zombies are going to eat my brains but they’ll have to deal with my triffids first

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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Invasion of the garden eating monsters.

by Veronica on March 13, 2013

in Animals, Garden

Nathan and I were playing Minecraft the other night when we heard a scream. It echoed around the entire house, leaving us listening for the sound of a baby waking up, or a terrified child.

[Related, yes, we play Minecraft together. It’s not just a game for children. Shut up.]

When no one woke up, we looked at each other and sighing, headed for the torch.

“It was, wasn’t it?”

“Yep. It was a possum.”

I knew we had a possum, because the other night, she was dancing an irish jig on the roof above my bed at three am. Later, I prayed for her death, while wondering how wrong it was to hope for something that inconveniences me personally to, you know, DIE.

We headed outside to our one large gumtree on the property and started looking. BANG, there she was. I glared at her and she chittered at me anxiously as I shone the torch in her eyes, wishing that my torch was actually a laser so that I could get rid of the destructive fucking thing.

Not that I’m bloodthirsty or anything.

(I am.)

It’s no secret that I don’t like brushtailed possums. My wish for them to pack up their bags and move far far away from my house is well documented and loudly voiced. They’re destructive. They kill my baby trees. They break tree branches. One fucker has been stealing my chicken eggs.

I am not impressed to have yet another one living near my house.

However, if I’m really lucky, this one will also get hit by a car, at which point I’ll do a little dance of glee, before composing myself and celebrating internally.

I am such a bad person.

This is why I need a protective ring of triffids around my house. Not only will they take care of marauding possums, but I can put them to work hunting down the mice that are currently eating all my seedlings. Sure, they might kill me too, but DETAILS.

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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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Internet! Why didn’t you tell me that I was doing it all wrong? Here I am, firmly up the duff and yet I didn’t have a sponsored post and giveaway announcing the pregnancy, nor have I managed to effectively monetise my bump.

And don’t think that I am talking small sidebar advertising – no, I want branded maternity wear and a whole new wardrobe for this kid. Not to mention, a new cot and pram and assorted fripperies.

I hear that fripperies are the absolutely latest thing in baby fashion and I want to know why I’m not being drowned in offers to fripperise my nursery. Babies only need somewhere to sleep, boobs and clothes? PFFT. They need the latest FRIPPERIES I tell you.

I’m 27 weeks pregnant now, my blog should be nothing by All Baby, All The Time. I need to throw out all of the toys that my children keep in the spare room and turn it into a tastefully decorated nursery, complete with mobiles and a thousand dollar rocker (that some nice sponsor will gift me).

Pregnancy is the best thing that can happen to a mummy blogger, according to everything I’ve ever read, and I just want to know why it isn’t doing anything for my page views. Is there not enough drama? Am I too busy retching in the garden and collapsing into bed to actively seek out these opportunities?

Will I look back on this pregnancy once my kid is born and regret bitterly not capitalising on my fertility while I had the chance? This is going to be my last pregnancy ever, surely I should be leaving the world of child bearing with a bang, rather than a whimper?

I absolutely will not take responsibility for my own pregnancy and buy anything myself. It should all be laid on for me. The baby clothes that I was planning on putting on this child are (GASP) third-hand now and have been well loved prior. This isn’t good enough, Internet and I want to know why nothing is being done.

And are we forgetting my poor autistic children. Surely I only gave birth to them and their quirks in order to monetise them effectively. They don’t make me laugh regularly, or cover me with kisses – no, they’re merely blog fodder.

Don’t you know, it’s all about the page views? Pregnancy, babies and children with extra needs are all big business and I can’t help but feel that I am missing out on a giant opportunity here. Not to mention my broken joints. Surely I only blog about those for the extra attention, not for the education factor. Who wants to educate people about autism and hypermobility? Not me. I just want free shit.

Obviously, I am doing it all wrong and ought to be kicked out of the club.

 

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I confessed that I was not okay during the week of RUOK day. The irony there was that despite the lovely comments, not one person actually asked if I was okay on the day. It seems from my circle of friends, I was not the only one having a minor breakdown that week.

Despite the mental unloading that I did on the blog, I am still not okay. Mental wellness doesn’t seem to be a tap that I can turn on at will, which is a shame. I’m sure we’d all be lining up to fill our buckets if that was the case.

It feels like I’ve been fighting for a long time. Fighting to have professionals believe that I was sick, fighting for a diagnosis, fighting to be treated as a human being instead of a teen pregnancy statistic, fighting (again) for a diagnosis, for help when we were having issues with secondary infertility, to having someone take me seriously and finally, when I was diagnosed, fighting to be believed again. Full circle. Fuck me.

On top of that, there was cancer, death, autism, behavioural issues, and on and on and on. It’s like herding cats, every time I get a handle on one, seven disappear on me.

[Digression: When I was 41 weeks pregnant with Amy, aged 17, I developed a chest infection and couldn’t breathe. Living in the city, having quit my job months before, I didn’t have a regular GP that I could visit easily, as he was an hour drive away. Nathan was working nights and by the time I realised how sick I was, he was asleep.

I rang the pregnancy assessment centre for advice – something I had been told over and over to do, for any issues. I was a high risk pregnancy as it was and so, I expected advice, if nothing else. The midwife who answered the phone was short with me, got all of my details including the overdue nature of my pregnancy and asked me to hold please.

Unfortunately, she didn’t press mute on the phone and I could hear her bitching about me to her colleagues. “She’s 17, says she can’t breathe properly, she’s 41 weeks pregnant, of course she can’t breathe properly. She’s been down here on and off for the last couple of weeks, attention seeking. God. She says she can’t even make it to her regular GP. I don’t know what I’m expected to do about her issues.” She then picked up the phone again and I was crying by this point, unwell and very pregnant and also very sick. “Are you there? I’m sorry, there isn’t anything I can do for you.” I replied “Maybe not, but next time have the decency to press mute on the phone before you complain about me.” She swore and hung up on me.

You say that young mothers aren’t treated any differently? I beg to differ.]

Anyway: Issues with medical professionals, I have them.

I was coping. I was doing well, I was smiling and working and laughing and then I woke up one morning, and I wasn’t coping anymore. I sobbed for hours, had a minor breakdown and hid myself in a book for the rest of the day.

I am decidedly not okay and I’ve learned that it is okay, to be not okay. That said,  I am sick to death of bouncing from one extreme to another, from abject depression, to panic attacks, to manic behaviour and wanting to frantically FIX everything, because surely things would be easier if the inside of my house wasn’t purple.

The roller coaster ride has turned my stomach and I would like to get off now.

I rang the psychology clinic today and asked for an appointment. Despite being quite busy (their words), I now am the proud possessor of an appointment on Tuesday afternoon and since receiving the phone call back, I have been fighting off waves of panic.

Despite what every single medical professional I have seen has put me through, I am holding on to the fact that this person will help me. That I won’t be discarded as too hard, or too broken, or too complicated, and sent home to cope on my own again.

I am sick of coping on my own. I would, for once, like someone else to help with this. To come up with a plan and insist that it will work and tweak it if it doesn’t. Not delete the plan altogether and leave me without any safety net.

Surely that is not too much to ask?

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