tag:blogger.com,1999:blog-47698667465094293112024-03-14T01:17:04.935+10:00Life in a Bubble of FunMy journey and antics of my family, including dealing with a child with Cystic Fibrosis, and everything that crosses our paths. It's just a glimpse into our Life in a Bubble of Fun. Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.comBlogger56125tag:blogger.com,1999:blog-4769866746509429311.post-83030968052376761342017-05-12T13:31:00.000+10:002017-05-12T13:33:00.754+10:00Trying to put the pieces back togetherToday has broken me.<br />
<br />
It started well, usual hospital routine stuff. Seeing Drs and having treatments and medications etc.<br />
<br />
Cadel had a dental appointment booked months ago for the hospital here today so we went along. Cadel has issues with anyone touching his mouth etc and won't let us brush his teeth and previous appointments with the Dentist have never gone well. Basically the dentist had to force open his mouth. There were tears and even screaming. It's hard to watch and try and convince him it's all ok.<br />
Then the Dentist said he could have a Star Wars Sticker. Well Cadel couldn't decide on one and wanted 4 so the tears started and we ended up leaving with a yoyo! That wasn't good enough and Cadel wanted to go back and started hitting me and having a complete meltdown. I held it together, just.<br />
<br />
When he got back to his room he let me have it. Full complete meltdown, tears, screaming, punching and kicking me. I stepped out to take a breath.<br />
<br />
This is only half the day, there is still more treatments and medications to go. The worst is still to come today when he has to have the dressing taken down and the needle in his port-a-cath changed. That is always a trauma for him.<br />
<br />
It never ever gets easier to see your child in pain or just over it! He is coming to an age where he realises, this is what will be the rest of his life. Daily treatments and medications.<br />
<br />
I know we try and stay positive and show positive things but days like today are super tough and happen a lot but we don't let you know the nitty gritty daily struggles. But maybe we should, so you know that if we are having a bad day and seem out of sorts this may be why we seem a bit off but still have a smile on our face, trying to hold it all together.<br />
<br />
K<br />
***kept this to post later***<br />
From FebruaryLife in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com1tag:blogger.com,1999:blog-4769866746509429311.post-71104997263925140492016-02-02T19:16:00.001+10:002016-02-02T19:19:06.039+10:00Another marker on this road passed.<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Another big milestone. </span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I know I use that word a lot but I'm not sure how else to say it. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Milestone is defined as : </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="ds-list" style="box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><b style="box-sizing: inherit;">1. </b>A stone marker set up on a roadside to indicate the distance in miles from a given point.</span></div><div class="ds-list" style="box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><b style="box-sizing: inherit;">2. </b>An important event, as in a child's development, the history of a nation, or the advancement of knowledge in a field; a turning point.</span></div></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">I could say that both definitions fit with Cadel's journey. I feel like sometimes this CF road we have been put onto has those markers and it feels great to be getting to them and passing them but it's also many other emotions. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">Cadel started school last week. He started school. Wow! Just letting that sink in is crazy and stirs up so much emotion. I flash forward to him being able to read, do maths do all the projects and class talks like his brother and sister have. I also flash even more into the future to him </span><span style="background-color: rgba(255, 255, 255, 0);">graduating, going to high school and then if he chooses University. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">I also flash back though. I flash back to sitting in his hospital room, I can see it all clearly. We had been told that the team that look after Cadel were having a meeting to discuss Cadel's treatment going forward to make sure they were all on the same page. It seemed to take forever for them to come see us and tell us what they decided. Little did we know.</span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">In these flash backs it's all clear as day. I see all the glass windows, watching people walk pass and someone closing the glass door, the doors were never shut in HDU, ( the High Dependency Unit) I see Cadel's Dr sitting across from me, her face looks stressed and her eyes look red like she had been crying. I see the ICU Dr sitting beside her in his scrubs. We have never met before and I remember looking at the embroidered name on his shirt and wondering why he was there, sitting there in silence with a look on his face that can only be described as worried, concerned and nervous all rolled into one. I can see Cadel and his pale little frame laying on the bed with the noise of the high flow oxygen as it forces high rates of oxygen into his sick, diseased and tired lungs. I can see Scott sitting beside me on the makeshift bed. He grabs my hand as those terrible horrible words are tumbling off the Drs lips. I remember someone passing me a box of tissues and I remember going numb after the word palliative care is spat out. I say spat out but I know it was said with such care and compassion but it always seemed a dirty word as that word seemed to change everything in our world. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">After the Drs leave and Scott and I are free to discuss the bad words that have just been said I remember clearly saying. "This can't be happening, he'll never fall in love, he'll never have a first kiss, he'll never even get to go to school."</span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">It doesn't make sense, the order in which I said things but sentences rarely do when you've just been told your son only has months left to live. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">Cadel has gotten to go to school. Cadel has reached major milestone moments and that is massive, huge, enormous and amazing. But and its a big BUT it could have been a very different day last week. We could have been grieving our amazing little man and not celebrating his first day school. We could have been sitting at home upset and thinking about what could have been instead of going out together as a couple and celebrating that we have three, count them, 1,2,3 munchkins in school! We are positive and remain positive about Cadel's future, we believe that has helped us get to this point with his health but to be honest it is never far from our minds that things could have been the complete opposite. We don't like to burden our friends and family with these thoughts but we do talk about it to each other a lot. If we didn't it would bottle up and possibly explode. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">We are beyond happy with all the steps that have been taken to help our little guy settle into school. We know that the school and staff have his best interests at heart and listen to this crazy control freak of a Mumma. I see already that they have taken their own steps towards making sure Cadel's health is a priority. Many more milestones will be met at the school and we will celebrate every single one, the small and the big. That's how we roll. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">We are beyond excited that we get to share our little man and he can make more people fall in love with his big blue eyes and beautiful personality. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">Sorry it's a long one and a little late and a long time between blogs but sometimes when things are good I don't need the therapy of writing. I will try and blog some more of the good to share with you all. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">Thanks for reading. </span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);">K</span></div><div class="ds-list" style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; box-sizing: inherit; margin-left: 0.5cm; overflow: visible;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-s66A14PLPj0/VrB0h4ETnzI/AAAAAAAAAHY/XzX5TKxOES4/s640/blogger-image--504775816.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-s66A14PLPj0/VrB0h4ETnzI/AAAAAAAAAHY/XzX5TKxOES4/s640/blogger-image--504775816.jpg"></a></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-5056234943712472422015-10-07T17:18:00.001+10:002015-10-07T18:53:09.672+10:00Untangling the mess<div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I'm using this as a place to vent to get out the mess in my head. I know most of my blogs are usually this but this afternoon I just need to untangle this mess so I can move on. </span></div><div><br></div><div>As we drive home from dropping off your sister to her dance class I glance back to see your eyes close. It's been a long day back at Kindy, you've had two weeks off. I think, that's ok I'm let him catch a few z's while we do the 15 minute drive back home. As we pull into the garage I prepare myself to wake you. I don't want to be the bad guy but I have to. </div><div><br></div><div>I have to wake you my sleepy child, I lift you out of the car and your eyes open briefly. I explain that you need to have a shower and then do your Physio. You just close your eyes again. I try to stand you up but your knees buckle. I want to let you sleep my munchkin. I don't want to be the bad guy. I carry you to the bathroom and start to strip you off. This is when you really get upset and start fighting it. Screaming and crying I notice that you still have a bandaid on you from when your port was accessed last week. You have a big dislike about removing the bandaids and I take this opportunity while you are angry at me anyway to take it off. It comes off with ease as it was well and truly ready but it angers you even more. You become louder and fight stronger against having a shower. I end up winning and get you in and washed and leave you to wash the suds off as I grab your pyjamas and prepare the nebuliser for your Physio. I return to you still standing, still sobbing and covered in suds. I don't want to be the bad guy but I put you under the water to wash you off. We wrestle as I dry you off and get you dressed. Not an easy task when you are kicking, screaming and trying to take off the clothing I have put on. I don't want to be the bad guy. I take you over to do the Physio session and your fight has grown even stronger. You push off the nebuliser and close your mouth tight not letting me get the mouthpiece in. I plead with you to open your mouth, that it will easier on both of us. I don't want to be the bad guy but I grab the mask and attach it and I force the machine onto your face. I hate this just as much as you. I don't want to do it but it needs to be done. Eventually you surrender and stop fighting so hard. The nebuliser beeps. It's finished and we just hug in silence. We both just hold each other silently apologising for what just happened. I don't want to be the bad guy! We finish the session and you are happy and smiling again but it has left its mark on me. </div><div><br></div><div>CF and its crappy shitty ways have left its scars on me once again emotionally. I don't want to be the bad guy when CF is. The invisibility of this body and soul destroying disease affects us all. Not only does it scar my precious boy and his lungs but it destroys me mentally. You may not see it but it takes a little piece everytime if I let it. I hide it well too! I hide it behind my smile as I face the day and try not to show my scars. I hide it as I don't want to bother you with my daily troubles. I hide it from my little boy as he needs to see the smile not the scars it leaves on me. I hide it from myself too keep the demons at bay. I am and I will take those pieces back from you CF. I will fight you too! Screw you CF you've taken enough! </div><div><br></div><div>Thanks for reading and letting me vent. </div><div><br></div><div>K </div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-28959948864906981332015-09-26T07:44:00.001+10:002015-09-26T08:40:43.016+10:00Live in the moment.There is nothing like the threat of losing something you love to make you get out there and enjoy life a little bit more. <div><br></div><div>When we were sat down and given "the chat" about Cadel it devastated our worlds. I thought life as we knew it was over. In a way I was right. It changed how we looked at our lives and how we spent our days. </div><div><br></div><div>We were always pretty positive people and enjoyed our family time but this multiplied the positivity and family time in a way we could have never imagined, and all in a time when it would have been quite easy to curl up into a ball and hide away from the world. We made a choice to get out there and to explore it. </div><div><br></div><div>All of these choices have led us to enjoy every moment we spend together. Whether it be sitting on the couch watching a movie together, just sitting outside in the backyard, travelling around or climbing a mountain as a family. </div><div><br></div><div>These September school holidays are a time when our family usually escapes the everyday world and goes on a holiday. This year we are doing it a little bit different. We have decided to have a staycation. What is a staycation you ask? </div><div>This is when we stay home but we do day trips to our surrounding areas and play tourist. Doing things we have always wanted to do and explore everything that our local world has to offer. I find we take these places and things for granted. When you travel interstate etc you tend to make sure you take advantage of such touristy things but you forget how much fun you can have just on your doorstop. </div><div><br></div><div>Our Staycation has been planned for months as we constantly added more things to the list. We have managed to cross off quite a few already in the first and are looking forward to the second week. We have climbed mountains, seen amazing flower displays and gardens, gone on secret missions, had dinner at sunset at the beach with our favourite takeaway, gone to the Zoo and strolled through markets. Most importantly though we have laughed, giggled, talked and shared so much. We have enjoyed each other's company (so far) and there has been minimal niggling fights between the kids. (Touch wood) </div><div><br></div><div>Of course all of this could be interrupted at any moment. All of our best laid plans can come unravelled at the sound of a moist cough. CF is always there hovering over our heads and it sometimes interrupts the day with having to pause to do treatments and medications or even to make a choice about what we do on that day when it is really crowded or the environment or situation is just not safe for Cadel. </div><div><br></div><div>We are actually living with that threat to these holidays at the moment. Cadel's cough changed mid week and we made the call to duck down to the hospital to have him reviewed by his CF Dr. The Dr wasn't overally happy with his health at the moment so we have changed a few medications and added in some more treatments and we need to see the Dr again early next week with the thought of a possible immediate admission. </div><div><br></div><div>What does that mean for our staycation, well it means that we readjust, for the moment we fit in those extra medications and treatments into our planned days. We try and do as much as we can before that next review but be wary of Cadel and his health and energy levels. If he does get admitted we look at our list of planned day trips and see what we can still do. </div><div><br></div><div>It's all how you look at life. Cadel's condition made our family look at life in a positive way. It made us treasure and cherish every moment and not waste a second. Yes his condition changed our lives but I think for the better. Sometimes we reflect on the day's activities and think back to a few years ago and think we would have never gone out and done what we did that day. </div><div><br></div><div>I hope that the kids continue to live their lives this way and get out and explore the world and not sit by and let it all just float past. I hope that they remember these simple days and adventures in a fond way and that they do the same as they grow older. </div><div><br></div><div>I want them to get out there and be a participant in life and not a spectator! </div><div><br></div><div>❤️ K</div><br><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-st5lVF6L2aE/VgXNaNxDOMI/AAAAAAAAAHI/b0vTWBfJzM8/s640/blogger-image-1485503183.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-st5lVF6L2aE/VgXNaNxDOMI/AAAAAAAAAHI/b0vTWBfJzM8/s640/blogger-image-1485503183.jpg"></a></div><br></div><br></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-2869165746522889232015-04-28T17:43:00.001+10:002015-04-28T19:39:16.340+10:00Yes! No! Yes! No! Yes!I stood back out of sight, hidden behind the glass. I couldn't hear what was going on I just watched like an audience member of a silent movie. I watched as you stood there watching the kids play. I wondered what was going through your head. I hoped that you had the confidence to join in. I hoped that you didn't feel left out. I hoped that you didn't feel different. I hoped that you felt secure. I willed myself to move. I could stand here all day watching and hoping but that won't help you. As I turned and walked out I hoped that I am doing the right thing. That you fit in, that you make friends, that you let others in and they find out how wonderful you are and how much you can contribute to this world. I hoped that they realise how much you will make them a better person just by knowing you. I know that is how I feel. I hope that you can teach them all a little something. Even if it is to get up and fight, especially when life kicks you to the ground more times then you count up to! <div>All I can do is hope that I have done enough to help prepare you for these big moments that will soon pass and be small memories. </div><div><br></div><div>This morning I dropped Cadel off to Kindy as I do most Tuesday's and Wednesday's but today felt different. I am not sure why but it did. This week the signs went up at school announcing that they are taking enrolments for next year. This scared me and gave me goosebumps. I am not entirely sure that he is ready for school or that I am ready for him to go to school. He is my baby. He will be my last to have that first day at school but then throw in all the challenges that Cadel and us as a family have faced and whoa I want to chuck the brakes on. I know school next year is a a long time away and he will learn new things at Kindy, his speech will improve, it already is, he will learn to use the toilet independently and we are aiming to have him swallowing his enzymes by school starting too. It's a lot of pressure for the little guy and for me. I feel very much under pressure to have it all done and sorted so that Cadel can slot into school like every other average 4/5 year old. I know he is far from the average 4/5 year old but I want him to have the average experience at school and not be left behind. </div><div><br></div><div>This morning when I dropped off Cadel he wasn't that keen on going, admissions, illness and other family circumstances have interrupted his kindy routine so we are slowly get back into it. One of the boys came running over and said "Hello Cadel" "Do you want to play ninjas with us?" It warmed my heart because it meant that the other kids were including him. They weren't worried that he doesn't speak much, or that he still wears nappies, that he needs medicines when eating or that he has a funny button on his tummy. They wanted him to play with them. Such a relief for this worrying Mumma. Relief and confirmation that I am doing the right thing. All my hopes are being answered. I will never stop hoping or worrying but we are moving forward. Sometimes a little faster then I would like but we are moving forward which is big and something to be celebrated and I am not going to let him take a step back. </div><div><br></div><div>Take big steps my lil' man and you will change the world with those steps everytime. I will be here as always waiting to catch you if you fall and give you a hand to stand back up again. </div><div><br></div><div>K </div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com2tag:blogger.com,1999:blog-4769866746509429311.post-17681263556043848842015-04-11T10:25:00.001+10:002015-04-11T10:25:36.988+10:00The therapy of blogging.<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Hello Strangers! </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Well I was just reminded through the memories notifications ( I love this feature as I am a sentimentalist and love looking back in time!) on Facebook that on this day 2 years ago I started my little blog. And I'm terribly sorry but I think it's been almost 6 months since I have written and shared on the blog. To my faithful followers for that I am so sorry. I started writing about our little bubble of fun in a more turbulent time of our lives. We had been told that we had only had months left with our two year old son and writing became very therapeutic for me. I could write down what I sometimes couldn't say out loud verbally. It helped immensely and many people far and wide around the world read my humble little words and got a glimpse into our little world. It has helped to spread awareness for Cystic Fibrosis too and all that our lil man battles with every day. I was always amazed to see the stats of where my readers were from and truly excited that it was reaching so many people. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br><div>So big apologies for leaving you all hanging for so long but I have to say that things have been going well. Hence my need for less therapy in the way of my writing. Although as I write this I am sitting beside Cadel in his hospital bed he has been relatively well. We were told by one of his Drs that they hadn't expected him to make it to his 3rd Birthday, here he is almost 4 1/2, going to Kindy and we are soon to start filling out forms to start school! He is in for a two week round of IV antibiotics and we are nearing the end. He is doing well and copes with everything that is thrown his way. These admissions are few and far between these days and are just blips on the radar. I feel it's harder to adjust for us now as we aren't as used to an admission as we used to be! Strange isn't it. How routine something can become and how strange it feels when it occurs less often. </div><div><br></div><div>Anywho I already have a few blog ideas in my scrambled brain so I am committing to sharing and inviting you all into our world once again and I hope that you continue to enjoy your view into our Life in a Bubble of Fun. </div><div><br></div><div>K</div></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-30682757380795147142014-11-03T23:33:00.001+10:002014-11-04T06:55:38.216+10:00Crazy daysWell hello there readers. Sorry it's been so long between blogs but what can I say but we have been busy loving life. <div>Busy, yes very busy. I'm often told how organised I am, and asked how do I do what I do everyday, well I'm going to give you a little insight into my day. A Monday, not typically a busy day in my life but it may read very hectic and crazy to you. </div><div><br></div><div>Well it started just after midnight when Cadel was screaming out. He wanted me to sleep in his bed with him as he needed some comfort. So I obliged. Luckily the munchkin has a queen size bed for such occurrences. I tossed and turned most of the rest of the night though, thinking of the busy week ahead. Luckily I had taken my phone and charger into his room as the alarm sounded at 4.50am. The alarm read... 'Run your cares away' I turned off the alarm, rolled over and lifted the blind to see gloomy grey skies. I laid there for a while contemplating whether to run or not and in the end snuck out of his bed and was dressed and out the door just after 5am. I had a tough session of interval training in mind and I did it, cut it a little shorter then I had hoped as time was running out but I knocked up 8.5km on the good old Strava app. I walked into the house around 6am and everyone else but Cadel was wide awake. I cooled down for all of about 5 mins then grabbed a snoozy Cadel to do his chest Physio session. 30mins of pounding on his chest to move that sticky mucous. 30mins to sit and not be able to do anything else but percuss his chest and catch up on Facebook. Yes multitasking at it's finest in 2014. He slept through the session until the last few minutes and was ready for the day as I finished up. I jumped up, finished getting the big kids school lunches ready, fruit snack, check, drink bottle, check. Then thankfully wonderful hubby had boiled an egg for me and cooked some toast. But that had to wait. While I waited for the kettle to boil to make my favourite cup of tea, peppermint, I made up Cadel's medicines for the day. About 6 different medications, today was an easy one. Ok the jugs boiled, I grab some clothes for Cadel ready for hubby to dress him but not before he also helps me out by doing Cadel's puffer and nebuliser. So so thankful his job is close to home and he can help out of a morning! Finally I sit down to a warm cup of tea and cold toast. Scoff that down Kristy, I say in my head, time is ticking and I still had to do my daughters hair. Luckily today is a dance day after school. We have the donut dancer bun down to a fine art. Spray with loads of hair spray and it saves time this afternoon. Ok kids are all dressed, say goodbye to Hubby, now I need to change my smelly running shirt before I walk the kids to school. So I set the kids up with some cartoons to keep them happy while I finish up. Ok time to go. Better pack the umbrellas the sky is still gloomy out there. Oh and don't forget the drink bottles, I have plans to walk a rather hilly another, oh 7 or so kilometres. We get to school with time to spare and Cadel and I after saying our goodbyes set off on our walk. He doesn't seem too impressed to be trapped in the pram so I make a game out of looking for different coloured cars and he seems happy. Home again, it's just after 10am and I've racked up over 16km this morning. Whoa. I feel sooo energised. Quick shower and change into swimmers and make sure the bags all packed to head off to a hydrotherapy session for Cadel. Cadel loves his time in the pool. He is starting to share the toys more now with the other kids and today he decides he is confident enough to dive ( from sitting) into the pool today. Yay!!! An hour later and it's 12pm, we both change and head to the supermarket nearby to restock the depleted fridge at home. The 40min drive home is broken up by talking to Hubby in his lunch break about how swimming went. We are almost home and I remember I need to pick up some scripts for Cadel. We love our local chemist. He knows us very well and greets us with a big smile. He helps us out to the car with the boxes of medications and we head home. Just enough time now at 1.30pm to change a nappy, and grab some lunch. Luckily we had some leftovers. Leftovers are the life savers of a busy mum!!! I hang out some washing and quickly chuck on a brush of make up to head out the door at 2.30pm to ensure a park at school. ( don't get me started on that crazy car park!!!) I use this time to have some adult talk with friends at the school but Cadel has other ideas and has a tantrum for the full 30min wait about not being allowed on the playground equipment. ( silly rules from the school!) Finally the bell goes and the madness begins as we head off to dancing. I send in my daughter to dancing and then spend the next 30 mins in the car with the boys being the referee between their niggles. We sit outside to prevent Cadel from catching anything going around as the studio can be very crowded on Mondays. We drive into the garage at home just before 4.30 and I race inside to put the roast lamb on for dinner. It cooks perfectly and the kids are showered and eating dinner at 6pm. Phew. That's always my plan but rarely does it come off. They also get homework done! Yay! I clean up after dinner, pack the school lunch boxes for tomorrow and put away all of Cadel's medications I picked up today. Kiss the kids goodnight and tuck them in. I put two loads of washing on, pack away 3 kids washing that has been overflowing in the baskets for over a week and I sit and chill out with hubby to watch our favourite show. I'm lucky, tonight it is hubby's turn to do medications and overnight feed formula mixing. We take turns every night so that it doesn't get too much for each of us. Just to keep it interesting Cadel starts having a little coughing fit. It is dry and productive, which means he is coughing up the mucous. Just the stress we need before he has an anaesthetic and procedure done this week. It passes and he goes back to sleep. Finally I carry Cadel off into bed and check my phone. I have messages on Facebook, Wait what!!! Apparently my sister was on Gold Coast Cops tonight. Hubby and I go searching for the show online as we missed it on TV. We find it and give a huge sigh of relief to the fact that she was the girl helping the intoxicated and vomitting nightclub goer! Ok brain, time to switch off now and sleep after a nice shower. Nope brain has other ideas. And this is where I am at 11.30pm at night blogging all this down so that my brain feels clear and I can sleep. Hope it works. </div><div><br></div><div>I have to get up and do it all again tomorrow, do I workout in the morning or afternoon, don't forget about Cadel's Speechy appointment and then straight to another hydrotherapy session. </div><div><br></div><div>Oh well Kristy, you just have to get up and at em to fight on another day with a smile on my face because all of this means we have our little boy here with us. </div><div><br></div><div>K </div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-57262291757784034892014-05-07T15:25:00.001+10:002014-05-14T19:47:04.913+10:00I HATE YOU SO MUCH RIGHT NOW!Sorry about my shouty capitals and just a warning there is a massive rant ahead! I know that everyone has their own struggles and battles but this is mine and my families. I wrote this at the start of an admission and just kept adding things in. It helps for me to put it out to the universe and not let it fester in my mind. <br>
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I hate hospital admissions.<br>
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I hate holding you down while oxygen is taped to your face.<br>
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I hate trying to explain to you why you need the oxygen.<br>
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I hate being the one to hold you down while a 3/4 inch needle is pushed into your chest to access your port.<br>
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I hate having to wipe away your tears.<br>
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I hate having to again hold you down while they try and take blood from a finger prick unsuccessfully, not once but twice.<br>
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I hate watching the pity in people's eyes as they wheel you in the bed around to have an X-ray.<br>
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I hate trying to keep you happy when you are just over the hospital on day one.<br>
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I hate feeling useless.<br>
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I hate that we are away from your Dad, brother and sister. <br>
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I hate waking you, my sleepy bub to have X-rays, blood tests, for doctors to listen to your chest.<br>
<br>I hate having to rip off adhesive from your groin, just so that the nurses can test your wee, caught in a bag stuck to you all day waiting....waiting....waiting...for that little wee sample, twice a week during admissions. <div><br></div><div>I hate sitting and watching a monitor for those numbers to be good and the alarms not to sound if your oxygen levels dip. <br><div><br></div><div>I <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">hate that sometimes the Drs and Nurses won't listen to me and my mother's intuition. </span></div><div><br></div><div>I hate that you yell at me, asking for it all to stop and I can't make it all stop. </div><div><br></div><div>I hate having to distract you while blood is once again squeezed from your finger. 8 times in 3 days is just too much!!!</div><div><br></div><div>I hate hearing the pained and frightened cry when they take a swab sample with a huge cotton bud up your nose. </div><div><br></div><div>I hate trying to remove the stickers left from the ECG machine, they are super sticky. </div><div><br></div><div>I hate missing out on my Mother's Day at home and not doing what we actually had planned for the day. </div><div><br></div><div>I hate that I miss your brother's class performance on assembly. </div><div><br></div><div>I hate that your brother and sister need to speak to school guidance counsellors because they are so anxious about admissions. </div><div><br></div><div>I hate that I need to ask for a social worker to help me find the right words to help your brother and sister deal with your multiple admissions and the big conversation of what having CF means for your future. </div><div><br></div><div>I hate that it takes 4, yes 4 nurses and myself to hold you down as they again access your port with a 3/4 inch needle! It sucks that have to do this weekly when you are unwell!!!</div><div><br></div><div>I hate watching your little precious body fight.</div><div><br></div><div>
I HATE CYSTIC FIBROSIS!!!!!!!!</div><div><br></div><div>K<br>
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</div></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com7tag:blogger.com,1999:blog-4769866746509429311.post-24087162007690074162014-04-10T14:16:00.001+10:002014-04-10T14:28:20.366+10:00Taking a Calculated Risk!Going to the movies as a family hardly seems like a risk but here is why we think it is for our family. <div><br></div><div>As most of you know, Cadel has a very low immune system and is prone to picking up bugs quite easily so sitting in an air conditioned, crowded room in the school holidays for up to two hours at a time is a very stressful time and is what we call a calculated risk. </div><div><br></div><div>We want the kids to have a "normal" as can be life and that means doing what every family loves to do and go to the movies. We tend to do it around school holidays too as that's when the best movies are out, of course! </div><div><br></div><div>We plan it out though and think about how it all is going to work. We tend to go to movies that have been released for a while already so that the cinema isn't packed out, we also choose the sessions more carefully, mid afternoon seems to be quiet, it's too late after lunch and not close enough for dinner. We also get there early and pick the seats that no one wants. We usually sit in the back row of the front section. No one usually wants to sit there but there is no problem with these seats and their view. </div><div><br></div><div>By doing all these things we are able to try and control the environment somewhat as we aren't in an overcrowded room, sitting around people in case they are sick and best of all we get a section of seats to ourselves! </div><div><br></div><div>We don't go to the movies often but when we do these are the things that we need to put into place so that it remains being a positive experience for us all. Small tiny, little things, big plans but treasured memories of laughing, crying and chilling out together as a family. </div><div><br></div><div>K</div><div><br></div><div><br></div><div><br></div><div><br></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com2tag:blogger.com,1999:blog-4769866746509429311.post-85810376530272344212014-03-07T16:04:00.001+10:002014-03-07T16:04:10.353+10:00Letter Z ( A to Z of CF 2014)Well here we are at the end of the alphabet and at the end of the A to Z of CF for 2014. <div><br></div><div>Z is for in the zone. This is something that Cadel does when he is having treatments or tests done that he doesn't like and unfortunately that happens a lot. </div><div><br></div><div>With his port-a-cath needing to be needled every 6-8 weeks he has developed a strategy where he will close his eyes and go into 'the zone'. Don't get me wrong he still cries and kicks up a fuss but he kind of 'zones out' and who can blame him. </div><div><br></div><div>I have been known to go into a zone too. It happens when I have to be a carer to Cadel and I need to take off my Mum hat. This happens when I need to hold him down during needling of his port-a-cath, re-inserting an NG tube or Mic-key button. </div><div><br></div><div>I do this as does Cadel to cope with the situation that is happening around me. As a Mum you don't want to hurt or see your child in distress but when I'm holding him down to do these things I know that they need to be done and that it's in his best interest. We all have different ways of coping and going into 'the zone' seems to Cadel and my way of coping. </div><div><br></div><div>I hope that you have enjoyed, learnt and shared our journey with the A to Z of CF. Thanks for reading.....</div><div><br></div><div>K</div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-44468786662816362832014-03-07T15:46:00.001+10:002014-03-07T15:46:45.919+10:00Letter Y ( A to Z of CF 2014)Yes! <div><br><div>Three little letters that are hard to say sometimes. It's hard to ask for help and sometimes even harder to say yes to help. </div><div><br></div><div>It's something I'm trying to work on. It's easy to just say, "no it's ok" and then struggle on but I am working on putting myself out there and asking for that hand when I need it most. </div><div><br></div><div>There are times especially when Cadel is unwell or admitted to hospital that we trudge on but need that little bit of extra help or support whether it's someone to just come and visit us or take the kids so they have a break and we do too. It's the simple little things like this that mean the most. </div><div><br></div><div>We have wonderful friends who won't take no for an answer and help us out, they can see the signs, they know how to help when we need it the most and we are very privileged and honoured to call them our friends. </div><div><br></div><div>K</div></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-71880209908355045382014-03-06T12:40:00.001+10:002014-03-06T12:40:52.188+10:00Letter X (A to Z of CF 2014)X-rays. <div><br></div><div>Again something else that I have lost count of how many Cadel has had. The Drs are always conscious of excess exposure with X-rays and will only do them as needed. </div><div><br></div><div>I am with Cadel during almost all of his X-rays and he knows the routine, pointing out the protective gown for me to wear and sitting in the chair like a pro. Just another way in which out lil' champ just gets on with what life has thrown at him. We can all learn a lot from him I think. </div><div><br></div><div>K</div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-82027467886166335162014-03-04T12:36:00.001+10:002014-03-04T12:36:35.451+10:00Letter W ( A to Z of CF 2014)<b>Water</b>. <div><br></div><div>Hydrotherapy is something that the palliative care team have funded for us over the past 6 months or so. Cadel was not a big fan of water and didn't like to even swim in our fabulous pool that was donated to our family to help create family memories and help with Cadel's Physio. </div><div>(We are forever grateful to Queensland Family Pools for our fab pool!!!!)</div><div><br></div><div>We attend Hydotherapy twice a week, the time varies on how Cadel is feeling and he drives what he does in the session. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The greatPhysiotherapist has got him confident in the water, safe in the water and doing some great exercise. </span></div><div><br></div><div>The benefits are paying off in spades. Cadel's health has been great, his exercise tolerance has increased and the time I get to spend with him doing something he enjoys is great for the soul. </div><div><br></div><div>Just the pressure from the water on Cadel's chest changes the way in which he breathes, helping to shift the mucous. The Physio's also then get him to do blowing exercises, swinging on rings and going under the water. Going under the water was a huge deal as it was a big fear for Cadel as it is for any child but add in the change of breathing in and it's a big ask. For a child that has been on bi pap and oxygen previously that change in breath is a massive effort and a big fear to conquer. He is doing so well now though and has even stopped having a cough after going under which shows more signs of confidence and improvement. </div><div><br></div><div>We are so grateful for all that the Physio's have taught us and use the same practices at home. Water is now something that Cadel enjoys. </div><div><br></div><div>K</div><div><br></div><div><br></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-5214575194191178652014-03-03T16:01:00.001+10:002014-03-03T16:01:08.864+10:00Letter V ( A to Z of CF 2014)This one may get a little full of technical terms but bear with me. <div><br></div><div>V is for Vas deferens. <br><div><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Although men who have CF can enjoy a normal sex life, they are almost always (in about 98% of cases) infertile due to failure of the<b> vas deferens</b>, the tube which carries sperm from the testis to the penis, to develop properly. Normally the vas deferens carries the newly made sperm to the back of the prostate gland where it joins the outlets of the seminal vesicles. The sperm can then be released into the semen during intercourse. In CF the vas deferens almost always fails to develop properly.</span></div></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">***taken from cfmedicine.com</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thankfully due to all the advancements in modern medicine people with CF can go on to be parents if they choose to. This is because they are they are infertile but not sterile. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Just another way to show how CF affects the whole body and you would never even know with this invisible disease. Modern medicine and their advancements everyday give hope to people living with CF to try and enjoy the little things that we all take for granted. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">K</span></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-51469631013319688742014-03-03T11:43:00.001+10:002014-03-03T11:43:16.853+10:00Letter U ( A to Z of CF 2014)Understanding. <div><br></div><div>This is the whole reason for doing the A to Z so that you can understand CF and how it affects our family. We hope that you have learnt a few things and understand how our family functions and deals with all that CF throws at us. </div><div><br></div><div>If there is anything you would like to ask about our family, Cadel or his CF shoot away...... We will try and answer them as best we could. </div><div><br></div><div>K</div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-78293733460537361822014-03-03T07:45:00.001+10:002014-03-03T07:45:24.769+10:00Letter T ( A to Z of CF 2014)Theatre is our T today!<div><br><div>Cadel will be going into theatre later this month to have an endoscopy and bronchoscopy. </div><div><br></div></div><div>I have lost count of how many times Cadel has been in theatre but it doesn't get any easier the more it happens. </div><div><br></div><div>It still horrible to hold down your screaming child as they are forced to sleep and then walk away. I know that they are in safe hands but the time that ticks along ever so slowly as you watch the clock until they are returned to you feels like an eternity. </div><div><br></div><div>I am always wondering if things are going ok and try and walk around the hospital or grab something to eat as the next few hours will be sitting beside Cadel's bed as he comes out of the anaesthetic. </div><div><br></div><div>This time will be the first in a very long time, going into theatre, and he is at his best health in a long time (* knocks on wood) but it will be an anxious wait to see and hear how things went as always.</div><div><br></div><div>Please send all your positive thoughts our way for later this month as we head into unknown territory once again. Thanks. </div><div><br></div><div>K </div><div><br></div><div> </div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-20500236540743492812014-03-03T06:49:00.001+10:002014-03-03T06:49:32.545+10:00Letter S ( A to Z of CF 2014)S is for Scott. <div><br></div><div>Scott is my husband, my best friend, my partner in crime, the father of my children and a great source of my strength. </div><div><br></div><div>With all of the pressures that a sick child puts on a relationship he helps to take that burden off as we share the load equally. He helps with all the medications, Physio and all that entails raising our three children. </div><div><br></div><div>When I need to lean on him he is always there, he can say just what I need to hear when I need it most and he supports me in anything I do. </div><div><br></div><div>I am grateful that he is such a great help and with everything we have been through and even more so in the last 3 years our relationship has strengthened when it could have easily weakened. </div><div><br></div><div>Thanks Scott for everything you do and how much you love and care for all of us! </div><div><br></div><div>K</div><div><br></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-87252342414905780002014-03-02T16:51:00.001+10:002014-03-02T16:51:36.055+10:00Letter R ( A to Z of CF 2014)R is for running. I have found a love of running and this year in 2014 I have committed to running in 12 fun runs. One for every month of 2014. <div><br></div><div>Through these runs we are raising money for four charities that have helped our family out after Cadel's diagnosis with CF. </div><div><br></div><div>The last two runs have been to raise money for Cystic Fibrosis Queensland</div><div><br></div><div><b>https://give.everydayhero.com/au/chugging-away-for-cadel-and-cf</b></div><div><br></div><div> and Make-A-Wish Australia </div><div><br></div><div><b>https://give.everydayhero.com/au/chugging-away-for-cadel-and-cf-1</b></div><div><br></div><div>We are also raising money for Paradise Kids. </div><div><b><br></b></div><div><b>https://give.everydayhero.com/au/chugging-away-for-cadel-and-cf-2</b></div><div><br></div><div><br></div><div>If you can help us out to reach our targets and help support charities that have supported us so much click on the above links. </div><div><br></div><div>Thanks </div><div><br></div><div>K</div><div><br></div><div>For more information on the above charities please follow the links below. </div><div><br></div><div><b>Cystic Fibrosis Queensland </b></div><div><br></div><div>http://www.cysticfibrosis.org.au/qld/</div><div><br></div><div><b>Make-a-Wish Australia </b></div><div><br></div><div>https://www.makeawish.org.au</div><div><br></div><div><b>Paradise Kids </b></div><div><br></div><div>http://www.paradisekids.org.au</div><div><br></div><div><br></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-27666962039821884552014-02-25T13:59:00.001+10:002014-02-25T14:00:19.853+10:00Letter Q ( A to Z of CF 2014)Q is a hard one to write as there are not many Q words but nonetheless here are a few and how they relate to Cadel and our family with in relation to his CF. <div><br></div><div><b>Quit </b>I wish that we could all just quit the disease that affects our life. I want to quit the treatments, the medications because I just want the damn disease to bugger off and disappear and act like we have never ever met before. </div><div><br></div><div><b>Questions</b> we are asked a lot of questions by a lot of people. Concerned family, friends, medical staff and sometimes the questions are hard to answer as we just don't know the answer. We are sometimes the ones asking the hard questions too, we ask them of family, friends and medical staff and the answers aren't always the ones we want or need to hear. </div><div><br></div><div><b>Quiet, </b>it's good to have some quiet time and just relax and let the mind go blank and disconnect from the world. It's sometimes the moment when the best ideas or memories are made. </div><div><br></div><div>K</div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-90561023729694490122014-02-25T13:23:00.001+10:002014-02-25T13:23:24.380+10:00Letter P ( A to Z of CF 2014) P is for Portal Hypertension. <div><br></div><div>Cadel was diagnosed with Portal Hypertension in his liver late last year and it is all relatively new to us so here is a definition I have sourced to help you understand but first I must remind you that Cadel was diagnosed with CF related liver disease. </div><div><br></div><div>**taken from childrenshospital.org</div><div><br></div><div><p style="margin: 0px; padding: 0px; border: 0px; vertical-align: baseline;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Obstruction of the portal vein – caused primarily by clots in or narrowing of the vein before it reaches the liver, cirrhosis, or high pressure in the veins that drain the liver into the heart – can cause the pressure in the vein to build up, much as blocking the end of a hose causes the pressure in the hose to climb. Increased portal vein pressure – known medically as portal hypertension – causes blood to back up in the organs that send blood to the liver. The body tries to relieve the pressure by generating new blood vessels that bypass the blockage, but such vessels are often weak and twisted, and tend to bleed easily. These vessels, called varices, may also bypass the liver itself, allowing toxins and nutrients to travel through the bloodstream unprocessed.**<br> </span></p><p style="margin: 0px; padding: 0px; border: 0px; vertical-align: baseline;"></p><span style="-webkit-text-size-adjust: auto;">So to see what is going on with Cadel's portal hypertension he will undergo an endoscopy to see the extent of the portal hypertension and if there are any bleeds they will be banded to cut that supply of blood off. This will have to monitored closely and is just another part of Cadel's unique condition that makes him special to not just us but the Dr's that treat him too!!</span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">K</span></div><div><br></div><div><br></div><div><br></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-72973723343354229442014-02-23T19:30:00.003+10:002014-02-23T19:55:08.253+10:00Letter O ( A to Z of CF 2014)O is for <span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Omeprazole</span><div><br><div>This is a medicine to help Cadel fight off his GORD or <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Gastro-oesophageal reflux disease, really it is a big word for reflux or heartburn. It may sound simple and not harmful but in Cadel's case it was making him really unwell and we think causing more then usual lung infections. What was happening was the reflux would make him vomit and then he would aspirate or breathe in part of that vomit into his lungs causing a yucky environment for nasty bugs to grow. </span></div></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So Cadel was put on </span><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Omeprazole as it helps to settle the stomach. </span></div><div><b style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></b></div><div><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When that didn't completely stop the reflux Drs performed a procedure called a Fundoplication, this is where part of the stomach is wrapped around the entrance to the stomach so as to stop the reflux. It wasn't an easy process for the little man because for weeks he was unable even to drink water for fear of aspiration so had to have IV nutrition called TPN. Even after the procedure was done the process of going from fluids, to purees to solid foods took a while. </span></div><div><b style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></b></div><div style="text-align: start;"><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thanks though to the Drs for doing this procedure we now think that this is why he has kept so well. He still takes the </span><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Omeprazole though to keep his stomach settled and it also helps to activate the enzymes that he takes to absorb his food, sometimes the side effects pay off! </span></div><div style="text-align: start;"><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="text-align: start;"><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">K</span></div><div style="text-align: start;"><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="text-align: start;"><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="text-align: start;"><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Picture of fundoplication. </span></div><div style="text-align: start;"><span style="text-align: justify; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jRFaMwVysdw/UwnFeiz39QI/AAAAAAAAAFk/dCCtBwquaPk/s640/blogger-image-1694512767.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jRFaMwVysdw/UwnFeiz39QI/AAAAAAAAAFk/dCCtBwquaPk/s640/blogger-image-1694512767.jpg"></a></div><br></span></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-64369559097356110612014-02-23T19:30:00.001+10:002014-02-23T19:30:21.470+10:00Letter N ( A to Z of CF 2014)N stands for network. <div><br><div>We are lucky to have a great network of friends who are very supportive. We like to think of them as being on our team in this fight. </div><div><br></div><div>There are our 'salty' friends who feel like family as they are also CF parents and are more sympathetic then others as they feel our pain and share our torture. We make time for each other and help each other, giving and sharing and asking for advice, tips and sometimes just a shoulder to lean on. </div><div><br></div><div>Hubby and I are lucky that we have made a great relationship with some very lovely friends who also share our pain, torture and wins. They are always there for us at the drop at a hat and we know that we can rely on them to provide some wise words of wisdom and be a sounding board. </div><div><br></div><div>It's very important to have this network as we need them to prop us up from time to time when things rough. We thank our team, as much as we can but we feel it's never enough for all that they do for us. </div><div><br></div><div>K</div></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-33571787567120039042014-02-23T06:30:00.001+10:002014-02-23T06:30:34.719+10:00Letter M ( A to Z of CF 2014)M is for Mum! <div><br><div>I asked Lorelei what she thought letter M stood for in relation to CF and she said after some consideration 'Mum'.</div><div><br></div><div>I have to agree I thought the same thing. I am a registered carer for Cadel but I am his mum first and foremost, as I am also Mum to Lorelei and Xavier. </div><div><br></div><div>There are some days that I wish I was only a Mum and not a carer, having to do treatments or medications or medical procedures in my own home, like reinserting feeding tubes, but I also need to be a carer to make sure I continue being Cadel's Mum. </div><div><br></div><div>I have to remind my self though that I am a Mum and I'm just doing whatever I can for my child like any other caring Mum would do. </div><div><br></div><div>I am a Mum and I love being a Mum. Some of the last words my grandmother said to me was that she always knew I would be a great Mum and that it was who I was supposed to be. Those words always meant so much that she can see what I feel and that I had made her proud. </div><div><br></div><div>K</div></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-84915514810291065352014-02-23T05:56:00.001+10:002014-02-23T05:56:54.379+10:00Letter L ( A to Z of CF 2014)L is for laughter. The saying laughter is the best medicine rings true with our family. <div><br><div>There are many times when having a giggle or laugh has completely turned a situation at the hospital around. </div><div><br></div><div>We try and surround ourselves with very positive people, who share our sense of humour so that we can all laugh and have a great time. </div><div><br></div><div>Apart from hearing the word Mum ( well sometimes it gets annoying, let's be honest) from my kids, especially when Cadel calls me Mumma or Ma, their laughter is the best sound in the world. </div><div>I love hearing my kids laugh and when they are all laughing together it's even better. </div><div><br></div><div>Who can be mad, sad, angry, upset, down, or any thing else then happy when you hear the giggle and gaggle of children. It nourishes the soul and I believe that means a happy and healthier life. Laughter may not cure any disease but it makes things bearable to laugh at your situation sometimes. </div><div><br></div><div>K</div></div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0tag:blogger.com,1999:blog-4769866746509429311.post-17429772696348273592014-02-23T05:49:00.001+10:002014-02-23T05:49:03.258+10:00Letter K ( A to Z of CF 2014)K is for keeping it real. This blog is a great place for me to tell it like it is. Sometimes it's easy to put up a front and pretend that everything is ok and behind close doors crumble into a mess. This blog space allows you, friends, family or complete strangers in on our journey in life and with CF. <div><br></div><div>I try to be really honest in this space and I think that has helped me deal with a lot of things easier as I can write down exactly how I'm feeling instead of just letting it fester. It also may help others going through the same thing to now that what they are feeling is ok and someone else feels the same. </div><div><br></div><div>So thanks for letting me vent sometimes and for putting up with me spilling out my feelings and I hope that it benefits, you, me and my family. </div><div><br></div><div>K</div>Life in a Bubble of Funhttp://www.blogger.com/profile/07689765933275308977noreply@blogger.com0