- Get up and get ready, breakfast do morning turns and magnet, morning calcium
- Fi had to take paracetamol only 30 minutes prior PT at 8.30 AM
- 9-11 hospital for 2 hours of land therapy - time for mum for a coffee, catch up on work/admin/chores etc.
- Be back to get ready for pool therapy by 11
- Shower after pool - always took us ages, I would rather let her enjoy a nice shower so we took the 1.15 shuttle home to Ronald McDonald House
- Do second set of turns and magnet
- Lunch around 2, calcium
- Homework/tutoring 3-4
- Third magnet at 4
- 4-6 - 2 hours of tummy time to stretch hips, meanwhile afternoon home PT and stretches,
- 6 dinner time, calcium
- 7 activity hour - (4th magnet before if needed)
9 bedtime: 3rd set of turns and 5th magnet if needed, evening stretches if needed.
Repeat Monday to Friday. Saturday-Sunday you have to do more home PT as there is none at hospital.
Hi there! Have you heard of the CNP molecule treatment? https://www.google.com/amp/s/theconversation.com/amp/new-dwarfism-drug-shows-how-innovation-can-be-done-well-50527
ReplyDeleteThere are medical publishments on it as well, but you’ll need access to them. It was a pre-drug trial in Australia, don’t know how it went, looked promising. The article is from 2015 and they were granted another 2 years. Maybe it’s worth looking into it :)