Headfuck

Wait and see.

by Veronica on December 12, 2012

in Evelyn, Grief, Headfuck, Isaac

We saw the neurologist for Evelyn last week. The official line is wait and see. We don’t know anything and we won’t know anything until she starts to display differing symptoms as she gets older. It’s hard, this wait and see. Wait and see if she improves, or goes downhill. Wait. See. Horrible. I have a phone appointment with our Paediatrician tomorrow to get the results from her last lot of blood tests and that’s it until after Christmas.

Encouraging things though are this:
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This is Evelyn holding her head up briefly the other day. It didn’t last long and she hasn’t been able to repeat it (I say she’s storing up energy for next time) but she did it and I am so very proud of her.

Yesterday she giggled for the first time. I nearly cried.

Everything else continues along steadily. She’s still having episodes regularly, she still sleeps more than any baby ought to – especially a baby who is over four months old – and her eyes still aren’t great.

But she is deliciously kissable and every little thing she manages is a huge achievement. Go Evelyn.

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Isaac saw the doctors too regarding his stomach issues and we’re looking into starting the FODMAP diet with him. I expect the adjustment period to be a bit hellish, but we hope it’s going to help. Just waiting on seeing the dietician now.

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I held Evelyn’s feet in my hands and kissed them until she smiled at me. I looked at them; at the silvery scars on her heels and the remnants of failed cannulas and I tucked them back under her blanket for her; safe from air and touching and harsh needles.

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I’ve been reading a lot. This year has been rough and I’m ready for it to be over. I keep dreaming that my grandmother is alive and that everything is okay with Evelyn and then I wake up and nothing is right. I’m not as mentally healthy as I could be, but I suspect a lot of that will be fixed by the holidays. Until then, I’m reading and I’m writing and I’m kissing my children.

How are you?

 

 

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No control

by Veronica on December 1, 2012

in Evelyn, Grief, Headfuck

I had a bad day today.

It’s this limbo of not knowing what is going on with Evelyn. Of watching the days slide past in a slow trickle, like sand through an hour glass, but not seeing any real changes in her behaviour. It’s not knowing if what I’m seeing at any given time is a “non epileptic paroxysmal episode” or a new type of seizure. It’s not knowing if she will be normal, or severely challenged, or somewhere in the middle.

It’s the waiting, most of all.

I sat on the floor today, holding my daughter and watching her try and smile at my voice, while her eyes darted around, not looking, not seeing. I sat there, and her tongue twisted strangely, and her arms jerked and her hands felt spastic (in the true sense of the word) and I wanted to cry, because we just don’t know.

If she’d had an MRI and an MRI showed serious brain damage, then every thing that she did would be a celebration. From sneezing, to waking up of a morning. Instead, her MRI is clean and I’m left not knowing anything. Constantly wondering if this is it, is this what she will be like forever? Or is this just the very beginning and in five years, I’ll be remembering the days like today with a bitter taste of fear and crisis averted hanging around in the back of my throat.

She should be normal.

She is not.

Evelyn is eighteen weeks old today and I can’t even think about what my other two children were doing at eighteen weeks old.

And yet, it runs through my head, a constant litany that I cannot turn off; that I want to turn off.

[Amy noticed her hands at eight weeks. Could hold a rattle consistently at nine weeks. Rolled at eleven weeks. Ate solid food at 17 weeks. Could sit propped up at 18 weeks. Was crawling at 22 weeks.

Isaac noticed his hands at 7 weeks. Batted at his toys at 9 weeks. Had good arm control by 10 weeks. Rolled at 12 weeks. Rolled around the house to play at 16 weeks. Crawled at 24 weeks.]

This constant litany, over and over again. I could play with them. They laughed. Enjoyed games. Enjoyed toys. Enjoyed us.

It’s not the case, here and now. I hold Evelyn and cover her face with kisses. She licks me and smiles, occasionally cooing at me, but more often gagging on her own tongue and saliva. I stroke her hair and hold her tight because I don’t know how this story will end and every single second breaks my heart.

I want her to be okay. I want for her to be okay so badly that every atom of my body aches for it.

But I am only her mother and I have no control over this.

 

 

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A series of seemingly unrelated things

by Veronica on November 15, 2012

in Evelyn, Headfuck

Evelyn had a Paeds appointment this afternoon.

I just stopped and thought about that. That particular line has been the starting line of more blog posts than I care to imagine. You’d think with my super powers that I’d be able to think of new and exciting ways to let you know that Evie saw her doctor, but apparently, you’d be wrong.

In any case, she saw the Paediatrician today and he is stumped, but! not really. but! kind of. but! these things should not be related, but might be, but probably aren’t.

Evelyn appears to have contracted cytomegalovirus at some point, probably while she was in utero. I don’t know much about it and at this stage I’m a bit loathe to google too much, but I do know that it can cause seizures …

[Digression: If we go through all of this, this EVERYTHING, only to be told that she’s not having seizures, but now she has something that seemingly can cause seizures, I will be VERY ANNOYED if they decide that she IS actually seizing. Because it sure as hell looks like seizures still to me and “twitchy episodes” or “non-epileptic myoclonic episodes” as they’re technically being called does not have the same ring to it when I’m watching my daughters eyes roll into the back of her head while her face twitches.]

… because of calcification in the brain. Now, when Evie had her MRI at the grand old age of five and a half weeks, or around 10 days corrected, it didn’t show any calcification and common sense would tell you that there needs to be calcification first to cause the symptoms she is having. But common sense would also tell you that if she had had cytomegalovirus, then there would be both IgG and IgM antibodies in her blood and urine – whereas she only had IgG antibodies (inherited from me, because I’ve had it an am immune). BUT, trumping everything, they found DNA PCR in her urine (that’s what they told me, anyway), which is apparently a better diagnosis than just antibodies?

All of that is to say, I’m not sure how much of the IgG and IgM and PCR stuff you understand, goodness knows I’m barely wrapping my head around any of it.

End result: Evie has had cytomegalovirus and it might be the cause of some of her issues and it might not. She might be terribly broken, or she might be entirely asymptomatic. We just don’t know. She’s been referred off to have another hearing test and a brain ultrasound in any case, so we’ll see what those show.

Unrelated: She’s also having her adrenal function tested, because her skin continues to darken, making her look rather like she’s trying to hide a solarium habit from me. As a child of completely Caucasian parents, her nipples should be the darkest part of her torso, not the lightest. Again, it could be nothing, but darkening skin is an adrenal thing and we’re checking it.

I think she’s also having another liver test, among other things*

Also unrelated: Her development continues to suck. I mean that in the very nicest way of course. She’s just barely hitting some of her 6 week milestones now (at almost 16 weeks), and so I’ve got a handy dandy developmental chart to fill out before our next appointment in a month.

*I say tested, but we didn’t do the bloods today because it was all too much, and PACU was very busy taking blood from a poor screaming toddler. We’ll get the bloods done when she has her ultrasound next week.

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Finality.

by Veronica on November 4, 2012

in Blogging, Headfuck

Nathan had surgery on Friday to fix a hydrocele. I’m pretty sure he doesn’t mind me talking about his testicles on my blog, but in case you’re worried, I did ask first.

While he was in there, he had a vasectomy. It was a joint decision but…

I wasn’t prepared for how sad this would make me feel.

It’s a good thing; logically I know it’s a good thing. We have three beautiful children and this is our mental, physical and financial limit. Three children and we are so so lucky.

And yet, the emotional side of my brain is still sad. No more tiny babies for me.

Frankly, I would be happy to never be pregnant again. I found pregnancy utterly miserable, but never having a newborn again?

Sad.

In any case, it was the right decision, and I will get over it.

It’s just so FINAL, you know?

In other news, NaNoWriMo is going quite well, and once I press publish on this, I’m locking my children outside* and planning on writing lots more words. For those naysayers (yes, I’ve seen you out there) – yes, it’s 50k hurried words. No, each word that falls out of my fingers is not perfect. I know that there are holes in my plot and timeline that need clearing up later.

But – it takes the pressure off. I’m not expecting myself to write fifty thousand perfect words this month. I don’t expect my end result to be an instantly publishable work, filled with great prose.

What I do expect is that at the end of November, I will have a first draft. Messy and mistake filled, it will be the bare bones of SOMETHING. It will need editing and rewriting – but don’t we expect that in any case?

The pressure of writing 50k words in 30 days stops my inner perfectionist in her tracks. It stops her shouting at me that I may as well give up now, that this is crap. Because I know it’s crap and I’m writing it anyway.

The beginning of something does not need to be perfect. It just needs to BE.

*I kid. Mostly. Unless they start fighting again. That said Amy is sulking because I growled at her and Isaac just tried to bash his two front teeth out. Blood. Everywhere. (He’s eating an ice cream now however.)

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Making myself accountable to you.

by Veronica on October 29, 2012

in Gotta Laugh, Headfuck

Wow, that sounds like a heavy title, doesn’t it? But it’s true – I am here today, making myself accountable to you.

Yes, you.

In a moment of insanity, I signed up to do NaNoWriMo. This is despite my crazy older children and the medical mystery baby –

[Who continues to not-seize and has added a whole range of new uncontrollable movements to her repertoire, leaving me thinking that “movement disorder” like the Neuro possibly thought, might just be on the money. Her hearing also appears to be sporadic now, and just, I don’t even KNOW with this baby.]

– and the wrapping up of the school year, and the beginning of spring and really, I have a million excuses as to why writing a novel right now is a terrible idea.

But I’ll always be able to find a million excuses for why sitting down Right Now is a bad idea, and instead, I’m not doing that. I’m looking at the one big reason that writing a novel Right Now is a great idea, and that’s because I’ll be joining an awful lot of other people trying to write 50k words in 30 days and we’ll all be insane together.

One of the ways that someone suggested to not fail, is to tell everyone that you’re doing it. Apparently, nothing will keep you writing faster than a fear of failing and everyone knowing about it. So in case you haven’t noticed, over there in my sidebar is a link to my page on the NaNoWriMo site, along with a wordcount widget.

Nothing appeals more to my obsessive nature than a wordcount widget telling the Universe how much I’ve written.

That’s it, really. I have a plan written, and an outline and I had a minor panic attack making my synopsis public (because people could be judging meeeeeeee).

If you’re joining in, let me know in the comments? Otherwise, feel free to tell me how insane I am.

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