El is a typical 2 year old, and we want her to enjoy her life and not be controlled by CF. So I guess CF is just a part of who she is. I remember at uni they were very strict about using politically correct language. For instance, you couldn't write, 'the autistic child', in assignments you had to write, 'the child with autism'. We used to grumble about it, what difference does it really make? It wasn't until I had El that I realised it is very different.
So here is a day in the life of El, a two year old who just happens to have CF:
6am wake up- straight into physio, pats and PEP
6.45 am - antibiotics 4.5mls, Iron 1ml (every 2nd day), 2 enzymes and a nutrini drink
Plays with brother and sister.
Plate of fruit
9am - breakfast (porridge with cream, milk, honey and golden syrup) 1 or 2 enzymes, vitamin tablet.
normal morning stuff (get dressed, brush teeth etc, play)
10-12 plays or does "school work with the big kids"
12 lunch usually 2 enzymes
sleep time
3pm nutrini drink 2 enazymes, afternoon tea (more enzymes)
we usually go out in the afternoons (shops, sports, park, etc)
5pm dinner (more enzymes, and antibiotics)
bath with Em
story and bed (if well)
or
Physio Pats and PEP
bed (if unwell)
You can see she is a normal child, with physio and lots of tablets to take!!
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment