Love For Ashley

Ashley's MRI results are in...and it looks good. In fact, nothing has changed from her previous MRI that was done last year. It means that she still has three cysts on her liver, but her liver is kicking some BA butt. That's biliary atresia butt for those of you who don't know what BA stands for. Ashley is kickin' butt and living life to tell about it! This week Ashley is attending a Summer Dance Intensive Camp from 8 to 5 this week. She loves attending dance camps and if I could afford it I would send her to a dance camp every week. Ashley doesn't understand why dance classes can't be all year. Sometime tomorrow I am going to sneak in some of her classes to take some pictures of my dancing queen. Ashley's kickin' butt and dancing to tell about it! Speaking of dancing queen, Ashley watched Mamma Mia last week and just had to have the Mamma Mia sound track. While we were in Gainesville for her MRI, we stopped at Target and bought the soundtrack and listen

According to the radiologist that looked over Ashley's MRI slides "there are some changes in her liver." He didn't say what the changes are or if the news is good or bad. All he said was that Dr. A. would call us with the results next week. I am assumming that the changes are not dramatic because they allowed us to go home. My guesses: a) Her three liver cysts have all disappeared. That would be very good news! b) Her three liver cysts have grown. That would not be good news because the potential for cancer would exist. c) The three liver cysts now has friends (more cysts found). This would not be good either because it means she has more cirrhosis. Or maybe I am way off base with all my guesses. The only thing I know for sure is Ashley's liver disease is a guessing game for all involved. She has never been a textbook case and the longer she lives with her original liver, the more guessing we find ourselves doing. Ashley did get sick off the IV contrast.

On Friday, Ashley and I will travel to Gainesville, Florida so that she can have an MRI at Shands hospital. Remarkably, I am not worried about the MRI or its findings. Ashley has been doing so well lately that I don't expect them to find anything different or abnormal. I do expect things to be the same; her three liver cysts will be unchanged, her liver will be slightly scarred with cirrhosis and her spleen will be large but not larger and the blood flow in the portal vein will be normal. The calmness that I feel about this procedure is kind of eery. I tend to worry before all of Ashley's medical procedures, this time I have no butterflies, no fear, and no anxiety. I am not sure why and that scares me a little. Ashley has not taken any of the medication for GERD (Gastrointestinal Reflux Disorder) in months and she seems to be doing fine. She is still taking her liver medications but not so religiously as we have in the past. For example, we use to give her meds at the exact sam

Since Ashley has been doing so well we have not done any fundraisers since Christmas last year. However, the cookbook fundraiser is ongoing. Since we have asked people not to donate to Ashley's Liver Transplant Fund with the American Liver Foundation, we have not received any donations. As much as we would like to continue to raise money to cover Ashley's current and future medical expenses, we just don't have a beneficial fund set up for Ashley as of right now. But much to my surprise someone donated to Ashley early this month and I was not even aware. It has been months since I checked the PayPal account so tonight I logged onto the account and discovered that on June 1 E. O'Brien from Spring Hill, Florida donated $25 to Ashley's Fund. Thank you E. O'Brien, whoever you are, your gift will help pay for Ashley's trip to Shands Hospital on June 26. Ashley Thanks You! If you would like to help Ashley with her medical expenses, you too can donate through Pay

Yesterday I was watching Ashley in her dance class and noticed she was looking at little pale. She also had these dark circles under her eyes. I asked if she felt okay and she of course said yes but was a little tired. I asked if she wanted to go home and of course she didn't; nothing keeps my girl away from dance. My guess is that Ashley's platelet count is really low. There are two things I notice with Ashley when her platelet count is low 1)she starts looking pale and 2)she gets sleepy. Ashley has an olive complexion so recognizing lighter skin on her is easy. This past Sunday Ashley slept until 11:30 am and she went to bed at 10 pm Saturday night. This week Ashley has been going to bed at her regular time and sleeping in well past 10 am. Platelet Equation: pale skin + sleepiness = low platelet count Ashley goes to Shands on June 26 for an MRI. I think we will get labs drawn next week to see how Ashley's liver is doing and to see how her spleen in handling all of the ext

Below is a direct quote from Ashley's dance teacher about the picture above, I sent her the picture in an email. "WOW!!!!!!!!!!!!!!!!!!!!!!!!!!! This is the moment that I KNOW I did the right thing because I don't ever want her talent and love of dance to be questioned. I know that every child develops control at different ages, but give her a chance to do that and "LOOK OUT WORLD"! Thank you so much for sending this to me!" from Gaymarie Tomlinson 6/7/2009 I cried as I read this, Ashley did too. It so nice to have validation to Ashley's dance talent. I mean I know she is a good dancer but to hear it from someone I love and respect; someone who has been teaching my daughter dance for 4 years...this is priceless! Thank you Gaymarie! Ashley and I love and respect you immensely.