Thursday, 22 March 2012

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.


Wednesday, 21 March 2012

A-T Clinic Day 1

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?


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.


Monday, 19 March 2012

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.........