Amy

Exhausted, mentally, physically

by Veronica on February 9, 2014

in Amy, Ehlers Danlos Syndrome, Isaac

I had to walk up the road (200m) this morning to discuss an incident in which a neighbour’s dog killed a bunch of my baby chickens. By the time I got back, I was exhausted. It’s not a strenuous walk – the road is flat and easy. But my foot fell apart as I limped home, unable to quite work out which bone was out of place.

Yesterday I had one ulcer hiding in the bottom of my cheek. This morning, both sides of my mouth are ulcerated. My skin is breaking out, my brain is foggy and I am Tired and Run Down.

The school holidays were wonderful, but I’m wrung out. I need a week of laying on the couch reading books, drinking chicken soup and doing nothing.

My joints are flared, my shoulders keep falling out of place and I am feeling like my blood pressure can’t work out how low it wants to fall.

Look, this happens every few months. It’s actually been a while since I felt this terrible, and it’s nice to have had a break in the middle from the see saw that is my health.

But today I feel crappy, and exhausted. I have things I need to do, I have things I want to do. I have children to feed and watch and play with, but uuuuugh.

Sleep.

School is back, which is a bonus. Isaac began Kindergarten last week, and his first day went amazingly well.

Isaac first day of school 075

Isaac first day of school 098

I’d be lying if I said I wasn’t looking forward to this week, with 2/3 of my children at school, and Evelyn still napping regularly.

Hopefully, I can rest, recharge, and stop feeling like I’m being pressed into the ground by the sheer weight of the exhaustion I have.

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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.

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Let’s play a guessing game.

by Veronica on March 23, 2013

in Amy, Evelyn, Isaac

I was looking through my photo albums the other day, and pointed out a photo to Nathan. He nodded, acknowledging that he’d seen it, and pretty much ignored me.

“Honey, which kid is that?” I asked.

“Evelyn, right?”

“Nope. Isaac.”

He came back over and had a closer look at the photo, which is what I expected. I make Nathan look at so many photos of his children – children that he sees every day – that I can forgive him for acknowledging and then ignoring me.

“Wow.” He said.

Internet, there can be no doubt that our children look very much alike.

031

004

14weeks

I wonder, in twenty years, will I be looking at the baby photos and having to hunt down their dates to work out which child is which?

And, for regular readers, can you guess who is who?

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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.

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So, Internet. Everything has kind of gone to hell around here in the last few days.

Amy has had conjunctivitis and has been home from school for a week. This morning, Nathan and I discovered that she couldn’t hear 3/4 of anything we said. Luckily, we had a doctors appointment booked already, because it turns out she has what is commonly known as glue ear and has gone quite deaf. This explains why I’ve spent the last few days demanding to know why the TV is turned up so far.

Both of her eyes are bright red still, despite drops, so we walked out of the GP with stronger antibiotics to help clear up her sinuses, which will hopefully let everything fix itself.

Also a good thing that we had a doctors appointment today: Yesterday, I realised that Evelyn was having what I thought might be seizures.

Worse than that, she was having what looked to be lots of seizures, not just one out-of-the-blue convulsion.

I managed to catch some on video, dutifully showed the doctor, wondering if he was going to tell us we were being ridiculous, only to have him look quite concerned. This, I might add, is our incredibly laid back GP, who never seems concerned about anything.

He agreed that they certainly looked like seizures and is currently organising for us to see the hospital clinics, as soon as we can for follow-up. Probably early next week.

Her jaundice still hasn’t cleared up, which could be causing them – which wouldn’t be so terrible. Except then you wonder why her jaundice isn’t clearing up, when she’s feeding and gaining weight so well.

Around in a loop my brain goes.

They’re not terrible seizures, involving mostly eye flicking, rolling and blankness. They last anywhere between 15 seconds and a few minutes and she’s unresponsive while they occur.

She’s only 33 days old.

It hardly seems like we could have broken her in a mere month!

This is why new babies need warranties IMO.

 

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