understandinglu.blogspot.com
Understanding Lu: August 2015
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Our family's journey in living with Rett Syndrome. Wednesday, August 12, 2015. The annual Pennsylvania Strollathon is coming up on September 5th this year! It's being held in Pittsburgh again at the nice park we strolled in last year, while enjoying views of the river. The 2014 event raised over $10,000! Newron and breathing drug. New discovery about the X Chromosome. Neuren and Orphan Drug Status. What if she could pick her own tomatoes, all by herself? Or walk without anyone's help? Lucy May age 4.
understandinglu.blogspot.com
Understanding Lu: May 2015
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Our family's journey in living with Rett Syndrome. Tuesday, May 19, 2015. For the birthday girl. Today marks five years of life for Lucille May Shaffer. I can't even believe it! She was so happy! We put her tomatoes in big pots on the ground and then we took a trip to the greenhouse yesterday to buy some flowers for her garden also. Her birthday party was also loosely garden "themed":. All of the kids got to plant a marigold and take it with them. Here is a picture of the party girl:. Even though I worry...
understandinglu.blogspot.com
Understanding Lu: July 2015
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Our family's journey in living with Rett Syndrome. Wednesday, July 29, 2015. But on the other hand. This is a sequel to my last post, "The Hunch". The fear of the unknown can sometimes be so overwhelming, and long-lasting that it really gets the better of me, and I hate that! I am the boss of me, not fear. So after posting that drag of a post, I then suddenly thought, "But what about all of the GREAT things that have happened in the past three years? And I love it for her! Yesterday, after watering her g...
understandinglu.blogspot.com
Understanding Lu: The Hunch
http://understandinglu.blogspot.com/2015/07/the-hunch.html
Our family's journey in living with Rett Syndrome. Friday, July 24, 2015. Since the time of her diagnosis, she has lost the rest of her functional hand use. One day I had to admit that she couldn't turn the pages of her board books anymore, which was something she used to love to do. She had little bins of them and she would pull them out and flip through them and look at them so intently:. Here is a picture from the summer where she began losing her ability to sit up on her own:. Articles from The Mighty.
understandinglu.blogspot.com
Understanding Lu: February 2015
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Our family's journey in living with Rett Syndrome. Thursday, February 26, 2015. February 27, 2012. What do we do to help her? But that was the difference between us and Dr. Coffman; he didn't believe anything was next. I guess he essentially believed that he had just called me to break the news to me that my life was ruined, and then to invite us out for an appointment where he would provide details on exactly how it was ruined. Screw you Dr. Coffman. Screw you. What will the next three years bring?
understandinglu.blogspot.com
Understanding Lu: October 2014
http://understandinglu.blogspot.com/2014_10_01_archive.html
Our family's journey in living with Rett Syndrome. Saturday, October 18, 2014. 2nd Annual Shaffer Halloween Bash. Lucy has recently become a big fan of Tinkerbell from watching the Tinkerbell movies we borrowed from the library, and when I asked her if she wanted to be Tink for Halloween she enthusiastically nodded yes! I found her this adorable costume at Kid to Kid:. I made a homemade Peter Pan costume and Chad was a homemade pirate:. And all of her sweet friends came to be with her:. Please click here...
understandinglu.blogspot.com
Understanding Lu: April 2015
http://understandinglu.blogspot.com/2015_04_01_archive.html
Our family's journey in living with Rett Syndrome. Sunday, April 19, 2015. She makes statements, asks questions, makes demands, tells us (most of the time) when something is wrong, and can answer questions. She tells people she loves them and greets them and tells them goodbye. And makes requests, all in one day! Before starting this post I looked back through pictures to see what pictures I had of things Lucy has said recently and look what I found:. This was about a painting she had just finished!
understandinglu.blogspot.com
Understanding Lu: Why We Stroll
http://understandinglu.blogspot.com/2015/08/why-we-stroll.html
Our family's journey in living with Rett Syndrome. Wednesday, August 12, 2015. The annual Pennsylvania Strollathon is coming up on September 5th this year! It's being held in Pittsburgh again at the nice park we strolled in last year, while enjoying views of the river. The 2014 event raised over $10,000! Newron and breathing drug. New discovery about the X Chromosome. Neuren and Orphan Drug Status. What if she could pick her own tomatoes, all by herself? Or walk without anyone's help? Lucy May age 4.
understandinglu.blogspot.com
Understanding Lu: For the birthday girl
http://understandinglu.blogspot.com/2015/05/for-birthday-girl.html
Our family's journey in living with Rett Syndrome. Tuesday, May 19, 2015. For the birthday girl. Today marks five years of life for Lucille May Shaffer. I can't even believe it! She was so happy! We put her tomatoes in big pots on the ground and then we took a trip to the greenhouse yesterday to buy some flowers for her garden also. Her birthday party was also loosely garden "themed":. All of the kids got to plant a marigold and take it with them. Here is a picture of the party girl:. Even though I worry...
