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