My head is going to explode. Probably

Ehlers Danlos, the baby that won’t swallow and a series of tests. Plus severe anaemia.

by Veronica on July 26, 2013

in Ehlers Danlos Syndrome, Evelyn, Headfuck, Seizures

We saw Evelyn’s paediatrician yesterday.

Digression: How many of my blog posts in the last twelve months have begun like that, I wonder? It seems like it’s all I ever begin with. We saw “insert medical professional here” yesterday and BLAH BLAH your baby is WEIRD. Is it just me? Am I the only one boring myself to tears?

Sorry. Back on track.

We saw Evelyn’s paediatrician yesterday, who immediately let us know that Evelyn’s last lot of bloods showed her to be severely anaemic. Her haemocrit levels were a 3, when they should be at a minimum of 30, and her ferritin levels were a 2, when they should be 100.

Iron supplements have been started and thank all that is holy (seriously, rub your Buddha, praise your God, pet your kitten, whatever floats your boat) she is managing to swallow her meds. Sure, it takes me more than five minutes to give 3ml of iron, a drop at a time, but it’s going in and it isn’t being spat or choked on. WINNING.

Of course, her serious anaemia leads into some serious concerns about the fact that the baby isn’t eating anything except breastmilk and the occasional accidental pea.) Thus far, I’m managing to meet her calorie needs, as exhibited by her lovely chubby cheeks and no weight loss, but I’m not managing to meet her nutritional needs any more – not without some form of supplementation happening. And yes, before you ask, I’ve added an iron supplement to my diet as well, just so that we can cover all bases. Because, EXHAUSTION.

Evie has been referred through to the Hospital Dietician, she is being booked in for a Barium Swallow to check for structural issues, and we’ll start the baby steps to get her coordinating her swallow effectively and hopefully transitioning back to solid food again.

“You need to realise though, this process is going to take months, at least. It won’t happen overnight.” says our Paed, as I rock and laugh maniacally in the corner. How do you supplement a baby who won’t take a bottle or cup? HAHAHAHAAA.

They can work that one out for me.

In any case, Evelyn is under the care of a fantastic team, both at St Giles and The Royal Hobart Hospital. I cannot speak highly enough of their care and commitment to Evelyn’s health.

She’s also been referred through to our geneticist, so that he can look at the probability of Ehlers Danlos (dislocating joints AHOY), or whether there is more testing that needs doing, to look for other conditions as well.

In the meantime, we have a sleep deprived EEG booked for next week. I have to wake Evelyn up at 4am to make sure that she is nice and exhausted and angry and OPINIONATED for the EEG sensors, before hopefully falling asleep and exhibiting her constant sleep-twitching. I’m not looking forward to that one. Actually, I’m not looking forward to anything much at all. The thought of trying to get Evie to do anything she doesn’t want to do fills me with a special kind of dread.

Upside: It’s her birthday on Sunday. I have successfully kept this complicated baby alive for almost an entire year now. CELEBRATIONS. CHOCOLATE. CAKE.

I think I’m winning.

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#Iamnotaproperfeminist BECAUSE VAGINAS*: Why we started the hashtag

by Veronica on June 23, 2013

in Soapbox

Yesterday morning I was on the phone to Frogpondsrock. We were bemoaning the fact that the #convoyofcleavage had sparked such disparaging language, that some feminist circles were angry about the terminology used, and the “slacktivism” of the whole thing.

I can’t remember who said it first, but one of us stated that we obviously weren’t proper feminists because we don’t know the secret feminist language/we like our husbands/don’t think feminism should be an exclusive club.

Then we got the giggles, because we think we’re hilarious. Suddenly, we had a twitter hashtag on our hands.

Thus is began with both of us tweeting on the #Iamnotaproperfeminist hashtag and amusing ourselves.

We wanted to poke gentle fun at the idea of there being a “right” way to be a feminist. Sometimes, people in the know get so hung up on the terminology used that they forget women all over the world are coming at feminism from a perspective unique to themselves. We’re not all the same person, with the same circumstances. To state unequivocally that feminism is THIS THING and not THAT THING is to discount the experience of women different to you.

By yesterday evening, our hashtag had taken off, grown wings and flown far away from where it started.

All across twitter, women and men were joining in to promote feminism without borders. And not just cis women, but trans women too. I count this as an extra success, because if their tweets are anything to go by, trans women are told they’re not able to feminist properly more often than I am.

Feminism has become something quite narrowly defined in recent years. Women who study feminism at Uni bristle at those of us who didn’t complete a degree calling ourselves feminists.

It’s all a bit ridiculous.

How do you define feminism anyway?

With all the drama and terminology complaints, it’s no wonder that young girls have been stepping back from calling themselves feminist. Who can be bothered when you have to always make sure you’re using the perfect word for the job, and inevitably, we all end up “doing it wrong” anyway.

Young women want to be feminists. We want equality. We just don’t want to have to constantly talk about what feminism is and isn’t – and I’m pretty sure that we don’t want women who are further along the paths of education (self, or otherwise) to be pointing out how we’re not being the perfect feminist.

I am not a proper feminist hit back at the stereotypes, at the exclusionary language, and it showcased the discomfort a lot of us were feeling at being told there was only one true way to do this feminism thing.

I am not a proper feminist, because there is no such thing.

And that’s why it’s awesome.

—

* Because VAGINAS reference from here.

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The depths of uncertainty

by Veronica on January 29, 2013

in Evelyn

Some days I wake up and I’m sure everything is going to be terrible. Plagues of locusts; hordes of zombies; houses imploding – that kind of terrible. Those mornings are the easiest in a way, because when everything fails to go wrong then I can be pleasantly surprised. I’ll look around and realise that I’ve drunk an entire cup of tea before it went cold and my toast is still warm; that the garden is still intact and everyone under my watch is still alive and realise that maybe it’s all going to be okay.

Other days, I’m wrapped in the warm cotton wool of certainty. Everything is going to be fine. Of course it is. Nothing worse than spilled milk and cereal on the floor is going to happen and we’ll all make it to bedtime happy and healthy.

And then there are the days that crack like eggshells, going from everything is going to be fine to holy fuck, nothing is ever going to be the same again.

I’m talking about Evelyn of course. I’m always talking about Evelyn lately. All I ever fucking talk about is this baby and whether her issues will resolve and what those issues are and how we can help.

I get smacked in the face sometimes by her issues, because it’s easy to forget, wrapped in this warm cotton wool, that everything is not okay and that our future is not certain. It’s easy to forget that she is six months old [oh god oh god, she’s six months old and look at her, will someone just fucking LOOK AT HER and tell me with their magic crystal ball what our fucking future is like please] and that she is not progressing as normally as we’d all like.

Sure, she’s not missing everything yet, but she’s not rolling over anymore and so that milestone doesn’t count because it’s not something she added to her repertoire. She’s not babbling. She’s not using both her hands effectively. She’s barely using her right hand at all. She only manages to put things in her mouth 30% of the time. Her right leg kicks repeatedly. She has very little control over her body.

And yes, I know that the optimists in the audience will point out that at least she is doing some things, some of the time. Trust me, I know how to count my blessings here. I also watch her and worry and it’s a hard worry to push down, because I mention small things she’s doing to her Paediatrician [her tongue trembles sometimes, and not in a feeding flutter, but a tremor] and he looks worried, but also pleased that it doesn’t happen all of the time, but still, he was worried and her tongue still trembles and I think it’s getting worse, but who knows? I spend so much time just WATCHING this baby that I don’t even know what is important anymore. Her desire to be a starfish [jerk all limbs outwards, arch back and screech because that is NOT what you wanted your body to do] or her twitching while she’s asleep [non-epileptic paroxysmal episodes, that look like complex partial seizures] or her jerky movements or or or or….

It’s just, enough already. I need a crystal ball and to stop being smacked in the face by the possibility that none of this will be okay.

I mean sure, it might all be perfect in six months, but you’ve got to give my brain props for showing me that it might just get a whole lot worse.

Thanks brain. I couldn’t do this without you.

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These are intolerable working conditions.

by Veronica on November 3, 2011

in Animals, Gotta Laugh

[Video: Now with captions]

Internet, I give you the baby birds that are screeching above my desk. BECAUSE I WANT YOU TO SUFFER WITH ME.

These working conditions are intolerable. I’ve tried complaining to the groundskeeper and maintenance man (Nathan) but he tells me his hands are tied and I need to discuss the issue with pest control (The Cats).

Either way, nothing is getting done and my ears are hurting.

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The key to success is failure

by Veronica on October 26, 2011

in Blogging

The key to success is failure. It sounds weird and like I’m going at things backwards, but this is one thing I have learned that holds true through everything.

I was reading Shae’s post about her epiphany and I was struck by how similar her thought processes were to mine. It’s easier to pretend that you don’t care about your blog, than to put it all out there and run the risk of failing. After all, failure is something that we hate and something to be avoided.Empty House

But is it really?

Every time I have done something, on this blog or in real life, that has failed, I’ve learned something. Sometimes it’s small things like how fast to whisk in oil so that my mayonnaise doesn’t split. Sometimes it’s when to keep my mouth shut to prevent my family hating me for twelve months because of something I wrote. Every step forward I make has been inspired by a string of failures.

This blog is no different and in fact it is the thing I fail at the most. I’ve never expected myself to be the perfect mother, or the perfect homemaker, but I did expect myself to be the perfect blogger. To be able to comment back every time, to read everyone and to write beautiful words that will resonate with everyone, every single time.

Blogging doesn’t work like that. Life doesn’t work like that.

My blog is becoming more successful. Showcase Tasmania is doing well, my subscriber numbers are slowly climbing and my traffic is sitting at a level I am comfortable with.

To get here, I’ve had to fail numerous times. For every five pitches I send, four businesses ignore me. For every contact I make and click with, there is someone who thinks I’m an idiot. For every blog post that does well on traffic, there are two that don’t.

Funnily enough, I’ve found that it is the small failures that I learn the most from. Working out what I did wrong and how to not do it again, I learn what I should have done instead. Sure, it’s trial and error a lot of the time, but that is life, isn’t it?

Amy blowing thistle resized

Failure is scary. No one wants to fail. We all want to be successful, all of the time.

However, I’m not sure that you can have success, if you didn’t build it on the back of failure.

And the only thing I can see that all successful people have in common is: They refused to give up and stop trying.

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