Lots of PARTS.....

PART A : Whinge

I am so tired.

I have absolutely no tolerance for people complaining about "small" issues today.

I will not have any conflict or negativity BROUGHT into my life from others, when it is really NOT a big issue.

Sometimes I want to scream "GET THE F*#@ over it!!!".

People behaving like the whole world revolves around them and doing the "poor me act" for no reason is really grating on my nerves today.

I am witnessing people being diagnosed with cancer and married couples separating.
Children dying and people struggling with mental illness.
People needing restraining orders against violent people.
Having a child with "special needs".
Having no money to pay the mortgage.

These are REAL issues.

I, like anyone else, am a friend and will always listen to and support those around me
BUT
if you want to constantly complain about "normal" issues, please walk away.

An occasional BAD day is normal for anyone and I will always be here....but everyday?
Seriously?

PART B : Amelia

Struggling to recover from last week.
Just after I got "my Amelia" back she has to be taken away by medical procedures.
She is constantly asking "when am I getting an electric wheelchair?" as well.
WITH MY HAND IN THE AIR : In the next 2 weeks (school holidays) I solemnly swear to totally surround this child with love, fun and a safe environment so that she may be happy again.

PART C : Tom

Since we returned from Brisbane, Tom has been nasty, vindictive and angry.
It has been very difficult to be around him.
Apparently he was wonderful while we were gone.

WITH MY HAND IN THE AIR : In the next 2 weeks I solemnly swear to totally surround this child with love, fun and a safe environment so that he may be happy again.

PART D : A beautiful soul

This weekend a girl I went to High School with is running in the Royal Children's Hospital "Run for the Kids".
She has decided to run for 1 kid......Amelia.
She has had a t-shirt made with Amelia's Project logo.
She will be doing it alone.

What else can you say BUT
Thank you xxx

PART E : Macca's Night Raffle Tickets

The raffle tickets are ready to be distributed.
I have 50 in my "hot little hand".
Please contact ME or
ameliasproject@yahoo.com.au
if you would like some sent to your home address.

The McDonalds night is on Tuesday 22nd May 2012 and there are 10 prizes up for grabs (and there is always the fact that you are contributing to Amelia's electric wheelchair).

GRAND FINALE
Good luck to all "school aged" parents on the impending 14 days.
WITH MY HAND IN THE AIR : I solemnly HOPE that you all come out of the other end unscathed and richer for the experiences that you had with your children.

ALWAYS feel free to Share.

xxx

Evaluation

While working through my own "debriefing" of the events at the clinic last week, I have been able to evaluate why I fell apart.
By "working through" I mean thinking about every little detail and accepting the information.

I entered a situation that was very different to last years A-T Clinic.

Last year, after the initial diagnosis, we had been told in Melbourne "go home and enjoy every day. Cherish your little girl. There is nothing we can do help you".

When we arrived at our very first A-T clinic in March 2011, I was given a very strong feeling of HOPE.
There were many people researching and trying to find at least a treatment for A-T.

In Melbourne, Scott and I were given the impression that nothing was being done.
In Brisbane we learnt this was very untrue.

Last week was very traumatic for a number of reasons.

Amelia was very frightened and kept saying "I am scared".
She also cried a lot.
She had to have lots of tests on machines while awake.
She would not participate in having an MRI because she was so frightened of the machine.
As much as I would love to have the effect of the A-T on Amelia's brain monitored, I cannot force her to do something she is so scared of.

The anesthetic was frightening.
The 4.5 hour wait at the hospital did not assist with the anxiety levels (for Amelia or myself).
While under anesthetic, Amelia had skin removed from her arm and nose for stem cell research.
The scientists are hoping to create "A-T free" cells with the intention of injecting Amelia with them at a later stage.
This would help replace the ones dying.
Obviously only a possibility at this stage.

While asleep they also took various blood tests.
These will determine what "type" of A-T Amelia has and check her immune system.

She woke up distressed and sad.

Then I was taken away to have the skin biopsy taken from my arm.

The doctor doing the procedure did make it a little easier.
He said "I am about to give you a little prick from a big prick" while administering the local anesthetic.
Then proceeded to tell me "I know how to do this because I have been studying it all night on You Tube!!".
He gave me a good laugh.

We did not leave "outpatients" till 6pm on that second day.
Amelia managed to sleep 11 hours that night.

The next day was just as busy.
Lots of clinicians needed to see Amelia and I.

I realised very quickly the decline Amelia has experienced in the last 12 months.
The eye tracking was a lot slower.
Her vision is becoming blurry.
The reliance on the manual wheelchair more.
The fatigue........

The respiratory specialist spoke of Amelia's lungs being extremely healthy for someone with A-T.
Then he proceeded to explain the danger to her lungs from now on.
The need to listen for a "moist cough" while eating, drinking and resting.
This would mean that something has "passed" into the lungs instead of the stomach.
To be aware that a feeding tube may be needed sooner rather than later (or at least a thickener in liquid drinks) to prevent any damage to the lungs in the future.

Now, of course, I am worried EVERY cough is a "moist cough".

Then I had my nasal procedure.
I experienced nausea and tears all afternoon, but still needed to sit with 3 more clinicians.

We have returned with a lot of vitamins and antioxidant liquids.
This will be part of a study on the immune system and neurological decline.

I am experiencing difficulty in getting these "into" Amelia.

Finally it was the realisation that we will never go back.
We will never get back the brain cells lost.

The OLD Amelia will never be our Amelia again.

We may be able to "halt" the disease and stop it progressing but when will that be?

Makes me question "quality" of life over "quantity".

So, the past 8 days have been about grieving....again.
Accepting the future we have been handed and accepting Amelia's progression into A-T ......again.

I am not boarding the pity train and I am not spiralling into depression.
I have just been presented with a realistic focus on Amelia, A-T and our family.

I can actually say I am glad because I can be better prepared for what is ahead.

Finally, in my processing, I realise how RAW I felt last week.
How unbelievably naked it feels to have everything and everyone far away and just the disease in front of you.
I realise how lucky our family is to have such a large amount of support and love around us everyday........

xxx

Photo's

Thank you.

Thank you for all the messages and visitors (that I tried to ignore) today.

It really does help get me out of the gutter of negativity.

I still have a lot to process and work through from last week.
A lot of information...........

And more acceptance.
A process I thought had already happened for me.

For now I would like to share some photo's taken in Brisbane last week.

 Breathing test.
Amelia has very "healthy lungs" apparently.

 A 25 minute test of breathing while "resting".

 Our new best buddy, "leila", from Sydney. 3 years old.
Diagnosed November 2011.

 My first procedure.
A blood test.
I had NO idea what was coming in the next two days !!!!

 My baby and I.

 Amelia about to go under anesthetic.

 My nasal biopsy.
The BIG silver prong is sticking out of my nose.
First you have an anesthetic spray to numb inside the nose.
Then liquid cocaine to assist with the numbing.
This felt like the "dry ice" feeling when you are having a wart burnt off.
VERY painful.
Then a needle of local anesthetic.
Finally a biopsy is taken in 10 seconds.

 After the procedure I can honestly say "I lost the plot".
I sobbed for 3 hours.
Apparently it was from a reaction to the cocaine as well as relief it was all over.
I had been terrified earlier.

I feel so sorry for the poor nurse in the room with me.
After 90 minutes she even insisted on driving me back to the Clinical Research Centre.
But I could not have asked for a kinder, more compassionate person.
Julie.....thank you sooooooo much.

 The skin biopsy from the arm.
With stitches.

 Supermodel Amelia.

 Supermodel Leila.

Amelia and her new "best buddy" Jodi.
With all the procedures and emotions we would not have survived the week with out her there.

Finally......

Tomorrow Scott and I will have been married 13 years.

Last Thursday we had been "together" 22 years.

Scott is and always will be my soul mate.

Probably explains why after arriving home from Brisbane on Saturday, I got out of my car and fell straight into his arms and cried.

Love you forever and ever Scott.

xxx

Damaged Goods

I do not know if now is the best time to be writing.
I do not want to talk to anyone.
I do not want to see anyone.

I feel like I have gone "full circle" back to when Amelia was first diagnosed.

I am at a "crossroad" again.
Positive and negative thinking.

The past week could be almost compared to the week we spent in hospital in December 2010.

The tears, the worry, the waiting and the pain.

The discussions, the observations and the advice.

It is no one's fault.
It is the disease.

My positive thinking has taken a battering.
My hopes for the future have received a realistic blow.

The preparation for the immediate future is now right in front of us.

No more enjoying the good times because the bad times are coming......fast.

I am really struggling to comprehend what is happening to Amelia right now.

xxx

A-T Clinic Day 2

Do me a MASSIVE favour.
Stop stressing about what you subject your children to on a daily basis.
Today makes me realise that "petty whinging" is nothing compared to what Amelia had to conquer today.

Amelia was booked to have a general anesthetic at 1:45pm.
It did not happen till 3:30pm.

She had not eaten since 7:20am.
She had not had a drink since 12pm.

But.....the anxiety.
"I am scared" she kept saying.

"Of course you are scared" I kept saying.

There was a lot of crying from Amelia........and me.
We were even give a WHOLE box of tissues.

I found my self questioning putting our baby through this.........for research.
The level of why we NEEDED to do it compared to the psychological affect on Amelia was equal.
I am still deciding whether today was worth it.

Leila (3 years old) seemed to be the only thing that made us smile occasionally.
She kept stroking Amelia's arm and kissing her.....asking her to "feel better".

In the end I said to Amelia "lets feed off Leila. She is happy and getting the same thing done so lets remember that she is ok with it".
I knew that Leila would not understand what was about to happen but Amelia did not know that.

"Why are you crying mummy?" Amelia asked.
"Because you are sweety. When you cry, I cry" I answered.

So she stopped.

And right up until she fell asleep with the anesthetic gas she was soooooo BRAVE.

I went and ate at 4pm (I fasted with Amelia) and then the "ward" called me.
They needed a skin sample from me and Leila's parents in 10 minutes.
Then I had to delay that......
Recovery called.
"Amelia wants her mummy".

So I went and once again questioned giving consent.

She was sad.
She needed cuddles.
She felt "YUK".

Once she began feeling better I needed to go and get some of my skin "CUT" out.

STAGE 2 : Biggest sook EVER !!
I almost fainted.
I almost vomited.

I was escorted back to a chair.
I have 2 stitches (sympathy welcome).

During this whole clinic, Jodi Hillis has been a saviour.
Our angel helping us.

But Amelia........and Leila.

I have no words.

Maybe their blood tests, skin and nasal samples will assist research.

Two beautiful, gorgeous little girls.

Such a traumatic day.

Fingers crossed that we find a cure.

Please feel free to read this to your children.
It may give them some perspective.

xxx

A-T Clinic Day 1

Wow.
Big Day.

I knew the 3 days at clinic would be BIG but you forget just how big.

Today we ordered our taxi for 8:20am.
Our first appointment was at 9am.

Just like navigating the streets in a new city, it is the same with a hospital.

After we arrived, a beautiful lady with a gorgeous smile and her adorable daughter approached us.
It was one of the "new" families I have spoken to in the last few months.

The 3 year old daughter and Amelia were "a god send" for each other.
Amelia "showed" Leila that the tests were not scary.
Amelia LOVED being the older, more mature teacher.
So they both fed off each other.
Awesome start to the day.

Amelia (and Leila!) participated in a "lung capacity" test.
They had to breathe through an air piece that was connected to a computer.
With their "breath" they were ten pin bowling on the computer.
They had to breathe out as hard as they could to knock the pins down.

Next was the Body Composition Lab.
Amelia began with the "space mask".
It measured her breathing while resting.

Then she had to lie flat on a machine for 45 minutes.
It measured her body mass.
We had tears after that because it was "boring".

The body pod was last in this appointment.
Amelia kept with tradition and refused to get into it.
I did not question twice.
She has to trust me here.
It is a massive egg shape.
They sit in it with bathers on and the door shut.
It measures their body fat.
I offered to get in it to demonstrate but when I heard about it's function I thought it best NOT to break their expensive machinery !!!!! (It was sure to blow up!).

Next we had lunch with two awesome ladies from Brashat.
Jenny and Kylie had kept us company (and helped us navigate) all morning.
They are volunteers for this organisation that is trying to save our kids.
They help organise this clinic.

After lunch there were two more appointments for the day.
1. A pretend MRI (to get used to it).
2. A real MRI.
This would scan Amelia's brain and see where the A-T has attacked and how much.

In the pretend MRI, Amelia got very anxious and upset quite quickly.
The machine is very large and is quite claustrophobic inside.
I kept explaining to her that nobody was going to "force" her to do it.

After 5 minutes I decided to call it a day.

We came home and rested.

Amelia wanted to go to the pool at our hotel and swim.
When we arrived it was FREEZING !!!
More tears.

What is a girl to do?

SHOP.

So we went and bought a really cuddly, cute toy to cuddle.

"Today was very, very stressful for me" Amelia said.
Obviously she has forgotten about the general anesthetic tomorrow then.......

And so I go to sleep to prepare for Day 2.

xxx

Tomorrow we leave for our second A-T clinic.
The schedule I have been sent shows it is going to be just as grueling as the first.
Lots of appointments across 3 different places.
Three days of bedlam.

Scott and Tom will have a similar schedule at home.
Scott working and Tom attending before and after school care will also be difficult.
It is starting to "sink in" how difficult the next 5 days are going to be.
Last night Tom was in tears about "everything".

But we will survive.
I may forget to pack PJ's and Scott may send Tom to school with no lunch BUT that is not the end of the world (and I have prepared his teacher and the canteen lady, just in case!).

Thank you to everyone for offering to assist Scott, but I think that my step by step AGENDA will help everything to run smoothly !!

Amelia and I are lucky.
Due to my description of the clinic and impending medical procedures, a member of "Amelia's Project" has asked to come.

I only know this person from Amelia's Project.
I had already booked our 1 bedroom apartment, so this "angel" claims that she will sleep on the couch.
We both laugh at the fact that we barely know each other BUT we will be living together for 4 nights.

I will not be myself due to stress and brain overload.
Amelia will be anxious of what is going to occur at the clinic.
I will get nauseous and probably faint during any medical procedures.
Amelia will just scream the place down.

Sounds like fun, doesn't it ?????

But this "angel" still wants to come.

Her husband is taking time off to assist with their 9 and 15 year olds.
It also happens to be his 40th birthday while we are gone.

She wants to cook dinner for us, give me a break and give Amelia someone else to interact with besides her "stressed mum".

Amazed ?
So was I when first approached !

But that is Amelia's Project.
People doing and giving so much to help us.

Blows me away.

I was going to tell you another funny story about Tom but unfortunately today is not appropriate.

You may remember me speaking of a young man with A-T, Jared Digby.
He lives in America and is one of my FB friends.

A while ago I posted that he was struggling in hospital to stay alive.
He is still there and everyday is a rollercoaster.

Today's FB post was difficult to read.
It said.....
things are pretty rough right now. Jared is in renal failure, fluid is building up and they are going to be putting him on dialysis. His docs say that on x-ray, his lungs look worse than they ever have...they have been unable to do the bronchoscopy as he is not stable enough to have it performed. His sugar is over 300 and his temp is holding steady at 103 degrees (this is WITH a cooling blanket set at 64 degrees.) Currently, he is receiving another blood transfusion in an effort to give his body an extra boost. For quite some time today, his O2 levels were sitting at 70...he finally got them back up to 90. Go Jared!

His Daddy, Will and his siblings were finally allowed in to see him today. (They had been exposed to Chicken Pox, and the doctors didn't want to take any chances, so they had to wait until the incubation period was over.) His Church Family has also been there in force today. Pam wanted me to remind everyone that several times during this hospitalization, when things looked bad, Jared has been able to pull out of it at the last moment. We are praying that he will continue this! 

Tomorrow A-T families all around the world will be wearing "red" in support of Jared.

One day this could be Amelia....... fighting to stay alive.

Some people have questioned why I am putting Amelia through medical research procedures this week.

My answer.....I would like to avoid this EVER happening to my little girl.
Doctors and scientists need to find an answer NOW.


Fight as hard as you can Jared.........

xxx