Wednesday, 23 March 2011

Brisbane Day 2

Our day began at 5:30am.
Amelia woke up with the sun, so after having trouble falling asleep last night and a restless night, we are all tired.
Amelia and I went for breakfast at 7am and caught a taxi with Nana to the Royal Children's Hospital in Hersten at 8:15am.
While we were waiting for our first appointment we met our first A-T friend. Another child, exactly the same age as Amelia, and his mum. They are from Adelaide.
After a 1 hour meeting with a physiotherapist, I had almost a whole page of notes.
Next we met a speech pathologist and learnt a lot more. I was the geek with clipboard, paper and pen, taking notes while they talked.
When we went to the cafeteria for lunch, we were lucky enough to meet the neurologist researching A-T. She spoke of her "conference" in Frankfurt in February about A-T and the clinical trial currently happening in Italy with medicine and the brain degeneration associated with A-T. Very promising and "hopeful" conversation over lunch.
We finished our clinic today with a film of Amelia's walking at the gait laboratory.

After a swim in the hotel pool and a supermarket shop (both with Amelia), we left to meet the other A-T families at a play centre.
What an experience.
We met 3 other children with A-T. All the children were 7 years old.
So many similarities and common traits.
All happy, smiling, stumbling and difficulty talking.
The parents were gorgeous.

Now we have to be at The University of Queensland at 8:15am.
So good night.
Must sleep so I can absorb more information.


P.S. Thank you for all the messages (phone and email). Even though I may not respond they are greatly appreciated.

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