The Johansen's and The Deery's

Today I received permission to share the pictures below from last week. The pictures are from the two days the kids spent at some friends house during Tropical Storm Fay. We met the Deery's at the dance studio and although we have both been part of the Studio for years, it took this summer for a friendship to develop. Brad, Ashley, Caroline and Katherine have enjoyed spending time this summer getting to know each other and developing what I hope is a long term friendship. I, of course, have enjoyed developing my own friendship with Laura, Kat and Caroline's mom.

Ashley and Caroline playing Connect Four

Ashley, Brad and Kat playing Twister. Notice Brad in the best position. Caroline is on the couch acting as the official spinner.

The gang playing Apples to Apples, I have no clue what that game is but the kids had fun playing it together.

Brad and Ashley getting ready to eat pizza...yummy!

Caroline and Brad playing chess while watching the movie, Notebook. See kids can multi-task.

Kat playing with her dog, Mr. Bean

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Living through Dance

In just about six weeks Ashley will dance, not just any dance; she will be competing in a big regional dance competition by dancing her very first solo. It's completely amazing, seeing Ashley dance, watching her live through dance. When Ashley was born almost 11 1/2 years ago, I never ever thought, we never thought Ashley would live to dance much else do her first solo. I can't believe I am crying as I type this. I didn't think I would get emotional. It's just amazing! When I put her in dance at age 3, I did it because I knew I needed to stop sheltering her. She needed to be around other children. She needed to feel normal despite what is trying to zap the life out of her; despite her disease. Honestly I never thought Ashley would be a good dancer or even a great dancer, I just knew dancing was safe; it was the one activity the doctors felt didn't put Ashley's life at risk. Little did I know how much dancing did and still d...

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Answers lead to more Questions

In great Ashley fashion, she did very well with her trip to the hospital and recovered well from the procedure. Right now, Ashley is off with her Grammie getting spoiled by shopping. With no one in the house but me and the pets, I am off to my own devices which usually means I have to much time to think, to research, to worry, to vent, to hope and to pray. Today Ashley had a broncioscope to find out why she has been coughing for six months. After getting up at 4:30 am and at the hospital at 6 am, the scope began at approximately 7:30 am. The procedure itself took less than 30 minutes. The outcome of the procedure left me with more questions than answers. We do know why Ashley is coughing, Ashley has a vocal cord dysfunction, enlarged adnenoids and tonsils. Finding out why Ashley is coughing is good news, however, we also learned that Ashley may have other issues involving her lungs. There was 60mL of fluid in her lungs. Some samples of her lungs were sent for a cell count, bacterial cu...

Love For Ashley

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