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.
No ERG today
Posted by Kat in Kat, Rachel
Anesthesia doesn’t feel comfortable putting her under without more testing and information. Our largest priority in all of this is keeping Rachel healthy and alive so I am more than comfortable waiting if that is what “they” want.
Instead of another day at Children’s, I am sitting at home watching “Cars” with Julie, London and Boston. Rachel was able to sleepover at my Moms last night after I did anything I could to get her to be as cooperative as possible with the Ophthalmologist. It is yet another rainy day here in Hull and I am kind of glad I get to stay home and just chill out. Surely the children would love to be at the park today or out and about but I am grateful for a day of nothing.
The next step for Rachel is meeting with Neurology on Tuesday, we have been bumped from “regular Neurologist” to seeing Dr Darras. Thank you to Dr Rappaport in Developmental Medicine for pointing us in that direction. From what I can tell, seeing a Neurologist is more crucial for Rachel right now than just having the ERG because the Neuro can help us get testing to see what is causing Rachel’s symptoms. I imagine there will be another MRI done very soon but I wonder if she will be able to sit still for this one. Her inability to attend has gotten noticeably worse than it was this time last year and it has been the best part of 16 months since she had the first MRI. I am sure I am worrying about nothing and Dr Darras will set us down the right path with testing that Rachel will be able to do with and without accommodations.
I will try and keep this updated regularly and keep it out of facebook. The other thing that happened yesterday is that we officially filled out the paperwork to register Rachel with the Massachusetts Commission of the blind. It wasn’t really a big deal because it was expected to happen either yesterday or at the next appointment. The biggest shock came to me earlier this year when the first Ophthalomogist first looked at her retina… I’m not sure I can be suprised like that again.