Wednesday, 31 August 2011

Difficult week.......

The emotions this week have been difficult to handle.
Up....Down....All over the place.

Tuesday night, Amelia came home very excited.
She told me she had something very important in her school bag for me.
I had not seen her so happy (after school) for ages.

She opens her bag and gets out a scrap piece of paper from one of her best friends.
It says "Frankston Kmart".
"We have to go there and get baby moshlings" she said excitedly.
Now, Amelia and Tom have been addicted to the Moshi Monster website for a while now.
You make a monster and have to look after it.
They love it.
That night Amelia was planning our shopping trip and actually writing a shopping list (she never writes now).
She got money out of her own purse and was motivated to do something.
I have not seen this for a while.
I had no idea what we would be buying but was obviously very keen to take her.

The next day we had an appointment at The Royal Children's Hospital.
It was to be our first appointment with Immunology since Amelia's A-T diagnosis.
We were both actually quite excited to spend the day together.
We sang and danced in the car on the way there and giggled in the waiting room for over an hour.

The doctors called us in and, as always, needed some background history.
Then we discussed A-T and the implications on Amelia's immune system (in a positive way for Amelia).
Then the supervisor was called in to give a second opinion.

She mentioned the importance of us visiting this clinic on a regular basis and for them to constantly review Amelia's immune system.
To keep her healthy as long as possible.
The only way to do this?
Blood tests and extra immunisations.

They discussed we could begin this at any time.

I looked over at Amelia and she was crying.
A reminder that she listens to everything being said.
She staggered over to me and collapsed into my arms, sobbing.

Because of Amelia's needle phobia, I try to avoid all blood tests and needles.
But I understood that this was necessary to keep her healthy and in the future, possibly alive.
So I decided it was best to do it immediately seeing she was already distressed.

So I took her to pathology to get the An-Gel cream.
After 50 minutes the area of application is numb enough to not feel the needle.

Then we went to immunisation to enquire about the pneumonia vaccine.
The whole time she was crying and struggling to walk.

After leaving our vaccine script at the chemist we went to get lunch.
She cried through the whole of lunch and refused to use her hands.
She claimed she could not move her arms due to the cream.

She is exactly the same as I was (I only calmed down about 3 years ago) with needles.
Except I used to faint.......every time.
Even with the MRI last month the drip needle made me dizzy and they had to lay me down afterwards.
When I had my varicose veins operated on 4 years ago, they asked me to stand before surgery so that they could "draw" where they would be operating.
I fell down. Out cold. And took the whole surgical tool tray with me.

When it came time to get the blood test, Amelia had to sit on my knee with my arms wrapped around her.
I had to hold her down.
She was hysterical.
They needed to get 8 vials of blood.
She was so upset it took ages.
The blood does not flow as freely when you are stressed.
Two different treatment rooms, 2 nurses and having to lay Amelia down with her legs in the air and we finally finished.

Then we still had to go upstairs to the immunisation centre.

Once again I had to hold her down.

She cried the whole way home.

Last night she lay in a state of shock, so drained from all the upset.
No movement, no conversation.

Today was similar.

All that happiness, the night before,  I was so lucky to witness.....GONE.

We are meant to go back the week before we leave for Disneyland for another blood test.
To see whether the vaccine worked.
When our holiday was mentioned today, she cried.....lots.
She relates Disneyland with next blood test now.
Every time Disneyland is mentioned I do not want sadness.
So we made an agreement.
I explained that yesterdays needles were important, the next one not so much.
She does not have to have it.
Full stop.
She made me shake and pinky promise and I will stand by that.
It is not worth the upset.

Last night I fell into bed very early.
Emotionally drained and exhausted.
Today I woke up sick obviously a reaction from yesterday.

Then I was told something that made me really happy.
Amelia has qualified for extra assistance in the classroom at school.
All morning in fact every day.
To have someone breaking down her schoolwork for her, assisting her with everything and making sure she is safe constantly is a massive relief.

So after finishing Season 1 of True Blood tonight (yes, in 1 week) I can get back into my nightly viewing and we can all look forward to Disneyland again........
only 36 sleeps.

But first we need to go to Frankston Kmart.........


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