Many Specialists

Amelia has had many specialists working with her since 2006.
Sometimes you feel what they do is beneficial, sometimes you think it is a waste of precious time.

I finally feel that we have surrounded ourselves with the very best people to guide us through this journey.
The best people to help Amelia achieve the maximum from herself while also adoring her like we do.

Amelia's Physiotherapist has been with her since 2006.
The skills of balance, strength and co-ordination are the main focus.
Myff has travelled every high and low that we have.
She became my rock, the person to give me an honest answer when everything became too confusing.
Myff also grieved with us last December.
She has become a special person to our family in the last few years.

Amelia's Occupational Therapist has been working with Amelia for about 14 months. She is our third OT. I not only feel we are in the hands of great expertise with Lindsay, I also like that we are a part of SCOPE through her. Their knowledge of equipment, funding and looking "outside of the square" is reassuring.
Lindsay assists Amelia with the classroom being accessible, the best way to tackle schoolwork, computer, getting dressed, eating etc etc etc.
I have built a wonderful relationship with her in such a short amount of time.

There have been many speech therapists over the past few years.
In 2 weeks we begin working with someone who appears to have a good understanding of Amelia's condition. After doing an assessment at school, I was very impressed with her comments on breathing, swallowing and recognising exactly where Amelia struggles.

Soon we begin hydrotherapy (swimming exercises in a hot pool).

Our paediatrition checks general health twice per year at the Royal Children Hospital. So it is always good to be on their books.

Amelia's school, where she currently spends 4 days per week, is wonderful. I think the initial shock of her RE-diagnosis is now wearing off and they are enjoying spending time with her. The thoughts of the future have maybe been replaced by the magic of now.
Amelia is starting to need work broken down for her so it is easier to understand and participate. More assistance will be needed next year with schoolwork, self-care and safety. But that is something we can work out in the next few months.

Socially, Amelia thrives.
Even though she gets extremely tired, she loves talking and laughing with other children and adults.
Inside her mind she is still "normal".
People may not think she is listening (and quite often we have to say her name to gain eye contact) but she thrives on interaction.
She will remind us often of what people have done or said after the event.
I like to think that children (and adults) around Amelia will be introduced to a whole new world. One that is a little different than "normal".
It is very emotional when you see Amelia incredibly happy and enjoying herself. I know many feel the same way.
My view on life has changed dramatically in the last 9 months and know many who feel the same around us.

Today when we arrived at Tom's Disco at Kinder, Amelia got out of the car, threw her arms in the air and said "Amelia is in the house" !!!!!

Talking of which, today was the end of an era at our Kinder.
I drive past 3 Kinder's to go to this one.
When I was teaching, Kaye would quite often give professional developement ideas to the rest of us.
Her ideas were always amazing and the hours she worked made a lot of us feel that we would never be able to achieve the amount of things she did for the kids.
When Amelia began her year with Kaye, I was still teaching a group.
I found it extremely intimidating to leave my work and go and see what she had done with Amelia's group in the same session time.
I am disappointed that Tom does not get a whole year with her but I feel very honoured to have met such a talented individual.
To know, love and understand every individual child like she did was magic.
To make parents see and learn about every positive aspect of their own child was also heartwarming.
My children are very lucky to have had such a beautiful person enter their lives at such a crucial stage of their developement.
Goodbye Kaye and I hope you continue knocking down walls for acceptance of ALL children, even those with special needs...........

xxx

Amelia's Project FUNDS

Today Shell and I banked a lot of money into Amelia's Project account.
It was money left over from The Amelia Night and some tins that had been returned.
My life is an open book and I want Amelia's Project funds to be the same.
A minimum of two Committee members count ANY money and then Shell records it.
If $1 is missing, Shell wants the receipt !!!!!
Love it.
If Scott and I need to withdraw any money we get approval from the Committee first.
It has to be something to contribute to Amelia's beautiful life or assist with renovations and therapy.
Nothing else.
We also require 2 signatures on ALL cheques.
Other peoples money being spent on the only purpose it was donated for.

At the moment, I have taken out money for passports ($780), deposit on Disneyland ($7000) and our aprons/supplies for the teaparty ($100).

At our final Project Meeting for 2011, it was agreed on giving BrAshA-T a donation. They are doing everything to try and save A-T children around the world.
We proudly gave a cheque for $10,000.

Everything we have done this year has been pure profit.
The only large expense we had to outlay is dinner at The Amelia Night.
And that was only $30 per head (and that was included in the ticket price).
Everything else has been donated.
The tins, the sausage sizzles, the raffle items at MacDonalds, the cupcakes, the room hire, the auctioneer (who made our night so much fun) and peoples time, support and advice.

I would never, ever have done any of these things.
Your pride and dignity suffers when you ask people for their hard earned money and time.
But YOU all demanded it.
Told me to sit there and be quiet !!!
So I thank you.

We now have enough funds to pay for Physiotherapy, Occupational Therapy, Psychology (for both children), speech therapy and medical visits. They are all private practioners.
We can renovate the house to suit a wheelchair and have a suitable shower for Amelia.
We can go to Disneyland.

In the future, we may need an electric wheelchair and car to accomodate it.

Amelia has her own laptop (and will soon have appropriate software) and Ipad.

Next year I hope to enrich her immediate school environment with equipment and maybe support that will have her coming home again saying "how much fun her day has been" rather than "how hard it has been".
Something that would benefit ALL children at the school but Amelia first.
Maximize learning ability while also making it easier.
But that is something Amelia's Project Committee would need to agree upon.
I cannot do it without their support.

Once Disneyland and bathroom are completed we will have approximately $10,000 left.

That is unbelievable.
People have been so very kind.

I know some people may disagree with this privelege but it is something many around us have chosen to do. To help us now.
Disneyland may be an extravagance, but it will be a memory to last forever and ever.

 Amelia's life is and will be amazing.

xxx

Next ........

I have found it much easier to adopt the motto "one day at a time" to my life at the moment.
It could even be changed to "one event at a time".
Under the heading of events includes all of the major fundraisers, minor ones, family commitments, school and Kinder responsibilities.

Tonight I sat down for 2 hours and updated my diary.
Kinder, school, medical appointments and social occasions.
This pile of paperwork on my bench needed sorting.
This is a big job that has been staring at me for weeks.

Now I am moving my focus towards Disneyland.
Clothes, shoes, bathers, visa's and pay the remaining amount for our trip.
ALL need to be looked at and I may need to shop (now that may be fun!).

We are also very lucky to have housesitters while we are gone.
So after the year of , "I cannot be bothered cleaning", the house needs a massive clean.
I would be very embarrassed leaving it to a family the way it is now.

So I am calling this .......... Week 1 of getting on top of my jobs !!!!

One of those roles is to reply to all the text messages, inbox and email's I have received in the last few weeks. I apologise if you are still waiting for a reply !!!!!

Scott said yesterday "just rest". Ha ha ha ha ha ha ha ha !!!!!!
And that was after my neighbour witnessed me on my hands and knees beside the car (not a pretty sight!!). We had just returned from the previous nights Gala Dinner and the car ride home made my stomach do many somersaults.  So I rolled out of the car and stayed at ground level !!!

So my point is, when do mum's rest ??
Never !!
.......well maybe while drinking lots of alcohol at a Gala Night.........

xxx

The GALA night Report

Last night was the Brashat Melbourne Gala Night.

Amelia's Project was fortunate to have 5 tables there to support the research, into Ataxia Telangiectasia, that is happening in Brisbane.

Scott and I proudly sat with new friends, old friends, family and friends of friends.

None of you HAD to come.
But you did.

Formal clothing needed to purchased, babysitters had to be organised, transport needed to get there and get home........and for many....accomodation booked.

And today, nurse a hangover !! (alcohol was included in the ticket price).

So many people have supported us this year on our "new pathway".
Last night was another experience to remind us that people care.
Thank you.

The room was spectacular.
Stunning.
There was 380 people in the room learning about A-T and the new research being discovered.
The food was plentiful and the alcohol in abundance.
And the speeches..........
Inspiring, hopeful and sad.
The DVD...........cut deep.

Hopefully a large amount of money was raised last night.

But, overall, it was a room full of people coming together to help a small group of children survive longer than what we were all individually told on the day of diagnosis..............

xxx

THE Gala Night

Outfit - check.
Outfit shortened - check.
Hair - Check.
Nails - check.
Lots of donations - check.

All ready for tomorrow night !!!

Speak to everyone Sunday.

xxx

The Gala Night this Saturday ........

This Saturday night is The Melbourne Gala night for Brashat.
It will be the first one that we are attending.
We are so very fortunate to have 4 tables attending from Amelia's Project.
It is a MASSIVE ask and I am very grateful to all of those people that are making a huge effort to join us.

But the biggest thing I am so excited about is the speeches.
So many of you have been so saddened and so supportive of Amelia's disease.
But on Saturday night everyone will hear the amazing work that is being done to find treatment or a cure.

Reading and researching on the Internet is nothing compared to hearing these amazing people speak.
I cannot wait to hear them again.
I cannot wait for YOU to hear them speak.
I cannot wait to watch the HOPE emotion take over you, like it did me.

The answers may not be found in Amelia's lifetime, but after listening to everyone speak, you will walk away thinking ...........maybe it can be.

xxx

A Very Happy BLOG ........

What a wonderful day !!!!!

It began with huge smiles from Amelia.
For the first time in a while she was really happy.
And it continued after school right up until bedtime.

It may be the fact her OT has taught her a new technique for getting dressed each day (she has not been able to do it for about 10 months). The last 3 mornings she has been so proud of herself succeeding each morning.

Or maybe the letter she wrote to another AT child last night.
She spoke of crying if you are sad, being happy and having fun.
Maybe through writing this she reminded herself to smile.

Or possibly the "real mermaid" we found on FB last night. She has her own FB page.
She has a beautiful tail and swims like she is a real mermaid.
Amelia watched her video's and saw her talk and was captivated.
So we sent her a email.
We asked her wherabouts in Los Angeles (where she moved to from Byron Bay) in the time that we are visiting.
For years I have watched Amelia throw a coin into wishing wells and blow birthday candles while wishing to BE or SEE a real mermaid.
Hopefully she is doing a show or appearance somewhere, when we are there.

Having Amelia so happy today has made a HUGE difference to my day.

And Tom, as usual, has been very entertaining.
Today our house was "The Block".
Tom had paintbrushes, hammers and a large blackboard.
He is amazing to watch when his creativity and imagination are in overdrive.

And finally, Scott is home and getting a little bit better each day.

So, I will go to bed very content tonight with this feeling of happiness.........

xxx