Bad News: Sarah's eyes deteriorated quite quickly again....On Sunday, 1 week to the day after she stopped using her steroids she started losing her vision again. By Monday morning when we took her to see Dr. Locastro her left eye was 20/200 and her right eye was 20/60.
Good News: She was able to get into the infusion center, so that she could receive her high dose of steroids on an outpatient basis rather than being admitted to the hospital again.
Bad News: All of the neurologists at Akron Children's have officially signed off on helping get us the care we need because either they do not have the time to help us or they do not want to "tackle such a difficult case". This, quite frankly, is bulls%^it, but it is what it is.
Good News: Dr. Locastro, once again, has shown his amazing ability to be not only a great doctor, but also a great man. He spent hours yesterday trying to get us the care Sarah needed at the hospital we wanted to be at, and he was successful.
Sarah's neurologist at the Cleveland Clinic wants to have Sarah looked at by a neuroophthalmologist to see if she isn't suffering from a second autoimmune disease. Her rapid deterioration in her eye sight is uncommon even among those suffering from uncommon diseases such as NMO.
The infusion center nurses were wonderful yesterday, as are almost all of the nurses we have encountered in our 10 month journey of medical craziness. Two more days of infusions and then she is done. We will be on a longer steroid taper this time around in hopes to keep her vision loss at bay. We are getting to the point where there is beginning to be a bit more urgency to get Sarah off of steroids as she has been on them for so long - even her doctors feel this way and it is not just the worries of a scared mama anymore as it has been in the past. The Imuran that she is on is what we are all hanging our hopes on that will solve her dependency on steroids, but as we know so well, there is a chance the drug might not work. Then it will be back to the drawing board...again.
Please keep Sarah in your thoughts and prayers. Send her your love. Most importantly please sent her your Hope. She really needs it right now, as do I.
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