Every day everyday people are challenged with a variety of tough and hard times.

It's how your outlook is on life that gets you through.


We could dwell on the bad but we wouldn’t be living for now, enjoying what we have.

What we have is a beautiful little sole who loves her Mum, Dad and Brother.

Stella is just so special and we all are just so damn lucky to know her.

Specialists appointments and my birthday

19.10.2011


Well its been a little while since I have written a post.
We've been busy catching up with freinds and trying to get Stella a bit more interactive since she had her episode a few weeks ago. She hadn't really been herself but this morning is looking very bright eyed !


Monday I met with Stella's metabolic doctor. It was a quick appointment. Of course I left crying. Then I had to meet with Palative Care. I have been putting off meeting them for some months now and really was not keen on talking to them.
I met with one women, who was nice but they're still not a team I want help from, not for now anyway. The term Palative is awful and not something I think children should ever be associated with.


My birthday was yesterday, one I'm sure I'll never forget with all we've been through these last 7 months. I did what any normal mum does and raced around Stella for some more appointments and school ( Conductive Education )


So every day, things run through my head.
Why us, is a big one......
Also, it's better to have loved then not loved at all.
We have been graced with Stella's prescence and should not take any day granted.


Miss Stella Grace xxx

Jett - Our healing stone

7th October 2011

I went and visited one of my best friends Wednesday.
She said she had bought me some stones from a healing shop.
One was the stone- Jet, and another is for Stella.

I knew Jet was a name of a stone but I never knew the meaning and healing properties.


"Jet is also known as black amber, although it is not actually an amber, but rather fossilized coal. It was used extensively in mourning jewelry in Victorian times and was considered a stone for alleviating and bringing grief to the surface to be healed. It has also historically been used as a protection stone and is said to have very powerful protection energies to ward off evil, negativity, and psychic attacks. It is also said to protect from depression, and increase self-reliance. Mystically, jet is considered a stone of sympathy, healing grief, psychic experiences. It is said by intuitive sources to be an excellent calming stone."

I think Jett entered our lives at the most perfect time. He was obviviously meant to be here with us through this and I know if I didnt have him here I would not be coping.

Im just amazed by the meaning and properties of the stone.
The above is what my Jett is to me, and I know he's helping a lot of other people along the way.

xxxxx Thanks Erin  xxxxx

Stella's Auction !

6th October 2011

This morning is the start of Stella's Auction that Channy from @ChantelleWattsPhotography is holding.

All the lovely businesses have donated some rather cute things! We're overwhelmed by people's generosity and kindness.

There is some gorgeous stuff that I wouldnt mind bidding on myself !

Auction ends Sunday 8pm, get on over and have a look if you havent xxx

Stella with her baby brother Jett x

A scare

Well Im not one to usually let everyone know whats going right when it happens, dont like the fuss, but I did start this blog so I could get suppport each week and let everyone know what is going on without actually having to tell you !

30th September

Stella woke up and I noticed she had a twitch in her right leg.
I didnt think anything of it as she sometimes does twitch when under stress or not feeling well.
By the afternoon the twitch had moved to her upper arm down the right side.
This raised alarm bells in my head- I called Neuro nurse at the Mater straight away, she said to bring her in.
On the way in the car I started to panic as she was moving a whole lot more. We have been instructed to give Stella a rescue medication while waiting for ambulance etc. I decided it couldnt hurt to give it to her, so I put the required amount in the side of her mouth. A minute later she vomited.
We weren't far from the hospital now and thank god because I was really starting to worry.

We raced her up to ED who knew we were coming. Scott carried her through. The doctors asked me what had happened but I didnt have a voice to be able to tell them !  That's how much I was starting to panic.
After 40mins off them setting up the IV's into her arm and leg, trying her on three different strong anti-seizures, she finally settled down. Thank god. I was a mess the whole time as all I could think about was how it happened last time, that day back on the 16th April :(
Our little princess was so brave during it all, and even managed a cheeky smirk once she had settled down.

She spent the night in intensive care and another night in her other home, Ward 7 East. All the nurses were happy to see her, just not under the circumstances.

We took her home Sunday, and she has slept nearly every hour since then.
A seizure can knock your body about in general, add to that the amount of drugs it took to stop it plus her disorder, and it equals a tired little girl.

It was scary but it stopped, and thats the main thing. Last time it just kept on going, even after copious amounts of drugs.

She's one little rascal who I love just so so much xx

The weekend

24th September 2011

We had a lovely Saturday morning with a beautiful photographer offering to do some family portraits for free !
Channy from @ChantelleWatts Photography
Such a lovely lady, so easy to be around with a huge heart. Having never met her before ( and my husband having known her from 10 years ago ) she has decided to do some fundraising for our family.

Please please please go and like her FB page, she is collecting items for an auction to raise  money for Stella.

If you can contribute in anyway we would all greatly appriciate it xx

Here's two of the piccies we got taken - I LOVE THEM

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Stella was a bit off for the rest of weekend and really used "Stay in bed day" to it's full potencial as she was in bed (nana and pops) the entire morning on Sunday as she just wasnt happy anywhere else.


By the afternoon she was a lot better and had the biggest chuckle after stealing her brothers dummy from his mouth, and by watching her new Updy Daisy doll dance around the room with mum.

LOVE

23rd September 2011

We are seeing a noticeably different and more aware Stella as we are weaning her off one very strong anti-seizure.....

Scott and I swear she just said LOVE while she was trying to chat with her daddy when having a late night cuddle xxx

Photo taken today: sitting at her special table and chair that Daddy made her

Lets talk about it

This week is mitochondrial awareness week so I dont think there's a better time to let this go public.

It also "World Stay in Bed Day" this Sunday the 25th. Please go over to http://www.facebook.com/stayinbedday and see what it's all about.

I would love for you all to read my blog, share it with your friends and talk about mitochondria disorders - the invisible disease.

This is all for Stella.

I don’t want her to go un-noticed and I don’t want her condition to go un-noticed.

It’s a devastating disease that affects many families in a lot of different ways.

Five and a half months later

20th September 2011

The reality of what has happened still hasn’t sunk in. I don’t think it has for any of us.

Every single day is hard.  Hard phiscally and emotionally.

Since been home we’ve had some good news though. Jett came back clear. He is fine and will be okay. I knew in my heart he would be fine, but having said that I honestly thought Stella would have been too.

Scott has gone back to work 4 days a week as we need the money. My mum has still not gone back to work and is helping me fulltime. Jett is growing and is now over 6 months old.

Stella has taken tiny steps forward which is hopeful. At least she’s not going backwards. She still cannot move and is not eating orally. We take her to private class’s twice a week to try and get her moving and build her muscle tone up. We sing , read books, dance and be silly with her every day just to try and get a smile. Her brother can make her giggle like mad.

I look at her face, she’s like snow white. She is the most gorgeous girl.

God, she’s so so beautiful. It seems so unfair.

Where my head is at now …….

Im not okay, but I’m surviving. I’ll never be okay with this. It changes you. I do have to carry on being strong though. I’m a mum to two children and always will be.

Treasure what you’ve got, and I don’t mean material things ; cause sometimes shit does happen to good people.

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I was just reminded by a beautiful friend, Amos:

Miracles do happen to good people too xx

We do know that as we have already experienced that many times with Miss Stella, thanks for the reminder x

She's home

Our baby girl is home and she's safe in our arms

24^th June 2011

We didn’t even last a week at our house. Everyone in the immediate family got sick so Stella was shipped to her nana’s (my mum’s) to keep her in quarantine until we got better. It ran through all of us over 2 weeks until it eventually hit Stella.

She had bronchiolitis (RSV) again after having it once in hospital. The 15 days that she was sick was absolute hell. I didn’t sleep. I was so worried the whole time. She would cough, couldn’t catch her breath, then go blue. It was awful and very draining on my little girl’s body and on me too. I was glad to see the end of that and have Stella back.

Over that time, we talked with our family and the decision was made to move into my mums and her partner’s house. Not the most ideal thing to be doing at nearly 30 but we had to remember everything and anything that we are doing, we are doing for Stella. There is no way I could look after Stella and Jett on my own. Scott still had to work. He just worked three days at this point in time to try and spend more time with Miss Stella.

So after 10 weeks in hospital we were out. It was great not having to travel back and forth every single day from the hospital. By then end of it I was sick of everything to do with the hospital no matter how lovely most of the nurses and doctors were.

At home Stella is on a cocktail of anti-seizures and vitamins 5 times a day.

She is completely nasal gastric fed.

She cannot sit up, nor hold her head up.

It’s still so unreal, unreal for all of us.

I can’t bring myself to really think of what we’re facing, what we are dealing with.

This is our Stella now and nothing, nothing at all can change that.