• Get Involved
    • Make a Donation
    • Our Sponsors
    • Batten Disease Support
  • Egg Hunt Festival 2023
  • About
    • Batten Disease
    • Nicholas
    • OPTN
    • Board of Directors
    • Contact
    • OUR BLOG
  • 2022 Newsletter
  • Donate Via Qgiv

January 31, 2010

January 31, 2010 by admin in Nicholas Update
January 31, 2010

Happy New Year!

Nicholas has continued to be stable this month. He has had a few seizures this month but prior to this he went nearly 3 months with out a seizure. Luckily we were able to only change the time of his evening medicine and not add an increase. He continues to walk with assistance and working hard in physical therapy 4 times a week. His speech has remained stable, slurring some words but still understandable and able to communicate.  Nicholas see’s a speech therapist at school 3 times a week but we have increased speech privately and will start basic sign language. Nicholas continues to eat well, he can feed himself finger foods but due to his eye sight has difficultly finding the food sometimes.  He just needs assitance with locating the food and then his eats very well.   He continues to grow and gain weight, and boy is he strong!   Nicholas continues to enjoy movies and dramatic play of all disney characters, physical activities like kicking balls or sliding down his slide.

Nicholas’s wish was granted by the make a wish foundation in New Hampshire for a service dog. We spent two weeks in Xenia Ohio learning how to handle this special dog named Shane. This dog will be able to detect seizures, act as a mobility dog and vision assistance. It has been quite an experience being in Ohio and training for two weeks for this dog.  But all worth the effort to do this for Nicholas.

Thank you to Linda Stensgaard for putting together the “You’re Fired” (pottery painting) fundraiser for our foundation. It was a great success and I really enjoyed it involving the Bedford mom’s night out.

We have been keeping busy spending time out side sledding as much as possible.

Nicholas with Cousin Connor painting

UPCOMING FUNDRAISER EVENTS

Ice Fishing Durby Fundraiser

Sunday February 28, 2010, 7:00AM-1:00PM, Located at Farm Pond Park, in Framingham Massachusetts. Contact person for this event is Rick Allain and can be contacted at rickallain@verizon.net or 508-626-0542. See side panel for more information on this event.

2nd Annual Bedford Easter Egg Hunt

Saturday March 27, 2010, Located at McKelvie Middle School in Bedford NH. 9:30AM-11:00 AM. Please join us for Easter egg hunt, clowns, face painting, balloons hats, music, raffle baskets and bake sale. Bring your own baskets. See tab on web site for more information.

Tweet
Share
Pin it
Previous StoryDecember 31, 2009 Next StoryMarch 5, 2010

Leave A Reply: Cancel Reply

You must be logged in to post a comment.

No comments yet.

  • Popular
  • Latest
  • Comments
  • Southwest incident 24th December 2011

     Southwest incident

  • March/April 2011 17th April 2011

     March/April 2011

  • 2018 John Tanner Pumpkin Shuffle 5 K 23rd October 2018

     2018 John Tanner Pumpkin Shuffle 5 K

  • June/ July 2011 2nd August 2011

     June/ July 2011

  • 2018 EGG HUNT FESTIVAL 14th May 2018

     2018 EGG HUNT FESTIVAL

  • 11th January 2023

     2021 Newsletter

  • 9th annual Nicholas Giving Tree Project 2022- Holiday Care Packages for Children with Batten Disease 11th January 2023

     9th annual Nicholas Giving Tree Project 2022- Holiday Care Packages for Children with Batten Disease

  • 2018 John Tanner Pumpkin Shuffle 5 K 23rd October 2018

     2018 John Tanner Pumpkin Shuffle 5 K

  • BDSRA Batten Disease Family Support Conference 2018 in Nashville, Tennessee 15th July 2018

     BDSRA Batten Disease Family Support Conference 2018 in Nashville, Tennessee

  • 2018 EGG HUNT FESTIVAL 14th May 2018

     2018 EGG HUNT FESTIVAL

  • Southwest incident 243107 Sun+00:002010-01-31T07:13:52+00:00+00:0001b+00:00Sun, 31 Jan 2010 07:13:52 +0000 2011

     Southwest incident

  • June/ July 2011 2131 AM00000070000005231 2011

     June/ July 2011

  • June 29, 2010 293107 J0000001+00:00 2010

     June 29, 2010

  • 315231 Janam10 2011

     May 2011

  • March/April 2011 173107 AMpSun, 31 Jan 2010 07:13:52 +000013Sunday 2011

     March/April 2011

CATEGORIES

  • Fundraisers
  • Nicholas Update
  • Uncategorized

ARCHIVES

  • January 2023
  • October 2018
  • July 2018
  • May 2018
  • January 2018
  • December 2017
  • August 2017
  • July 2017
  • January 2017
  • November 2016
  • May 2016
  • January 2016
  • December 2015
  • November 2015
  • September 2015
  • June 2015
  • May 2015
  • April 2015
  • January 2015
  • December 2014
  • October 2014
  • July 2014
  • May 2014
  • February 2014
  • December 2013
  • November 2013
  • October 2013
  • July 2013
  • June 2013
  • May 2013
  • April 2013
  • March 2013
  • December 2012
  • November 2012
  • October 2012
  • August 2012
  • July 2012
  • March 2012
  • February 2012
  • January 2012
  • December 2011
  • October 2011
  • August 2011
  • May 2011
  • April 2011
  • February 2011
  • December 2010
  • October 2010
  • September 2010
  • August 2010
  • July 2010
  • June 2010
  • May 2010
  • March 2010
  • January 2010
  • December 2009
  • November 2009
  • October 2009
  • September 2009
  • August 2009
  • July 2009
  • June 2009
  • May 2009
  • April 2009
  • March 2009
  • February 2009
  • January 2009
  • December 2008

NEWSLETTER SIGN-UP

Thank you for your subscription.
Your email format is wrong!
Sad, but we couldn't add you to our mailing list ATM.
Loading...
Donate Via Qgiv
Copyright Our Promise to Nicholas PO Box 10106 Bedford, NH 03110 | Website by Squawkdog
  • Get Involved
    ▲
    • Make a Donation
    • Our Sponsors
    • Batten Disease Support
  • Egg Hunt Festival 2023
  • About
    ▲
    • Batten Disease
    • Nicholas
    • OPTN
    • Board of Directors
    • Contact
    • OUR BLOG
  • 2022 Newsletter
  • Donate Via Qgiv