Team Rachel
  • Home
  • About Rachel
    • Batten Disease FAQ
  • Team Rachel Road Race
    • 2011 Race Sponsors
      • Become a Sponsor
    • Road Race Registration
    • Road Race Volunteers
    • Sponsor Information
    • Team Rachel Raffle Prizes
    • Race Media Contact
  • The Blog
  • Donate Online
  • Contact Team Rachel
Home » Batten » Thursday
Aug27 1

Thursday

Posted by Kat in Batten, Boston, Julie, Kat, Life, London, Rachel, School

Best day of the week!

We’ve had a small virus passing through our kidlets starting with Boston and London and yesterday moved to Julie and Rachel.  Fever, lethargy and all gone after a good night of sleep.  Rachel had a headache yesterday and then got a fever and went to bed before 6pm and still (at 715am) has gotten out of bed yet.  Julie fell asleep at 7pm with a newly acquired fever and has been up for at least an hour.   Now I am sitting here wondering if Rachel has had this virus for longer because of her disease?  I made chocolate chip cookies for the kiddos and a pot of tea to try and make her headache go away (caffeine) but she wouldn’t touch any of it.  London was thrilled for the cookies.

Holly is doing well.  Its still a learning experience having a dog.  Knowing how much to feed her and at what times, knowing when to take her to the bathroom.  Seriously like bringing a new baby home from the hospital.

Julie is excited for Mrs Buttkus, who I assure her, DOES NOT kiss butts.  I am sure that her new teacher has heard all of the butt and butt kissing jokes before and has a way to get them to stop.  LOL  I am going to probably cry my eyes out putting her on the bus (which I am not sure I want to do but am going to do anyways because I have to let go a little bit in order to be the best possible Mom to all 4 children).

London is so excited to start preschool.  He is going half days and will have the same preschool teacher that Julie had for the last 2 years,  He is going to LOVE it!

Boston who flipped out for several days about a Buzz Lightyear toy which I finally bought him, has since played with Buzz in the sandbox and then “washed” him when I wasn’t looking.  Guess which newly acquired Buzz Lightyear toy doesn’t work anymore?  So annoyed.  Hopefully we’ll get some sound back because he is, as you guessed, is flipping out again.  I should laugh more about this or he’ll drive me nuts all on his 2-year-old-cuteness own.

Woke up to a fantastically chilly morning today.  Perfect way to start the best day of the week.  Now to get the trash out…

One Comment

  1. John | August 27, 2009 at 8:38 am

    The trash guys will hate us this week. Plenty went out. Every time we have a big chuck out I think. Where did all this crap come from? How did we even get it here? Did I pay for this?

    Either way the cookies were awesome and Rachel did get pretty good sleep. She loves sleeping in the man cave.

Leave a Comment Cancel reply

Your email address will not be published. Required fields are marked *

*

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

ROAD RACE GOALS

Goal: $10,000
Raised: $24,755.44

$249% of goal!
(Percentage as of 11/11/11)

PARTICIPANTS

435 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.

Worth Reading

  • Annette
  • Deleria
  • JJ
  • Melissa
  • Susan

Recent Posts

  • Back in the saddle
  • A long overdue thank you
  • Kind words for Granny
  • Dear Santa Clause (by Rachel)
  • Rachel Scarecrow Story

Site Archives

Recent Comments

  • Erika on Back in the saddle
  • Mary Johnson on Back in the saddle
  • Tami on A long overdue thank you
  • Ben Foley on About Rachel
  • Ben Foley on Christmas Week

Blog Cloud

batten disease BDSRA Birthday blind blind child blindness Bucket List cellcept childrens hospital Christmas Colorado cookies Death drama eyes florida Flying W geocaching girl scouts grand mal grand mal seizure grief holly humility jncl Julie key lime pie kids lamictal Life life is good London Rachel retina risperdal road trip santa Sponsors swimming team rachel Terminal Illness Thanksgiving traditions tweets twitter

Boss Hog Info

  • Register
  • Log in
  • Entries RSS
  • Comments RSS
  • WordPress.org

Recent Comments

  • Erika on Back in the saddle
  • Mary Johnson on Back in the saddle
  • Tami on A long overdue thank you
  • Ben Foley on About Rachel
  • Ben Foley on Christmas Week

Tag Cloud

batten disease BDSRA Birthday blind blind child blindness Bucket List cellcept childrens hospital Christmas Colorado cookies Death drama eyes florida Flying W geocaching girl scouts grand mal grand mal seizure grief holly humility jncl Julie key lime pie kids lamictal Life life is good London Rachel retina risperdal road trip santa Sponsors swimming team rachel Terminal Illness Thanksgiving traditions tweets twitter

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.

Site Archives

© 2011 Kat von Tungeln. All rights reserved.