No apolgies

Hello dear friends,

I don't want to apologise for last nights post because it was real and what is happening here.
But I also feel I need to explain my upset, frustration and sadness.

When Amelia was diagnosed with CP we were advised of nothing.
I found the department we are still part of at RCH.
I found a physiotherapist and a paediatrition capable of dealing with the supposed CP.
All on my personal computer.

Amelia was misdiagnosed with Cerebral palsy until WE took her to RCH demanding answers for her massive decline.

They gave us the diagnosis of A-T without offering hope and services available to help her.
They never showed us the many organisations around the world that are madly trying to find treatment or a cure for the 1000 kids worldwide that have A-T.

When the cancer last year blindsided us, it is apparent it had been growing for approximately 2 years.
Regular appointments at RCH and they NEVER picked it up.
I can see NOW in the regular blood results where the numbers were climbing.

To receive confirmation that someone was looking into last weeks blood test results and to find out today that was not true, partly confirms my meltdown last night.

I was asked to show the emails of last week to prove someone was supposedly looking into it!!!

I am exhausted from being an advocate, "Staying on top of everyone" and waiting to see what Amelia needs to battle next.

IF I did not question and demand, I wonder on many of the previous occasions what would be the case.

Lets not even mention the fight/s for Tom.

Todays paediatrition just rang.
She sees the results as needing urgent investigation.
Diabetes is the first worry.
Blood test tomorrow.
If high sugars are still evident, into hospital.

Next.......
Look at Liver.

So last night I fell apart because I am only one person.
One person who is over making sure medical teams do their job.

xxx