A-T Clinic Day 2

Do me a MASSIVE favour.
Stop stressing about what you subject your children to on a daily basis.
Today makes me realise that "petty whinging" is nothing compared to what Amelia had to conquer today.

Amelia was booked to have a general anesthetic at 1:45pm.
It did not happen till 3:30pm.

She had not eaten since 7:20am.
She had not had a drink since 12pm.

But.....the anxiety.
"I am scared" she kept saying.

"Of course you are scared" I kept saying.

There was a lot of crying from Amelia........and me.
We were even give a WHOLE box of tissues.

I found my self questioning putting our baby through this.........for research.
The level of why we NEEDED to do it compared to the psychological affect on Amelia was equal.
I am still deciding whether today was worth it.

Leila (3 years old) seemed to be the only thing that made us smile occasionally.
She kept stroking Amelia's arm and kissing her.....asking her to "feel better".

In the end I said to Amelia "lets feed off Leila. She is happy and getting the same thing done so lets remember that she is ok with it".
I knew that Leila would not understand what was about to happen but Amelia did not know that.

"Why are you crying mummy?" Amelia asked.
"Because you are sweety. When you cry, I cry" I answered.

So she stopped.

And right up until she fell asleep with the anesthetic gas she was soooooo BRAVE.

I went and ate at 4pm (I fasted with Amelia) and then the "ward" called me.
They needed a skin sample from me and Leila's parents in 10 minutes.
Then I had to delay that......
Recovery called.
"Amelia wants her mummy".

So I went and once again questioned giving consent.

She was sad.
She needed cuddles.
She felt "YUK".

Once she began feeling better I needed to go and get some of my skin "CUT" out.

STAGE 2 : Biggest sook EVER !!
I almost fainted.
I almost vomited.

I was escorted back to a chair.
I have 2 stitches (sympathy welcome).

During this whole clinic, Jodi Hillis has been a saviour.
Our angel helping us.

But Amelia........and Leila.

I have no words.

Maybe their blood tests, skin and nasal samples will assist research.

Two beautiful, gorgeous little girls.

Such a traumatic day.

Fingers crossed that we find a cure.

Please feel free to read this to your children.
It may give them some perspective.

xxx

A-T Clinic Day 1

Wow.
Big Day.

I knew the 3 days at clinic would be BIG but you forget just how big.

Today we ordered our taxi for 8:20am.
Our first appointment was at 9am.

Just like navigating the streets in a new city, it is the same with a hospital.

After we arrived, a beautiful lady with a gorgeous smile and her adorable daughter approached us.
It was one of the "new" families I have spoken to in the last few months.

The 3 year old daughter and Amelia were "a god send" for each other.
Amelia "showed" Leila that the tests were not scary.
Amelia LOVED being the older, more mature teacher.
So they both fed off each other.
Awesome start to the day.

Amelia (and Leila!) participated in a "lung capacity" test.
They had to breathe through an air piece that was connected to a computer.
With their "breath" they were ten pin bowling on the computer.
They had to breathe out as hard as they could to knock the pins down.

Next was the Body Composition Lab.
Amelia began with the "space mask".
It measured her breathing while resting.

Then she had to lie flat on a machine for 45 minutes.
It measured her body mass.
We had tears after that because it was "boring".

The body pod was last in this appointment.
Amelia kept with tradition and refused to get into it.
I did not question twice.
She has to trust me here.
It is a massive egg shape.
They sit in it with bathers on and the door shut.
It measures their body fat.
I offered to get in it to demonstrate but when I heard about it's function I thought it best NOT to break their expensive machinery !!!!! (It was sure to blow up!).

Next we had lunch with two awesome ladies from Brashat.
Jenny and Kylie had kept us company (and helped us navigate) all morning.
They are volunteers for this organisation that is trying to save our kids.
They help organise this clinic.

After lunch there were two more appointments for the day.
1. A pretend MRI (to get used to it).
2. A real MRI.
This would scan Amelia's brain and see where the A-T has attacked and how much.

In the pretend MRI, Amelia got very anxious and upset quite quickly.
The machine is very large and is quite claustrophobic inside.
I kept explaining to her that nobody was going to "force" her to do it.

After 5 minutes I decided to call it a day.

We came home and rested.

Amelia wanted to go to the pool at our hotel and swim.
When we arrived it was FREEZING !!!
More tears.

What is a girl to do?

SHOP.

So we went and bought a really cuddly, cute toy to cuddle.

"Today was very, very stressful for me" Amelia said.
Obviously she has forgotten about the general anesthetic tomorrow then.......

And so I go to sleep to prepare for Day 2.

xxx

Tomorrow we leave for our second A-T clinic.
The schedule I have been sent shows it is going to be just as grueling as the first.
Lots of appointments across 3 different places.
Three days of bedlam.

Scott and Tom will have a similar schedule at home.
Scott working and Tom attending before and after school care will also be difficult.
It is starting to "sink in" how difficult the next 5 days are going to be.
Last night Tom was in tears about "everything".

But we will survive.
I may forget to pack PJ's and Scott may send Tom to school with no lunch BUT that is not the end of the world (and I have prepared his teacher and the canteen lady, just in case!).

Thank you to everyone for offering to assist Scott, but I think that my step by step AGENDA will help everything to run smoothly !!

Amelia and I are lucky.
Due to my description of the clinic and impending medical procedures, a member of "Amelia's Project" has asked to come.

I only know this person from Amelia's Project.
I had already booked our 1 bedroom apartment, so this "angel" claims that she will sleep on the couch.
We both laugh at the fact that we barely know each other BUT we will be living together for 4 nights.

I will not be myself due to stress and brain overload.
Amelia will be anxious of what is going to occur at the clinic.
I will get nauseous and probably faint during any medical procedures.
Amelia will just scream the place down.

Sounds like fun, doesn't it ?????

But this "angel" still wants to come.

Her husband is taking time off to assist with their 9 and 15 year olds.
It also happens to be his 40th birthday while we are gone.

She wants to cook dinner for us, give me a break and give Amelia someone else to interact with besides her "stressed mum".

Amazed ?
So was I when first approached !

But that is Amelia's Project.
People doing and giving so much to help us.

Blows me away.

I was going to tell you another funny story about Tom but unfortunately today is not appropriate.

You may remember me speaking of a young man with A-T, Jared Digby.
He lives in America and is one of my FB friends.

A while ago I posted that he was struggling in hospital to stay alive.
He is still there and everyday is a rollercoaster.

Today's FB post was difficult to read.
It said.....
things are pretty rough right now. Jared is in renal failure, fluid is building up and they are going to be putting him on dialysis. His docs say that on x-ray, his lungs look worse than they ever have...they have been unable to do the bronchoscopy as he is not stable enough to have it performed. His sugar is over 300 and his temp is holding steady at 103 degrees (this is WITH a cooling blanket set at 64 degrees.) Currently, he is receiving another blood transfusion in an effort to give his body an extra boost. For quite some time today, his O2 levels were sitting at 70...he finally got them back up to 90. Go Jared!

His Daddy, Will and his siblings were finally allowed in to see him today. (They had been exposed to Chicken Pox, and the doctors didn't want to take any chances, so they had to wait until the incubation period was over.) His Church Family has also been there in force today. Pam wanted me to remind everyone that several times during this hospitalization, when things looked bad, Jared has been able to pull out of it at the last moment. We are praying that he will continue this! 

Tomorrow A-T families all around the world will be wearing "red" in support of Jared.

One day this could be Amelia....... fighting to stay alive.

Some people have questioned why I am putting Amelia through medical research procedures this week.

My answer.....I would like to avoid this EVER happening to my little girl.
Doctors and scientists need to find an answer NOW.


Fight as hard as you can Jared.........

xxx

School Teaching

There could be many reasons why someone chooses to become a teacher.
For me it was because I love children.
I love talking to children and watching their fascination in learning grow.

I have always had a set of very basic rules when teaching.

1.Greet children as they walk into my room.
2. Smile at children regularly.
3. Always make eye contact with a child when speaking.

This not only builds a healthy rapport with each child, it also shows that you respect each individual in your room.
The rules of discipline do not take long to set.
A raise of the eyebrows, very curt, basic instructions to address inappropriate behaviour and if needed a quick discussion about right and wrong in a particular situation.

If you surround your room with happiness and respect then children will learn very quickly when they have done something wrong.

This blog comes from observing many teachers in the last 3 years (since our family entered the Primary school system).
Teachers who think authoritarian teaching styles make for a good classroom.
Intimidation and humiliation are not good teaching styles.

Children learn when they are relaxed and having fun.
When children are comfortable they become interested in learning.

A good teacher welcomes parents to participate in the program.

Under no means am I saying that I am a good teacher, but I am proud of the rapport and respect I am able to achieve in a teaching environment.

Quite often a "naughty" student is an individual struggling in some way.
Their behaviour is asking for help.
They need someone to discover their weakness and build confidence and skill in that area.

Look around your school and see the teachers that the children love.
See the teachers the parents love.
Their classrooms are always the happy and fun ones.
They have not needed intimidation or humiliation to get through the year.
Their students have enjoyed coming to school and learning in the classroom.

They are not psychologically damaged by how they felt in that class, with that teacher.

The biggest thing I have observed ?

Smiling.

It instantly makes people feel welcome ....... and wanted.

This is only my opinion and I understand not everyone will agree.

xxx

Turn that frown upside down.

Tonight Tom had basketball training.
He has joined a team through the school and is in a Grade 1 team (even though he is in Prep).

Amelia saw a lot of her friends at the basketball stadium.
Most of them are in her class at "mainstream" school this year.
Amelia's friends were waiting for their training session to start.
They were running around, giggling and playing with their basketballs.
Amelia was trying to join in whilst sitting in her wheelchair.

I was watching Tom practice (and constantly giving me a thumbs up!), while also trying to watch Amelia who had gone out into the foyer.

I noticed that Amelia's "friends" had gone outside and were playing on the concrete.
Amelia was sitting just back from the doorway, still inside, watching them (still in her wheelchair she is able to roll the wheels to move it).
Trying to watch Tom, because this is essentially "his time", while keeping an eye on her was becoming difficult.

The picture of her staring out at them began pulling at my emotions.
Her back was facing me.
I could not see her face.

Eventually I thought "I really need to go and see how she is".

I walked over and looked at her face.
Tears were streaming down her cheeks.
I instantly hugged her and asked what she was feeling.

"I just want to play with them. I just want to play LIKE them".

Now I was fighting back tears as she sobbed.


Tonight we have talked about "happy thoughts instead of bad/sad thoughts".
You can replace every negative thought with a positive one.
We have also spoken about how crying real tears gets all of the sadness and badness out of our thoughts and leaves all of the good ones behind.
I made her laugh when I told her I would need to wash her clothes now because they are covered in sad thoughts !!!

My ultimate dream is that "they" find treatment or a cure for A-T soon.
They claim that they are getting closer and have organised 3 major conferences in 2012 alone with researchers and clinicians world wide.
One has already happened in India in February, another will be in London in June and another in America in September.
I am regularly speaking to people that have lived with the A-T diagnosis in their family for many years.
They say that this year is the first time they have ever been excited and had hope.

One organisation in Australia is helping fund this research.
They will also be funding drug trials that Amelia will be a part of.
The first world wide drug trial will hopefully be this year.

For $10 you can become a member and contribute to this potentially life saving organisation.

If you can afford $10 please follow the link. Scroll down to donation and type $10 on this totally secure payment website.

http://www.brashat.org.au/order.php

You never know it may save Amelia's life and allow her to play with her friends.

xxx

Kia Grand Carnival.

Thank you to everyone for your support and enthusiasm about August 4th 2012 (my last blog).
Actually......thank you for you support, advice and friendship on any blog that I write.
It helps me continue staying positive (well most of the time anyway!).

AMELIA Update : Still so happy.
Recently I wrote about a change in her behaviour since she began attending the special school 3 days a week.
The uncontrollable laughing, wicked one liners and happiness she is radiating assures me that the correct decision was made.
The decision to listen to her.
The decision to act on what she wanted.

I now realise that Amelia has been depressed for months.

Every night I stare at her with tears in my eyes.
She is back and I am so proud of her for taking a stand and communicating what she needed.

TOM Update : A bit emotional the last few days.
Will be keeping an eye on him.

SCOTT and AMANDA : Stressed.

We need to get "the ball rolling" for the car, car conversion and electric wheelchair.
The time that it will take to organise ALL and wait for the small amount of funding from the government , is almost a year.
Amelia is showing us that she is ready for an electric wheelchair now.

On the weekend we began the process of looking for a suitable car for a car conversion.
The special school had sent home a list of suitable cars.
Most are vans or mini buses.
Some were WAY out of any reasonable price range.
A lot do not have any air bags in the back for the children.
After our horrendous accident last year (that Tom still has nightmares about) I will never drive again without rear air bags.
I watched our kids bounce onto their air bags.
It was the only thing between them and the bus that collided into us.

So we are left with a Toyota Tarago and a Kia Grand Carnival.
Tarago is about $60,000.
Kia is about $37,000.

To get a car brand new car works out cheaper than buying it second hand.
There are savings to be made by needing a conversion at the initial sale.
Plus we can accomodate the car to OUR families needs.

When we sell our car we will need approx $15,000 to buy a Kia (lets forget about the Tarago now).
Then we will need approx $37,000 to pay for the conversion (the government will pay $10,000 of this).
The conversion includes lowering of the car, installing the rear seats to one side wall and bolting Amelia's chair straight in once it is in position inside the car.
That is just a brief overview.....there is a lot more involved.

Then you still have to get the electric wheelchair.
Approx $17,000 for one suitable for Amelia (the government will pay $8,000).

So......$15,000 + $27,000 + $9,000 = $51,000.

So does anyone know someone that works at Kia ????!!!!!!

xxx

August 4th 2012

Amelia's Project has begun for 2012.

It is like a "well oiled" machine has begun running again.

Last year at our very first meeting, approximately 45 people came.
I sat up the back nervously shaking and listened while "The Power Machine"
(Jemimah) began the conversation of fundraising and helping US.

That night they set a goal amount of $20,000 to raise during the year.
That money would send us to Disneyland.

I can remember being both extremely humbled by the support and incredibly guilty they were dedicating so much time to US.
This constant guilt took 6 months to subside.
Every time we have a meeting it appears again.

There were so many Amelia's Project events last year.
It was very overwhelming.
Sausage sizzles, Cup cake stall, MacDonalds Night, Amelia's Project tins, random cash donations and the biggest fundraiser I have ever attended "The Amelia Night".

Donations for this night mainly came from friends, families and local businesses.
Forget the BIG corporations, almost everything came from those around us.

It was relaxed, fun and social.
It was a celebration of life
It was a room full of love and kindness.
230 people were there.
We made sure the "negative, sad and informative" was done at the beginning and finished with a fun, inspiring speech to "make your life amazing".

Then the auctions and raffles began.
So did the alcohol and socialising.........

Five hours later an announcement was made that we had made OVER $50,000.
You could have heard a pin drop in the silence.
Seconds later there was a ROAR of happiness, surprise and excitement.

We were going to Disneyland.
We took our little girl to see "the most magical place on earth" and it definately lived up to that.

This year the goal is money for an electric wheelchair, car and car conversion.
Our quote so far is $37,000 + $37,000.
We are obviously trying to research every option available.

The BIG thing for this year......???
The Amelia Night !!!!

Frankston RSL have kindly offered to have us again.
Darren Eichenberger has also kindly offered to MC again.
Tickets will be $60 each which includes 3 courses, DJ and a dance floor.
It will be on Saturday 4th August at approximately 6:30pm.

I have begun my search for donations.
Amelia's Project Committee are beating me in the amount collected.
I MUST WIN.
I MUST GET MORE THAN THEM !!!!!
If you can please feed my competitive nature and let me know if you can help me with ANY KIND of donation (big or small) please let me know!

We have a master copy of our donation letter so please email ameliasproject@yahoo.com.au to request one, if you can assist in me WINNING the amount collected !!!
Vouchers, gift cards, products of any kind, homemade items, memorabilia, holiday accomodation, furniture, alcohol, a new car (ok, we probably will not get that!!!!!)  ANYTHING !

Now TICKETS.
This year we will be selling 200 tickets.
People are already talking tables and single tickets.
PLEASE, PLEASE, PLEASE start getting yourself (and whoever else) organised.
Due to the overwhelming demand, the tickets will go on sale on
TUESDAY 1st MAY at 10am.
Contact details for ordering tickets will be publicised soon.
I do want anyone to miss out.

Finally I want like to file a complaint.
The committee said we need a DJ for entertainment.
I thought I was the entertainment last year with my alcohol consumption ???!!!!
Very offended girls ......... !!!!

xxx