ROAD RACE GOALS
PARTICIPANTS
Bucket List
Eastcoast / Westcoast Road Trip!
*Organize a Batten Road Race
Go Geocaching
Hide and maintain a Geocache
4 Wheeling in Moab, Utah
Go to LegoLand
Ride a Camel
Go to Paris
Drive an amphibious vehicle
Buy a house in Colorado
Ride Codzilla in Boston Harbor
See the Flying W Christmas Show
Be in JNCL Cellcept Drug Trial
Visit Niagra Falls
Go Kayaking
Spend the weekend on a boat
See a N.E. Patriots Game
Go to Santa's Workshop (CO)
Milk a Cow
Go Camping
Go Jet Skiing
Visit top of Pikes Peak
Visit the Royal Gorge
Go on the Cog Railway
Go to Disney World
Visit an Alpaca Farm
Collect Fresh Eggs
Own a Home again
Cruise to Bermuda
Go to Canobie Lake Park
Go Fishing (Rachel)
Ride a Train
Go Lobstering
Go to Santa's Village (NH)
Go to Storyland
Feed Santa's Reindeers
Things that are in progress are in have a * before it. If you think you might be able to help us experience another item on the list, please email me directly. Thank you.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
24 pounds lost
Posted by Kat in Rachel
With a helluva lot more to go. I definitely feel better and people are starting to notice. It is mostly about feeling better than anything. I am journaling my (heavily reduced) food intake and still doing yoga everyday. I did a pilates tape last night which was supposed to be an “all over body” workout and it was horrible. All abs work.. every exercise was focused on the “powerhouse.” It was stressful and just shy of miserable so I turned it off and put in one of my yoga videos instead.
I am hoping the weather will warm up soon so we can start going for our family walks again… The kids love it and John and I enjoy getting the kids out of the house and running some of their energy off before bed. I need to take some pictures of the kiddos… this weekend (Sunday is Rach’s birthday).