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Cub Scouts
Elliot is officially a Cub Scout. He attended his first camp-out last weekend with his daddy. According to Elliot they “ate bad food, used stinky outhouses, and had fun doing scout stuff”. Wow, where do I sign up!
When they left the woods early Sunday afternoon, his Dad rewarded him with a trip to the local camping store where Elliot was allowed to pick out his very first Swiss Army knife. I cannot begin to tell you how proud he is of that thing… and in his new ability to ‘whittle’. Woe unto any tree branch in the neighborhood that is within the child’s reach.
Chapel Hill
The University of North Carolina’s medical center has become our chosen health care provider as we’ve been unable to find quality care for CMT here in Asheville. Chapel Hill is a 4 hour drive one way so our visits always require an overnight stay. We made the trek down the mountain last week for an appointment to pick up Elliot’s new AFO’s (ankle-foot orthodics) followed by a visit with the orthopedic surgeon Dr. Campion… check him out http://www.med.unc.edu/wrkunits/2depts/ortho/PERSONNEL/FACULTY/campion.html
The appointments went well and Elliot is adjusting to his new ‘day time’ AFOs.
Nightly Routine
Each night at bedtime, I help stretch Elliot’s muscles and tendons through physical therapy exercises and massage. The latter is one of the highlights of his day. We use the electric hand held massager a few times a week but massage oil and ‘mama power’ seem to work best. Since there is no cure for this disease, our main focus is to keep the muscles and tendons as limber as possible.
Elliot in his night braces
After massage, we strap on his night braces…. which is a whole lot like going to bed with your shoes on. Elliot makes the best of it each night but wakes me up – consistently - at about 4am to the sound of ripping Velcro. He fumbles to get his braces off and whips them off his bed so he can enjoy his final hours of sleep.
Elliot Saves the Day
Elliot’s 3rd grade class had a field trip this week which consisted of a walking tour of historic downtown Asheville. I own a restaurant in the center of town so I knew my boy was ‘in the neighborhood’. I took a call from his teacher, Mrs. Reese, at about 10:30am. Elliot wasn’t complaining about his new braces but he was getting slower and slower and starting to lag behind. Mrs. Reese wanted to know if Elliot could hang out with me at work until the children were ready for their picnic lunch.
Western North Carolina has experienced drought conditions for almost 2 years but on this particular day it was cold and rainy. So in addition to agreeing to give Elliot a place to hang out, I offered to let all three 3rd grade classes have their picnic in my private dining room. Elliot helped set up the banquet room and within an hour there were 60+ kids filing into the Café. As host, Elliot roamed the crowd throughout the lunch making sure that everyone had what they needed. The children brought their bagged lunches, I provided the soda and the chef whipped up six dozen sugar cookies – served warm out of the oven. It was brilliant.
The kids were jacked-up on sugar when they boarded the bus to head back to school but I didn’t care. Elliot went from ‘slow poke with the braces’ to hero-of-the-day.
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