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Home » Posts Tagged "Colorado"
Jul22 3

September 2011

Posted by Kat in Batten Disease, Bucket List, geocaching, Kat, Life, Rachel

After the recent heat wave affecting New England we (me and the kids) have decided to postpone our summer road trip  until September.  Its a good excuse to blow off a little school but more importantly the weather will be more temperate and I won’t have to deal with 110 degrees while strolling through Hays, KS or Terre Haute, IN.  We stayed there last year in our travels and both were little slices of hell on earth.  Neither my kiddos nor their Mom do very well in such high heat.

We’ll be driving out to Colorado and hopefully staying at the Garden of the Gods Campground (they don’t close until September 30th) for about a week and hanging out with incredible friends (they can only be found in one place apparently lol).  We were considering staying a while but the Colorado Springs School for the Blind isn’t sure if they’ll be able to provide programming for Rachel.

We’ve generally traveled route 70 and took route 80 home once but we are open to suggestions.  Any good road stop ideas?  I really want to go to Niagra Falls this time around…. but I hate the drive through upstate New York.

Planning to go to the Flying W for dinner, Santas Workshop for some fun, Geocaching, then float down the Arkansas River and we (me) are looking to do some stock friendly trails with the Jeep while we are out there.  Every summer seems to be a little more difficult than the last so we have no choice but to take life by the horns……………..

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Jan02 1

December Trip – Foul Ball

Posted by Kat in Bucket List, Colorado, Kat, Life, Vacation

Let’s see. Me and the kids planned a Trip of a Lifetime from Boston to Colorado, stopping to see family in Kansas City. The goal of the trip was to see the Flying W Christmas Round-up (Bucket List item).

It didn’t quite happen that way.

My minivan broke down in PA (water pump died and overheating commenced).

Once the van was fixed we hit lots of snow.

We ended up getting to Kansas City and stayed a few days but saw more weather heading through Colorado and Kansas and I decided it was safer to drive home.

I will do this trip again next year (earlier in the Flying W Christmas Season) and we will GET THERE!!!!

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Dec13 1

Headed Out

Posted by Kat in Bucket List, Colorado

We’re going back to Colorado via Kansas City to see the Flying W Christmas Round-Up! Leaving in a few short hours (need a little bit of sleep first) and will hopefully drive as far as Ohio tomorrow and stay in a TBD hotel.

Driving to Kansas City and staying 2 nights then headed to Colorado on Thursday.

Wish us luck that the weather holds out. :)

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Dec06 1

Rachel Update

Posted by Kat in Batten Disease, Blog, Bucket List, Christmas, Colorado, Rachel

Rachel has been suffering from a nasty rash.  It started off slow around her shoulders and it has progressed down her body, leaving a whiteness in the pigmentation of her skin.  I’m concerned that it is an autoimmune rash and actually brought her to the doctor on Tuesday for an exam and blood work.  I asked the doctor to test her for Lupus markers and hopefully we’ll know in the next couple of days.  The rash is nasty and seemingly unrelated to medication or Batten Disease.  She is quite uncomfortable because its currently in her inner and outer thigh area so hopefully that will clear up or move soon. I’m also waiting on a Dermatology referral to Boston Medical Center.

Good News!  We are (me and the 4 kids) headed to Colorado for a quick trip to see the most AMAZING friends  and family in Kansas City and to cross The Flying W Christmas Round-Up from our Bucket List. Rachel has loved the Flying W since she was an infant so this should be a truly remarkable experience for her and for the other kids.  They are STOKED about going to the 8pm showing so they get to stay up!

This Saturday I am taking the kids (with the help of my Mom) to the Make-A-Wish Christmas party at Boston’s Logan Airport.  Apparently they have the party *IN* the Delta Airlines Hangar so I am really excited for the kids to see that.

Merry Christmas. :)  Today’s picture is the kids with Santa, taken at the Hull MA Carousel Shop.  I’ve put this picture in our yearly business Christmas card.  :)
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Road Trip for Research!

On June 14th, 2012 Rachel (12), Julie (8), London (6) and Boston (5) and I will be headed from Hull MA to Eureka CA and up to Seattle and back to fufill one of our bucket list items. Along the trip we'll hand out flyers and awareness bracelets and try to raise $7206 for Batten Disease Research, $1 per mile. If you would like to assist us in our goal, please click on the link below and donate through paypal.

GOAL: $7206 ($1 per mile)
$226 Raised to date


Tax ID# 45-3078380

Bucket List

Eastcoast / Westcoast Road Trip!
Visit Redwood Forest
Swim in the Pacific Ocean
Meet Izzy and Elly
See Seattle Fish Market
Organize 2nd Batten Road Race
Ride a Camel
Go to England
Visit Niagra Falls
Go to Mall of America
See the Flying W Christmas Show
Be in JNCL Cellcept Drug Trial
Go Kayaking
Spend the weekend on a boat
Organize a Batten Road Race
Go Geocaching
Go to LegoLand
Drive an amphibious vehicle
Ride Codzilla in Boston Harbor
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.

2012 Road Race

2nd Team Rachel Road Race

Date: Sunday, October 28th
Time: 9:00am Race Start
Location: Hull High School
180 Main Street
Hull MA 02045
Stay tuned for more information!
Proceeds will be donated to Batten Disease Research at Massachusetts General Hospital.

2011 ROAD RACE

Goal: $10,000
Raised: $25,000

$250% of goal!
435 Participants

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About Me

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.

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