WHS Conference 09

We are home safely and (prolonged) seizure free thankfully...although I'm not so sure what went on with Littles today because he slept from midday to 4pm....we'll see where the night takes us i suppose.

This year it was in Coolingatta/Tweed Heads and organised

by J & S who are the lovely parents of Amy who sadly passed away in October 07. It was emotional for all of us knowing Amy wasn't with us but so much more so for J & S as you can imagine. They put on such a lovely weekend and spoke to the group so openly and honestly that it really was very emotional but strangely heart warming too.

I spent loads of time with some of the folk i didn't get a chance to bond with at the last conference and so i feel a lot closer to the group now. Embarrassingly i still don't know a lot of their names but i know who all the WHS kids are! We shared loads of stories and experiences over sandwiches and/or wine and bonded over our little community of our little people. The parents are all so different but the bond between us is incredible and so genuine.

The kids, geez the kids are amazing and so loving. There was plenty of hand holding, cuddling and even a kiss (thanks Riley!). It was amazing to see how much they had grown and learnt new things, and it was so nice to see the changes too. What i noticed most was that the kids not only share the same physical features, disabilities and/or health issues but (most of them) share very similar vocal noises. There's a talk Littles and i have every single day and i found my self having the exact same talk with the lovely Bethany. And then there's the squeal, i thought it was just an Elliott thing but a lot of them seem to do it too.

We spent all day at Wet N' Wild yesterday but the weather was a bit crappy and far too cold for My Littles and most of the other WHS kids which was a bit sad but a great opportunity to get a few last yarns in before we went our separate ways and until we meet in Ballarat in two years time.

AND, a big fat WELCOME TO THE WORLD to my new nephew Maxwell!!

what now?

What a crazy week we've had.

My weekend began with a much anticipated night away with my homies. We had it all worked out, good food, good grog, awesome company, a bit of Chibo (card game) and a whole lotta dancing. We started on the drinks as soon as we (finally) got the key in the door. We managed to cook dinner and get a game of Chibo in just before the power went out. It was funny at first because i think we assumed the power would come back on, but it didn't, so we froze ourselves silly and drank until the wee hours...like all good Aussie battlers would of course! It was a shame to miss out on the dancing but it was an awesome night anyway.

The following day it began. Oh the sickness. Oh the tears. Oh the sickness. We ended up getting home pretty late because of my sickness and thankfully Mum was okay to have Littles for another night while i recovered.

I picked Littles up and we lay around for the most part of the day. He fell asleep on the floor (which isn't unusual) and i decided to shut my weary eyes for a few minutes. I could hear Neighbours starting and then woke up properly when Littles went into massive fit mode.

I called the Ambulance and watched and waited in horror. One of the Ambo's had My Littles on her lap as she sat on a trolley/chair thing, he was still fitting terribly and was being "bagged" while we caught the elevator.

Much to my disgust, my neighbour was on the ground floor holding numerous bottles of half drunk liquor and said to me "what's goin on 'ere, Swine Flu?", I said "that's not actually funny dude" and we kept on moving out to the front of the building. While we're out the front i can hear him yelling and coming towards us. And because i'm so scared of this disgusting mess of a man and don't want him as an enemy, i turned around to give him a "it's cool" kind of look and he came out ranting "don't let them do nuthin, all he needs is Eucalyptus Oil if it's Swine Flu, Eucalyptus Oil will fix it!!!!". What really upsets me about this is that for a few moments there i was more worried about that psycho than i was of My Littles.

So anyway, it took about 20 minutes for them to stop the fit and approximately 4 days to give me inconclusive answers. At about 10:30pm they sent me home to get his new medication (Zorontin) so i came home, packed my bag but packed the wrong bottle of meds. So Mum drove back to my place to get it while i sat and watched my boy coming off the Midazolam and shivering like crazy. Oh hindsight hey... They gave him the meds that Mum went to get and within hours he was completely covered in a nasty rash and his eyes were so swollen that i could hardly see his usually big and beautiful googly eyes. He spiked a 40.3 temp and was admitted to the ward.

I was told a few different/conflicting things (what a surprise!) and I'm still none the wiser about what and why all this happened. All of his tests were clear and they hit me with yet another diagnosis of a "viral infection". I'm going with a severe allergic reaction to the new meds and coming off a drug (phenobarbitone) that seemed to actually stop these big nasty seizures. I'm told that Phenobarb is no good, but if it stops the seizures then I'd be inclined to say it's good.

We're finally home and Littles is doing well. He's a little on the whingy side but i think i'll allow it!

I'm really hoping the new medication (Frisium) will help for the obvious reasons but also so we can go to the WHS conference next weekend. Just the thought of being stuck on a plane with a seizure like that is extremely daunting.

Today, i felt bored, so bored and weirded out that i had nothing to do. I didn't feel like doing anything though but didn't want to do nothing either. Luckily AC came around for a pie, a few Profitterolls, a coffee and a yarn or else i would have been pulling my (straightened out of bordom) hair out.

Now I've blogged this epic, what now? Oh yeeeaaaahhhh my bed!

Gone Fishing?

Something very very strange has taken place between 9pm last night and 9am this morning.

The largest of my three goldfish has completely disappeared, nowhere to be found! I have scoured the floors and around the benches, i even took a little squiz into the bin in case he flipped himself in there, but nup, nuthin. I can't see how the little ones could have eaten him and there aren't any remnants of him left over in the bowl, so where is he??? I must admit, I'm kinda freakin out about this! I need answers!

Gh suggested that maybe he's with the missing Flaming Lips ticket but perhaps he's just gone fishing.

Briefly.

Just a brief update.

Elliott seems to be doing better today, he's back to river-dancing and eating fairly well. The great news is that he has put on almost a kilo in a month, A MONTH!!!, so we will be extending our middle finger's to his Paedatrician next week....perhaps not literally....we'll see on the day!

We're off to the see his Neurologist today which will no doubt bring more medication and hopefully some answers. Whatever Dr, just make them stop PLEEEAAASSSSSEEEEE!!!!!!

Have a lovely day my friends.

XL

What's crackin

Making : Faces with Littles

Cooking : carbonara

Drinking : coke zero

Reading: feel- Robbie Williams biography ha!

Wanting: to know if my littles is okay

Looking: at my lovely new 'her royal flyness' bag

Playing: bon iver- 'to emma with love'

Wasting: time waiting for my next editing gig to download

Sewing: a garter for a bride i don't know

Wishing: elliott could tell me he is okay...and that i didn't lend out my moonwalker book...i'll never see it again and it's out of print...dud.

Enjoying: my choc covered peanuts

Waiting: for the day i hear the word Mumma from my littles

Liking: having lovely people in my life

Wondering: what interviews i should conduct at the whs conference

Loving: you

Hoping: you had a good day

Marvelling: at the marvellousness of this city

Needing: a haircut

Smelling: bleach

Wearing: the usual- jeans and a black cotton knit

Following: this and that

Noticing: that robert got his own lyrics wrong on the live track 'untitled'

Knowing: i should not sweat the small stuff

Thinking: it's hard not to sweat the small stuff sometimes

Feeling: like i shouldn't have had those nuts

Opening: my tired eyeballs

Giggling: at littles riverdancing on me

Feeling: anxious

Another one of those days.

It's been another one of those days. My poor Littles has been having fits for most of the day and I'm thinking they must have started at least yesterday. He spent most of the day sleeping and I've spent most of the day watching him like a hawk and wondering if he needs to go to hospital. It's always such a confusing time because I'm pretty sure he's not sick, and if i drag him off to the hospital they'll just observe him and no doubt send him home so i'll just keep him here for now.... i think? We'll see, and take each minute as it comes hey.

On an up note, i had a really lovely weekend. It started on Friday where i met with some lovely ladies (and kiddies) and shared some yummo food and a few yarns, a much cherished day indeed. On Saturday i went on an awesome bar hoping mission with the good folk, it was purely for educational purposes of course! And just to add some adrenalin to the night we intercepted some mashed up kids from stealing a bike and somehow avoided being glassed by the really trashed kid in the group. And much to my delight, i woke with no glass or hatchet in my eyeball...wahooo! And on Sunday i bunkered down from the crazy winds and watch season 3 of Weeds...is there a season 4??

Ahh he's awake, gotta get my eyeballs onto him.

XL

My nostrils are burnt.

So much has been goin on in my head that i just haven't been able to write about it and really, It's all mostly sad stuff and shit stories...but this entry is not so sad but just so so SO disgusting i had to write about it...but it's also a shit story.

Today i thought I'd go for a lovely walk around the hood and maybe purchase myself something nice to cheer me up but instead I am sitting here blogging....because today, only one elevator is working and the other one is smeared, i mean SMEARED with human shit. So I'm stuck up here on the 14th floor... about to run out of cigarettes!!!

Just yesterday i was talking to my mate about how I'm trying not to let this building get to me because i then inevitably start thinking about my life, and how i got here and where I'm going which is all very overwhelming to me. I've written about my neighbour but that's just the tip of the iceberg. There's violence, there's drug addicts, there's garbage everywhere and there is HUMAN SHIT SMEARED IN THE ELEVATOR. What is going on man? Why? Why would you do that? Perhaps that tinny of Jim and Coke has something to do with it. I'm so disgusted i can't tell you. Why? Why? Whyyyyyyyyyyy?

While i was sleeping...

Things are looking up this week, wahooo! The boy is doing well and has recovered incredibly well from Seizure Fest. He's playing his keyboards at the moment when he should be sleeping....hmmm wish i were sleeping.

I wanna say a Big Thanks to everyone who offered their Love, soup and support last week.

Well, it seems my appearance on Deal or No Deal with GH and EL went to air on Friday and we missed it! I was so knackered from Seizure Fest, Beer Fest and The Lips Fest that Littles and i had a nap while it was on...bummer! Sources tell me my hair looked "Hot" and i didn't make a Dick of myself which means they must've edited it well because i was a total Dick on the day it was shot. Below is my lovely Blythe who came along too.

My heart and thoughts are always goin out to K, B, J, M and L but especially for tomorrow. BIG HUGS. XL

O what a night, O what a day.

Boy I'm buggered.

We had planned to have dinner and a few beers before The Lips but somehow NH lost one of tickets between his house and mine which is about 200 metres in distance, so we searched the streets and turned his bedroom up-side-down....which brings me to a highlight of the night. As i bent over to look behind NH's laundry basket there was this loud banging on the door and a scream of "oi! (bang bang) OI!! (bang bang) OI!!!!! (BANG BANG BANG)". It turns out NH's flat mate thought i was robbing them! I guess i did look a bit suspicious in my long leather jacket and peering through his stuff....with a beer in my hand. She wouldn't have been able to see my face because i was bending down so when i turned around and NH got up from under his bed she was MORTIFIED! It was hilarious! So anyway, we didn't find the ticket, we didn't eat dinner but we did squeeze in a travelin' beer here and there and we did manage to get a replacement ticket from the venue....phewww!

The Lips were amazing, something i already knew. Wayne (Lead singer/Songwriter) put himself into a massive clear balloon and rolled over the crowd as his entrance, pretty cool indeed and he seemed to be loving it. I could rant about how amazing they were but i won't. You know, there's always THAT couple who come from standing just behind you and then choose to move just in front of you... particularly if your the short-arse in the group...and yep, that was me last night. So they moved in front of me, they slobbered all over each other, they groped each other's arses and just when i thought it couldn't get any worse...he pulled out a ring and proposed! Needless to say, it got more disgusting because she said "yes". There's lots more i could say about them and the rest of the night but all i will say is, we moved positions, we loved Wayne and Co, we drank more beer and finally had a dirty (but sooo delicious) souvlaki at 1:30am.

I woke this morning to a hatchet imbedded in my eyeball, i drop a few pain killers, skull some water, head back to bed and turn on my phone. Minutes later Mum calls to tell me Littles is having a massive Tonic Clonic seizure and that the ambulance was on it's way. The seizure lasted around 20 minutes which is not by any means a good thing. Poor Nan, she looked horrified as she arrived in the ambulance with him on her lap and rightfully so because it's a horrible thing to have to watch and to be almost useless in aiding. We spent most of the day in the emergency department and after a bit of poking, prodding, a change in medication and a snooze, we came home. As soon as he got home he was stoked, he was rolling, squealing and Riverdancing all over me as per usual and was as happy as can be. He managed to nod off while i watched 'The United States of Tara'-Awesome Toni Collette playing a Mum with multiple personalities and Chris from Northern Exposure plays the husband!- Wednesday 9:30pm ABC!!!....anyway, he unfortunately got woken up by another seizure....and repeat. Today was another reminder that his mood doesn't always resemble what's about to happen. He is now lying on the floor sleeping off the emergency meds, poor little fella. It feels like it's 3 in the morning but noooo, it's only very early...we'll be right, we always are.

Oh and a MASSIVE HAPPY BIRTHDAY TO EG, i hope you keep on having lovely celebrations. XX Love you.