Tuesday, July 30, 2013

Featured Blogger: Kristy Of
"Life in a Bubble of Fun"

Today's Featured Blogger is Kristy from Life in a Bubble of Fun. Kristy's 2-year-old son has cystic fibrosis and she blogs about the ups and downs of their life together. Kristy and Cadel have certainly had some rough challenges come their way, and her blog shows a realistic picture of some of the toughest things about parenting a CF child, but her courage and determination to create a happy life for her children is inspiring!

First, tell me a little bit about yourself and your child with CF!

My name is Kristy, I am a stay-at-home-Mum married with three children aged 6, 5 and 2.
Our youngest child has CF. Cadel is a bubbly little guy that doesn't let anything hold him back. He is definitely an old soul who has so much to teach me and our family. Cadel's journey with CF has bought out new discoveries in myself that I never knew hid deep down inside. I have discovered I love to write, hence the blogging and I would now like to study to become a nurse, specialising in paediatric ICU nursing.

How old was your child when they were diagnosed with CF? What led to their diagnosis?

Right from the birth of Cadel my mother's intuition was telling me that something wasn't quite right. When born Cadel had meconiuim aspiration and spent 13 days in the Special Care Nursery, 12 of those on oxygen. He developed a nasty cough and was referred down to the Respiratory specialists at the closest major Children's Hospital. While at home Cadel was losing weight and looked pale and just generally unwell. 

The specialists at the Children's hospital sent him for a sweat test, this was done on Friday and on the following Tuesday we got a call saying they would like to see us at the hospital and to bring an overnight bag.
So off we went to sit in an office to be told the devastating news that our tiny baby had Cystic Fibrosis and was unwell and needed to be admitted straight away and put on IV antibiotics. A crazy whirlwind of education and processing started. Cadel spent his first Christmas in hospital and has since had 23 admissions ranging anywhere from 1 night to up to 52 days at a time. He has been unusually unwell for his age, with numerous chest infections and the diagnosis is not looking good. Cadel has CF related liver disease as well, he spent over a 1/3 of 2012 in hospital on IV antibiotics fighting chest infections and we were given the devastating news in September 2012 that he is most likely not to make it to the age of 10.

What kind of effect has CF had on your life and your family's lives?

CF has had a major impact on our lives as our son has been so unwell for his age. So we have lost a lot of time and events with the other children as Cadel has been admitted a lot. But in saying that my husband and I upon learning our son's diagnosis took on the quote from an adult CF sufferer that went along the lines of " I don't live with CF. CF lives with me." We try and not let it rule our lives and fit it into our lives. It has it days when we feel isolated and miss out on doing certain things because of CF but we have met some amazing people in the CF community who are now great friends and we have CF to thank for that.

When did you start blogging? What led you to start blogging?

I started blogging around April 2013. It all started as we were part of a Facebook group that were doing some CF awareness so for the month of march we did the A to Z of Cystic Fibrosis. It was great to tell our family and friends on Facebook about what each letter meant in reference to CF in our lives. I really enjoyed it and people encouraged me to start blogging as they thought I had a way with words. It was easier to write for me then it is to talk to people so it was a way to spread awareness for CF and tell our story.

What is your favorite post you've ever written?

My favourite post would have to be Don't call me super mum. I really enjoyed writing it and it came straight from my heart and opened up my world for all to read and judge as I was telling people about how I really felt and what I had wanted to say for a really long time.

What are a few of YOUR favorite CF blogs? (They don't have to be on the blogroll.)
I love organising blogs! I would love to have a more organised house and life and try to do many small things to make this the case so some of my favourite blogs would have to be


What would be your #1 piece of advice to other parents with CF children?

Have a good support base and connect with other parents online and in anyway you can. It helps to talk to others who share your pain, triumphs and worries.

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