Team Caden and Indie

After 4 months of coughing Indie girl has improved dramatically . Cough is clearing . Gaining weight.

Here again with Indie girl for Pyhsio session, lung function and to see the respiratory doctor. Indie just can’t seem to fight this cough off 😞

Indie update, after 2 weeks in hospital we are heading home today and will continue with hospital in the home. Each day a nurse will come to our home and give Indie her daily IV antibiotic, she will also carry around a Baxter bottle that is permanently hocked up to her picc line, it slowly releases an antibiotic over a 24hr period. We will continue with her intense pysio at home.
We are super excited to be going home.

Indie update: We are working hard to get rid of this annoying cough, it's a stubborn cough, slow progress. Her weight has dropped dramatically 5% percentile so we starting a new shake supplement and a medication that can help with weight gain, she will continue this when we come home. If this doesn't work the next step will be peg night feeds.
She has made really good progress with the Pyhsio.
At this stage we won't be home till hopefully sometime next week.
Indie is happy and back to her cheeky self and a little stubborn hehe 😉

WE NEED YOUR HELP!
You may have heard about the drug Trikafta - it is a new modulator drug to treat Cystic Fibrosis.
It is a bit of a miracle drug - it has turned around the lives of those that have been granted compassionate access in Australia and for many that already have access in other countries.
Many people have come off the Lung Transplant list, put on weight, stabilised their lung function and been able to resume pretty normal lives - returning to work, school and study.

It is not a CURE - but it is close!

This is the first modulator drug that Gabby may be eligible to use.
It would stabilise her lung health and prevent further deterioration.

PLEASE, PLEASE, PLEASE head to the link below and fill out the submission for Elexacaftor/Tezacaftor/Ivacaftor - Trikafta.
Help us to get it over the line and approved in Australia for the 90% of CFers eligible.
They all deserve a long, beautiful life 🌹

Department of Health | Online Comments to the Pharmaceutical Benefits Advisory Committee (PBAC) You are welcome to provide comments from a personal or group perspective for consideration by the PBAC when the submission is considered.

I know it’s been a while since posting, the past few weeks have been up and down.
Caden bowel issue and possible surgery is on the cards this year and Indie girl struggling with her lungs.

Cystic Fibrosis is often referred to as a hidden disease. In general, this means quite often the damage and affects of this disease aren’t obvious from the outside. The lung and organ damage, the abdominal issues, skeletal problems and the many other factors of CF.

Home yesterday after a hospital admission with Caden, it’s important to highlight what else is mostly hidden. Which is, the huge burden of treatments and medications, the scans, the medical procedures, the therapies, the clinic visits and hospital stays, the daily routines, the dietary stresses and a myriad of other requirements to stay healthy.

Then there are the often forgotten hidden sides, the sudden upheavals of life, the psychological aspects, the family stresses, the separations from each other, the everyday worries, the burden of treatments, the effects of medications, the missing out on activities, school absences, changed holidays, missed events, time off work, the tears, the fights, the tiredness and fatigue, the struggle to maintain friendships, the future uncertainties and the difficulty in answering the questions that are beginning to be asked.

9 + years into this fight and CF has no days off for Caden and 6 yrs for Indie

Qualified Hairdresser Immediate start- Looking for an amazing, fun and vibrate hairdresser to join our awesome team at cuts and colour Waurnponds.
Casual rate with set hours.

Qualified Hairdresser - Looking for an amazing, fun and vibrate hairdresser to join our awesome team at cuts and colour Waurnponds.
Casual rate with set hours.

Living With Cystic Fibrosis Directed and Produced by Olivia Tremul Special Thanks to Tribe Productions

Waiting, fasting, general anaesthetic and bronchoscopy today for Miss Indie. Such a brave girl.