Wednesday, 21 March 2012

A-T Clinic Day 1

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?


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.


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