Further regression?

Over the past few days there have been less and less times when you're 'with' me. You're mostly asleep or having one of your agitated face rubbing sessions.

Nothing can compel you to stop, and the more you go at it the more agitated you become. In the end I find it is better to swaddle you. You usually calm down pretty quickly after that and drift off to sleep because you're exhausted.

There have also been more times when you're quite out of it and very grey because you're breathing too slowly or shallowly.

Poppy looking grey, 7 September 2017

Our palliative care doctor says not to feel like we have put you on oxygen during these episodes; only if it makes you more comfortable. It doesn't, so we won't.

You've also slowed down in the eating department. The first few feeds of the day seem to process through OK, but the later ones are just sitting in your tummy and we're bringing back a lot of milk or curds when we aspirate ahead of the next feed.

We've started a new regimen of five feeds only per day, each at four hours with an eight hour break overnight. This way, we are under less pressure and you have more time to digest. You won't be getting your prescribed daily volume, but at least you won't be vomiting.

Poppy, this is really hard.

I love you so much, but watching you this way makes me wonder whether yours is any kind of life at all for you. We've got you sedated pretty much 100% of the time. Ordine is my new best friend.

Rett syndrome has four stages. I think you're in stage 2 (rapid regression) at the moment, and I think it's getting worse.