I am afraid of the ocean!

We spent the 4th of July weekend at the beach. It was the first time away from home as a family, just the four of us, since 2003. It was so much fun with beautiful Florida weather. Watching the kids play in the ocean was a moment I won't forget. Even little miss "I am afraid of the ocean" Ashley had fun.

We love the beach, someday, maybe just maybe we will find the time and funds to allow us spend an entire week on the beach.

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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...

ALF vs COTA - Loosing Sleep

What would keep a person up past 3:30 am? Decisions... As most of you know we have been using ALF (American Liver Foundation) for Ashley's Liver Transplant Fund. However, in the past year, we have found that ALF is not offering us what we need among a few other reasons which I will not blog about. When we opened Ashley's account with ALF we did so quickly after the death of my dad during Christmas 2006 and New Year 2007, we did not have time to research the best fundraising organizations. There are so many organizations out there from ALF , COTA , NTAF . But because of my dad's untimely death and because his dying wish was that friends, family, etc. donate to Ashley to help defray our medical costs, the first organization that came to mind was the American Liver Foundation. After all, Ashley does have a liver disease. Now, both my husband and I are wondering if we should have used COTA. We have also thought and inquired about opening up a local trust fund for Ashley. Howeve...

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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