Last night I had the wondrous experience of watching Alex in his stage
production. It was an incredibly moving experience but also in its own way
quite distressing.
For the first time I was able to see him objectively and it was really quite
obvious to me and to the friends that I had with me that the Master has
deteriorated far more than I / we had realised, probably because I am too close
on a day to day basis.
I knew that his hearing and co-ordination had deteriorated but last night I was
really able to see that he isnt moving the left side of his face at all and
that the difference between left and right is getting a LOT greater. As a lay
person its quite obvious that whatever it is thats going on - and everyones
best guess (that is Alex's doctors) is that its a tumour, has progressed.
I will give the doctors here another push and a shove but fully expect them to
tell me that the risks of an MRI are too high given his quality of life and
prognosis. Then they will throw in the wait and cost etc etc. I disagree of
course but they put that down to me being a biased parent. I am well aware of
the risks, don't get me wrong. But I also fully believe that with proper care
that we can safely find out whats going on and with the Gods of the universe
willing that it can be treated. I also see that Alex has a brilliant quality of
life and that the trisomy diagnosis should not enter into the QOL discussion.
If need be I will bring him back to the states. My own health, for this type of
escapade isnt brilliant but I think that I can do it - and that I will be able
to get a friend to come with me to help. I think raising the money wont be so
hard this time because I am a little more assertive.
So in preparation and in case its needed I would like to hook up with doctors
of a team that we need - it may just be discussion / second opinion if the
doctors here will go ahead, but it may be finding a team that is willing to
treat if it comes to that.
At the very least we are going to need a neurologist, cardiologist, anaethetist
and ENT to work together just to get the MRI done. What if anything shows up
from that will lead us to the next step.
So my request is if anyone on the list already has the above doctors who work
well together? And whether they might be willing to liase via email. I will
talk with Dr Carey as well but if it gets to that stage the more input the
better.
Thanks in Advance
"We come to love not by finding a perfect person, but by learning to see an
imperfect person perfectly"
Sam Keen
Keep Looking For Rainbows!!
_--_|\
/Karen \
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v Karen, Mum to Alex (10 years, T-18 Mosaic)
http://members.optushome.com.au/karens
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line