This week, a vacation week for me, has not so far shown signs of being vacation-esque.
On Sunday I had to break my mother's heart by canceling our visit to NJ because of Grace's poor sleep and health of late.
On Monday we took Grace to the neurologist to discuss the not-really-autistic symptoms she has: feeding problems, including dysphagia and oro-motor dysfunction; severe gross and fine motor skills delays (about 3 years behind) accompanied by hypotonia; general fatigue and lack of energy. We went in with info from the interwebs about "global dyspraxia", but he herded the discussion towards some more testing to learn more about where the genes went wrong. He tested her reflexes, and they weren't there. He recommended several blood tests and perhaps a muscle biopsy if the tests show mitochondrial disease as a possibility. We said that we could accept that Grace have a little needle pricking if he felt it was in her best interests. Then we went home and looked up mitochondrial disease. We were horrified to discover that this could be our worst nightmare--cell death, possibly leading to blindness, deafness, and then death. We have since then (without success) tried not to think about this possibility. We have to wait another 6 weeks or so before the test results are back.
On Tuesday after school, we took Grace to Riley to have blood drawn. This was not fun for anyone within a 5 mile radius. It took about half an hour to draw enough blood from her shrieking, flailing, straining, surprisingly strong body to fill the never-ending row of test tubes. On the way home she let us know in no uncertain terms her feelings about being held down and subjected to pointy objects.
Today, Wednesday, was to be another quiet day. I had some time to visit with some friends and have lunch with another friend. After a leisurely walk, I checked my cell phone, only to learn that it had run out of juice. I arrived at home to hubby rushing out the door saying "I guess you don't know--" Grace had cut open her face against a table edge at school and had to be taken to a doctor, where they opted for Dermabond instead of stitches. Reports are that this procedure was not fun for anyone within 15 miles. I walked in to see that the left side of my daughter's face was still covered in blood, which we weren't allowed to clean up all the way because the Dermabond was still setting. Tonight we have to wake her up every four hours to make sure she doesn't go into a concussion-induced coma. She acted pretty much like herself this evening, but a little more clingy, and a little less likely to climb on the table. She vomited once.
Tomorrow's a day away!!!
