Yesterday, we received a call from the neurologist at Childrens Hospital of Pittsburgh that we were scheduled to see at the end of May. After telling her how long it has been since Alicia was dealing with the neuropathy in BOTH feet and explaining that she isnt able to walk without crutches, she told us to come in tomorrow morning around 9:30 and she would fit us in so she can see Alicia before we see the neurologist at Cincinnati Childrens Hospital. I am anxious to see if they have any other tricks up their sleeve that will enable Alicia to walk on her own again. So far, Alicia stood on a needle, an earring and glass and did not know it until she saw the blood on the floor. This is scary and just one of the many complications she is dealing with from liver disease. We have tried so many different things so far and I was told by a different neurologist that the only thing that will stop the progression is a transplant. The United Network of Organ Sharing doesnt recognize this as a real liver disease related problem and therefore will not give exception points for it. If the neurologists at both hospitals list all of the unsuccessful attempted treatments and prove that we have tried them all and nothing outside of a transplant will work, they may be able to change their minds. I will post after the appointment tomorrow.
Posted on: Thu, 24 Apr 2014 20:36:44 +0000
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