Grounding

Hello friends,

Nothing like a grounding to remind you of your life when what has occurred over the last 2 days.

The pre-logies excitement WAS so surreal, but it was also for a reason.

Amelia has not been well.
Amelia is not well.
Amelia will never be well.

Yesterday we attended our local Children's Hospital for another Hydrotherapy session.
A pool that is heated and allows for exercise that heals and helps.

I had to step in 45 minutes into the session due to the look on Amelia's face.
That is all I need to know she cannot take much more.

"Amelia. Do you want to stop?" I asked.
She nodded her head sadly.

"But she said she is ok" the therapist said.

"That is the problem. Amelia is being taught how to say I need to stop now please.

She currently feels like I will upset, anger or offend people if I speak" I responded.

"She will endure an entire day at school without drinking water or toilet if she feels the staff are too busy with others.
She does not want to intrude......or upset as she believes it will be perceived as annoying" I continued.

As usual, they instructed Amelia to speak up.

Another one to add to the list.

After we were washed and dried we went up to Oncology.
Amelia has been battling another UTI post surgery.
Catheters create bacteria and infection and they keep reoccurring post surgery.

I managed to corner her oncologist and explained our absence from the last appointment.
(he has not returned my emails or phonecalls).

We have an appointment every 3 months to monitor whether the cancer is still there or has returned.
(he has already warned me that this particular cancer may suddenly return in the lungs).

He explains how to organise more appointments.
(must always advocate and stay on top of each child's care).

We go to Developmental Medicine where Amelia has been a patient since 3 years of age (she is now 13).
I explain we need help with the current UTI after 3 lots of antibiotics.
No one responds.

We go to lunch.

We organise Oncologists appointments for ultrasounds and x-ray.

Developmental rings and asks lots of questions about UTI.

"Take her to Emergency right now or get her GP onto it immediately".

Amelia hears me question emergency and starts crying.
I look at Tom and wonder what the hell I am going to do with him while he questions about school the next day and the lack of insulin.
Scott works full time!

GP.
We will try with everything we have.

Ultimatum is given. You have 5 days to get on top of it, or we suggest admitting her.
This one has been going on too long.
It may be something else entirely.

Amelia and I are both so tired though.
Urine release is needed every 2-3 hours overnight at the moment.

What do we do?

We decide to give it a few days on a NEW antibiotic.
Last hope.


Tom's T1 Diabetes levels are out of control at the moment.

Just found out our Credit Card has been hacked and blown out by at least $5,000.

Respite money for Amelia is NIL and I am struggling to get funding for more.

I have a $9,500 quote for a new wheelchair for Amelia that has been on my desk since 2016.
Scoliosis is getting worse because the current one does not fit.

Do you know how humiliating it is to apply and be rejected for funding to get this damn wheelchair every single place that you get the guts up to apply to?

Some people have pride.
Some people can barely afford to live (like us) and also afford equipment like this.

Lets look at Dr Chris Brown again.
What a lovely distraction.

Sunday was good.

xxx