Still with us!

OMG Poppy, you're still here!

We'll be heading back to hospital this week to inform a longer-term treatment plan, observe your lung function and check for seizure activity.

You have a new version of 'crazy eyes' where you just stare up into the corner of your eye and vacate your body for minutes on end. It goes anywhere from 15 to 45 minutes. Other than that, you seem pretty good - insofar as one can tell.

You've definitely gotten weirder over the past eight weeks. The Rett syndrome has done a real number on all of us.

Still with us! 13 August 2017