Evelyn

Moving forward in leaps and bounds

by Veronica on May 20, 2013

This morning, as a kitten napped in front of the fire, Evelyn commando crawled over to her, grabbed her by the head and then shoved her in her mouth. When I rescued the kitten, Evelyn rolled over onto her back, looked at me and clapped her hands.

She’s very clever, this baby of mine.

Tomorrow she has bloods to check for markers of a neuromuscular disease. We will hold her flailing body down (again), while the nurses poke her with needles (again) and we try not to take the screaming too much to heart (again). Holding my baby through a blood draw is one of my least favourite things to do, beaten only narrowly by holding my baby during a lumbar puncture and sawing off my own feet without anaesthetic.

But as far as Evelyn goes, she’s doing really well. She tries to eat the kittens, tangles herself up in towels left on the floor, plays peekaboo and claps her hands.

What more could I ask for?

Last week:

She likes to eat her toast reclined sideways in her bouncer, head resting against the edge. She giggles when I kiss her tummy and is so very pleased to see her siblings, especially Amy when she gets home from school.

Eating toast 016

{ 9 comments }

I fell off my chair, but it’s OKAY, because I am OKAY. My baby however, well, hmmmm.

by Veronica on May 13, 2013

in Evelyn,Seizures

Two days ago I sat down on my computer chair and leaned backwards, sinking further than normal. Thinking that it felt odd, I got off the chair and looked to see if for some reason, it was bent, or crooked, or somehow or other, new. Not noticing anything, I sat back down, leaned back and suddenly found myself laying flat on my back, legs akimbo, looking at the ceiling.

You know there is something wrong with your chair when your vertical self suddenly becomes horizontal when you least expect it.

Obviously I am okay, except that Amy laughed at me and then wasn’t much help when I had to contort myself into strange positions to get out of my predicament. Now I’ve had to steal my husband’s chair and it feels all wrong. It doesn’t tilt quite the way I like it and I’m left bundled up in the centre of the thing, trying to work out how to type quickly and easily, while also not getting stuck like a large spider in a too small space.

All of this is very First World Problems, which I know and understand, but I’m distracting myself from the week that was, and thus, you get to hear about my computer chair.

Plop. There I was, flat on my back, like I’d had a rug pulled out from under me.

Thursday, in the moments after my grandmother’s funeral, we hurried ourselves off to a Paeds appointment for Evelyn.

The short answer to “What happened, dear Veronica, tell us because we do love your baby so” is – we’re doing more testing.

Digression: Evelyn, when she was a vaguely preterm baby stuck in special care, bled beautifully, provided it was only a heelprick that we needed. Since then, she’s had plenty of cannulas and assorted other needle pokes and I am convinced that my baby does not actually want to part with her blood. And who can blame her really? Having needles poked into you is miserable enough without the blasted nurses then stealing the blood like vampires and taking them away. No. If I was Evelyn, I wouldn’t want to bleed either. But bleed she must and between you and me, Internet, I am dreading the next time we head into the hospital. End digression.

We’re now testing for neuromuscular diseases, because her tongue tremor is uncommon and concerning and Things Need To Be Ruled Out. Evelyn is also going to have another EEG, which is going to be Fantastic Fun when this child does not find things being placed on her head and stuck there with tape at all amusing. Also: Hair.

Needs must and all that, and in the middle of it all, I am stuck sitting on a computer chair that I Do Not Like and this is the end of the world.

Because when you’ve spent too much time reading about Neuromuscular Diseases, then obsessing over your chair just makes more sense than anything else.

Now excuse me. I have to go hug my baby.

{ 13 comments }

I really should stop Googling things

by Veronica on April 26, 2013

in Amy,Evelyn,Seizures

This morning I tried to feed Evelyn. After deciding she didn’t really want any milk, she lay there across my chest, smiling at me with her tongue out, showcasing its twitching and shaking. It’s times like these I wish I had magic video camera eyes. Then I can play these scenes for her Paediatrician, and he can see what I see.

Yesterday I spent an hour trying to video her tongue, while she spent the time trying to grab my face, eat the camera, kick me, or shout. None of these things make videoing a fine tremor easy and I can’t say with any great certainty that I managed it.

I Googled, afterwards, because it’s what you do in this world of instant information. You Google.

Then I stopped Googling, because there is nothing I can find that suggests a tongue tremor in a baby is a good thing. Sure, maybe if she was a perfectly healthy baby and it was our only symptom I wouldn’t worry, but gross motor delays, seizures AND a tongue tremor?

Step away from the Google-machine Veronica. You don’t need to know this stuff yet.

—

I am pacing the floor with Evelyn, because she’s vaguely grumpy and I have things to do that don’t involve her shouting at me. In one hand she has a square of toast, which she waves around like a trophy. I guess it is a trophy, of sorts, considering she stole it from me.

I sway and she smiles at me, before shoving the toast in my mouth, not happy until I nibble a corner off.

“Your turn,” I say, chewing my tiny bit of pre-slobbered toast. She grins and shoves half of it in her own mouth.

My heart sings, because while she missed my mouth three times and her mouth twice, the behaviour right there is age appropriate. She’s showing lovely signs of cognitive normality and it makes me happy every time I see something I don’t have to worry about.

Later, she practices her new skill by sticking a well gummed rusk up my nose, in my eye and finally in my mouth. Her hand-arm control isn’t great, but she knows what she wants to do, and she wants to share.

Happiness is sharing sticky food bits.

—

Amy is sick. So sick that when I suggest she goes back to bed she does so wordlessly, without a fight. Later, she sobs into my arms because despite panadol, this virus she has is miserable and has already knocked me down a few days previously.

I rub her back and Evelyn, who is in bed with us leans forwards to stroke her face and pull her hair, looking worried.

As a distraction, we start reading Harry Potter, something I’d been putting off because I hate reading aloud. We snuggle in and her sobs diminish as she listens to my voice. Four pages in, she is ready for sleep and so I leave her, tucked up with her kitten, her bedroom dark and quiet.

She sleeps for an hour, this child of mine who hasn’t napped since she was nineteen months old, and emerges briefly for water before bursting into tears again.

I tuck her into my bed and I read more, because that’s what you do when your child is unwell. You do things you hate because it helps them feel better. Evelyn kicks in her cot, listening to my voice and I must admit, sick or not, it’s nice being snuggled with my girls on either side of me.

I can forget what I read on Google and my fears for this baby, as we immerse ourselves into the world of Harry Potter.

It’s enough, right now.

{ 17 comments }

I am worried about this baby.

by Veronica on April 22, 2013

in Evelyn,Headfuck,Seizures

This morning, I put Evelyn down for her nap and when, five minutes later, she complained loudly about having to fall asleep, I picked her back up again. I tucked her under my chin and we paced the floor, snuggled together, while I listened to Neil Gaiman talk.

She snuffled my neck and wound her fingers into the tufts of hair behind my ears, tugging gently.

The talk finished and I put Evelyn down, patting her gently. She fell asleep and I was left looking at her. Baby soft cheeks and milky smell and I am so worried about her.

She has no depth perception, you see. She flinches when we walk in front of her, or we wave our arms, or something moves. She can’t judge where that thing she wants to grab is. Every new thing I notice is like a check mark against her; against the possibility of normality.

Last night, I rubbed her tummy while she fell asleep, feeling so lucky to have her. I watched her while she seized and seized and seized, thinking that if we end up having to go to hospital every time she seizes for longer than five minutes, I’m never going to spend any time at home.

Her tongue trembles, and she holds the tip of it arched up to the roof of her mouth. Her gross motor skills aren’t improving. She still has head lag when I pull her to sitting. Her shoulder joints slide around under my hands.

I worry about her, because no one know what is going on.

And yet – when I leave the room, she cries. She is amused by kisses. She watches her siblings avidly. She soaks everything in like a sponge. Her mouth moves in response when I talk to her. Cognitively, she seems very much like an almost nine month old baby, even if physically she can’t master anything she’s meant to be doing.

I like facts. I like to know what is going to happen. I like plans and progress and an idea in my head. I like these things because they give structure to my unbridled imagination that is always darker than my reality is likely to be. Because if someone says unequivocally “Your baby has X” then I know what X means and I can stop waking up at 3am, worried that she is dying.

This is what it means to be waiting and seeing. It means I pace the floor with my baby, listening to Neil Gaiman talk about throwing things to the wind like dandelion seeds, while I try to impress the smell of my child into my brain, just in case.

Because like he says, no one knows what will happen. No one knows where an idea will land.

And sometimes, that is the scariest thing of all.

{ 21 comments }

Kittens and babies: mix well, add seasoning.

by Veronica on April 20, 2013

in Evelyn

You’d think that Evelyn being able to catch a kitten would be a sign of her growing mobility. Actually, it’s a sign of the stupidity of kittens when it comes to small children and babies. Alley, the tabby kitten, lies underneath Evelyn’s bouncer, seemingly content in her safety. She might be right for all we know, as Evelyn rolls towards her, chubby fingers grasping for a kitten tail.

With a flick, Alley removes her tail from Evelyn’s grasp, right as Evelyn topples over in the wrong direction, to be distracted by a sock monkey.

Small moments in my day. A sleepy teasing kitten and a grappling baby who desires more than she can have.

I rescue the baby and snuggle behind her ears, breathing in soft milky smell. Babies are delicious. She clamours in my ears, simultaneously wanting all my attention, but also wanting to get down and eat the cat.

I’m an obliging mother. I put her next to the kitten, who submits to the ear grabbing and head chewing.

Before I know it, the kitten is asleep and the baby is distracted again, grumpily rolling herself in a new direction, intent upon destruction; a book abandoned upon the floor.

Baby and kitten