Love For Ashley

A local newspaper writer found Ashley's website searching for something on Google. She contacted us and asked if she could run a story about Ashley and our fundraising efforts. The only error in the article is our fundraising goal amount; the article says that we are hoping to raise $750,000 but our goal is only $75,000. Raising $750,000 would be more then an answered prayer; it would cover Ashley's medical care for the rest of her life. Below is the link the article: http://www.seminolevoice.com/Seminole_Voice/article.asp?ID=1109 Thank you Amy for writing the article and thank you to The Voice for putting Ashley's story on the front page.

You know what's worse then having a child with liver disease? Having a child with liver disease who is sick. I know Ashley has a liver disease but when Ashley is sick I don't know if it's because of her liver disease or because she is "normal" sick. The problem with Ashley is when she is sick she doesn't normally run a fever, she is also hard to diagnose and treat. You can't just say to a child with liver disease who is complaining of a headache,"here take this Tylenol and you will feel better in a few hours. " Treating a child with liver disease who is sick is not easy. Imagine if Ashley was running a high fever. For parents of "normal" children you can give them Tylenol or Motrin to bring the fever down. As a parent of a child with liver disease, I can only hope that a tepid bath will help comfort Ashley. Yes, we can give Ashley Motrin but only when a tepid bath does not help and only if Ashley's platelet count is above 80,000. Ty...

No, not my kids. On Tuesday, I experienced sharp excruciating pain in my back, went to the doctors thinking it might be a kidney infection. Test results where inconclusive so they prescribed me antibiotics, gave me a shot of penicillin in the tush and also prescribe some pain killers. The doctor felt it was either a kidney infection or kidney stones. The pain killers the doctor prescribed put me fast asleep for almost two days. Today I am feeling better and able to move around with very little pain. Hopefully, this means the end is near. Tomorrow, the kids are out of school and since the pain killers can knock me out cold, I will be off the pain killers all day tomorrow. Let's hope I can manage the pain without medication. If anyone has had kidney stones, they know that when they pass, the pain is worse then giving birth. Believe me, I gave birth to an 11 pound baby boy, I'd rather deliver him again then deliver a kidney stone!

Today a reporter from The Voice interviewed me about Ashley and our fundraising efforts. A photographer will be meeting with us later in the week to take pictures of our family. I wish I could say the interview went well but I was in severe back pain so I was not completely focused on the interview. I am sure that the interviewer was not aware of the pain I was experiencing, I was doing my best to grin and bear it. The article should be published sometime around Halloween. I will post a link to the article here.

Sometimes it's good to be busy; it keeps your mind off of things that can drive you crazy. Brads weekend baseball schedule and the Red Sox/Rays game have helped keep my mind off what might be going on with Ashley. Lately, Ashley has been looking a little pale, sleeping more than usual and her appetite isn't what it should be or what it has been in the past. She is still complaining of tummy pains, headaches and a sore throat. These complaints have been going on for a few weeks if not a months. She has more bruises on her body and in some strange places; places one would not normally see bruises. What does this tell me? The easy answer is Ashley's platelet count is lower; probably under 100K. Her platelet count being low is pretty obvious with the bruising and the pale look. However, the tummy pain, the headaches and a sore throat remain a mystery not only to me but to her doctors too. Her labs don't tell us anything except that her platelet count and white blood cell co...

Annika turned 8 years old today but her birthday celebration has been postponed. On October 8, little Anni received her third liver transplant. She received her first liver transplant at 12 months old because of biliary atresia . She received her second liver transplant just 3 months after that. Today, Anni is spending her birthday in an ICU room in a Chicago hospital. Her third liver transplant has not been without setbacks. Annika required 24 units of blood just a few days after her transplant and one of Anni's lungs collapsed. Today, according to Anni's mom, Moreena , Annika is doing better. She still has a long way to go. A lot of people have been following Annika's story on her mom's blog, Falling Down is also a Gift ." You can follow her story too. Moreena is a gifted writer, I promise your visit to her blog will be worth it. Please thank all three of little Anni's donor families without whom Anni would not be able to experience life as a bi...

We would like to thank Kathleen Brockman and Janet Durgin at Studio 5D for selling Ashley's cookbooks to their friends, family and coworkers. Kathleen Brockman's son's play Hockey, she took the cookbooks to their Hockey Tournament last weekend. She sold cookbooks to people we have never met but found it in their hearts to give a little to save the life of a little girl they have never met. A special thank you to Janet Durgin's son for taking Ashley's cookbooks to his place of employment; to people we have never met, to tell Ashley's story and to help us raise money for her medical care. To the people who purchased cookbooks from Janet or Kathleen, thank you. To those of you who didn't purchase a cookbook but gave money to our cause, a special thank you. If you are reading this blog, please leave me a note, Ashley would love to send you a more personalized thank you card. Thank You and God's Blessings.

Edema: A build up of fluid in the legs . So far Ashley doesn't have Edema. Fatigue : Ashley does complain of being sleepy more often then not but we attribute it more to her active dance schedule and not her liver disease. Ashley does require more sleep then most 10 year olds . Jaundice: Yellowing of the skin and eyes. Ashley is not jaundice but this is something we continue to watch as she has been severely jaundice in the past. Epistaxis : Profuse nose bleeds. Ashley has never had a nose bleed. Reddness of Palms: At Ashley's list visit to Shands Liver Clinic in August, it was noted that Ashley's palms are red. Spider Angiomas (Spider veins): Small red spots and tiny lines on the skin. Ashley does have a few spider veins on her face and on her stomach. Portal Hypertension: This is caused when scar tissue blocks the proper flow of blood from the intestines through the liver, leading to increased pressure in the veins. Ashley has had Portal Hypertension since her diagn...

Neighbors use festive lighting for Halloween and Christmas to raise money for Ashley, Alafaya Woods Subdivision, Oviedo, Florida at 1021 Cox Court. For more information and directions to the light display, please visit http://www.ourfundraisers.blogpsot.com .

Today Ashley handed me her school progress report. Normally, Ashley is nervous when receiving her grades, she assumed this time she would have lots of B's. However, Ashley has straight A's. I don't think Ashley has ever made an A in math, not on her report card or a progress report. She is so proud of herself, she has worked so hard. I prayerfully hope that Ashley can maintain those A's until the end of the quarter. I am so proud of Ashley, I knew she could do it!