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.
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 listened to it on our two hour drive home; over and over again. This girl (and Ashley) now knows all the words to every ABBA song on the sound track.
Ashley's kickin' butt and singing to tell about it!
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. We went to TGI Friday's after her MRI something that has become a tradition when Ashley goes to Shands Hospital. (I need to buy stock in Friday's or get a job there because we eat there often). We always stop and have lunch or dinner at the Friday's on Archer Drive. (Ashley loves Friday's Spinach dip). Ashley had a burger but unfortunately couldn't keep it down. After our two hour drive home, we got home about 6 pm, she had dry Mini Wheats for dinner. So far so good, she seems to be holding that down.
For now the news is good.
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 same time every day and with meals now she gets it sometime during the day, twice a day and she seems to be doing fine.
Ashley has never done this well in the almost 11 years since her diagnosis of liver disease. This is the healthiest she has ever been. We aren't going to the pediatrician every week, she is staying well for the most part. Her headaches have disappeared, she no longer complains of belly pain and she is happy. Could it be that, maybe just maybe, Ashley is getting better? Is it possible that her liver disease can go away? Or maybe it's just "in remission" right now and will rear its ugly head later.
Lord, I pray that I am not jinxing things; I tend to do that a lot. Oh no...there goes the sense of calmness. Hmm...I think I will call Ashley's liver doctor tomorrow to have labs drawn too. Maybe normal labs and a normal MRI will bring that calmness back into focus.
Is this the calm before the storm?
Ashley Thanks You!
If you would like to help Ashley with her medical expenses, you too can donate through PayPal using the link at the top of this post/blog.
If I knew how to make this blog a three column blog I would list all of Ashley's donors names on this blog. Ashley's donors deserve recognition, they deserve to have a special place on her blog. Maybe I will be surprised again and someone will help me create a three column blog or even better; a blog with a navigation menu.
Much to my surprise 2009 is turning out to be a good year for Ashley's health, for Ashley's mom and dad; we pray that it continues to surprise us.
