alexandraoranotherrett.blogspot.com
Alexandra or another Rett: Gloves and face rash
http://alexandraoranotherrett.blogspot.com/2012/01/gloves-and-face-rash.html
Please excuse all spelling and grammatical mistakes, my mom first language is French, but she loves to express herself in English. Wednesday, January 11, 2012. Gloves and face rash. Alexandra with both hands in the mouth, typical of her manifestations. I was hoping that it will change, but it still there. Sometime more then others time. The mittens allow her to be more present and open. She does not mind them , at the opposite it bring her centering and calmness. 2 Some food allergies? Rett Syndrome Rese...
spiritdances.wordpress.com
My Music | Inspired By Love
https://spiritdances.wordpress.com/my-music
This is my piano music. It is played by my friend and music therapist Karen Bohnert. My hands won’t allow me to play my songs, but the notes are all mine. It takes me about a year to complete each song. I have completed eight songs since I began composing in 2000. I will add a new song when I am able. My Dad helps me put my songs here. To hear some of my songs Click Here to Listen. Karen wrote this information so you would know how I compose my songs with her. Karly’s Composing Process. January 28, 2010.
spiritdances.wordpress.com
Remembering Karly’s Life | Inspired By Love
https://spiritdances.wordpress.com/2012/10/05/1746
Remembering Karly’s Life. October 5, 2012 · Filed under Uncategorized. October 4th, in “Karly’s Spiritdances Garden”. This is the view from the chair Karly sat on in her garden the last few months of her life. October is Rett Syndrome Awarenss month. As Karly’s mom, I know how much she struggled throughout her life and ultimately died as a result of the many complications that Rett Syndrome created in her body. These are her some of her last written words:. I miss hearing her typing. With much gratitude,.
spiritdances.wordpress.com
The Invitation | Inspired By Love
https://spiritdances.wordpress.com/2012/08/20/the-invitation
August 20, 2012 · Filed under Companion Horse. Karly’s precious little hands. She was so determined to share her thoughts with us, then eventually the world after we found a way for her to communicate at age 10. As Karly’s health declined, she asked me to post this poem she wrote, after she passed. Her beautiful heart and spirit continued to guide us right to the end of her days. She leaves behind an enormous hole in our hearts and lives. Lois Swope-Karly’s Mom. Becomes a distant memory. February 17, 2012.
spiritdances.wordpress.com
Karly’s Memorial Service | Inspired By Love
https://spiritdances.wordpress.com/2012/09/17/karlys-memorial-service
Karly’s Memorial Service. September 17, 2012 · Filed under Uncategorized. Thank you to the hundreds who came from all over the country to join us in loving and remembering Karly. She brought so much light into the world and we feel her loss so deeply. She often told us over the past 12 years to remember, “the day I die will be the best day! I n a 2010 chapel talk Karly prepared for other adults living with physical disabilities, she said:. With great love, Lois (Karly’s Mom). 9 Responses so far ». Concer...
riley-grace.blogspot.com
Riley Grace and Family: December 2013
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Riley Grace and Family. Friday, December 13, 2013. When we bought this house we knew we would want to do a few things to make it fit our family. Some projects will have to wait, but one we just finished! Well, it is nearly finished. The closet still needs to be finished and the door needs a doorknob but otherwise it's done and to us it looks like it was always part of the house! Lucas was having fun with the chalkboard wall :). Subscribe to: Posts (Atom). View my complete profile. Girl Power 2 Cure.
riley-grace.blogspot.com
Riley Grace and Family: 5 weeks til Disney!
http://riley-grace.blogspot.com/2015/01/5-weeks-til-disney.html
Riley Grace and Family. Friday, January 16, 2015. 5 weeks til Disney! I can't believe the Disney Princess race weekend is only 5 weeks away, it's coming up fast! This year I am running the 5K on Friday, the 10K on Saturday and the Half Marathon on Sunday. I'm a little nervous about how tired and sore I will be, but I am excited to reconnect with other Rett families! And this year I have two friends joining me for the first time, which will make it even more fun! Donations can be made here:.
riley-grace.blogspot.com
Riley Grace and Family: January 2015
http://riley-grace.blogspot.com/2015_01_01_archive.html
Riley Grace and Family. Friday, January 16, 2015. 5 weeks til Disney! I can't believe the Disney Princess race weekend is only 5 weeks away, it's coming up fast! This year I am running the 5K on Friday, the 10K on Saturday and the Half Marathon on Sunday. I'm a little nervous about how tired and sore I will be, but I am excited to reconnect with other Rett families! And this year I have two friends joining me for the first time, which will make it even more fun! Donations can be made here:. As Seen On My...
riley-grace.blogspot.com
Riley Grace and Family: February 2013
http://riley-grace.blogspot.com/2013_02_01_archive.html
Riley Grace and Family. Sunday, February 3, 2013. I like seeing where other people run. I loved living in Minneapolis for the trail system, and I love going back there every summer to run on those trails again! This is the trail that goes through my neighborhood. It's not very long - about 2 1/3 miles - but I almost always run it down and back for shorter runs, or end on it for longer runs. I love feeling like I'm running through the woods! Subscribe to: Posts (Atom). View my complete profile.
riley-grace.blogspot.com
Riley Grace and Family: January 2014
http://riley-grace.blogspot.com/2014_01_01_archive.html
Riley Grace and Family. Tuesday, January 28, 2014. Clint Black on The Doctors. Rett Syndrome is not terribly common and it doesn't get a whole lot of press, so it's pretty exciting when I see something about it on tv! Please take a couple minutes to watch this video! Clint Black on The Doctors. Subscribe to: Posts (Atom). View my complete profile. Clint Black on The Doctors. Girl Power 2 Cure. Rett Syndrome Research Trust. Other Rett Girl Blogs. Abby's first visit to Boston for the IGF-1 Trial.
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