Wednesday, 10 December 2014

4 Years since Amelia was Rediagnosed


This week marks 4 years since Amelia was rediagnosed.

Below are my status updates on Facebook during that week.
They are short and sweet... (well not totally).
It does not include the pages and pages of comments.......

Very hard to read but grateful that I was not alone.
As well as Scott, family and friends, my Facebook friends got me through.

November 25th 2010

Gutted..... absolutely gutted. After 4 years the ball starts rolling again for a diagnosis. In the next 2 weeks Amelia will be admitted as an inpatient for an MRI and lots of tests. They will now be looking for metabolic and neurological disorders which have a high rate of deterioration over time. She also showed skills not consistent with cp. Very scared now.....

November 28th 2010

Just rang the hospital. They said it will be a few days before I find out when we are going in. Trying to organize 4 specialists in the one room at the same time is quite difficult apparently.....damn. I just want it over.

November 29th 2010

Ok..... If there are beds available, we go in Monday for an MRI and lumbar puncture and take any blood tests needed while under anesthetic. Tuesday we get results and see any specialists we have to see based on the tests results. Relieved now that we have a day. And all your love and support definately got me through the weekend......

December 1st 2010

Today is a moment in history..... Glee karaoke on wii is released today. I will be able to finally realise my full potential as a singer. ( Scott and the children apologize to our neighbors in advance....)

December 2nd 2010

What a beautiful send off the school gave Amelia..... Both of us crying.

December 4th 2010

 I have a sign that says "The Good Life". Amelia called me over and said "mum, we are not having a good life". ( my heart sinks ). " why sweetie? I think we are" I say. " cause we have Tom mum".......and here I was thinking she thought because of her own difficulties !!

December 5th 2010

1. Sooo very proud of Amelia. No fighting the anesthetic.... Just co-operated. Now we wait for her to come out.
2. She may have gone to sleep happy but she definately did not wake up happy. Very distressed by the drip in her arm and says she feels "yuk". Oh dear.....
3.She must be feeling a bit better..... She wants macca's !!!!!!! Lucky it is just downstairs !! 
4.  BUGGAR..... Just got told we will not get any test results for WEEKS.....
December 6th 2010
1. Omg..... Absolutely f'n huge...I am shaking.... I have just been told i definately DO NOT have a child with cerebral palsy. Amelia's balance is what causes her so much difficulty only ( which apparently affects her speech). Now to find out whether it is a rare disorder that slowly kills her balance or something that can be cured......
2.  And Scott wasn't here when they said !!! Damn!!
3.  4 hours sleep.... In our room, a baby with a severe cough connected to beeping machines, A mother snoring and the helicopter pad right outside our window..... Oh and yesterdays news still processing.
4. she is a puzzle" a specialist just said. It can go either way now she said (after my persistent questions). It could be something much better than cp or much worse. More tests maybe and weeks to find out. Mmmm

5. MRI result back. Not good. Talk later when we know more........
6. I just cannot stop crying now.......It is not good at all.

7. Everything I had hoped for is not happening.... Just the opposite

8. Ok.... Amelia's MRI results came back. There is brain tissue missing at the base of the brain that was there 4 years ago in the original MRI. The part that is gone can never be retrieved. They do not know what is eating away at her brain or how to stop it.......

9. Staying again tonight. More tests tomorrow. I cannot possibly express my gratitude enough for all your comments, love and support. I have told them I am not leaving until they have done everything they can possibly do. I do not want them to send us away and then forget about us. Test results will still take weeks though.

December 7th 2010

1. She is always happy! She has no idea what is going on. We are making sure all discussions and tears are done away from her.

 2.Got told last night to start to start preparing ourselves for the worst. It is highly likely it will be a rare degenerative disorder that there is no treatment for. So I said to Scott " let's make her life amazing. Take her to Disneyland".

3. Staying tonight again....

4. Fuck the diet........

December 8th 2010

1.Scott asked tonight "are any of the things you are looking for life threatening?". She said "yes".

2.Big day of tests, some require sedation. 4 departments involved now. Developmental medicine, genetics, neurology and macrobiotics. But may be coming home late today.

3.Please know that I am reading everyones messages even if I do not have time to reply.... Love to all.....

4.On a positive note we had a Christmas concert last night from Amelia and her new best friend, Ashton , because both have missed their school Xmas concerts this week . So cute and funny !!!!!     


Amelia's slowly woke up out of sedation to the clown doctors performing in her room....
Amelia's slowly woke up out of sedation to the clown doctors performing in her room....

December 9th 2010

1. Lots of tears today. Blood tests taken for many rare disorders. Skin/muscle biopsy taken from her arm, nerve/muscle test and a thorough eye test. Results will come back end of January.....had a very emotional moment when I heard about the "dedication" done at amelia's school concert. How I wish she could have just been there and everything was just back to the way it was..........

2. Big meeting with all departments this afternoon. Tom's last day of "little kinder" and I can't go. And the crying starts again. I am so scared about this meeting......

3.  Thanks guys. Meeting at 3. Have a bad feeling.........

4.Going home with a probable diagnosis. Not good and no cure or treatment. We start living amelia's life 10 fold immediately....... Before we lose her....... 


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