Agnes was born 8 weeks premature and had a rollercoaster NICU ride. Just as we thought things were picking up and she just needed to put weight on to go home, we were told that she had Cystic Fibrosis.
Since then she's had a number of infections, a two week hospital stay in 2014, a three week hospital stay in summer 2016 and more recently a three week stay in Feb 2017 with a partially collapsed lung. This is as well as a number of bronchoscopies, an endoscopy, dozens of xrays, scans and reflux studies.
She takes a bucket-load of tablets each day, has a number of different nebulisers and two lots of respiratory physio each day. All of these things are to keep her well and she has more medication and physio if she's unwell.
This is a lot for anyone, let alone a happy, bubbly and active 5 year old.
Agnes is a friendly and popular girl who doesn't seem to stop, or let CF get in her way too often, but she's at an age where she's realising that her reality isn't the same as her friends and wishes that she didn't have CF as it's 'not fair', and we have to agree with her; it's not fair, but she and we all get on with it the best we can.