Once again, this blog has been neglected.  We do spend more time at the doctor's office than typing up the results.  A brief summary of what has been going on since June.  Amy got worse.  Walking and standing for long periods of time became too difficult and she gave in and got a wheelchair.  This made the trip to the grocery store so much easier/more frustrating for Amy, and a lot more work for Logan.  He pushes her and pulls the cart. 

To Amy, dermatomyositis makes the muscles feel as if they were made of lead or concrete.  Trying to pick up her feet when walking felt like walking through waist deep mud.  Picking up a cup to drink from felt like trying to lift a gallon jug of milk.  This, plus overall fatigue, and difficulty swallowing were really making life miserable for us both.  Just to make things fun, Amy also got a case of shingles.

We got our appointment at Vanderbilt.  The neurologist at first thought Mixed Connective Tissue Disorder.  That really means it looks like a bunch of stuff and doesn't fit neatly into one disease.  Then when he heard that Amy had not just rashes, muscle weakness and soreness, and fatigue, but also difficulty swallowing, he said, "Oh that's a classic dermatomyositis symptom."  We got referred to a surgeon for a biopsy and scheduled for a nerve conduction study and EMG.  August, we finally got the biopsy done.  Everything went smoothly, and results were back in a week.  Dermatomyositis.  No overlapping lupus or other autoimmune diseases.  A classic case. 

Now, Amy is on a high dose of steroids and an immune suppressing drug.  The medications have caused some GI troubles, but that seems to be getting better.  She is trying not to be too upset with the very thin hair that seems to disappear off her head.  The prednisone is trying to make it up to her by growing hair everywhere else, but she doesn't like that either.  The "moon face" and general body re-shaping are depressing, but hopefully temporary.  Improvements were slow to show up, but now Amy is showering and dressing independently.  She can raise her arms over her head and turn the steering wheel on the car.  Her legs are not ready for a long drive yet, but freedom is on the horizon!  (She attempted to drive for the first time today.  She has not driven the car since March.)

We hope she continues to gain strength, and know that her improvements have come through the grace of God.  Thank you for your continued prayers.  We have really appreciated the support.

Logan has been having some issues as well.  Migraines have been sending him to the doctor more frequently and having more tests run.  His neurologist duplicated all of the tests from five years ago and found the same result, all normal, except for his EEG.  But, his neurologist feels that his EEG has a normal variant and not seizure activity as he first thought five years ago before he consulted his partner with Logan's case.  The problem was to find some medication that will work to keep the headaches at bay for Logan since the previous medication was not as effective as it was before.  The first medication that he was given, Cambia, was not covered by our insurance nor did the samples that he was given really work for him.  The second medication was Topiramate.  This medication after three weeks still did not help and was making Logan have a very short fuse (not a good trait when driving a school bus!)  He received a phone call today from the neurologist's office with a suggestion for a new prescription.  So, only time will tell to see if this one will work.

Well, that is all for now.  Thanks again for all of your support and prayers.  Amy and Logan.