.<span style="mso-spacerun: yes;"> </span>No one does.<span style="mso-spacerun: yes;"> </span>Julian was simply on a chair at a table when
he stumbled down and started crying for us.<span style="mso-spacerun: yes;"> </span></span></div>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">The
ambulance comes, and the Ambulance Officers joke around with all of us while
they check our 2 ½ year old over.<span style="mso-spacerun: yes;"> </span>He
looks so tiny on his Daddy’s lap with them kneeling down, putting a stethoscope
to his chest and doing their best to coax a smile out of him.<span style="mso-spacerun: yes;"> </span>His collapse has been put down to winding
himself.<span style="mso-spacerun: yes;"> </span>He’s an active boy, perhaps he
hit his chest getting up to the table?<span style="mso-spacerun: yes;">
</span>It’s possible, and heads are nodding, including ours.<span style="mso-spacerun: yes;"> </span>After all, the kids have all been pretty
rambunctious, enjoying their own little party with the baby-sitter in the other
room.<span style="mso-spacerun: yes;"> </span>The ambulance leaves without us,
and we go back to enjoying the company of family and waiting until it’s time to
cut the birthday cake.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">Looking
back, I can’t help but wonder what would have happened if we had decided to go
to hospital anyway.<span style="mso-spacerun: yes;"> </span>Would Julian have
been diagnosed earlier?<span style="mso-spacerun: yes;"> </span>I don’t believe
so.<span style="mso-spacerun: yes;"> </span>We had a long journey and a lot of –
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">10 years
ago to the day, Julian collapsed for the first time and set us on a journey we
will never forget.</span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-87874410942218081982013-06-18T13:03:00.002+10:002013-06-18T13:03:13.102+10:00"That's been going around a lot lately"<!--[if gte mso 9]><xml>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">It’s so
hard when your kids get sick (and boy oh boy would I love just one week without
someone calling out “Muuuummmmm!”), and even more so when there’s something “going
around”.<span style="mso-spacerun: yes;"> </span>You know, that ‘thing’ that’s always
going around when you call the school to let them know you have a sick child at
home.<span style="mso-spacerun: yes;"> </span>“Oh yeah, that’s been going around a lot
lately.”<span style="mso-spacerun: yes;"> </span>Crap.<span style="mso-spacerun: yes;"> </span>I hate it when they say that.<span style="mso-spacerun: yes;"> </span>It means that all my kids will drop like
flies from whatever ‘that’ is within days of each other!</span></div>
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<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">It’s
Julian this time.<span style="mso-spacerun: yes;"> </span>I got the dreaded
phone call from the high school yesterday.<span style="mso-spacerun: yes;">
</span>“Hi Coleen!”<span style="mso-spacerun: yes;"> </span>Why do they always
have to sound so darn <i>chipper</i> when they call???<span style="mso-spacerun: yes;">
</span>“Julian’s in the sick bay feeling ‘vomity’ in the stomach.”<span style="mso-spacerun: yes;"> </span>Blech.<span style="mso-spacerun: yes;">
</span>Vomity?<span style="mso-spacerun: yes;"> </span>Or struck down by the
dreaded ‘Maths Class’ that’s been going around lately???<span style="mso-spacerun: yes;"> </span>Unfortunately, it’s not ‘Maths Cl ass’ or even
‘Exam on today’, it’s Gastro and a particularly nasty version of it too.</span></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmydeNx9v3R5tw-hFygycq632Yzui13AhS0rXfCS5SUrUNca-PIOLzzC8yWBjZ3L16SZHqWRlIpTXNSXIfxH0TDPUN_Wx48P3JZiqqojgushT1IYWfkydDuE6foP4hVF5KVu2bHwa7Tas/s1600/20130618_112730.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmydeNx9v3R5tw-hFygycq632Yzui13AhS0rXfCS5SUrUNca-PIOLzzC8yWBjZ3L16SZHqWRlIpTXNSXIfxH0TDPUN_Wx48P3JZiqqojgushT1IYWfkydDuE6foP4hVF5KVu2bHwa7Tas/s320/20130618_112730.jpg" width="240" /></a></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">This
might sound a little strange, but it’s always so much easier when one of his
younger siblings has a stomach bug.<span style="mso-spacerun: yes;"> </span>It’s
off to the shops I go for Hydrolyte ice-blocks, Coke and Salt-and-Vinegar chips
(a brilliant combination by the way, one told to me by an Ambulance Officer
when Ayan had to go to hospital with Rotavirus last year), and then it’s just
sit until the call of “Muuuummmm!” until it’s run its course.<span style="mso-spacerun: yes;"> </span>With Julian though, it’s much different.<span style="mso-spacerun: yes;"> </span>Nigel and I are on egg shells, counting how
many times he’s been sick or has had to go to the toilet.<span style="mso-spacerun: yes;"> </span>Too many and it’s off to the doctors to have
an injection to stop the vomiting, or if it’s bad enough, a trip to the
hospital a dose of Ondansetron and get put on a drip.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">He seems
to be coming good now though, so no trip to the doctor or hospital this time
around, and he’ll be home recovering tomorrow.<span style="mso-spacerun: yes;">
</span>Keep your fingers crossed that I don’t hear “Muuuuummmmm!” anytime soon
. . . <span style="mso-spacerun: yes;"> </span></span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"></span></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0tag:blogger.com,1999:blog-1116489945980282596.post-54453118725758338472013-06-12T16:48:00.000+10:002013-06-12T16:48:10.824+10:00Every rock needs a solid foundation<!--[if gte mso 9]><xml>
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<![endif]--><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Recently
I saw an image on Facebook where someone had created a number of circles – like
a target – showing how comfort should be given to people in a crisis.<span style="mso-spacerun: yes;"> </span>The basis was that those in the larger
circles give comfort to those in the smaller circles, all the way into the ‘bulls-eye’.<span style="mso-spacerun: yes;"> </span>Those in the smaller circles can ask for
comfort from those in the larger circles, however not vice versa.<span style="mso-spacerun: yes;"> </span>The closer you are to the crisis, the more
comfort you’re supposed to receive, not give.</span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">When
I looked at this image, I wondered who the rock is for ‘the rock’ of the family
this crisis is affecting.<span style="mso-spacerun: yes;"> </span>In a lot of
families, the Mum is the rock for everyone else, and it’s the same way in
mine.<span style="mso-spacerun: yes;"> </span>Although I know that I can turn to
Nigel whenever I need to, I also know that I ‘cope’ better with Julian's condition
than he does.<span style="mso-spacerun: yes;"> </span>Maybe it’s because I grew
up with an older brother with a life-threatening condition.<span style="mso-spacerun: yes;"> </span>I’m also the perfect person to help his
younger brothers and sisters through their worries, because I’ve been in their
position as well.<span style="mso-spacerun: yes;"> </span>What I do know is that
I have learned to ‘shrink’ all the worries down and hold it all in one tight
ball.<span style="mso-spacerun: yes;"> </span>If I didn’t, I’d explode!<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Within
our family, we have a lot of these ‘targets’ all overlapping each other.<span style="mso-spacerun: yes;"> </span>Obviously Julian has one bulls-eye, and the
outer circles are Nigel and I, his siblings, his grandparents, uncles, aunts,
cousins, friends, teachers, etc.<span style="mso-spacerun: yes;">
</span>BUT!<span style="mso-spacerun: yes;"> </span>Each of his siblings also
has a ‘bulls-eye’, just like Nigel and I do, and Julian is learning to be one of
our outer circles as well.<span style="mso-spacerun: yes;"> </span>Just as we
are still learning to help him cope with what is happening in his life, he is
also learning to help us cope with having a son and brother with a
life-threatening condition.<span style="mso-spacerun: yes;"> </span>It is as
hard on us as it is on him, just in a different way.<span style="mso-spacerun: yes;"> </span>While we can never really understand what it’s
like to have this threat hanging over his head every day, neither can he truly
understand what it’s like for us.<span style="mso-spacerun: yes;"> </span>Nigel
and I live every day with the knowledge that we may outlive our own child -
something no parent should ever have to live with – and his younger siblings
live with the knowledge that they may end up growing up without their much
loved big brother.<span style="mso-spacerun: yes;"> </span>I know how this feels
from both sides, as a younger sister and as a Mother, and it is <i style="mso-bidi-font-style: normal;">hard</i>.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJkv_XC9KEzNs6UqIYsE8NvoF3jhiDhk34lOsOWCPHOBDKOvzmMlQ5XDnZf-Att-KEL-c_SfdvnhhWnmtmqS0DcvcqOi37rJVpo-ObP1_owRdsfHpkqj7kEyMSiP-zXRLZO0BS_ICW22c/s1600/IMG_2050.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJkv_XC9KEzNs6UqIYsE8NvoF3jhiDhk34lOsOWCPHOBDKOvzmMlQ5XDnZf-Att-KEL-c_SfdvnhhWnmtmqS0DcvcqOi37rJVpo-ObP1_owRdsfHpkqj7kEyMSiP-zXRLZO0BS_ICW22c/s320/IMG_2050.JPG" width="320" /></a></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-margin-top-alt: auto;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">So,
in a family like ours, each ‘rock’ has to have a firm foundation, and that
foundation is formed by the outer circles.<span style="mso-spacerun: yes;">
</span>Nigel and I are each other's rocks, but I also know that if either of us
fail to cope, then our foundation is wide enough that there are other ‘rocks’
for us to turn to.<span style="mso-spacerun: yes;"> </span>I know that I lean on
my own Mum a lot, and her rock is my Dad, just as she is his.<span style="mso-spacerun: yes;"> </span>I also know that they can turn to my brother,
and he can turn to his wife.<span style="mso-spacerun: yes;"> </span>Our
foundation is large and it is strong.<span style="mso-spacerun: yes;"> </span>It’s
not just made up of one rock, but many.<span style="mso-spacerun: yes;">
</span>If it wasn’t, we would all crumble.</span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCKqV4lXohdJWFOOST-KkMM6BwLSwNFLwpMzUTyjm0ZEVjuGCdazGTr68p_2AWkPe483fto5RYdzRAOA06lGz6Gunzbm23wB4hBTx1YbaxnKZ3xL_xpvdFXO401NRi_fstFFyJ8vgwWOE/s1600/images.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a></div>
Saving Juleshttp://www.blogger.com/profile/14356939237975236396noreply@blogger.com0