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

Nobody knows, it's a mystery!

Poppy, Poppy, Poppy ... what the fuck is wrong with you? Nobody has the slightest idea.

So far you have had an MRI on your brain, a heart ultrasound, two EEGs, several ECGs, and two lumbar punctures. They've taken so much blood that you got anaemic and needed a transfusion. Everything the doctors can think of has been tested, and nothing has yielded a result other than 'normal'.

While we wait for the big guns – an exome sequence, rushed through specially because you are so critically ill – your doctors are proceeding to treat you for Opsoclonus Myoclonus Syndrome (OMS).

Today is the third day you've been on extremely high dose steroids, and the first day in two weeks or so that I feel like you're here with me.

I haven't seen the crazy eyes at all today and you're quite serene.

I definitely think you're responding to this treatment. You're connecting with me.

It's beautiful and heartening, but also frightening because OMS is a life sentence. I can see myself giving up any thought of going back to work and instead devoting my time to home schooling you to protect you from any exposure to infections which might set you off.

Crazy Eyes

One of the things that's worried me about you since (almost) day one is the 'crazy eyes'.

When you were born, you were only 2.002kg and you spent the first four weeks of your life in the Special Care Nursery at Knox Private Hospital.

So tiny! Poppy and me, 27 December 2016

During that time I saw what I would come to think of as the 'crazy eyes'; a wild, chaotic rolling and flickering movement that went for 30 to 60 seconds several times a day.

At first I thought that you were just having trouble focussing your newborn eyes on the world around you. I figured you'd grow out of it. You didn't.

So that's one of the things you do, Poppy, that just ain't right.

I don't know how many people I've mentioned it or pointed it out to, but it wasn't until your health centre nurse saw it that anybody agreed with me that it might be super weird and maybe just a little bit worrisome.

She suggested I video the episodes to show to your paediatrician. Why didn't I think of that?

These videos have been instrumental in getting you the help you need. Every doctor I show them to is fascinated, but they've never seen anything like them before. They all agree that they have to be key to some diagnosis.