You’ve heard the saying “worry does not empty tomorrow of all its troubles, but empties today of all it’s strength”. I’m not really sure who is famous for stating this, but I wonder if this person had a child with a chronic progressive degenerative disease that has them wondering at all hours of the day and night what on earth is going on with their child. I had strength beyond my comprehension today, and yet I am so worried about our girl. Something is wrong, different, changing.
We had a long appointment with our main doc today, which in the grand scheme of things did not amount to any big changes yet, just a lot of what if’s. We are scheduled to see a new neurologist tomorrow one who specializes in seizure disorders. When Lucy was a teeny tiny baby this neurologist was one of the first doctors who clued us in that there was something going on with our little one, but steered us toward a neurologist who specialized in neuromuscular diseases. Ironically our neuromuscular neurologist is steering us back to him. Seizures are not something new in Lucy’s life, but appear to be making a come back.
We are scheduled for a blood transfusion tomorrow, labs and cultures will also be drawn as Lucy is teetering on the fence of a fever. I am worried that she is brewing something, add to that worry that our main doc is going to be away for the next two weeks, and I believe that my worry makes me a stronger advocate for our daughter.