Food-Issues

YOU GUYS. The upworthy headlines drive me crazy. So crazy of course I had to use one, because IRONY. Or something.

(This isn’t ironic, it’s just annoying.)

Yesterday was supermarket day and Coles had strawberries on special. When we got home, I shared the strawberries with Evelyn and YOU’LL NEVER BELIEVE WHAT HAPPENED NEXT.

Oh wait, yes you will. Because of course she’s allergic to strawberries suddenly.

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I put her to bed shortly after these photos. 45 minutes later she was awake, screaming, with a sore tummy and a even splotchier face. No breathing problems or swelling though, so thank god for small mercies.

After panadol, cuddles and lots of love, she let me put some soothing cream on the angriest of the red bits.

Strawberry allergy. Grumble grumble grumble.

She had a bad night and today seems like her tummy is still causing a bit of pain, but the redness has eased, leaving behind a big eczema flare up.

On the upside, strawberries are much easier to avoid than peanuts or eggs.

And she’ll probably grow out of it.

And it’s not that big a deal in the scheme of things.

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When you’ve got a child who won’t eat, everyone is full of advice and admonitions that it’s all normal. Which it is, in 99% of cases. Toddlers are insane creatures who want to live on tina wafers and air, with the occasional cracker or chicken nugget thrown in.

But Evelyn’s issues aren’t like that.

After a huge amount of success with our new therapies, we were working on getting her to eat enough at each meal. Slowly, the amounts were increasing from one teaspoon through to 100g, through to 150g, four times a day. Sure, mealtimes required more planning, a certain amount of structure and we had things we did that worked – but she was eating. Albeit, only smooth purees, but who cares? Anything can be blended.

But a week ago, Evelyn had a pain reaction during swallowing. All our work making food a safe fun thing, and our high chair a safe place went out the window. Evelyn doesn’t trust food. All my promises of “this won’t hurt” doesn’t mean a thing when neither of us believe it.

We don’t know why sometimes swallowing hurts. If we knew, maybe we could fix it.

So. Evelyn hasn’t been eating anything. Our medical team know about it, and they’re as upset at the big refusals as I am. Or maybe not as much as I am, because they don’t live with her. But they know, and they’re working on a plan.

It’s hard to not worry about her, and harder still not to obsess over everything she puts in her mouth.

Spoon food makes her gag violently at the moment, and spit it out frantically.

It’s hard, and I don’t know where we go from here. Current advice is to not push food, not to make a big deal out of it, and hopefully she’ll cut out the spoon refusal within the next week or so.

Until then, she’s eaten half a mouthful of watermelon today, and chewed on a variety of things that she didn’t deign to swallow.

How dare we expect her to nourish herself.

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An early minute

by Veronica on December 12, 2013

in Evelyn, Food-Issues

This morning, I asked very nicely if Evelyn and I could come home early today. After all, she’s eating just about as well on the ward as she would at home, and aside from documenting everything that passes her lips, we weren’t doing anything different there.

Except she was screaming every time we went back into the room. And being generally pissed off about being stuck in the city.

But, all went well and after a big blood draw and a nap, Evelyn was set free at 2pm.

I am so exhausted, but so grateful to be home right now, instead of clock watching on the ward, waiting for dinner and then freedom.

Tomorrow morning she has a barium swallow done, and I’m not entirely sure how they’re planning on getting enough barium into her, but eh, I’m sure they have a plan. Maybe. After that, we should be looking at discharge, with a follow up as an outpatient next week.

Evelyn is so glad to be home, clapping gleefully when we walked in the door. She’s running around right now, climbing things and causing chaos.

I’m about to have my first decent unrushed cup of tea in days. And a chocolate biscuit.

Bring on the weekend.

hospital dinner

This is yesterday’s hospital dinner. Pureed everything, including meat, which had the consistency of pate, but weirder. She didn’t eat any. I didn’t blame her. Today we took in all our own food, just to make it easier. And less gross.

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How much fat does an apple contain?

by Veronica on September 21, 2013

in Evelyn, Food-Issues

pediasure

Do you know that a lot of yogurts only have 4% fat?

Gippsland Dairy is better, they have 6.5% fat. Ski Divine has 7.8% according to their website. Danone is even better – less sugar than Gippsland and Ski and 8% fat. But Farmer’s Union Greek Yogurt has a total amount of 9.7% fat and no sugar at all.

Unfortunately the lack of sugar makes it almost unpalateable for Evelyn, unless I add things to it, which negates the fat percentages. If half the yogurt eaten is actually applesauce (made from pure apples, high in vitamin C, containing carbs and energy, but not enough nutrition to live on), then it’s less beneficial than 4TB of plain Danone yogurt.

This is not a sponsored post. This is just where my head is at lately, while keeping a food diary for Evelyn and trying to add Pediasure to all the things. This morning I made whole egg custard because Evelyn both enjoys the taste and can swallow it. I added Pediasure to the end product and voila, there was three tablespoons of highly nutritious food for morning tea.

I cheered because she managed 5 tablespoons (FIVE, count them, FIVE) of thin porridge with yogurt and pediasure this morning for breakfast.

Why yes, I am going a little insane, obsessing over everything Eve puts in her mouth. But that’s my job. I’m her mother and a toddler cannot live on breastmilk alone as our (new, lovely) dietician pointed out to me the other day. So I’m keeping a food diary, writing everything down and trying to replace day feeds with pediasure bottles.

You wish you were me right now, don’t you.

Mothers of toddlers everywhere are attempting to get their special snowflakes to eat sandwiches at lunchtime. I’m feeding my child ice-cream and custard. It’s a big perspective shift for me, who originally felt that toddlers should survive on everything that isn’t sweet, unless it’s fruit and then, go for your life.

Welcome to Reality, Veronica. Here, have a cookbook, a list of fat percentages, and a can of nutritional supplement. YOU’RE GOING TO NEED THEM.

We’re lucky. Evelyn enjoys food still. She likes to taste everything, even if she cannot swallow a lot of it. This is a good thing, I’m told. She’s just as likely to eat a piece of steamed cauliflower, as a spoonful of ice-cream (even if the cauliflower doesn’t have nearly enough fat), and she adores cheese cubes (better) and rice crackers (eh, practically empty nutrition).

So here we are.

Bottles of partially tasted supplement litter my kitchen sink and I’ve taken to wondering if syringe feeding pediasure would be easier than giving bottles. I make them up in 50ml lots now and throw out 45 ml when after two hours Evelyn has had three sips. Maybe it’s the bottle, maybe it’s the taste, maybe it’s that Evelyn doesn’t seem to get hungry.

Who knows?

It’s complicated.

Until something changes, I’m making custards, ice-cream and bottles in equal measure.

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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.

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