Life

Ivy Girl **UPDATED

by Veronica on September 4, 2008

in Life

Ivy is beautiful and Ivy is sick. Ivy is only 2.

And yet, at age 2, Ivy has seen the inside of a hospital more times than anyone should have to. Ivy has a rare immune deficiency IgG. Because of that, she has Pemphigus which is an autoimmune response to the IgG  [please note, these are photos of Ivy’s pemphigus blisters and they may be a little graphic for some people].

These are horrible conditions that no adult should have to deal with, let alone a child.

Ivy is currently on Prednisone and Mycophenolate to help control her symptoms and blistering; however, these drugs suppress her immune system, on top of the deficiency.

Ivy’s mum says “…she was never good at mounting a response to infection but the meds make it worse.”

She frequently ends up in hospital on IV antibiotics, just to help control the infection in her ears that never seems to completely disappear. She cannot be exposed to a simple virus in fear that it will land her back in hospital for days at a time.

She can’t go to the playground to play.

She can’t attend playgroup.

She can’t head to the supermarket with her mother.

She might never be able to go to regular school.

She is only 2.

However, there is a treatment that would give Ivy a good chance at normal life.

It’s called IVIG (intravenous immunoglobulin) and it is a transfusion of immune cells that would bolster Ivy’s own immune system and help her fight infections in a normal way.

Think about it, a chance at a normal life. A life that doesn’t involve frequent hospitalisations.

Unfortunately, the officials at the Australian National Blood Authority have denied the request for Ivy to have this treatment. This treatment that could very well keep her out of hospital. So far, all appeals have been in vain.

As Ivy’s Mum says on her website:

“My little girl is going to have a life of hospital admissions and illness, some chronic, some life threatening, because some guy in an ivory tower decided she could survive without this medication.”

How is this fair?

What if it was your child? What if it was your sister’s child? Do the rules change for daughters of the officials? How come someone with a big stamp gets to say yes or no to this little girl’s chance at a normal life?

It shouldn’t be like this.

All I am asking for is 2 minutes of your time. If you could just head over here and sign our petition, we might be able to get enough support to convince the National Blood Authority officials to change their mind.

Ivy is only 2. She deserves a chance to be normal.

Please, a minute of your time could make all the difference for Ivy.

Sign Petition

***UPDATE: As of 5pm today (my time) Ivy has been approved for her IVIG. Her doctors saw the petition and decided accordingly to fast track the decision process and approve her for treatment. I cannot thank everyone enough. Everyone who signed, everyone who blogged about it, posted it in forums, twittered and stumbled. I CANNOT thank you enough.

This blogging community is amazing. YOU are amazing.

If you have a blog and you would like to help spread the word, please feel free to copy this post and link back here to me at Sleepless Nights [so that I can follow where it has gone].

And if you would like to follow Ivy’s story (and that of her twin brother and older siblings) you can find them here, at My Three Ring Circus, written by the talented Tiff. All photos were taken by Tiff as well.

{ Comments on this entry are closed }

Amy

by Veronica on August 31, 2008

in Life

Amy is an entity all of her own. Seriously, the kid is a handful. A funny handful, but a handful.

She has a pink ceramic dragon that she carries around alot.

Amy – ‘Mummy! My monkey!’

Me – ‘It’s a dragon. Say dragon’

Amy – ‘Monkey!’

Me – ‘But Amy, it’s a dragon. See?’

Amy – ‘No, it my MONKEY!’

Me – ‘Dragon…’

Amy – [to her dragon] ‘Hi monkey, come here walk walk walk’

Me – [to no one] ‘It’s a dragon.’

[Additionally, I just asked her where her ‘monkey’ was so I could photograph it. She had it this morning, but I can’t see it now. Stupid idea, she is now running around the house crying ‘monkey! OH NO! Gone! MONKEY! GONE! OH NO!’]

***

She sits next to me and asks ‘One?’

‘One what?’

‘Please? Have one?’

‘One what?’

‘One!!!’ [Starts to cry]

‘Sweetie, you need to tell me what one is’

‘PLEEEEEEASE…’

‘What do you want?’

[Amy runs to cupboard and points to it]

‘No sweetie, we aren’t having any chocolate now’

‘PLEEEEASE? ONE?’

‘No sweetheart, no chocolate’

‘Mummeeeeee. OH NO!’ [tantrum]

*sigh*

‘Nope, no chocolate today’

[Amy loses her shit. No chocolate obviously equates to no light or love in her life. Heh. Whose child is she?]

***

She turns 2 on Friday. Sorry, but how did I miss all that time passing? FRIDAY. TWO.

God help me.

Also? After a tantrumous Wednesday out in public, I want to get a t-shirt printed for me saying ‘She’s Two. That’s the problem’.

I really REALLY want a t-shirt printed with that.

***

But, aside from all the Two-ness that has stolen my toddler’s body, she is great fun. She eats anything and everything, but one of her favourite snacks is sliced cucumber with white balsamic vinegar. She would eat capsicum whole if I let her (unfortunately the seeds get everywhere) and she eats TONS of olives. Seriously, I think if I gave her a choice of olives and cucumber or chocolate, she would have a hard time choosing and would demand everything all at once.

She runs and demands kisses at every opportunity. She climbs into my lap asking ‘hugs me!’ She growls at the animals in a perfect imitation of Nathan and I.

And the crowning glory? The one I am SO not proud of?

She says fuck.  Not very often, but when she does say it, it is used in context. Nathan and I nearly died the other day [laughing] because we were discussing ducks and Amy piped up with ‘Fuck a duck!’ Luckily she didn’t realise that we were laughing at her and hasn’t repeated it again.

She’s Two. Christ.

{ Comments on this entry are closed }

The Situation

by Veronica on August 16, 2008

in Life

5 and a half weeks ago, Nathan had a job. It was a secure job, mostly and he had been working there for 3+ years. He would even have been due to take his holidays about when this baby was due, which was nice.

And then, the company was sold and new management came in. Worker’s hours started to get cut and nothing management did seemed quite above board. New workers were paid in cash and not to the award rates. Taxes were looking a little dodgy.

To be honest, I think this company has kept the Union in work single handedly over the last 6 months.

It’s funny you know, looking back I can see all the things that were steadily going wrong.

One night, while at work (Nat’s hours were 12-6am), Nathan got a little hungry. An office he was cleaning had an open packet of Pringles on the desk. Unfortunately, the office workers in this particular office were incredibly attached to their potato chips and they had set up laptop camera’s to ‘possibly’ catch anyone taking them. Their excuse was that their Tim Tams had been going missing and they wanted to know why.

[Just a side note? Tims Tams are the one biscuit Nat WON’T eat]

Caught red-handed (pringle fisted?) on an illegal camera setup, Nathan was in a little bit of trouble. The Client that he was contracted to work for asked that he not work on site (there are many off-site places he could have been moved to) until the matter was sorted.

Unfortunately, Nathan’s supervisor had a personal issue with Nathan (men!) and fired him on the spot. DESPITE the Boss not wanting him fired. DESPITE Nathan not having done enough to warrant sacking. DESPITE us now having a good case for unlawful dismissal.

He was fired.

Out of work.

So, that was nearly 6 weeks ago.

The only reason we managed to not go insane was that it happened at the exact same time as our tax return was cleared. So financially we were fine.

Mentally though? His supervisor had no right to fire him. He wasn’t in charge of the hiring and firing and was told specifically to NOT fire him.

After a phone call or two from the Union, trying to get shit sorted, said supervisor changed his phone numbers and refused to talk to the Union.

The head honcho declared all his hands tied and said ‘I’ll see what I can sort out’. He never did. He also changed his phone numbers and refused to call anyone.

You know what I find even more ironic though? Nathan’s supervisor, Mr. I-Have-All-The-Power, was recently sacked for mismanagement. So was his second in command.

And slowly, slowly, we see Nat’s old company going down the drain (so far down that fucking drain) and we’re thankful that Nathan is out of there.

Because you see, as stressful as it all was, Nathan starts a new job very shortly. A DAY job.

I am thrilled. A little apprehensive about how I am going to go with a newborn and a toddler alone, but hey, I’ll cope.

And dude, anything that got him away from that company can only have been a good thing. No matter quite how it came about.

All over a few (seriously, he took FOUR) pringles.

Fuck me!

{ Comments on this entry are closed }

Some Things Are Only Meant To Be Exit Holes

by Veronica on August 13, 2008

in Life

And no, I am not talking about anything dirty.

At least, not today.

Tonight, Amy was happily eating her dinner while I sat in front of her (in a death defying stunt, risking thrown food and a plate to the head) in the beanbag, reading.

She started to whine.

‘Nose Mummy! Nose!’

I got up (I’m well trained) grabbed a tissue and had her blow her nose. Happiness reigned, at least for 2 minutes.

Until she started again.

‘Nose! Mummy, nose hurts!’

I thought about it. I hoped that it was just a cold, but I suspected otherwise. You see, Amy had been sitting behind me eating the last of her dinner. A dinner that had peas in it.

You see where this is going, don’t you.

I picked her up and promptly tipped her upside down so I could see inside her nose. Sure enough, there it was. A bright green pea, wedged into her tiny nasal cavity.

I sat her upright (just in case the forces of gravity could possibly pull the pea into her brain, just by me thinking about it) and grabbed a tissue.

Wheedling and coercing her, I got her to blow her nose. No luck getting rid of the pea, but she did hand me a good deal of snot from the other nostril.

Cue the crying. Her, not me.

‘Hurts! hurtshurtshurts!’

By this stage, Nathan was sitting next to us, using his awesome powers of Daddy to try and get the pea out as Amy used her toddler powers of nose picking to shove the pea in deeper.

[IE: he was trying to get her to blow her nose while she was showing her fingers up there instead]

I rang Mum to find out if we, as children, had ever stuck anything up our noses. No luck.

I rang the doctor (on Mum’s suggestion) to see what he had to say.

He suggested tweezers to mush the pea. Luckily the pea in question was a cooked pea and therefore mushable. His reasoning was if I mushed it, she would either sneeze it out, or sniff it back [ewww].

Which was exactly what Nathan had suggested to me before I made any phone calls. Kudos to Nathan for having brains while a crisis was happening. Me? I just wanted to laugh in disbelief.

Amy was laid back on Nathans chest and he held her arms and head [nicely of course]. I prepped my tweezers by making sure I had the blunt pair in my hands and squeezing them in the hope that they would fit in her nose.

I shone a torch up her nose and she relaxed back into Daddy.

And thank fuck, but the pea was easily removed with tweezers and Amy didn’t even wiggle. I was dreading any poking I might have to do to turn a pea into mush. Not to mention the pea snot that I was likely to get covered in.

So now I say to Amy.

Baby? Some things are only meant to be exit holes. Your nose is one of these things.

{ Comments on this entry are closed }

Dear Self

by Veronica on August 8, 2008

in Life

Shamelessy Sassy has just written a letter to herself at 18 and I am shamelessly stealing her idea. (She won’t mind).

Dear 18 Year Old Self,

You need to remember that Vitamin E cream is probably the best thing for your episiotomy scar. I know that you gave birth 10 weeks ago, but by my count you will probably spend the next 3 weeks in a good amount of pain. Also, buy Nathan some porn and a box of tissues, because sex is going to be painful (and boring because your libido has run away with the fairies) for at least another 6 months.

I want you to try really really hard to not get uptight about trying to conceive another baby. Trust me, it does happen eventually, although not without alot of stressing on your behalf. Maybe just lay back, take it easy and grab as many orgasms as you can in the meantime.

You daughter doesn’t sleep. Don’t worry, she won’t sleep ever. I still know exactly how you feel, athough giving a 10 week old a boob is much easier than having to reason with an almost 2 year old about WHY it is still night time. Revel in the silence giving boobs.

Shortly you will move closer to your parents. Don’t give yourself any ideas about days without a baby attached to you though, you still have another 10 months before she will consent to leave your presence without a meltdown. I know colic/clinginess/general amyiness is hard but just power through it, because eventually? Amy does turn into a pretty easy going toddler.

[Then she loses that easy goingness to the toddler terrors of two, but hey, we don’t need to scare you yet]

As much as you don’t sleep (and never will) and feel like you have no time for yourself, don’t worry. You do end being happy. You also don’t strangle Nathan at any point, despite the both of you having trying moments. Eventually he realises that staying home with a baby is hard work. Eventually.

Also, please remember to do your damn pelvic floor exersises. Having to remember them when you already have a baby in utero grinding on your bladder is not the best thing. Clench and HOLD. Clench and HOLD. Repeat 10 times an hour at least. Remind yourself that this will make things better later. You really don’t want to have to get up to pee 10 times a night [although, so far I have managed to avoid peeing on myself].

Take it easy. Lay in the sun. Take time out for yourself. Even 5 minutes will leave you feeling less murderous towards other people who don’t have a baby attached to their front 24/7.

AND… if you really loved me you would buy a large stash of chocolate. At least enough to keep us busy for 3 years. Save it up or something, because nowadays? We don’t live so close to the supermarket, petrol is fucking expensive and I just ran out of the last of my stash. If you could do that for me?

Lovely.

Love, Me.

[***Also, I just noticed and HAD to point out, it is the 8.8.08 today and this post? It’s permalink is #888. Loving the coincidence]

{ Comments on this entry are closed }