Hello long lost friends.
It has been a while and there are multiple reasons for that.
Struggling to know where to begin.
Lets put it in point form......
1. Scott is working full time and I am home full time again.
Bigger adjustment than previously thought.
2. I have been trying to re-establish myself at the kids schools.
I like them to know that I am involved and to hear how they are going.
(This is still at developing stage).
3. Attempting to get the house to a stage where I like it.
Lots of rearranging, moving, tidying and organising
(ALSO still at development stage- you will see this LOTS!).
4. My dad had an unexpected visit to hospital.
(Very emotional, time consuming and scary. I was the "go to" person for various reasons during this time).
He was in there for approximately 4 weeks and is still not better.
He is taking lots of drugs.
(lots of stories of how funny he thinks he is at later date).
5. Tom shows that he is carrying too much on his little shoulders for an 8 year old.
6. Amelia says "I cannot see properly. I think I need glasses".
7. Finally have meeting with Tom's new medical team and discover we have been taught NOTHING that we should have been taught.
Tom needs blood tests and optometrist to see what damage (if any) has been done to his body.
(referral still on noticeboard)
8. My 40th Birthday AND Party.
9.Amelia needs glasses but Tom doesn't.
10. Tom's psychologist is awesome.
11. Dentist visit.
Tom is fine, Amelia has the signs of gum disease AND screams the place down because she is petrified.
12. Hear about a medicine that is helping an A-T child in America.
See Video evidence.
Research and see how it helps many things that A-T destroys.
It is illegal in Australia.
13. Amelia forgets to wear glasses to school.
"Don't worry mum. I am a rebel. We don't follow rules in this house".
14. A medicine in Italy helping A-T children .......... through unorthadox trials.
Betamethasone (a steroid).
Steroid cannot be taken normally.
Blood needs to be drawn from child, rinsed, steroid stirred through, blood inserted back in child.
Qld A-T clinic hoping to be part of more ethical trial.
Amelia would need the "procedure" once a month....... in Brisbane (3 hr plane flight from here).
15. Amanda goes to see Osteotherapist.
She comments that Amanda's body seems inflammed from neck to toe.
Notices shoulder is out of socket.
"You are 1 lift away from serious injury".
16. Due to mum being shit house atm, Tom does not take money for school disco.
He gets handed an ipad and is left with it unsupervised (at school).
He googles ALL of our names.
This includes Amelia Nicholds.
Take a breath.
Amelia and Tom are not ready for the truth of Ataxia Telangiectasia.
Tom then counts how many photos there are of Amelia online COMPARED to him.
He does not READ everything there is to read.
Tom comes home and complains that we have put more photo's of HER than HIM.
17. Scott arrives home from work to Amanda sobbing.
Tom is screaming and sobbing (because mum is).
Amelia has headphones on watching a Minecraft video.
Amanda decides depression has arrived/
This blog is about Amelia.
SHE IS FINE.
(Footnote : All clothes and dishes have been cleaned during this time.
There has been food placed on the table during this time - no comment on WHAT.
Children have NOT arrived at school on time everyday).
Miss Amelia with her glasses.
Just remember the WHOLE family is affected by A-T, not just the child with it.
(Footnote 2 : Amanda will remember many more things after pressing Publish).