Bella spent a restful day at home today. She is going to try a half day at school tomorrow. Her vision is solid and she is still physically strong. She is also extremely scared. I continue to question the decision to share the doctor's suspicions with her. I should have let her be happy-go-lucky for a few days, I suppose.
I am handling things pretty well. I might be in denial. Actually, if you recall the poem Footprints in the Sand, I believe that God has been carrying me since Saturday morning. I've remained surprisingly calm in spite of all that is going on. Also, I'm just not ready to say that what Bella has is chronic. Her symptoms don't seem to fit the mold. We're seeking opinions from multiple doctors. I made an appointment with a GBS/CIDP Center of Excellence doctor in Houston today. I spoke with the Dallas neurologist's nurse today and learned that Bella's protein level in her spinal fluid from April was 135 (which is crazy high). Her Saturday reading was 71 and normal is 45. We still don't know if this is good news - that her protein levels are steadily declining and are now at 71 or went down to normal and are climbing back up. I share all of this because I can only do so much research and you just never know who might have some personal experience or know someone who knows someone. I have yet to find any sites that explain how quickly protein levels are expected to drop after IVIg and plasmapheresis. I'm making a long list of questions for Dr. Castro next Thursday (we moved out appointment from Monday to Thursday).
Bella received a very sweet gift today. Our friends Jeffry and Shelly are friends with an assistant coach for the UT Men's basketball team. He happened to call Jeffry when they were leaving the hospital Monday night and learned about Bella. Without anyone else prompting him, he had the team sign a ball for Bella. They planned to deliver it to her at the hospital today but she was no longer there. We still go the ball and sent a picture back. Thanks Coach Springmann and Shelly!
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