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Showing posts from April, 2008

1988 vs 1998 - A Scar Comparison

You've heard me talk about Fiona on this blog before. Fiona saw Ashley's dance competition pictures that I posted here not to long ago. Today she commented on how much better Ashley's Kasai scar looked compared to her Kasai scar. I thought it was interesting how different their scars looked. Ashley's Scar - Created in 1998 Fiona's Scar - Created in 1988

A Defiant Mother

About a month ago we took Ashley to the pediatrician to receive some immunization shots. As the doctor was examining Ashley he noticed some bruising he did not like and gave us a script to have labs drawn. We know that Ashley has low platelets so the bruising is expected. However, I have yet to take her to get her labs drawn. As I stated before we know that Ashley's platelet count is low; they have been fluctuating between 80,000 and 100,000. Actually, her latest platelet count was 119,000 (normal is from 150,000 to 450,000). If we draw labs, and her platelet count is low, what are we going to do about it? The answer is nothing, there is nothing that can be done medically to change her platelet count. The doctors have already said that her platelet count is not low enough to require a platelet transfusion or vitamin K injections. Am I terrible for not following doctors orders; for not having labs drawn on Ashley? As a mother of a child with a chronic illness, I know I should

Life in the Slow Lane

For nine and half years we have been living in a fast lane with no slowing down in sight. Thank goodness our fast lane allowed us to carpool with people we love. Carpooling made our travel in the fast lane a little more bearable. Lately, our life seems to be moving into the slow lane. This pace is more our style but I have to admit it's hard to get use too. Ashley has been doing so well over the last month and half. We have not received any calls from the school nurse about Ashley running a fever, having a tummy ache or a head ache. We haven't been to see a doctor since her last visit to Shands at the end of February. However, we did see her pediatrician for immunizations last month. I think maybe our little lion (biliary atresia) is sleeping. Personally, I hope and pray that the lion sleeps for a very long time!

Organ Donation: Myths and Facts

In my experience talking to people about organ donation, trying to convince them to become donors, I have learned that many are not organ donors because of their lack of knowledge. Many people do not take the time to become educated; to learn more about the organ donation process. With over 98,000 people on the National Waiting List it is important that each and everyone of us take the time to get educated. On the Love for Ashley blog, I will highlight some of the more common myths and facts on organ donation and I will share with you important online resouces for organ donation. Myth 1 Doctors will not do everything possible to save my life if they find out I am an organ/tissue donor. Fact Donation can only occur when a patient is declared brain dead. Brain death is declared by a separate team of doctors who are not affliated with the organ donor recovery team. Myth 2 My family will be responsible for the medical bills associated with organ donation. Fact A family of an organ/ti

My Friend, My Prayers, My Hope

My friend needs our prayers. My friend's daughter needs our prayers more. My hope is that all of you will get down on your knees right now and pray to our Lord like you have never prayed before. The power of prayer is amazing, we need to go to the Lord in prayer NOW. Fiona's needs a new liver and she needs one now. Please pray for the doctors that are caring for her, for the team that decides whether or not to list her for a liver transplant and for a family somewhere out there to say yes to organ donation. Pray that Fiona's gets her new liver, it is PERFECT and comes just in time! You can read more about Fiona on her blog, In My Shoes . Just a little background on Fiona and her mom, Peggy. Peggy and I met about 8 years ago on our online support group, Children's Liver Association for Support Services (C.L.A.S.S.) . Fiona and Ashley have the same liver disease. Not only do they have the same disease but they were both born with a choledochal cyst . Both girls have liver

An Amazing Story on Organ Donation

I am copying this story from Confessions of a CF Husband . Nathan's wife Tricia sufferred from Cystic Fibrosis for years. She recently gave birth to their first child, Gwyneth. About two weeks ago Tricia received a double lung transplant and is doing pretty well. Below are links to two stories that became one due to the gift of organ donation. Please click on the first link, watch the video and read the story then click the second link. Watch This First Watch This Second As you read these stories, please pray for the donor family as they grieve the loss of their two young boys. These two stories are truly what organ donation is about.

Dance Competiton Pictures

Another reason why YOU should be can organ donor; so that Ashley can keep on dancing!

Cookbook Update

You guys have been so patient and I promise the end is near. You will soon have your very own Love for Ashley cookbook. The graphics and the cover have been designed and complete. I am still entering more recipes, people keep sending me more to be included. Since I am entering more recipes, you can still submit more too. The deadline is April 15. With this deadline we will have the cookbook proofed and off to the printer before Mother's Day. That means you will have your Love for Ashley cookbook for Mother's Day. Here is the information you need to add a recipe to Ashley's cookbook: Website: http://www.typensave.com Contributor: Here you type in your Name Group Log In: Love4Ashley Password: helpashley Thanks for your support.

April Fools - No Foolin' Around

Yesterday was April Fools Day, it was also the first day of Organ Donor Awareness month. Organ donation is no joke, it's not a laughing matter. When you are one of the over 100,000 people waiting for a new organ, organ donation is a very serious matter. The statistics regarding those waiting for the gift of life and those who actually donate is a national crisis that needs to be taken serious. At the end of 2007, 28,354 received a new liver, heart, kidney(s), pancreas, lung(s) or intestine. However, only 14,395 people were organ donors. Considering there was a total of over 96,000 people on the National Waiting List at the end of 2007, fourteen thousand donors is just a small drop in the bucket. Being an organ donor is the most selfless act one can do for another human being. Being an organ donor means that you have the potential to save the lives of 8 people. As an organ donor, you are leaving a lasting legacy of your love for others. There are so many people depending on you to s