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the ENT doctors here basically told me that if we decide to seek treatment in boston that we are no longer welcome here…  an ENT directly told me “if you decide to seek treatment in Boston, you should move to Boston’ and another doctor told be ‘if you should end up in our ER it might be hard for you to get an ENT consultation’.

it’s hard to explain the enormity of that.  this disease is unpredictable.  in the year and a half that we have been dealing with this we have needed to check into the ER three times.  the hospital that we are in is 5 blocks down the street from us and it may no longer be there for us if we have an an emergency.  so what to do?  what happens if ayrie has breathig difficulty?  where will we go?  who will we be able to see that knows anything about RRP?

so i keep waking up wondering how much i have screwed things up.