Wednesday, 2 April 2014

My 40th

Two posts in one night !!!!!
BUT my mind is in overdrive.

Scott is in the middle of planning his very sedate 40th Bithday.
It has me thinking about mine.

It is in 6 months.

Everyone knows that I have never had closure on Amelia's Project.
It ended so abruptly.

BUT the love in the room on those nights was overwhelming.
People traveled from far and wide to FEEL that LOVE.

I want my 40th in that place.

I want people that have supported us from FAR and WIDE to come.

I want everyone I have ever known to come.

Even the people I have never met, face to face, to come.

I want to get someone really fun to host, like a Hypnotist or wacky Trivia Man.

I want Amelia and Tom to come, just like they are to Scott's.

I want to celebrate Amelia here for my milestone birthday.......with me.

I want a MASSIVE Birthday party and a MASSIVE  celebration of our family, while we are all together.

I will do it.

You are all invited.

Keep October 2014 FREE.

Please Come.

Amanda (39 years of age).


Blood Test and Furby's

Hello Everyone.

Just had my flu vaccination and it HURT!
Which leads me into tonight's post.......

Last week Scott took Amelia to a Royal Children's Hospital appointment for the first time on his own.
It was a very big deal and part of his role as house husband.

"Who are we seeing?" Amelia asked.
"Immunology" I said.

She started crying.

Last January we saw our head guru at RCH.
I mentioned that I was concerned that no one was monitoring Amelia's overall health.
Children with Ataxia Telangiectasia are 1000 times more likely to get cancer and any damage created inside the body from other infections can be irreparable.
For example, a cough can scar the lungs permanently.

I requested that we need someone, or a team, overseeing anything that may appear, without symptoms.

She made an appointment for us to see someone in immunology.

We visited this department 2 years ago and the reaction of that visit could be heard around the whole hospital.
Amelia would not accept reason and focus on getting through it.

To our family it is an area that we have since avoided.

How can you test the immune system without blood tests?
How can you protect the immune system without needles?

Amelia has my "medical condition", where the anxiety and panic take over.

Anyway about last week.......

Amelia tried to get out of it the night before.
Scott questioned why we needed it.

They went.
I went to work........anxious.

As I was leaving, I said to Scott "If you need it, she wants a FURBY. Tell her she will get one".

The appointment went extremely well.
Scott said the head of immunology was called in.
They were appropriately excited to have a child with A-T to monitor.
They were going to create a "team" so that Amelia could be closely monitored on a regular basis.

But then the word was said.


Amelia heard.
She started crying.
(from previous experience there is no use applying numbing cream. It is more time to build anxiety).

Now this is where the story gets blurred.......

She got a furby.
She was promised a furby.


I am imagining it was as soon as the tears started.

(This is said tongue in cheek - because the day apparently went smoothly. Blood test days NEVER go smoothly).

Jump forward to getting home.

"I am getting a furby" Amelia says with a massive smile.

"WHAT?" says Tom.
"I have 2 needles a day. What do I get?".

Tom is NOW ALSO getting an $84 Furby.

Both children now have a Furby each.

Who is taking Amelia to immunology next time ??!!

I think they are proud of themselves.

Tom arrives home tonight and talks about a teacher thinking his "Arm Farts" are awesome.
Tom has to demonstrate his talent to the class.
Teacher says he will stand up on stage at next assembly and play the National Anthem through "Arm Farts".

So Proud.
So Proud.