Love For Ashley

I know I don't have a big readership on this blog; my readers may be small but they are big in heart. I am asking all my readers to pray for some special people. Please pray for Aiden and his family. I have talked about Aiden before on this blog, so his story should not be new to my readers here. However, to give a quick background on Aiden; he is a cute little guy who received a liver transplant as a baby due to the same disease that is attacking Ashley. Although, Aiden's transplant was a success he has been diagnosed with another rare disease called Dysautonomia. Right now, Aiden and his family are miles from their home in Ohio from St. Petersburg, Florida trying to find medical treatment for Aiden. Right now, Aiden's family is not having a good day. Aiden's daddy is sick; throwing up and just feeling like crud. No one likes to be sick miles from home, but a parent especially doesn't like to be sick when you are trying to take care of some very special little peop...

Not the topic of choice for the blog but it is what we are dealing with now. However, we think the blood in her stool is from constipation and not related to her liver disease. Since we think the cause is constipation we increased her dose of Miralax and made her drink that nasty concoction in 5 minutes. We are hoping that increasing her dose of Miralax plus forcing her to drink more fluids will clean out her system. Only time well tell. Ashley is not one to drink, although she loves chocolate milk; not exactly the drink of choice when you are constipated. She loves food and would rather eat than drink. But her lack of love for fluids; I think, is causing her constant constipation. If anyone has any ideas on how to get Ashley to drink anything but chocolate milk and sodas, please let me know. I am on the verge of sticking an IV in her arm or maybe I can purchase one of those drink hats. Of course, we would need to replace those Coke cans with bottles of water. Maybe Ashley would drink ...

On Tuesday, March 31 the Pampered Chef Fundraiser for Ashley comes to an end. You have until midnight on Tuesday to place your order. If you need something unique and of good quality for your kitchen, please order from Pampered Chef. A portion of your total purchase will be given to Ashley's Medical and Liver Transplant Fund. To place your order, click here http://www.pamperedchef.biz/jamieearly?page=host-search-results&showId=1978042 Thank you for your support. Laurie, Ashley's proud Mom!

A few days ago Ashley came home from school and was organizing the kitchen table to prepare for homework. As she was removing supplies, books, etc. from her backpack she began to cry. Ashley came home from school complaining of not feeling good so I just thought maybe her head was hurting. I asked her if she was feeling sick and she said no. Then the tears started to fall harder. Me: Ashley why are you crying? Ashley: I don't know. (Crying even harder as she placed her math book on the table). Me : Does your head hurt? Ashley: No, I don't know why I am crying. (Crying with gasp between breaths). Then it finally hit me, I know exactly why Ashley was crying. She was experiencing another sign of puberty . Me: (Trying not to laugh as Ashley keeps repeating). Ashley: Mommy, I don't know why I am crying, why am I crying. Mommy, what's wrong with me? Just as quickly as Ashley started crying, she stopped. Then I knew it was time to tell her why she was crying. I explained ...

This is Ashley's new favorite song; she has been talking about it for weeks. She has been asking me to see the video so this morning I decided to check it out on YouTube. I could not stop crying while watching this video and hearing the words sung by Miley Cyrus. This song is a perfect song for Ashley, it tells her story. This song is now Ashley's new theme song. There are so many mountains Ashley has left to climb but she WILL move those mountains one at a time! Ashley said that this song would be a perfect song for her first dance solo. Could it happen? Do we dare dream? The lyrics: I can almost see it That dream I’m dreaming but There’s a voice inside my head sayin, You’ll never reach it, Every step I’m taking, Every move I make feels Lost with no direction My faith is shaking but I Got to keep trying Got to keep my head held high There’s always going to be another mountain I’m always going to want to make it move Always going to be an uphill battle, Sometimes you going to h...

What would happen if I decided not to give Ashley any of her medications? Would she get sicker, would she stay the same? What would happen if I threw caution to the wind and let Ashley do a round off back hand spring off the balance beam? If I let Ashley ride a horse, what would happen? What would happen if we didn't take Ashley to the liver clinic four times a year? What would happen if just one time Ashley didn't see any doctors for an entire year? What would happen if Ashley didn't have labs drawn "to many times to count" each year? Would Ashley forget what it's like to be a pin cushion? What would happen if I believed what the doctors say about Ashley, about biliary atresia? Would Ashley be doing as well as she is if I fully believed in medicine? What would happen if 11 years ago I did not want to know the sex of my baby? Would they have been able to save her? Would the choledochal cyst been found and would biliary atresia been diagnosed on time? What woul...