Sleepless Nights

Author: Veronica

  • Procrastination and complaints.

    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.

  • I think I broke my brain. Reality feels a bit warpy.

    Exhibit A: Where did my baby go?

    Exhibit B: I have THREE children. How did that happen?

    Exhibit C: It was a cold morning and she is FUZZYWUZZYADORABLE.

  • I appear to have broken my filter

    I spotted the Fake Mamamia hashtag on twitter this morning and wasn’t going to get involved. That is, until I saw a real MM article about some lady who got an all expenses paid trip to Tasmania – a place she thought that she hated, and bagged out plenty. But apparently in this day and age, an all expenses paid trip wins, even if you think you’ll hate the location.

    She went on to be ASTOUNDED and AMAZED that she actually (wait for it) ENJOYED HERSELF.

    Shock. Horror.

    I was offended and said so on twitter.

    Then I looked at the #FakeMamamia hashtags and I couldn’t help it anymore, I joined in, because come on, that site SO had it coming. Click baiting headlines, setting women up against each other, hating on people for making different choices, you could argue that Mamamia is all that’s wrong with women’s media at the moment.

    It was HILARIOUS. I haven’t had that much fun on twitter in a very long time.

     

     

     

     

     

    There were hundreds of fake headlines. It was fantastic.

    As I tweeted though, enjoying every single minute of mocking that I did, I realised something: I’ve broken my filter.

    I’ve spent the last 17 days writing fiction for NaNoWriMo. I’ve removed the ads from here. I’ve turned down all the sponsored posts I’ve been offered. I (mostly) stopped checking my traffic. I stopped caring.

    And I haven’t regretted a single moment of it. I wasn’t tweeting this morning worrying about what people thought of me. I wasn’t crippled by angst over the unfollows I got (and trust me, I checked, I got plenty of those), or about whether I was annoying anyone.

    I was having fun, saying exactly what I wanted to say. I didn’t even freak out when my tweet ended up on the SMH [who, incidentally, completely missed the satire of the whole thing, and seemed to think that one single tweet had “caused” it, rather than a buildup over god knows how long] and then syndicated through a bunch of other news sites. Eh, it could have been worse.

    Fiction writing has broken my filter*. And it’s awesome.

    *I should clarify that when I say my filter, I mean the filter of “oh noes, what will people THINK OF ME” filter. Not that handy one that stops me oversharing about my vagina, or telling hilariously embarassing tales about my 6yo. Also, when I talk amout MM, obviously I am grmbling about the site in general, not about the woman who runs it. No personal attacks occured during my hilarity. Calm down.

     


  • A series of seemingly unrelated things

    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.

  • Happy Birthday to me!

    Happy Birthday Cake

    It’s my birthday today. I went and spent all my money at the nursery, buying trees. It’s a good day.

    I’m 24 today.