Today was a BIG day.
So much information and knowledge about Ataxia-Telangiectasia.
I had to really listen today and try to absorb what I was being told.
This was a bit hard because Amelia was the worst I have ever seen her today.
Great difficulty walking, a lot of trouble talking and very grumpy that she was "bored". Tonight she has also asked if she needs glasses because her eyes are sometimes blurry............
I will try my best here to document what I can about what I have learnt, but it may also be a post all on it's own, once we get home.
After such a late night last night at the playcentre we were awake at 6am today.
Our first appointment today was in the research centre of the hospital. An area set up by The University of Queensland. We had to be there at 8:15am.
Our mode of transport is taxi in Brisbane. There is no way I would be able to navigate my way around this city but taxi's are proving to be very costly. And every taxi driver has English as a second language so far. The amount of times that they just stare at me blankly once I give them the address........
We arrived for our first appointment and it was good to see familiar faces after last night. Amelia and I were taken into a "boardroom". Sitting at the table was Neurology, genetics, the main organiser of the A-T clinic and later a nutritionist. The discussion and questions began and I knew very quickly that I wanted Amelia gone so that I could talk openly. Thankfully the staff took her away and entertained her for an hour (she has a new best friend - Greg. He is a giant kid!).
The medical staff in the boardroom wanted to know everything. Our story from when Amelia was diagnosed with Cerebral Palsy to now.
I was then asked what I wanted from the clinic and to see achieved.
I said "for you to find a cure or to at least slow the progression down".
The neurologist then explained about the A-T convention she attended in February in Frankfurt. Where they are with the research worldwide and what they know already. At the moment everything is pointing towards creating healthy stem cells through Amelia's cells. They may be learning how to do it in the science lab but they then need to learn how to make it happen in Amelia's body. She explained that she had created a poster about what is being done and a powerpoint presentation to be shown at the convention. I feel very lucky that she has offered to email all of this to me.
I learnt that everyone has a "gene" that organises all of the other genes into a healthy organised pattern. Amelia's "organiser gene" does not work.
The main affects of A-T are neurological, respiratory and cancer. They believe that the respiratory and cancer are treatable but they are trying to find a way to treat the neurological.
We discussed Amelia's appettite and my concern with her recent weight gain. They explained that her body has to work so much harder than everyone elses, that she constantly needs food and drink to replace the energy being lost. The choice of food could be better but I was not to be concerned that she is always hungry. Which also then led to a discussion on the fact that she is always hot and sweaty. They explained that because she has to work so much harder to do ANYTHING it is like she is constantly exercising. To talk, walk, eat, swallow, even breath is a lot of work. Anything that requires the use of muscles.
I walked out regretting that I did not record that meeting.
Next I had a meeting with the genetics doctor.
He explained the risk of me getting cancer. I am going to ask about Scott tomorrow.
As soon as I return I will need to start regular screenings to catch it immediately.
He also explained how lucky we are to have this clinic. I already know that though.
After 2 hours down time at a cafe with some of our new friends we returned to meet Martin Lavin. He, like Richard Gatti in America, is a major researcher in the area of A-T.
He spoke for a long time and I tried to absorb everything. Amelia was grumpy and bored but I had to ignore her complaints so that I could make the most of this information he was giving us.
Martin has been researching A-T for 30 years.
In 2010 he attended a "very clinical" conference on A-T in Los Angeles. In 2012 there will be another in New Delhi.
He mentioned a clinical trial that will be happening soon with a low steriod. It may be able to slow down the progression of the neurological side of A-T. He spoke of drug screening, stem cells and samples of skin and blood from kids and parents. He explained how all A-T researchers are working together on separate parts of finding answers. He spoke of drugs that work on animals but are too toxic, at this stage, to give to humans. He explained the need for funding and the fact that they can only continue with money. The federal government may be cutting medical research in the new budget and this will be catastrophic for us. He spoke of Krissy and Brashat and the work that she has done in the last few years. But he said everyone needs to step up and help her. At the moment she is doing all of this work for us on her own. This only made me more determined to fundraise and attend the gala dinner in August for Brashat.
So much information, I hope I have documented it correctly here.This was only part of his talk.
On Tuesday June 7th there will be a "whole day event" for parents and researchers in this building to learn everything THEY know. Researchers from America will hopefully be attending. I believe that Scott and I need to attend this.
Yesterday I learnt that Amelia can no longer drink out of a drink bottle. She needs a straw cup to stop fluid going into her lungs (the head tilts forward instead of back). So much to take in.
Amelia and I came home today, laid on the bed and fell asleep cuddling. It was 2:30pm.
We treated her to dinner at the Pancake Palour and came home to watch Disneyland on Getaway (thank you for telling us about it Kirsty and Shell).
Final clinic day tomorrow and then home Saturday.
After what was a "full on" day I found myself fighting negativity.
No parent should have to go through this.
We should be at home going to dancing classes and netball practice like other children get to do.
We should be at home with Scott and Tom having dinner and talking about our day and looking forward to the future.
But as always you get over it and continue on.
P.S thanks for your concerns about my mum. I pass food under the bathroom door occasionally !!