June 14, 2013 - Day 69

June 14, 2013 - Day 69

The good news is that Bella has been mostly happy during the last three days and has had a good attitude. While she's not made any major advances in her ability to walk, the upbeat demeanor makes her appear stronger.
The bad news is that the last several nights have been awful! Last night was by far the worst night that I can recall since she got sick (though there have been several bad nights). About 5 minutes after Brian and I fell asleep, Bella started screaming. Brian went in to see what she needed. She was crying incoherently so he sent me in. She screamed at me in this high-pitched, whiny, worse than fingernails on a chalkboard voice. She refused to tell me what she needed but just kept screaming for Daddy. I tried everything I could think of to calm and quiet her but she just kept screaming for Daddy. After several minutes, I gave up and sent Brian back in. He was able to calm her a little finally. She woke again a while later - screaming again. This time Brian went to sleep with her hoping to keep her quiet that way. She moaned and cried all night. And she kept screaming out that her back was hurting and was twisted. She was laying perfectly straight. It was just awful! I read a blog of a 30 year old man who had GBS. He spoke of the incredible pain he felt every night shooting down from his hips through his legs. His doctors told him that it was all just the brain sending crazy signals so this man chose not to take the medicine the doctor prescribed to aide in this (some psych med, I'm sure). It's great that a grown man can reason his way out of that but what do you do with a 10 year old child? We decided tonight we would put her ipod near her head and told her she can text us if she needs to go to the restroom and is coherent enough to text. Otherwise, we will try to drown her out with white noise in our bedroom - and will pray that she is able to sleep peacefully.