Evelyn

I put Evelyn on her stomach this morning and she held her head up for five seconds, before collapsing, exhausted and crying. I celebrated. Five seconds. Maybe as much time as it’s taken you to read this. That’s how long her head was off the ground for and that’s what I was celebrating.

Oh how the goal posts have shifted.

I flipped her back over and picked her up, snuggling her into my chest. She looked at me with her huge wide eyes as if to say “what the fuck did you even put me down there for you tortuous milk woman” and I stroked her hair and held her close.

She held her head up for five seconds and oh, I wish I had a photo of it because for a moment there, she looked so strong and so normal and I wanted to cry. I might have cried. Briefly. Damp eyes. You can’t prove anything.

It must have exhausted her because she then went on to nap for four hours.

Ups and downs.She’s almost 19 weeks old.

She woke up and I nursed her and her eyes stopped working for a bit, which frustrated us both, because how can I make her smile easily when she can’t see me and “holy fuck the world has just gone dark again, I can’t say I enjoy this, hold me close and rock me milk woman.”

That’s been my day. My week even. The next few weeks are peppered with doctors appointments. I’m expecting to be thoroughly exhausted by the time Christmas rocks around, but who knows?

Today Evelyn held her head up for five seconds.

And that is enough.

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Evelyn’s brain and adrenal ultrasounds were clear, showing no signs of calcification from the Cytomegalovirus that she was apparently exposed to. I didn’t get a phone call about the blood tests done on the same day, so I am going to assume that no news is good news and that her adrenal and liver function is fine.

Thursday, we received a letter in the mail from Evelyn’s neurologist, letting us know his thoughts and feelings surrounding the appointment. This is one of the nicer things about seeing a doctor from the RCH who flies down – his secretary cc’s us into the mail correspondence.

It threw me for a loop at first, because he put into words things that we’d only vaguely thought of. Seeing something in black and white is infinitely harder than having it mentioned in passing. Things like “background of delayed visual maturation OR cortical visual impairment” and behaviors “have the characteristics of a movement disorder in this age group”. Movement disorders are, as a whole, a pretty yucky bunch. But then, anything that doesn’t give me a perfectly normal baby is hard and I was angry at the Universe for dumping this on us.

Frankly, epilepsy would have been the easiest thing, if that had of been it. Instead they’ve labelled her “seizures” to be “non-epileptic paroxysmal episodes”, and decided that they’re probably not anything terribly serious. What is serious is all her strange twitching and just, everything. She’s a strange baby.

The neurologist recommended another test for transferrin isoforms. I’d hoped that Ev had had this one done, because while what it is testing for is super rare, I would have been much happier if it was already done and negative. I’m trying not to think about the implications of this one, because honestly, it’s so rare that it’s highly unlikely to be that. I am thinking horses here, not zebras. Frankly, we already have enough zebras.

Wednesday she has a hearing test, and more blood drawn. Hopefully this means the results of the blood will be back before we see the Neuro on the 7th of December.

That’s it, really. She continues to be adorable, happy and an absolute delight. I cannot tell you how grateful I am that I get to be her mother. Which sounds soppy, but trust me, it’s true.

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I’m procrastinating over my NaNo project and instead I’m talking to you, dear Internet. Not that I really need to be procrastinating. Things are going well, but I’ve just reached the end of a big scene and I need to go and lie down in a darkened room while I play “what if” with my characters. What if someone breaks an ankle? What if that terribly important thing goes missing? WHAT HAPPENS THEN? TELL ME THAT, HEY.

Sorry. Distracted.

Also distracting: Stress. Evelyn has lots of blood drawn tomorrow, followed by a brain and adrenal ultrasound. We’re looking for any issues with her adrenal system, as well as looking to see if the cytomegalovirus has caused any patches of calcification in her brain. If there are, then we have some idea of what is causing her neuro, visual and movement issues. If there’s nothing, well then, back to the drawing board we go.

She laid on the floor this morning, propped up slightly on a breastfeeding pillow and smiled and cooed while I spoke to her. This is a good thing – a great thing in fact. She enjoys having attention paid to her, even if she has no limb control, hasn’t laughed, and still twitches an awful lot.

Anyway, I left her on the pillow, returning a few moments later to discover that her eyes had stopped working again. She jumped when I talked to her, before gooing and smiling again – but not looking at my face.

It’s all just bizarre. Her hands are still mostly clenched and the progress she is making is infinitely slow in comparison to her growth.

We’ll see though. Hopefully the tests tomorrow will give us some more ideas of what is going on. If nothing else, we might be able to rule things out.

Wish us luck.

As for complaints – my internet has been shaped due to SOMEONE’S current obsession with the ABC4Kids website and videos. Stab me in the eye? It would be less painful than trying to do anything online currently. Ack.

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