Claire Wiegand's Story: 2014 - 2015


Rett Syndrome: [Main] [Contact Us] [RS Site Index] [Calorie Boosters] [Claire's Story] [Cookbook] [Letter] [Tips]

Claire's Story: [1989] [1990] [1991] [1992] [1993] [1994] [1995] [1996] [1997] [1998] [1999] [2000] [2001] [2002] [2003] [2004] [2005] [2006] [2007] [2008] [2009] [2010] [2011] [2012] [2013] [2014] [2015]

This year posed some new challenges. Claire's adult day program closed in November with the intent of reopening a week or so later at a new facility nearby, but that fell through. Eight months later, the new facility hasn't yet opened. Fortunately, Claire's sister Jill gave birth to a baby in October and was available to help, so she has been providing child care for us during this time. We are grateful for the help and love the opportunity to see our adorable granddaughter so often.

A bigger worry was Claire's weight loss this year. We didn't even notice it happening until she had lost 25 pounds over an 18-month period, dropping to an alarming 95 pounds on a 5' 3" frame. In the fall, she was eating much less food, and by February, she had pretty much stopped altogether. We spent the first 12 years of her life trying to get high calorie foods into her, then switched to low calorie foods when she suddenly gained an appetite. Her weight had been stable for nearly a decade so we hadn't been watching it anymore. So now we're back to giving her high calorie foods and Instant Breakfast again. She is willing to eat when we feed her but will not pick up food anymore to feed herself, which is a skill we have relied on for years. She will still drink from her Rubbermaid straw cups so she gets most of her nutrition and calories from Instant Breakfast. Fortunately, she remains healthy and we have managed to bring up her weight a bit, despite her very best efforts not to eat. The good news is that her loss of interest in food has led to her no longer needing to wear a bandana because she has stopped chewing her clothes.
Here's Claire with all of the brand new pants Mom bought her with her birthday gift card from Grandpa and Grandma Schilling. (July 2014)
One of Claire's favorite places to hang out is in our bedroom where she can watch her favorite story, Funny Monsters for Tea, playing on the computer in the study. (October 2014)
Claire got a new skeleton shirt to wear to day care for Halloween. Look how cute she is in it! (October 2014)
Claire loves opening her Christmas gifts. (December 2014)
We took Claire to Sahm's for some tasty ribs. Tom and Debbie held hands while waiting for our meals, and Claire reached out to join us. (December 2014)
Claire was in an especially affectionate mood and cuddled with Mom on the couch long enough to take some selfies. (February 2015)
Here's Claire with some early birthday presents from Grandma. (July 2015)
We babysat Claire's baby niece, Kelly, overnight while her parents hosted a Fourth of July party. Here are our two sweet girls attempting to share a recliner. (July 2015)
Claire turned 26 and opened her remaining birthday presents and cards with excitement. She was especially thrilled with her new Little Mermaid sound book. (July 2015)


Claire's Story: [1989] [1990] [1991] [1992] [1993] [1994] [1995] [1996] [1997] [1998] [1999] [2000] [2001] [2002] [2003] [2004] [2005] [2006] [2007] [2008] [2009] [2010] [2011] [2012] [2013] [2014] [2015]

Rett Syndrome: [Main] [Contact Us] [RS Site Index] [Calorie Boosters] [Claire's Story] [Cookbook] [Letter] [Tips]

Copyright © Deborah Schilling