Monday, 26 March 2012


Thank you.

Thank you for all the messages and visitors (that I tried to ignore) today.

It really does help get me out of the gutter of negativity.

I still have a lot to process and work through from last week.
A lot of information...........

And more acceptance.
A process I thought had already happened for me.

For now I would like to share some photo's taken in Brisbane last week.

 Breathing test.
Amelia has very "healthy lungs" apparently.

 A 25 minute test of breathing while "resting".

 Our new best buddy, "leila", from Sydney. 3 years old.
Diagnosed November 2011.

 My first procedure.
A blood test.
I had NO idea what was coming in the next two days !!!!

 My baby and I.

 Amelia about to go under anesthetic.

 My nasal biopsy.
The BIG silver prong is sticking out of my nose.
First you have an anesthetic spray to numb inside the nose.
Then liquid cocaine to assist with the numbing.
This felt like the "dry ice" feeling when you are having a wart burnt off.
VERY painful.
Then a needle of local anesthetic.
Finally a biopsy is taken in 10 seconds.

 After the procedure I can honestly say "I lost the plot".
I sobbed for 3 hours.
Apparently it was from a reaction to the cocaine as well as relief it was all over.
I had been terrified earlier.

I feel so sorry for the poor nurse in the room with me.
After 90 minutes she even insisted on driving me back to the Clinical Research Centre.
But I could not have asked for a kinder, more compassionate person.
Julie.....thank you sooooooo much.

 The skin biopsy from the arm.
With stitches.

 Supermodel Amelia.

 Supermodel Leila.

Amelia and her new "best buddy" Jodi.
With all the procedures and emotions we would not have survived the week with out her there.


Tomorrow Scott and I will have been married 13 years.

Last Thursday we had been "together" 22 years.

Scott is and always will be my soul mate.

Probably explains why after arriving home from Brisbane on Saturday, I got out of my car and fell straight into his arms and cried.

Love you forever and ever Scott.


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