Crazy days

Well hello there readers. Sorry it's been so long between blogs but what can I say but we have been busy loving life. 

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. 

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. 

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.  

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. 

K 

I 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. 

I hate hospital admissions.

I hate holding you down while oxygen is taped to your face.

I hate trying to explain to you why you need the oxygen.

I hate being the one to hold you down while a 3/4 inch needle is pushed into your chest to access your port.

I hate having to wipe away your tears.

I hate having to again hold you down while they try and take blood from a finger prick unsuccessfully, not once but twice.

I hate watching the pity in people's eyes as they wheel you in the bed around to have an X-ray.

I hate trying to keep you happy when you are just over the hospital on day one.

I hate feeling useless.

I hate that we are away from your Dad, brother and sister. 

I hate waking you, my sleepy bub to have X-rays, blood tests, for doctors to listen to your chest.

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. 

I hate sitting and watching a monitor for those numbers to be good and the alarms not to sound if your oxygen levels dip. 

I hate that sometimes the Drs and Nurses won't listen to me and my mother's intuition.  

I hate that you yell at me, asking for it all to stop and I can't make it all stop. 

I hate having to distract you while blood is once again squeezed from your finger. 8 times in 3 days is just too much!!!

I hate hearing the pained and frightened cry when they take a swab sample with a huge cotton bud up your nose. 

I hate trying to remove the stickers left from the ECG machine, they are super sticky. 

I hate missing out on my Mother's Day at home and not doing what we actually had planned for the day. 

I hate that I miss your brother's class performance on assembly. 

I hate that your brother and sister need to speak to school guidance counsellors because they are so anxious about admissions. 

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. 

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!!!

I hate watching your little precious body fight.

I HATE CYSTIC FIBROSIS!!!!!!!!

K

Taking 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. 

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. 

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! 

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. 

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! 

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. 

K

Letter 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. 

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. 

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. 

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. 

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. 

I hope that you have enjoyed, learnt and shared our journey with the A to Z of CF. Thanks for reading.....

K

Letter Y ( A to Z of CF 2014)

Yes! 

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. 

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. 

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. 

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. 

K

Letter X (A to Z of CF 2014)

X-rays. 

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. 

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. 

K

Letter W ( A to Z of CF 2014)

Water. 

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. 

(We are forever grateful to Queensland Family Pools for our fab pool!!!!)

We attend Hydotherapy twice a week, the time varies on how Cadel is feeling and he drives what he does in the session. The greatPhysiotherapist has got him confident in the water, safe in the water and doing some great exercise. 

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. 

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. 

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. 

K

Letter V ( A to Z of CF 2014)

This one may get a little full of technical terms but bear with me. 

V is for Vas deferens. 

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 vas deferens, 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.

***taken from cfmedicine.com

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. 

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. 

K

Letter U ( A to Z of CF 2014)

Understanding. 

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. 

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. 

K

Letter T ( A to Z of CF 2014)

Theatre is our T today!

Cadel will be going into theatre later this month to have an endoscopy and bronchoscopy. 

I have lost count of how many times Cadel has been in theatre but it doesn't get any easier the more it happens. 

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. 

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. 

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.

Please send all your positive thoughts our way for later this month as we head into unknown territory once again. Thanks. 

K 

 

Letter S ( A to Z of CF 2014)

S is for Scott. 

Scott is my husband, my best friend, my partner in crime, the father of my children and a great source of my strength. 

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. 

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. 

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. 

Thanks Scott for everything you do and how much you love and care for all of us! 

K

Letter 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. 

Through these runs we are raising money for four charities that have helped our family out after Cadel's diagnosis with CF.   

The last two runs have been to raise money for Cystic Fibrosis Queensland

https://give.everydayhero.com/au/chugging-away-for-cadel-and-cf

 and Make-A-Wish Australia 

https://give.everydayhero.com/au/chugging-away-for-cadel-and-cf-1

We are also raising money for Paradise Kids. 

https://give.everydayhero.com/au/chugging-away-for-cadel-and-cf-2

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. 

Thanks 

K

For more information on the above charities please follow the links below. 

Cystic Fibrosis Queensland 

http://www.cysticfibrosis.org.au/qld/

Make-a-Wish Australia 

https://www.makeawish.org.au

Paradise Kids 

http://www.paradisekids.org.au

Letter 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. 

Quit 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. 

Questions 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. 

Quiet, 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. 

K

Letter P ( A to Z of CF 2014)

 P is for Portal Hypertension. 

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. 

**taken from childrenshospital.org

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.**
 

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!!

K

Letter O ( A to Z of CF 2014)

O is for Omeprazole

This is a medicine to help Cadel fight off his GORD or 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. 

So Cadel was put on Omeprazole as it helps to settle the stomach. 

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. 

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 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! 

K

Picture of fundoplication. 

Letter N ( A to Z of CF 2014)

N stands for network. 

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. 

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. 

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. 

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.  

K

Letter M ( A to Z of CF 2014)

M is for Mum! 

I asked Lorelei what she thought letter M stood for in relation to CF and she said after some consideration 'Mum'.

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. 

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. 

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. 

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. 

K

Letter L ( A to Z of CF 2014)

L is for laughter. The saying laughter is the best medicine rings true with our family. 

There are many times when having a giggle or laugh has completely turned a situation at the hospital around. 

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. 

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. 

I love hearing my kids laugh and when they are all laughing together it's even better. 

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. 

K

Letter 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. 

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. 

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. 

K

Letter J ( A to Z of CF 2014)

J is for just breathe, two little words with such big meanings! 

These words are something we will our CF'ers to do and hope that they do it with ease. It's so simple to say but something that they struggle with daily. 

It's also something that many take for granted, me included. To be able to take a big deep breath and suck in all that air and fill my lungs is what Cadel strives for daily. To experience how CFers fight for breath it is suggested to pinch your nose closed and breath through a straw for 60 seconds. It's tough but at least you can stop doing that and just breath "normally". 

We are so grateful that Cadel's condition has improved in the last 12 months. His breathing rate and work of breathing has decreased and he has been oxygen free for a long time now. It's testament to his strength of character, his will to never give up and of course to the fantastic CF team that always look for new treatment options for Cadel. 

Here's to plenty more good years, great health and being able to just breathe. 

K

Letter I ( A to Z of CF 2014)

I is for isolation. 

CF patients cannot get too close to each other for fear of cross infection of the nasty bugs that they can harbouring in their lungs. 

In this way CF is very isolating for both family members and the patient. You can often feel alone, and not know where to turn. 

We are very lucky in that through our clinic and some mutual friends we have a great network and support base of other parents with children with CF. While we mostly connect via Facebook, we do also organise catch ups, we have all grown close friends very quickly as we share a common fight against CF. There is no greater bond then sharing a common enemy. 

There are so many avenues, thanks to technology,  that CF patients and family members can go to for advice, help and above all support. 

We are forever grateful that we found this support and hope that others can have the same fortunes. 

K

Letter H ( A to Z of CF 2014)

H is for heat. 

Especially over the last couple of days the heat as played a big part in Cadel's world. We have had very high temperatures and we need to make sure that Cadel remains cool and replace the salt that he has lost through sweating. 

We give Cadel 1 full teaspoon of salt a day with his medications as well as adding extra salt to his foods he eats. 

There are many ways we escape the heat and they include,

* air conditioning - we are lucky that the Australian government helps subsidise our heating/cooling electricity bill because Cadel's condition doesn't allow his body to regulate his temperature. 

* swimming in the pool, what better way to cool off by swimming in the pool and getting some Physio in too, oh and have some fun! 

* taking time to rest and have a break. We are always getting Cadel to just stop take a breather and relax before he heads out again to play and play and play and play....

* drinking plenty of water. We have a constant supply of cold water drink bottles in the fridge that Cadel can help himself to. He also has a water bottle in bed every night. He drinks a lot of water and seems to like it cold, look out if it's not is all I can say! 

Although the heat can play havoc with Cadel and his CF I think I would rather the heat then the nasty bugs that hang around in the cold and Winter! 

K

Letter G (A to Z of CF 2014)

G is for greatness. 

I truly believe that Cadel is destined for greatness. He has a strength of character that I have never seen before in someone so young. I think this character will grow and be even bigger and stronger as he grows up. 

He is not his diagnosis and we will never let that be the case. We encourage him, just as we do our other children to chase their dreams and to never give up. 

Cadel already has the attitude in life that nothing will hold him back and I admire that. To look into his eyes you see an old soul who is wise beyond his years and is always thinking about what his new adventure will be. 

We will encourage Cadel to chase the big dreams, whatever they may be, he will be great, good, grand and gorgeous at anything he does. 

Chase the big ones my Boo and never ever give up! 

K

Letter F ( A to Z of CF 2014)

F is for family. 

Scott and I both have a strong sense of family. We value every moment we have as a family of five and we always try to make even simple things great family memories. Playing in the backyard can be fun and we hope it's all these small moments that all our children will cherish that we spent time together. 

CF is a life limiting illness but we live by the philosophy that it will not rule our life. Family gatherings are always important to everyone but when we get together we need to ensure that everyone is healthy to ensure that Cadel and the rest of the family don't pick up any nasty bugs. 

We have a lot of support from our families, they have come to learn how we have to operate as a family to keep Cadel  healthy. It's all still a learning process for all of us and we hope that we continue to have their support. Families are far from perfect and we acknowledge that but we know who is there for us and who isn't. 

We also couldn't have F without Friends!!! While some relationships have fallen by the wayside as it's all too hard for them. Others have strengthened and grown beyond what we could ever imagine. It's great to know that we have some strong people to go to if we need to lean on them. 

K

Letter E ( A to Z of CF 2014)

E is for enzymes. 

Cadel is pancreatic insufficient which means that his pancreas doesn't produce the enzymes needed to break down the fats, carbohydrates and proteins in food. This means he doesn't absorb all the nutrients he needs in his high fat diet to maintain a healthy weight to help fight infections. 

So this is why when he eats most foods he needs to take enzymes with his food. He may have to take this capsules sometimes 6-8 times a day as he is a grazer and likes to snack all day rather then eat large meals. They are also only active for 30 mins at a time so if he takes longer to eat something he will need to take another dose. 

We are lucky and able to use Cadel's feeding tube to empty them into and push them through with some water. We are trying to get him to swallow them as when he goes to Kindy or school ( argh all happening too quickly) he will need to be independent and do the correct dose himself! So we are having some fun trying to get him to swallow M&M's and Tic Tacs. What an excuse to eat chocolate and lollies! I have attached a photo of the enzymes for and a 5 cent piece so you can see how big they are! 

Letter D ( A to Z of CF 2014)

D is for discovery. 

There are always new discoveries being made in the medical world and things can change so quickly. Did you know that in the 1960's the life expectancy for CF was just 10! Now the average is 38. Of course every CF patient is different and may have more or less time then this but that is a massive improvement. 

There are many doctors working on many things to help CF patients and they are finding new medicines to combat symptoms and even suppress symptoms. 

Even now there are medicines that Cadel takes that just weren't available years ago and we have even seen new medicines introduced in our short time of knowing about CF. 

The biggest discovery of all is Kalydeco. Although this drug is only used for patients with a specific mutation they are working on more variations. For more information you can go here. 

http://www.kalydeco.com

So to the medical teams and researchers that continue to work hard at making these discoveries we applaud you and know that good karma will be bestowed on you and your families. 

We hope they make more discoveries so that one day CF can stand for Cure Found. 

K

Letter C ( A to Z of CF 2014)

The letter C of course stands for Cadel. 

Our Cadel is a champion and we love him even when he is super cheeky. We admire his strength and courage. We cherish every moment we have with him. 

The name Cadel also means battle, well if only we had of known the battle our Cadel was really in for. 

There is another famous Cadel out there too. In case you didn't already know we named Cadel after Cadel Evans. Cadel Evans ( for those not in Australia or have been living under a rock is a champion and very celebrated cyclist who has been a world champion and Tour de France winner in 2011) Hubby has been a massive fan of Cadel and watched his career build and climb over many years. Cadel Evans has a drive, determination and hard work ethic that we as parents of a CF child draw strength from and hope that our Cadel will too. Cadel Evans is aware of our Cadel and his fight and has reached out to him and acknowledged his namesake. His mother also wrote me a letter and is always asking how Cadel is doing. One day we hope to meet face to face and introduce Cadel to Cadel and show that they can draw inspiration from each other. 

K

( do you like all my letter C drops!!!) 

Letter B ( A to Z of CF 2014)

B is for bubble. Bubble, bubbly or bubbles have a lot to do with Cadel and his CF. Here are three different meanings of bubble for Cadel and his CF. 

Cadel is a very bubbly little boy who never let's anything hold him back. He can be crying after being needled for his port and the next he is happy and laughing and playing like it never even happened. He constantly amazes me with his resilience and love of life. Just yesterday he was being his usual bubbly self and I made the comment about how much this little boy loves life, it's his world and we just live in it! 

Bubble PEP is a type of Physio that helps change the way the air moves in his lungs thus shifting any nasty mucous that is stuck. It involves a cup of water, a straw and for some extra fun, food colouring for coloured bubbles. Then all Cadel has to do is do what every parent has told every child NOT to do with their drinks and blow bubbles!!!! 

Cadel's journey with CF has been far from on the staight and narrow, it has had many twist and turns and ups and downs and some dark tunnels but there is always light at the end. We could choose to live in a bubble to protect Cadel but we just choose to do things a little differently while still being mindful of Cadel's condition but also having fun. We work around the situation and make it suit us. Life is ours to enjoy and we treasure every moment we all get to spend together as the small things are often the ones that mean the most and leave the biggest impressions. 

K

Letter A ( A to Z of CF for 2014)

This time last year we took part on the A to Z of CF to help spread awareness for CF and this year we are at it again. In part this whole idea last year spurred me on in my writing and in turn led me to writing this blog. 

This year we are going to go with our theme for life and the battle with CF in general and be positive and show how even though this condition takes so much we can still see the positive so without further a do the letter A......

A is for Active. Cadel needs to stay active  for many reasons. To stay fit, to stay healthy, to help shift the sticky mucous on his lungs by changing his breathing up but most of to be a normal 3 year old and play with his Mum, Dad, sister and brother. 

Staying active could be as simple as jumping on the trampoline, running around playing tiggy, swimming in the pool, going for a bike ride, even a walk along the beach or as he has done today chasing butterflies in the backyard. We try and keep him happy and let him lead how and what he does. 

True Christmas Superhero!

So Cadel got a major infection in his port-a-cath just days before Christmas. We were faced once again with having yet another Christmas Day in hospital but the quick thinking staff who are more then aware of how much time Cadel has spent in the hospital put an action plan into place straight away. Their actions allowed us to be all together on Christmas morning, at home, with a nurse coming to administer his daily drugs. 

While it wasn't the Christmas we were dreaming off, we weren't waking up in different places on Christmas morning. We had planned on visiting my family 4 hours away and for almost a week we would stay there, relaxing and spending time with family and enjoying the town I grew up in, including enjoying the salty air and rejuvenating nature of the beach. We were all so excited about it and had planned activities and had talked about it for weeks and when Cadel was firstly admitted and then discharged and had to stay at home we were all very sad and disappointed. Then we realized that it would be just the five of us at home and we would have to have our own little Christmas, this party planning addict got a little excited.  We went and salvaged what was left in the shops for our Christmas table. We started to plan our menu and we all were excited about Christmas once more. 

Although we all missed being surrounded by family we facetimed and had several phone calls and messages back and forth to keep connected through out the day. We made up some new little traditions for our family and we had a good day and created some great family memories. I'm sure the kids will look back in the years to come and laugh at the silly photos we took and reminisce about how much they enjoyed the Bon Bon crackers and loved the silly glasses that adorned their place setting along with Christmas lights on the table! I'm sure they will not look back in regret as we were all together and not cramped up in a hospital room. 

Although a big low point in the day would have to be holding down Cadel on the kitchen bench while a new needle was placed into his port as it wasn't working very well, I couldn't help but think of the poor nurse who was actually doing the procedure. I'm sure it wasn't what she had envisioned for her Christmas day either. 

They are true heroes, nurses. Here is this women driving around to several patients throughout the day administering medications and doing observations. The super hero in civilian clothes also came bearing gifts for Cadel and his brother and sister from the Hospital In The Home team. How special, we also made sure that we had a tiny gift of gratitude of a box of chocolates for her to munch on as she drove around to all her patients throughout the day. I hope that she got to go home to a cooked Christmas dinner and was surrounded by her family who truly appreciate how much her job means to family like ours. 

I would also like to impart on you to never take your health or your families health for granted. Appreciate what you have and yes sometimes our families can drive us all a little bat crazy with their little annoying habits but spare a thought for those who me included wanted nothing more to be surrounded by my family but for unseen circumstances it didn't happen. Yes my family will 'redo' Christmas but you can't 'redo' the real magic that happens on Christmas Day. 

From me and my family, we hope you all had a great Christmas and wish you all a big stack of health, wealth and happiness for 2014 and beyond. May you forever have fun in your own bubble. 

K