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