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.