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February 10, 2012

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. 

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Susan said...

It did my heart good to see her yesterday, even if just briefly. Loved her little "peek-a-boo" with the blanket on her head as you were leaving! Just wanted to let you know, again, that as the Lord brings you all to mind, we are lifting you up. Be strong in His strong in His great strength, today. - Susan

DE Auntie said...

Have found myself thinking about you & Lucy a lot lately. Sending you both strength and prays. We miss seeing Lucy's sweet face at music this year. Lorrie