[tri-med] Re: Seeking a neurologist, cardiologist and ENT

vivan is our chapter chair for soft c olorado.  she and dr showalter had a son 
with t18 many years ago that lived for a short time.
--
jude, mom to derek-17, kelsey-15 
and kameron-6-full t18
golden, colorado usa
 




> Dr. Showalter?  Our orthopedist here in Boise's name is Dr. Showalter.  I 
> wonder if there is any relation?
> 
> Jennifer, mom to Arwen, 7; Elanor (t18), 5; caregiver to Joe (cerebral palsy 
> & spastic displaysia), 26 & Eric (cerebral palsy & seizure disorder), 19; 
> and wife to Andrew; Boise, Idaho
> ----- Original Message ----- 
> From: "Jude Wolpert" <jfwolpert2@xxxxxxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent: Wednesday, June 29, 2005 8:42 PM
> Subject: [tri-med] Re: Seeking a neurologist, cardiologist and ENT
> 
> 
> > we dont have those docs on a team for kam as she hasnt needed it.  BUT
> > bill's company has become a major contributor to the denver children's
> > hospital.  maybe dr carey can see if the drs here are a good fit for your
> > needs.  we actually went to a benefit tonite for the research foundation 
> > for
> > the denver children's hospital and they are very reknown (sp?).
> >
> > bill of course is playing in a golf tourney to benefit them, hahaha.
> > i dont want to be pushy but dr carey is great old friend with dr showalter
> > who is on staff at childrens.  just let me know if we can help.
> > jude, mom to derek-19, kelsey-17
> > and kameron-8-full t18
> > golden, colorado usa
> > http://judewolpert.com
> > http://home.comcast.net/~jfwolpert2
> > NEW photoblog, please visit!
> > www.judewolpert.com/v-web/b2
> >
> > ----- Original Message ----- 
> > From: "Karen" <karens@xxxxxxxxxxxxxxxx>
> > To: "Tri-Med" <tri-med@xxxxxxxxxxxxx>
> > Sent: Wednesday, June 29, 2005 6:03 PM
> > 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
> >
> > 
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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