Evelyn

When your baby stops breathing. Also, she can’t swallow.

by Veronica on July 20, 2013

Evelyn almost 12 months old

This is Evelyn, aged almost twelve months old.

Yesterday we saw a speech pathologist for the first time, to discuss Evelyn’s eating difficulties, and her choking episodes.

Last week, Evelyn choked on saliva, and stopped breathing briefly. I did standard first aid, smacking her between the shoulder blades when she truly couldn’t breathe and holding her closely while she wheezed, coughed and finally vomited.

It wasn’t the first time it’s happened, and it wasn’t the last time either.

She can’t swallow lumpy textured food anymore. I don’t know what changed, but something did and bam, the baby can’t swallow. It’s possible her throat is spasming and preventing the swallow, and thus she’s learned not to try. She likes tasting new food, she chews well, she doesn’t have a problem with different textures in her mouth. But she can’t initiate a swallow properly.

The upside here, of course, is that she breastfeeds well still. Although, milk comes out of her nose during the feed, and apparently that’s a bit of an issue.

Our speech pathologist is waiting to consult with our Paediatrician, and then a barium swallow study will be ordered. After that, we’ll work out what to do next, where to go from here.

I’m trying not to think too hard about Evelyn right now, as her body refuses to work the way it should. I’m hoping that time, and therapy, and building muscle strength and memory will help with these issues, but deep down, I am worried about her, and about the new issues that are popping up and seemingly getting worse.

She choked last week and stopped breathing. She. stopped. breathing.

I hope we can get a plan in place ASAP.

{ Comments on this entry are closed }

When your baby’s knees dislocate

by Veronica on July 11, 2013

in Evelyn, Seizures

I’ve been telling our medical teams for months that Evelyn’s knees are clicky.

“It’s just her low muscle tone. As she grows, it will improve” they all said. “Nothing to worry about.”

Until I was sitting at a physio appointment with Evelyn, talking about her knees when Evelyn began to click her knee in and out of joint.

“Hang on, is that the clickiness you’re talking about?” asked our lovely physiotherapist, while turning a little green. “That’s not normal. That’s not right. I’ve never seen anything like that before, ever. You need to get a referral to an Orthopaedic Surgeon for that.”

Oh. Right. Because dislocating knees in an 11 month old isn’t a good thing.

She’s learned to pull to standing, but her ankles are rolling in. We’re giving her another 6 weeks to encourage her muscle strength before she’ll have to start wearing support boots full time to keep her feet where they should be. Her hips seem fine, but because of the laxity of her knees, her feet end up turned backwards.

It’s a fine line, between wait and see, and actively intervene. We need to give her muscles a chance to strengthen, but we also need to be prepared for what happens if they don’t.

Evelyn choked yesterday, sitting at my feet. She’d been chewing on a rice cracker and I immediately assumed that something had gone down the wrong way. I held her while she spluttered, coughed and then stopped breathing entirely, her little eyes full of panic. I smacked her on the back, thanking everything for first aid training, and held her over my knees while she began to cough and breath again, finally vomiting in my lap.

Only, the thing is, there wasn’t anything large enough in her vomit to have caused a choking episode like that. She’s choked before on her own saliva and I can only pray that it isn’t getting worse. She’s stopped swallowing most foods, and I’m awaiting an appointment with a speech pathologist to discuss the choking/swallowing issues. We also see our Paediatrician soon, where we’ll discuss everything, before another EEG occurs later in the month.

It feels like we’re just running to play catch up right now. Her knees are dislocating, she tried to choke herself and she’s still having seizures overnight.

On the bright side, she can clap hands, wave bye bye and she woke me up this morning by very carefully biting me on the nose. Twice.

And she’s adorable.

Evelyn 11 months

{ Comments on this entry are closed }

Evelyn pulls to standing

by Veronica on June 27, 2013

in Evelyn

If you’re on twitter, yesterday you might have noticed my ecstatic tweet about Evelyn pulling herself to standing. I am SO proud. Tonight, I got it on camera.

Evelyn pulls to standing 002

Evelyn pulls to standing 005

Evelyn pulls to standing 009

Evelyn pulls to standing 011

Evelyn pulls to standing 013

Evelyn pulls to standing 015

Evelyn pulls to standing 018

Evelyn pulls to standing 020

Evelyn pulls to standing 024

Evelyn pulls to standing 026

She thinks she’s very clever.

I agree.

{ Comments on this entry are closed }

Evelyn resorts to cannibalism.

by Veronica on June 18, 2013

in Evelyn

Evelyn snuggling

At 2am, Evelyn had a big seizure. I poked her cheek, changed her position, shook her hands and finally settled in waiting for it to pass, listening to her breathing change. Normally, middle of the night seizures end with Evelyn needing resettling and then falling back asleep. Not last night though, as she came out of it, realised I was watching her and decided that it was time to play.

First, she needed to examine my ears. I’m not sure what she thought the things stuck to the side of my head were previously, but last night they were the most interesting things ever. Then she bit each of my fingers in turn, presumably to make sure they were all made of flesh. She flipped and spun, bit my nipple – a new trick, turned herself into a baby hat draped around my head, and finally, FINALLY, fell back asleep after blowing raspberries all over my hair.

I am not at my finest at 2am, let alone 2am on a day that has included having the flu, but I had to laugh at the glee on Evelyn’s face when she clambered all over me.

Babies are nice, and Evelyn is the nicest baby of all. She mostly smells good, she’s very snuggly and we’re working on blunting her teeth with rusks so that cannibalism doesn’t become a life choice.

Evelyn has learned to commando crawl and she is very fast. She chases Amy down to her bedroom, giggling, before Amy carries her back out to me, flopped in her arms. Amy puts her on the floor and races off to resume her game and Evelyn chases her as fast as she can, before Amy drags her back to the living room. Repeat, ad infinitum.

She tried to fly the other day. I can’t say she’s very good at it, although I suspect she bounced when she flung herself off the edge of my bed after a nap. I hadn’t tidied my bedroom yet and she landed on an abandoned pile of pillows and a spare doona. Messiness has its upsides. The next day after her nap she shouted at me and I found her peering over the edge of the bed looking at the floor fearfully. I think I need to build a better pillow fort to stop her getting out of her cot.

Evelyn bites now. Often. Cheekily, she looks at me while she’s breastfeeding and CHOMP she goes, before she smiles at me prettily. I’ve tried explaining that milk tastes terrible when laced with blood, but so far, no luck. I’ve also tried shouting, cringing and grumpily putting her on the floor with no more breasts, but nothing works. The worst part is not actually being bitten, it’s waiting for the bite. It’s quite hard to relax when you’re waiting for a cannibalistic baby-toddler to nip you. She also tried biting my neck, so maybe she’s part vampire. I hear that’s a “thing” now, if Amy is to be believed.

She is amazing, and bright and bubbly and she makes me laugh every day – usually by trying to eat my face. She snuggles, and adores her siblings and causes untold chaos.

We wouldn’t have it any other way.

{ Comments on this entry are closed }