I have a few moments so I am going to actually try to post something, while I can.
Em has been awake during the day for the last week or so. That is a very good thing, compared to what she had been doing the week before. However, she typically wants me by her side all day long so I haven’t had much time to myself. She is feeling pretty anxious about everything and doesn’t want to be alone. So, we play games or she is on the laptop, when she can stand the light. I know she is going stir crazy – being cooped up in a dark room for weeks on end cannot be good for her mental health. I know it hasn’t been good for mine!
We are getting ready to go to see Dr. Tinkle tomorrow. So much is riding on this visit. I am trying not to build it up too much in my head – I really don’t want to be disappointed like we have been in the past. We are at a really desperate point right now and need some help. The local folks have tried to help and have done a decent job but there is no substitute for a true expert. We really need Dr Tinkle to guide us to the people and treatments that will help. Her future is on the line. Guess I can’t help but build up my expectations. He is really the last hope we have.
Her neurological symptoms have stayed about the same – severe headache, neck and back pain, nausea, pins and needles in her feet, sensitivity to light and sound. She is sleeping a bit better, but drifting back towards a schedule of falling asleep late because of the pain and sleeping later in the morning. She is eating some but still complaining of serious nausea and it does prevent her from eating at times.
Praying that tomorrow evening we have some answers and have been pointed in the right direction!