We really love our cardiologist and think that he would collaborate with our ENT (who is also great) and the anesthesiologist who works often with the cardiologist and is superb. We don't have a neurologist so am not much help in that area. I would think for an MRI, that the three of them would work together...it would be more of a scheduling issue. Let me know if I can be of more help! Ruth, wife to Rudy, mom to Brendon (19), Scott (17), Joshua (13), Matthew Rudy (Full T18, born 09/13/01, and Rudy Matthew (born 08/13/04) http://members.cox.net/t18mom Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~Helen Keller > -----Original Message----- > From: tri-med-bounce@xxxxxxxxxxxxx > [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Karen > Sent: Wednesday, June 29, 2005 5:04 PM > To: Tri-Med > Subject: [tri-med] Seeking a neurologist, cardiologist and ENT > > > 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 \ > \ _.--._ / > 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 > Building ___ooOOoo__ Rainbows www.trisomyonline.org Families Helping Families On-line