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........|