"For you formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them." - Psalm 139:13-16
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9.10.2007

Rylee's Room Makeover


Rylee enjoying her new big girl bed. She looks like that story, "The Princess and the Pea." She loves laying on her side to watch her Oggz. Usually it puts her right to sleep!
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9.08.2007

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9.07.2007

Show and Tell

What an eventful day! Ryann's teacher scheduled 'Show and Tell' for today...and told the kiddos to bring in something exciting. So at 1:30 today in we strolled...me, the video camera, the digital camera, the bookbag, wheelchair, and Rylee.
Ryann stood up front-it's difficult to hear the video-and told the kids about Rylee. She told them what she couldn't do but quickly followed up with saying, "but we don't care because we love her just the way she is." The kids enjoyed hearing about how she snorts like a piggy when she's hungry! Ryann told the kids how special her sister is and then informed the students they could ask her momma questions. I joined the girls up front (after wiping away a few proud tears) and answered the questions as simply as I could. A child's ability to adapt and adjust to new things still amazes me. Many times we've found young children ask better questions and are more polite than than the adults.
I took in a book to read about differences, and handed out our NKH fundraiser bracelets. Each bracelet had Rylee's site attached to it. Hopefully the parents will check it out and gain a better understanding of what we go through daily...and they will use this as a way to teach their children about differences. Our theme was 'Everyone is different. Your differences are what make YOU special.'
I'm attaching video from the day and photos of Ryann's class with Rylee. I thought that Conner, Grace, Maggie, and Katie would enjoy hearing the story we read...since their siblings also have NKH. I know I'm not "Reading Rainbow" material, but the kids got a kick out of it!
As always, thanks for checking in-and don't forget you can still leave us comments-we love hearing from each of you!
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9.06.2007

Welcome!

Welcome all RyleeBug groupies! Due to the demand of her adoring public, we are constantly striving to overachieve in our updating capabilities. I know everyone is used to the caringbridge sites...and we have enjoyed posting there...but her "new and improved" site offers more photo viewing options and video capturing.
We hope that everyone will add this new web address to their "Favorites" tab, and check-in often.
If her fan club continues to grow-we may have to make t-shirts! Any ideas? "Please don't stare, I already get enough therapy." What about, "Not defined by a diagnosis." Yeah-I'll get to work on that one!
Thanks again for sticking with us and always keeping us in your thoughts, hearts, and prayers.Aaron, Deb, Ryann, and RyleeBug
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"For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee, for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book they were all written, the days that were ordained for me, when as yet there was not one of them."

Psalm 139:13-16