Wednesday, 27 August 2014

Miss Amelia Update

Hello people far and wide.

Thought I may need to focus on a blog about Amelia for once!

Amelia is doing well at the moment.
We received the results back from the blood tests from a few months ago.
You may remember her having to have them because SCOTT PROMISED HER A $90 GIFT IF SHE DID IT !!!!
Anyway the tests results came back "normal".
That is excellent.
A-T can cause or create horrible things to a child's internal organs.
The threat of cancer (1000 times more likely than a non A-T child) damage to the liver, kidneys and lungs are all a constant concern.
We were very relieved to hear that she is fine for now.

We have also started seeing more of a "new"doctor at our local medical centre.
He is very sweet and we are discovering very thorough.
He has explained that he has spent time researching Ataxia Telangiectasia.
The last time Amelia saw him, he spoke to Amelia so beautifully and was obviously holding back tears in his eyes.
We saw him this time because Amelia vomits after waking up about 3 mornings out of 7.
We wanted to check whether it was something to do with an internal organ that we were unaware of.
He decided it was anxiety.
Even though she is still vomiting, we are all more comfortable knowing that it is just as Amelia calls it "nervous about the day ahead".

I visited this doctor on a different occasion for something and we got onto the subject of his baby daughter having an ailment that could be life threatening.
After some discussion, I discovered it was because she has a rather large birthmark called a "giant hairy nevus".
Disgusting name really.
Tom has one too though.
While trying to hide my panic I questioned the life threatening part.
He explained it can become cancerous if it sees the sun.
I breathed a sigh of relief then because Tom's is on his butt.
Tom will now be instructed no skinny dipping FOR LIFE.

This doctor then chose to research for any link between the birthmark (cannot call it THAT name!) and A-T.
There is one.
I can now be pretty sure that even though Tom obviously does not have A-T, he carries the gene and therefore may pass it on to his own children in the future, as Scott and I have done to poor Amelia.

Glad we have found this man.

Amelia is coming home exhausted sometimes from school.
Her biggest symptom is fatigue so it is understandable.
This year her teachers are taking her out of her chair a lot.
She is being placed on special sitting machines to stretch her thighs.
She is being placed on her tummy to strengthen her arms.
She regularly uses a walker that she is strapped into (we were shocked to learn that she literally does laps of the school with great excitement).
At a recent "school games day" she was in a race in the walker. Apparently she was incredibly competitive and once the race started virtually ran so she could win!
Amelia is being challenged to spell, read, type on a computer and participate in craft activities (amongst other things).
There is also the swimming class most Tuesdays.

After a rather difficult year for most of us, Amelia is going through a "cheeky" stage.
She is normally quite subdued when outside the home and when returning home on the bus the other night the bus driver got out his drivers door and said "Amelia has been very entertaining on the drive home. I have never seen her like this!"
As he opened the back door for Amelia to come down the lift, she is loudly laughing and singing "Happy Birthday" to no one.
The driver and I wondered whether there had been some kind of "happy hour" at school that day!

Her sense of humour is shining at the moment and we are all loving it.
Every night on our way to bed she calls out "CONGA". Tom comes running from wherever and stands in front of her.
Do you know how hard it is to fully support her while all 3 of us do the conga to her bedroom?!

Besides going to school she does not really socialise with any other children anymore.
Tom is all that she has.
They have an amazing bond.
They both adore each other.
I do not know how to change the social side of things because I see children struggling to know what to say and do when around her.

A thought that has also crossed Scott and my minds recently is how Tom is going to be when he finds out Amelia's fate with A-T.
If we leave it until his teenage years then he may turn against us.
He may become angry that we did not tell him sooner.
But I am also not ready to watch him fall apart with this horrible knowledge.

Amelia has many fears and worries now.
She cannot handle loud noises and gets very upset if she is startled by one.
We cannot mention anything  "concerning" about Tom in front of her, because she then excessively worries about him. It can be a low diabetes reading (hypo) or the cancellation about something he was looking forward to.
Amelia can no longer handle crowds large or small.
She cannot handle too many people in a room.
Anything can set her off but I am grateful that she knows to ask questions and that is when we know to reassure her.
She has also learnt basic sign language at school (that she then teaches us). If she is unable to talk she can sign it.

Amelia has grown a lot taller and leaner this past 12 months.
She is now as tall as my forehead. So she is about 155cm tall.
Her legs are no longer strong enough to hold her up even with us supporting her so it is very difficult on our backs, but we manage.

So there you go.
Amelia in a nutshell at the moment.

 Amelia and our beautiful Scamp
 The ipad Queen
 Something was apparently hysterical
 Art class (which my parents friend will not let us pay for)
Tom and I at junior footy the day I had to be the umpire !!!

Love these kids.


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