Ashley's Journal

Click on the journal title below to read specific journal entries. They are listed from most recent to the very first entry made on February 27, 2007.

Today Ashley and I are off to visit yet another doctor (an Ear Nose and Throat Specialist) about her cough of 3 months. Hopefully, this time we will get answers as to why she has a cough and why she her body temperature is at 99.9 degrees. Last week Ashley saw an allergist to see if maybe the cough was caused by allergies. The results of the allergy tests showed that she has no allergies-at least not yet. The allergist also determined that she does not have asthma. There is still a possibility that Ashley may have reflux but that is highly unlikely; both her pediatrician and her GI doc don't think she has reflux. My husband were talking this morning about Ashley's tonsils. Back when Ashley was 5 she had tubes placed in her ears and her adenoids removed due to very frequent and severe ear infections. During this surgery, the ENT discovered that Ashley's tonsils were larger than he first thought. If I remember correctly he even said he probably should have removed them at that time but for whatever reason he choose not to remove them. So maybe Ashley needs to have a tonsillectomy and her cough will be gone forever.

Of course, the idea of Ashley having any type of surgery scare the beejeepers out of me. For one, she has a low platelet count and could potentially bleed out. Second, I have known two children die after they had a tonsillectomy. There was even a 16 year old who died in his sleep after having his wisdom teeth pulled and this kid was a healthy football player! I am not sure how I would feel if the doctor told me that Ashley needs surgery to remove her tonsils. Do I put her through a major surgery (to some it's routine but for a liver patient it is not routine) just because she has an annoying cough? What would you do if it were your child? How would you handle it?

Our appointment is at 10:30 a.m. and right now it's 9:00. We will be leaving home in about 30 minutes to travel to her doctors office which is clear across town on the other side of Orlando close to the Florida Turnpike. I know I could have found a doc closer but we know this doctor and he knows Ashley's history so I am willing to travel to ensure Ashley has the best care. As soon as we return sometime later today, I will post an update.

Update: Ashley's appointment with the ENT went...well..okay. Still know real answer on her cough but we are going to try a steroid inhaler for a few weeks to see if that works. If the inhaler doesn't seem to stop her cough then we will try an anti-reflux medication. However, we don't believe this is reflux because Ashley does not cough at night; people with reflux often cough more at night. If that doesn't work then we are off to see a pulmonologist. Her ENT believes like the other docs that this is not a typical cough and may be hard to treat and diagnose. Leave it to Ashley to come up with a mystery illness. ARGH!

Correction: In the second paragraph below I stated that we have spent $1800 in out-of-pocket medical expenses, that amount is incorrect. After organizing our files, I noted that we have spent approximately $3200 in out-of-pocket medical expenses since January 2007.

Paying bills is always such a chore, it is not something I look forward to doing every couple of weeks. Paying bills makes me overwhelmed, and stressed. It seems there is never enough money to go around. Of course we all know how that feels, living paycheck to paycheck. Well, maybe there are a few of us who have the luxury of not worrying about what bill to pay first. Do we pay all of the power bill or do we save some money so that we can buy groceries? Can I pay the minimum balance on my credit card so that I can get new tires for the van? Sometimes I wish that having "things" wasn't so important to our daily lives. What I hate the most is saying no to the Brad and Ashley about something they want because we have another medical bill to pay.

Speaking of medical bills, we just received the latest Blue Cross/Blue Shield Explanation of Benefits. We have paid, out-of-pocket, over $1800.00 on Ashley's medical bills since January. It doesn't seem like much really but we still have four more months to go and Ashley has several more doctors appointments and procedures lined up for this year. What bothers me is that even though $1800 isn't much, we could have used that money to purchase a new A/C unit therefore saving money on our power bills each month. And that $1800 doesn't include my medical needs, Brad's needs or Joey's. It doesn't include prescriptions for Ashley or the rest of us. I take meds for high blood pressure (wonder why) and allergies. Brad takes medicine for his severe environmental allergies and Joey also has a med for skin allergies. And none of the money includes our eye appointments, contacts, etc. I keep waiting for Lasix surgery prices to go down to where we can afford to have that surgery and ultimately safe money on contacts and eye exams. I remember a few years ago, I sat down and added up our out-of-pocket expenses during Ashley's first two or three years of life, when she was at her sickest and clinging to life. We were so worried about her health at that time that we didn't even miss the close to $30,000 in expenses. No wonder we haven't been able to save much money lately, we are still trying to recover from Ashley's first few years.

Did you know that there have been more strangers donating to Ashley transplant fund then family and friends? We have had about 45 people donate to Ashley's transplant fund since it started in January and 31 have been total strangers. To those strangers I say thank you from the bottom of my heart; I am humbled by your generosity. Your donations will help save my daughters life, by contributing to the transplant fund, you are helping remove one huge burden from our lives....THANK YOU!

I have decided to give people that want to donate, options on how they want to donate. For those who want to contribute to Ashley's transplant fund, please send a check to the American Liver Foundation with Ashley's name in the memo section of the check (see the fundraising page for the mailing address). And for those who want to contribute to Ashley's current medical needs, please use the Paypal link found on the fundraising page of this website. The Paypal donations will go directly into a local bank account set up especially for Ashley's current medical needs. Keep in mind however that donating through the Paypal link is not a tax write-off. Several people have asked if they could do a direct donation to our family. At first I was not comfortable with the idea of direct donations but I have found that there are some people uncomfortable giving to an organization. Most people want to know that their donation is going to be placed in the right hands and not used to make a CEO/Founder of some nonprofit wealthy. By donating through Paypal, you will not only help us pay Ashley's current medical bills, but you will be helping us pay for gas to and from Gainesville, Florida (a two hour drive one way and the location of Ashley's transplant team) and help pay for hotel costs while we are in Gainesville. Any way you decide to donate will directly benefit Ashley in some way and we are very grateful.

Next week, Ashley goes to see an ENT for a cough won't go away. The cough she has sounds like she is trying to clear her throat but there is nothing there; nothing is coming out. This cough has been going on for just about 3 months. Her pediatrician has ruled out reflux, strep throat and varied other things. I took her to see an allergist this week hoping that the reason for the cough was allergies but no allergies were discovered. And she doesn't have asthma. She coughs all day long, at rest and at play. However, she doesn't seem to cough at night as far as we can tell. My fear is that she has a esophageal varice that is irritating her and making her cough. If a varice is suspected then she will need to have a upper and lower GI scope to determine the severity of the varice. We know according to Ashley's MRI results that she does have some varices on her stomach. Ashley's GI did not want to do a scope this year even though it's been two years since her last scope. Maybe the ENT will discover the reason for the cough and if he suspects varices then maybe he will order a scope. Pray that we find out what is causing Ashley's cough and that it's nothing serious or liver related, nothing that can be handled without surgerical intervention. Ashley is famous for giving us "mystery illnesses" this is just another one of those times. But prayers are helpful so take a moment and pray that an answer will be found.

I will update again after Ashley's ENT appointment on September 7 but for now know that Ashley seems to be doing well. And she loves school, her new teacher, is making new friends at school and with her dance company, God is good, He is very good!

Yesterday, Joey came home from work and began the usual routine of asking Brad and Ashley about their day. Ashley always loves talking to her Daddy, I think it's the highlight of her day. As I was cooking dinner, I overheard the following conversation:

Ashley: "Well, I found out I am not gifted" "Mommy got the results of my test and I am not gifted."

Ashley: "You know Dad, smart like Brad" "I am not gifted like Brad, I am over average (above average)"

Joey: "What do you mean you are not gifted" "I don't need some silly test to tell me you're gifted because you're a gift to me!"

This conversation melted my heart. My husband can sometimes say the sweetest things. And what little girl would not want to hear their Daddy say those words, "You're a gift to me."

Ashley's website was lost in cyberspace for a few days. We had problems with our server; note to self-if it says free it's to good to be true. When Ashley's website was first created ,I was going to use the same hosting company that I use for my business but then someone offered to host Ashley's website for free. And since we are trying to save money for a liver transplant, a free offer sounded great! Free doesn't always mean you are saving money; who knows how many people wanted to donate to Ashley's transplant fund while her website was down. Now that I have it back up using a server that is reliable and is ranked in the top ten of hosting companies, LoveForAshley.com should be around for a long time. Let's see Ashley's website has been down for at least two weeks and a lot has happened. Read on for more.

Ashley and I left for Shands Hospital on August 3 for her lab tests and an MRI (this would be about her 4th MRI in 8 months). I wish I took pictures of Ashley as she was getting her MRI but I left my camera at the hotel. If you have ever had an MRI you know how difficult they are; no food or drink for hours prior, lay perfectly still for an hour or so, listen to loud noises as you inhale and exhale on command. As an adult, I have a hard time laying still for minutes much less an hour or more. However, Ashley is pro, she smiled during the MRI, only wiggled her toes, and she was so patient as the technician blurted out commands over a loud speaker. Even as they stuck an IV in her arm for her Ferritin drip (iron contrast), she still managed to smile and laugh. She makes going to the hospital and watching her go through these tests so much easier for me. It's hard for me, because this is not the life I dreamed of for my little girl. What mom or dad wants a life of needles, MRI's, ultrasounds, medications, blood work and hospitals for their baby. Seeing Ashley's smile and hearing her laugh in spite of it all brings me some peace.

The results of Ashley's test are the same. The MRI results showed no changes in her liver abnormalities; she still has two 2 cm regenerative nodules on the left lobe of her liver and a 4 1/2 cm biliary cyst on the right lobe of her liver. The doctors have concluded/confirmed/agreed that they believe these masses are benign and do not warrant a biopsy right now. They also feel comfortable in waiting to do a upper and lower GI scope on Ashley. The scope is to check on Ashley's varices; to see if they have changed in degree (worse or better). Varices are dilated blood vessels usually in the esophagus or stomach. They cause no symptoms unless they rupture and bleed. Bleeding from varices is a life-threatening complication of portal hypertension. Right now, Ashley's varices appear to be only in her stomach. With her enlarged spleen, portal hypertension and low platelet count, we have a real fear of a life-threatening bleed. Portal hypertension is an increase in the pressure within the portal vein (the vein that carries blood from the digestive organs to the liver). The increase in pressure is caused by a blockage in the blood flow through the liver. Increased pressure in the portal vein causes large veins (varices) to develop across the esophagus and stomach to bypass the blockage. The varices become fragile and can bleed easily. Ashley's labs are pretty much normal. Remarkably her liver enzymes are perfect, it appears her liver is working but we have low platelets and a low white blood counts. As you can see, liver disease is very complicated and very complex at the same time. It's why we have a transplant fund in place for Ashley now, even though it appears that Ashley is doing fine. Sometimes I wish Ashley's liver disease was more black and white and less gray but it's not so all we can do is maintain her life as best we can with what we can and however we can.

If you read my update on July 25, then you know that Ashley auditioned for the dance company at the studio where she has been taking dance for the last three years; Ashley has been dancing since she was 3. You also know that I have been telling her that she can't audition for the company for the last three to four years. And as you now know I finally gave in and let Ashley audition this year. Auditions were held August 10, she was so nervous. First, Ashley had Hip Hop class just before her audition so she was wore out. Once she finished her class, I had to rush her to the bathroom so she could change clothes to get ready for her personal interview with the judges. The interview for Ashley was the toughest part of the audition. She said they asked her three questions; and Ashley said that she was surprised at how easy it was to answer them. After her interview, she had to change into her dance wear for the dancing part of the audition. From a window, I was able to watch her dance for her chance to be part of the dance company. I thought she did pretty good, and was impressed with her extensions in her jazz number. She is weak in ballet, not very graceful but not completely loopy. She needs help with her turns as she is too slow and cautious but overall I thought she did pretty good. I have to be honest, I still didn't think she was good enough to be part of the dance company. I left the audition thinking that this was a good trial run for the next time Ashley auditions. Being part of the dance company has been a dream for Ashley since took her first ballet class at three years old. However, Dreams do come true, as of yesterday Ashley is an official member of the 5th Dimension Competitive Dance Company for Studio 5D in Central Florida. She has her first company rehearsal this Friday night and again on Saturday morning. What does this mean for me; only that I am going to be busier than ever hustling Ashley to dance 6 days a week, and Brad to baseball and karate 4 days a week. Call me crazy but I love my kids and I would do anything for them. Plus remembering Ashley's smile; her dimples, when she read the letter that she had made it to be in the dance company makes this craziness all worth it.

On Monday, August 20, Brad and Ashley start school. Brad will be in 6th grade and attending an awesome public middle school that offers classes like pre-engineering, pre-aeronautical and even offers a class in flight simulation. Brad will have a very busy academic life because he will be taking all gifted/advanced placement classes as well as pre-IB classes. He is so excited about taking Alegbra and has listed all the classes mentioned before as possible elective courses for the year. Ashley will be in 4th Grade and will experience FCAT writes for the first time and she will be going on a field trip to St. Augustine to learn about an important part of Florida history. This summer both the kids turned a year older and I feel wonderful being their mom. More to come about the kids first day back at school and mom's first day of peace and quite!

Ashley is going to be tested for allergies next week. Everyone in the family has severe or high allergies to something. Brad is highly allergic to most things environmental-grass, dirt, trees, tobacco, pecans, you name it if it's green or brown he is allergic to it. (And he is a baseball player, he is allergic to everything on the field). I am allergic to most of the same things as Brad but I am also highly allergic to cats (yes we have a cat). Joey, is allergic penicillin, apples and he has very sensitive skin, we still don't know what is causing his skin breakouts. Given that we all seem to exhibit allergies there is 100% chance that Ashley has allergies too. Ashley has had a dry cough for the last two months and a temperature of 99.9 so we think just maybe the cough and low temp are triggered by allergies. If the allergy meds don't solve the problem of Ashley's cough or temp then we will be seeing an ENT and/or a pulmonologist. Look for more news on that later.

Please continue to pray for my family. My Dad's birthday was yesterday, it was hard not calling him to wish him a happy birthday. I am still struggling with his death, not his death so much but dealing with not having him here with me. My Dad was my rock, he was my foundation, he was my Pop and I miss him dearly. Yesterday, I called my mom, my sister's Terri and Renee and with each conversation, I cried. These are the times when I wish my phone had 3 way calling or conference call capabilities, we need each other more now than ever before. However, I know Dad is looking down and is proud that we are all holding it together. He was our glue in life and he remains are glue after death.

Ashley you have been my every dream come true. It's hard to believe that you are nine years old; nine years of living a miracle. With everything you have gone through and will go through in your life, you deserve the very best birthday ever; a lifetime full of happiness and love. Ashley, I hope that I can show you how much I love you every second of everyday. You mean the world to me, Sweet Girl. Your daddy and I are so proud of you and I don't think there are two parents on earth that can love their daughter as much as we love you! Our hope for you on your birthday is that you always remember the love you feel today. Happy Birthday Sweet Girl!

Today I decided to start making one of Ashley's dreams come true. You may not know it but Ashley has been taking some form of dance since she was 3 years old. I initially started her in dance to introduce her to music, to dance and to help her with her social skills. As a baby Ashley was soothed by the music coming from her Fisher Price tape player. Music was the only thing that calmed her down before, during and after the many medical procedures she endured as an infant. Music was the only thing that helped her fall asleep at night. Music was the only thing that we found not only provided comfort for Ashley but also provided comfort for us too. As Ashley became a toddler, I would often find her dancing in her room or in front of the TV to Disney videos and even to commercials with a catchy tune. If you came to our house during Ashley's bath time you would get the pleasure of hearing Ashley sing in the bathtub. It was only natural that Ashley start taking dance at an early age. Of course, at age 3 her attention span was limited and she was more into making friends then making music or learning a new ballet move. But when she danced, the only way she knew how, she lit up and the smile never left her face. Having Ashley in my life is a dream come true for me. Now it's my turn to make a dream of hers come true.

For the last few years, Ashley has been asking if she could audition for the dance company at her dance school, Studio 5D. The Fifth Dimension Dance Company is an awarding winning dance company that produced a dancer that auditioned for the first season of "So You Think You Can Dance", Leonard Beasley. For the last few years, I have been telling Ashley that she wasn't ready to be part of the dance company, she's not a good technical dancer, she not a graceful dancer, she just doesn't have what it takes to be part of the company and we just don't have the money to pay for the extra classes and the costumes. Each year I disappointed her with my answer but it made her try harder to be a better dancer, work harder on her technique and it fed her desire to be a bigger part of Studio 5D. This year I noticed some improvement in Ashley's technique, still not perfect but better. This year I noticed her falling in love with all forms of dance from Ballet, Jazz, Hip Hop to Country Line Dancing. This year I noticed Ashley choreographing her own dance routines to various genres of music from Country, Rap to Christian. She now listens to the music to find what type of dance best suites the mood of the music. Watching her enjoy dance has brought me some hope for her future. Maybe she won't be on Broadway dancing or a back-up dancer for the next big music artist but she will always be a star in my eyes.

And now my star will be able to audition for the Fifth Dimension Dance Company at Studio 5D. When I gave Ashley the audition application, she said, "What's this?" After she read it, she looked at me with this confused look then I said, "Ashley you are auditioning to be part of the dance company on August 10." She just stared at the paper, and then back up at me and said, "Really?" As I nodded my head yes, she gave me a big hug. So I am on my way to making a dream come true for my daughter.

For your viewing pleasure, dance pictures of Miss Ashley Johansen, a future star of Broadway or So You Think You Can Dance!

Right now, things seem to be going pretty well for us especially Ashley. She is still fighting some kind of illness, she just can't shake it. Her temperature is hovering around 99.9 and now her only symptom is a weird cough. We took her to the pediatrician and as usual we can't find anything wrong with her other than the cough so we will just try some home remedies. We have the humidifier in her room, she is sucking on honey and lemon cough drops and drinking lots of water. Life with liver disease means that Ashley can't take much of the over-the-counter meds, it means we are always wondering if she has a normal childhood illness when she has a fever or is it liver related, it means a life full of mystery. However, it's not all difficult we do have a place on Easy Street right now. We just got a letter from Ashley's liver doc about the next step regarding her regenerative nodules and her cyst. Here is a copy of the letter:

When you return home, please let me know convenient dates to REPEAT the special MRI study of Ashley's liver. Everyone agrees (Andres, Gonzalez, Abbitt -Radiologist and Hemming-Surgeon) that this is the study to complete at this time, prior to any consideration of biopsies, upper endoscopy, other x-rays, etc. The working diagnosis continues to be regenerative nodules involving the left lobe of liver. Of course, the liver cyst (not cysts) will also be carefully analyzed once again (No interest or need, yet, to needle aspirate this cystic area; with recognized respect for the opinion of the other physicians).

I will send you a lab slip re: repeat blood studies, to include liver function tests and serum fetoprotein level. After the blood studies and MRI (with ferrite) are completed, a decision will be made about biopsy of the left liver lobe and drainage of the cyst near the right lobe (the area of Ashley's surgery of many years ago).

E-mail me at your convenience -- with a few dates that will work for you. Dr. Pat Abbitt is the radiologist with the most expertise with this type of liver problem. I want to make sure that she is available when Ashley returns, and not on vacation.

Dr. Andres

We are happy with the decision although it doesn't mean that Ashley will not require a liver biopsy/surgery in the future. It just means that right now we need to study her liver a little closer before we cut Ashley open. I am not sure yet what the doctors will be looking for in the MRI but I feel confident that whatever they find they will make the right decision. Hopefully, we will learn more before the first day of school which is August 20. I know I am anxious for answers but I know realistically we may never get answers.

So right now we are on Easy Street. I don't know how many miles we will travel on Easy Street but for now we will enjoy the ride.

God Bless, Laurie

I just wanted to type a real quick update before we leave for our vacation in North Carolina. Dr. Andres, Ashley's GI, Dr. Gonzales, liver transplant doctor at Shands and the team of liver surgeons are meeting soon to discuss Ashley's case. As you are aware, Ashley has 3 masses/cysts/nodules on her liver. The meeting is to discuss the possibility of performing surgery/biopsy to determine if they are cancer. Her bigger cyst is approximately 4 1/2 cm in diameter and appears to be fluid-filled. The team of doctors will possibly decide whether to drain/aspirate or remove the fluid filled cyst and just biopsy the smaller cysts/nodules. These cysts are solid masses and could possibly be cancer or at least precancerous. Remember, Ashley was born with a precancerous cyst called a choledochal cyst near her liver on her common bile duct. Since Ashley was born with a precancerous cyst, the likely hood of her getting another precancerous cyst is increased. Dr. Andres emailed me and stated that as soon as the "team" gets together he will notify me of what procedures Ashley will need to have done this summer.

A surgery on Ashley is a bit risky given the precarious state of her liver disease; the bleeding varices, the portal hypertension and low platelets. The "team" meeting is certainly necessary and needed. I am not sure what we need to ask God for in our prayers. I guess we can ask God to guide the doctors into making the right decision for Ashley. I suppose that is the simplest request given the complexity of our needs right now. Ashley is doing fine today, PRAISE GOD. She is in the family room right now watching last year's dance recital CD and dancing along to the music and performing the various routines. Thanks so much for thinking of Ashley, praying for Ashley and most of all for loving Ashley.

Last week, the day of ,Ashley's dance dress rehearsal, I came home from work at Noon to Ashley running a low grade fever. Knowing that in just a few hours Ashley had to be ready for rehearsal, I gave Ashley some Motrin hoping to bring down the fever. At about 3 p.m., it was determined that the Motrin wasn't working because her fever jumped from just a little above 100 to just a little below 103. As I was applying Ashley's make-up and getting her dressed for rehearsal, I called Ashley's doctor. It was after-hours for her pediatrician because it was Friday and his office closes at Noon, we decided that it was an emergency and he gave me permission to give Ashley Tylenol. Note: Ashley is not allowed to have Tylenol because it filters through the liver and can cause abnormal liver function so Motrin is the preferred fever reducer for children with liver disease. However, after transplant Ashley will only be allowed to have Tylenol and no Motrin. I gave Ashley some Tylenol just as we were leaving the house to the auditorium where the rehearsal was taking place, after all the show must go on. Of course, the doctor made me promise to bring Ashley to his office at 8:30 a.m. Saturday morning for examination. Of course, I was worried about Ashley and felt like a horrible mom for making Ashley participate in the rehearsal but Ashley wanted to go. She said, "Mom if I am not at rehearsal or the recital it will just mess up both the jazz and ballet routine; and no one will be happy with me." I am so proud of my girl for not wanting to let anyone down but was worried how she was going to manage her febrile headaches while dancing to loud music.

Ashley did great during the rehearsal, and lasted 3 hours and made it through both her dance routines with the biggest grin on her face and a moderate to high fever. The director of the dance school, Studio 5D, was very concerned for Ashley's well being and said that if we needed to go home she would understand but Ashley wouldn't hear of it; she wanted to be there for her class! Gaymarie, the director and owner of Studio 5D, is such a kind heart who really cares about all of her dance students even the children who are not "star" dancers or in the "dance company". I am so glad I chose this school for Ashley to learn the art of dance. After we got home from rehearsal, Ashley went straight to bed with no arguments. The next day I took her to the pediatrician hoping to find an ear infection or maybe a UTI but no luck. Ashley's ears were clear, her strep test was negative, urine test was negative, there was nothing wrong with Ashley. The rule of thumb is to run a full lab panel when a child with liver disease is running a fever for no apparent reason. The doctors cannot assume that a fever = viral infection. They have to rule out liver issues first before making a definitive diagnosis. With orders to go get labs after leaving the pediatrician, Ashley and I drove to the nearest hospital, Florida Hospital East Orlando. We received the labs results that same day and they were not good. Ashley's platelet count was 87,000 (normal is 155,000 to 450,000). Her bili level was increasing, her AST and ALT counts were off (these number indicate liver inflammation), her PTT and her PT were off too (these indicate issues with blood clotting). The platelet count of 87,000 was extremely alarming but nothing really stood out indicating what was causing Ashley's fevers - a mystery illness. We decided that we would repeat labs again the following week if fevers were still persistent since Ashley was not complaining of pain we didn't think it warranted a trip to the emergency room.

In true Ashley form, we left Saturday evening so that Ashley could perform in the recital; something she looks forward to in the Fall when dance classes begin. Throughout the day on Saturday, Ashley's fever varied from 100.5 to 103. She had several tepid baths and again right before she got on stage to do her jazz number, I gave her Tylenol. She did great, she looked beautiful on stage. I didn't notice any mistakes but Ashley said she messed up a couple of times. After her jazz number we had about 40 minutes to get ready for her ballet number and to get a health assessment before she was due back on stage. Thankfully, Ashley's temperature was controlled somewhat with the Tylenol, her temp never went above 101. We got Ashley dressed and on stage in time for her to show off her ballet choreography. Again, she did great and I saw a few little mistakes mostly in timing not quite an 8 count but a 6 or7 count. I guess she was in a hurry to get off stage, sit in mommy's lap to relax and watch the rest of the recital. Ashley's recital started at 6 p.m. and ended at 9 p.m., Ashley stayed through the entire recital even though she probably would have much rather gone home to sleep. Ashley loves to dance; she loves watch others dance, and wanted to watch all of the dance classes perform especially the dance company; something she aspires to be a part of someday.

Sunday Ashley ran a fever in the morning only and was fever free by 3 p.m., we decided she could go to VBS (Vacation Bible School) at our church on Monday. And Monday she remained fever free. It wasn't until Monday afternoon during her follow-up checkup that her fever decided to return so Dr. Lacy, Ashley's pediatrician ordered more labs. Ashley and I again spent Tuesday morning at the the hospital having labs drawn. Again, we received the results the same day. This time there was an improvement in her labs; her platelets went from 87,000 to 108,000 still low and abnormal but at least moving in the right direction. The best news is her liver panel results were all normal. However, her CBC's were worse which indicated to us that Ashley was indeed fighting a viral illness. Although, we knew that Ashley's mystery illness was viral, we still didn't know why her platelet count dropped so low. Therefore, we will repeat labs again in a week just before we go to North Carolina for a family reunion and my cousin's wedding.

Today Ashley's doing fine. She is attending an all day dance camp at her dance studio and is having lots of fun. She is having so much fun, in fact, she wanted to sign up to go the intensive dance camp later in the evening. Maybe someday you will see Ashley on "So You Think You Can Dance."

Last week we met with Dr. Gonzales, head transplant doctor at Shands. Dr. Gonzales seems to be very pleased with Ashley's health. We discussed the issues Ashley is having with her memory and he decided it was best that we run labs and include a check on her ammonia level. In the almost 9 years that Ashley has had biliary atresia, her ammonia level has never been checked. Evidently, an abnormal ammonia level can affect ones memory. Ashley has a horrible time with her short term memory. At first, Joey and I thought she was just being a difficult child; being defiant by saying she forgot ALL the time. Ashley seemed to be using the excuse "I forgot" way to often so we began to think it was more than her just being difficult or defiant. She will forget simple things like where she just put her Nintendo DS or where she took off her shoes. And she can't seem to remember instructions given to her, simple instructions are forgotten just as soon as they are given. It is very frustrating for her Dad and me, I am sure it's just as frustrating for Ashley.

Dr. Gonzales also asked to have her vitamin levels checked, specifically vitamins A, D, E and K. These are fat soluble vitamins, these vitamins are hard for the liver to digest/process. Again, I don't recall Ashley ever having her vitamin levels checked so these results will be interesting to see. Ashley's diet is not a healthy one, she craves high fat foods, which for a person with liver disease is not good because her liver cannot process those fats. We have been working with Ashley on making better choices in her diet and I am trying hard not to bring home those high fat foods from the grocery store. It is helpful, however, that Joey and I normally eat pretty healthy and try to stay clear of foods that aren't good for you. But like most warm blooded Americans, we love burgers, fries, pizza, chips, etc. We try hard to set a good example for both Brad and Ashley by working out, staying fit and eating right but we do have weak moments, just pass a strawberry cheesecake in front of me and watch it disappear! Unfortunately for Ashley, high fat foods are worse for her because of her liver disease so we are trying to be careful and help her make the right choices with the foods she eats without depriving her to much of the things kids love.

The results of Ashley's labs are pretty good; the best results in the past 9 months. Although we don't have all of her results back yet, we do have the liver function panel and the CBC results. In the last year, Ashley's platelets have been on a steady decline but her latest results showed they went up from 110,000 to 133,000 (normal is 155,000). This is good because we now know that her spleen is able to produce and distribute her platelets throughout her body, which will hopefully mean her spleen will go down in size. Her spleen was huge measuring at 16.4 cms, that's the size of a 20 year olds. Her AST and ALT are a little elevated, these indicate liver inflammation and Ashley's bilirubin level is starting to climb. Her bili has been normal since December 1998, actually it's been better then normal; a -0.1. But it is now starting to climb to the high end of normal. We don't know what this means. Therefore, we are making sure that Ashley gets her meds at the same time every day. This means that we are taking her meds with us if we happen to be at the ball park or somewhere else when it's time for her to take her meds. With both Brad and Ashley's schedule it has been difficult to administer meds at the same time every day. We are hoping that by sticking to the same time every day that we will see her bili drop to a more normal level.

We are excited that Ashley's labs appear to be normal but we aren't in denial thinking that normal labs means she is going to be stable again, we know this disease is unpredictable and anything can happen at any time. However, we will rejoice in the good news today and pray for a better day tomorrow. Our hope has always been that Ashley goes into "remission" with this disease and never needs transplant but the reality is...it may never happen.

June 28-July 8, Vacation to North Carolina for cousin Erin's wedding and a trip to Mobile to see Grammie, Mama and the rest of the family for the 4th of July Family Reunion. (Family Pictures will be posted soon)

There are some people today that criticize our young people. They say that today's generation is selfish, undisciplined, and spoiled. Today I met 18 children who have proven that this generation does care, that they are selfless, and unspoiled; these kids have heart. These 18 children raised $600 toward Ashley's transplant fund, $600 raised by children with a lot of heart. Some of these children have never met Ashley, most of them were in Ashley's 3rd grade class and others were part of Ashley's friend, Sienna's, Girl Scout Troop but they came together for one goal to raise money for a little girl just like them.

This money was raised by having a bake sale, making homemade candles, necklaces, bracelets, etc. and selling them at various garage sales since December 2006. They presented Ashley with $600 in cash at a party in her honor tonight. I, as Ashley's mother, was humbled and in tears. They presented this money for us to use now, or if we choose place in Ashley's transplant fund. As I was thanking these children for their gift and telling them how we planned to use the money, I felt such pride in our youth today. These children could have ignored our need; Ashley's need but they choose to help us. And boy did they help us, that money was used to pay off three medical bills that we have had sitting over head since the end of January. These children are amazing and today I want to thank them from the bottom of my heart. Sometimes I think children are more generous of themselves than adults!

The last few days of my trip to California went well with more trips to the area malls, Simi Valley Mall just to name one. The weather remained perfect during my entire visit. My favorite highlights of the trip really has nothing to do with the "tourist" type stuff but rekindling old family friendships. I enjoyed the time spent with Denise "Costigan" and her husband - Thanks for a wonderful dinner you guys! Seeing Denise's little brother, Chuck Jr. and meeting his two daughter's Chrissy and Hailey, was also another memorable moment. Although, I have to say that Chuck Jr. is not so little anymore. And Chrissy and Hailey are the most beautiful little girls with the exception of course my daughter, Ashley. Chrissy and Ashley would be great friends if we lived in California, they are very much alike. Spending time with my Dad's cousin's, Skip, Barbara and Judy also became another important part of my trip to California. Despite the ordeal at the beginning of my trip to California, my vacation was one I will not soon forget...especially since it ended with a 3 hour flight delay at the Burbank Airport and not arriving home in Orlando until well after midnight!

Another trip to California is in my future, maybe in a couple of years when we are financially stable and I can afford to fly all four of us to my home state. I would love to take the kids to Disney Land or California Adventure, maybe even drive up to San Francisco for a few days to show Brad the Golden Gate bridge and have lunch at Fisherman's Warf. Ashley's wants to ride the "Rice-a-Roni Trolley when we visit San Francisco. Of course, Joey and I would love to tour the wine vineyards. So how much would a trip like that cost a family of four?

Ashley is doing well but seems to be complaining about headaches and running low grades temps off and on for the last 6 weeks. Her pediatrician can't find anything wrong with her. She may have a small sinus issue brought on by possible allergies. We have her on Omnicef and Afrain for the next couple of days to see if that helps minimize or even better get rid of the headaches and fevers. I asked Ashley's pediatrician about testing Ashley for allergies since Brad and I have severe environmental allergies. He said that he would test her but there isn't a whole lot he can do with the information we get from the results. Because of Ashley's progressing liver disease he doesn't want her to get allergy shots or take any prescription allergy meds so we have to deal with her allergies the best way we can without medicating her and compromising her liver. Having a liver disease can make treating other health issues complicated. Have I said how much I hate liver disease.

School is almost out for the summer, the kids can't wait to sleep in and play endlessly with their friends and each other. Honestly, I am looking forward to them being out of school too. It will be a nice schedule change for me. Taking the kids to school, helping them with their homework and getting them to their many after-school activities can be very stressful and taxing on this almost 42 year old body. This summer will be busy but mostly with Summer Camps for the kids and a vacation to North Carolina to attend my cousin, Erin's, wedding. This wedding will be the first happy celebration my family has had in the last year; a nice family reunion of sorts.

As for me, I am still trying to find an additional way to bring money into the household. This morning I have a job interview at my church for a part-time office assistant. If all goes well and they don't freak about Ashley's health and they will work with me on scheduling/hours then this job should work out perfectly for my family. It's been a struggle to find employment that allows me to bring in a steady income while still having the flexibility I need to take care of Ashley's health concerns. Currently, I am working minimal hours for minimal pay for various people who run businesses out of their home. As much as I like the people I work with and enjoy the work they give me, I need to have steady hours with a steady paycheck to get over our financial slump. Pray that I find a job that will be the answer for my family.

Many of you know that I went to California for a little over a week to attend a Children's Liver Association for Support Services (C.L.A.S.S.) board meeting and to go to a Children's Liver Disease Conference near San Francisco. I wish I could say that the trip was uneventful and without drama but my life is always full of drama. I can't run from it to California; it follows me. I love to travel by plane; I would even love to fly the plane. Sitting by the window on the airplane is relaxing; I love to look out the window at the clouds and at the scenery below; I could stare out the window for hours. However, flying isn't as peaceful and stress free as I would like it to be and it has nothing to do with security checks and the long wait to board the plane.

Days One and Two - We left Orlando at around noon on Thursday, April 26 but not before Ashley calls from school saying she isn't feeling well, has a headache and "it hurts mommy". So now I am feeling guilty about leaving my baby while she is sick but I know she is in good hands with her daddy. Waiting to board the plan, guilt is still tugging at my heart and I almost walked out of the airport to go back home. Then it was our turn to board the airplane. The flight to Burbank, California was great. During our flight over California we had an aerial tour from a guy that was sitting with us on our row. He was a pilot and also a Ventura County Fireman. Getting a birds eye view of California was great, the mountains, hills and the city lights was breathtaking. As we landed in Burbank, I was overwhelmed with the beauty of the hills surrounding the airport and the weather; humidity doesn't exist in California. Feeling blessed to have landed safe and sound, I preceded to baggage claim only to discover that my luggage didn't make it to California with me. My mom's luggage made it safe and sound but mine probably went to Hawaii. It's pretty funny, NOT, that my mom and I were on the same plane but her luggage made it and mine didn't, how is that possible?

Now I am off to tell American Airlines that my luggage is lost. As I am waiting my turn to complain, I overhear another mom say that her luggage has been missing for two days and American Airlines said it would possibly be another two more days to find her luggage. PANIC ATTACK, my meds are in my luggage, I have no clothes...more importantly no clean underwear. No clothes for four days, no clean underwear OH YUCK! I turn to my mom and said we are going shopping when we arrive at the home of our family friend's, the Costigan's. Of course, by the time we drive from Burbank to Thousand Oaks, California it's too late to go shopping so I end up sleeping in my clothes. Oh if you know me this was really hard to do, I take a bath at night and a shower in the morning, that's my routine. However, sleeping in my clothes isn't the worse, it's wearing those same clothes without a shower in public at the Oaks Mall in Thousand Oaks, walking into Ann Taylor to try on clean clothes with a dirty disgusting body, not to mention no make-up and filthy hair. Oh how I must have looked and smelled. Thankfully, the person that helped us at Ann Taylor didn't seem to mind and I left Ann Taylor with 4 new outfits. There is a plus side to loosing your luggage on vacation; getting a new wardrobe courtesy of my mom. Thank you MOM!

Days Three and Four -The rest of my time in my home state went well. The weather was beautiful and I fell in love with the landscape so much so that I pictured myself living there with my husband and kids. Saturday I met my online friend from the children's liver support group, C.L.A.S.S. Peggy and I have been communicating for years, supporting each other, understanding each other when no one else did, and helping each other cope with childhood liver disease. Peg's 19 year old daughter, Fiona, has biliary atresia too and she was also born with a choledochal cyst just like Ashley. Fiona's disease is progressing to the point that she will be listed for a transplant before the end of the year. It was great meeting Peg in person and she was everything I thought she would be and more. What a hoot she is, what a warm heart she possesses, what strength she carries, what an inspiration she and her daughter are for many of us liver families.

Peg and I then attended the C.L.A.S.S. board meeting where I updated the board on the status of the new C.L.A.S.S. website and gave them the unveiling date of June 4, this year. We talked more about how to bring C.L.A.S.S. into the 21st century with regard to the website, newsletters, email marketing, fundraising and how we can best serve our pediatric liver disease community. It was a small, short, but productive meeting. And I am now proud to say that I am an official member of the C.L.A.S.S. Executive Board. I only hope I can give back to C.L.A.S.S. half of what they have given me - HOPE!

On Sunday, Peg and I drove 6 hours to Burlingame, just south of San Francisco, to attend the Children's Liver Disease conference organized by the Northern California chapter of the American Liver Foundation. This meeting was extremely informative for parents of children who have been transplanted due to liver disease or who are still living with liver disease. The most exciting news we learned that day is that they believe a cause and hopefully a cure for biliary atresia will be found in Ashley's lifetime. It may be to late for Ashley but just think of how many other children will be saved from this disease because of the combined efforts of many doctors, nurses and other medical professionals determined to fight this horrible disease. Just the thought of having answers to this disease gives me chills.

I also learned that children with liver disease have short term memory problems that need to be addressed at the school level as well as at the medical level. Getting these children into counseling as early as possible will help them cope better with pre and post transplant issues. Children with liver disease also have problems in school, not socially but academically. They have found that although these children test above average on IQ tests, they perform poor in the classroom or at least struggle to maintain their grades. Ashley's brother is "gifted", he tested with a very high IQ and since we were told that "giftedness" is hereditary, we decided to have Ashley tested. Ironically, she was tested while I was in California and I am still waiting to hear about those results. Overall, I learned a lot at the meeting. I was able to pull some of the doctors aside to ask them about specific issues with Ashley; her cysts and her insatiable appetite. The doctors and Peg gave me some great suggestions on how to deal with Ashley's appetite. And I have some information to take back to Ashley's liver team when I see them in May. I left the meeting feeling relieved, as relieved as I can be knowing that Ashley still needs a transplant.

Days Five and Six-On Monday, after our long drive back to Thousand Oaks from the conference, I decided to sleep in. After waking up at around 9 a.m., I showed. dressed and walked outside to enjoy the nice Southern California weather. Since I was staying in a home just a few blocks from where I use to live as a child, I decided to take a walk to see the house I use to live in and to see the neighborhood. My first thought on seeing the house, it's ugly and small! I reminded myself that I lived in that house with my mom and dad, older sister, as a baby to around age 5, so of course the house would look small to me as an adult . The scenery around the neighborhood was nice, lots of hills and homes were beautiful. There were some homes that I just imagined "flipping" selling them to earn a nice profit. With home prices in California being at least 3 times higher than Orlando, one could make money flipping in Thousand Oaks.

The next day, Tuesday, May 1, we decided to become a tourist and go to the Ronald Reagan Library in Simi Valley. The library was beautiful, nestled on top of a hill. And view from the library wasn't bad either. I was told on a clear smog less day, that one could see the ocean from the library. I didn't see the ocean but a bunch of rolling hills, expensive homes and an orchard of trees. Here are some pictures of that visit.

A Piece of the Berlin Wall

President Ronald Reagan's Gravesite

His Gravesite overlook the view from the Hill.

View from the Library Hill

Smoggy Day

An big home in the valley below the Ronald Reagan Library

During the tour we were able to walk through Air Force One, see the Presidential motorcade and helicopter. Some of the garden's surrounding the library were replicas of the garden's at the White House, the had cherry trees and the rose garden. We toured on the day before the Republican Presidential Debate so it was quite busy around the library with the press there, and getting things set up for the debate. We were told that Nancy Reagan was at the library in her office on the top floor of the library. If you get the chance to to California, drive to Simi Valley to see the Library it's full of history and it's never the same thing twice.

Day Six and Seven-Thursday and Friday, I again spent time just driving around different areas of Ventura County. Thursday evening my Dad's cousin, Skip, Barbara, and Judy came to eat dinner with us. Skip drove a couple of hours from Anaheim just to see my mom and me. I am so glad I have been given the opportunity to get to know my Dad's side of the family. It's really sad that it took my Dad's death to bring us closer together. I really enjoy getting to know them and getting to know my Dad through them. Thank you to Skip, Barbara and Judy for taking time out of your busy day to come visit with me and my mom. I hope we have many many more visits together in the future.

We visited Santa Barbara on Friday and had lunch on the pier. Santa Barbara is also very beautiful, a place where the ocean meets the hills. I took several pictures there as well but we didn't to much walking around that day, the wind was horrible and it was a little cold. If I had known ahead of time that my mom's cousin, Bill, lived in Santa Barbara I would have tried to get him to meet us for lunch at the pier. Next time Cousin Bill, I promise I will call you when we are in town. And speaking of cousins, I must apologize to my own cousin, David and his wife Rebecca for not calling him to let him know we were in California. My plan was to get together with them by meeting them half way between Thousand Oaks and Santa Maria where they live. Next time, I won't forget to bring your phone number with me to California. Thank goodness I will see David and his clan at his sister's wedding in June!

Sometimes things in life happen for a reason and it's up to us to figure out that reason. Reading my past journal updates is a bit overwhelming and my life seems to be much more then one could handle. People have been trying to help me get through my heartache by saying things like "God does not give you more than you can handle" or "It could be worse". Sure things can always be worse and living in my world "liver disease world" it certainly puts what can be worse into perspective. There are so many families, my friends in the liver disease community, going through much worse. Take for instance, the Hawk family, Lisa, Joey, Aiden and Mason. This family has probably been through much more than any one family should.

Lisa and Joey have been blessed with two very special little boys. Aiden, the oldest, was born with the same liver disease as Ashley. However, Aiden did not do well long term with biliary atresia and ended up needing a liver transplant as a very tiny baby. What a gift Aiden was given, a second chance at life; the gift of organ donation. But things didn't stop there. After Aiden's successful liver transplant he was diagnosed with Ideopathic Anaphylaxis (IA), which means that little Aiden can have a deathly allergic reaction to anything that comes into contact with him. His mom, Lisa, has saved his life over a dozen times. The epipen has become a symbol of life and fear in the Hawk household. I can't even imagine the fear Lisa must have when she sees her sweet boy turn blue because of an allergic reaction, having the calmness to grab the epipen, call 911 and begin CPR to save her son; talk about a super mom! Despite all of this Aiden lives a "normal" happy life, after all life goes on.

Now, if God does not give one more then they can handle, then Lisa and Joey must be saints because just a few days ago, their youngest son, 18 month old Mason, was diagnosed with a brain tumor. Can you believe it, it's not like this family has enough going on, now they have been served with another curve ball. Yesterday, Mason had an MRI and we are anxiously awaiting the news on whether the tumor can be removed, that the tumor is benign and that Mason will grow up into a handsome man like his daddy, Joey. If you read Aiden's website, you will read about this amazing family. Their faith, their love, their strength is an example for everyone who knows this family, whether it be virtually through the internet or personally. Personally, I have learned a lot from Lisa, Joey and their precious boys. And what I learned from them is not that things could be worse, it's that things could be worse without God, without Love, without Faith, without Friendship. The Hawk family is just one reason why life must go on.

I wrote the poem below for my Grandmother after she passed away. My Aunt and my Mom asked me to read it at the Memorial Service. I received so many compliments after the service that I decided to share it with all of you.

Those of you who know me know that I am very much an optimist and a positive thinker but lately we have had more than our share of sadness. Ashley's disease has provided us with more sadness that one family should bare. Her progressing disease, the unknown masses/cysts/nodules whatever they are, the varices and all the other crap that goes along with liver disease; just typing it here is depressing.. My dad's open heart surgery in September left me scared and worried that I was going to loose my Daddy, we had a pretty decent size flood in the children's side of the house; our house was a mess for over a month and half, then my Dad is diagnosed with a life threatening blood disorder and struggles to stay positive, then a month after diagnoses he passes away and around that same time we find that Ashley needs a liver transplant. And just when we think we can't take anymore...just when we think things were improving, we loose my beloved grandmother today-enough sadness already!

Although we had prepared ourselves mentally for my grandmothers death, we didn't realize the emotional toll her loss would take on our family. She had been sick for so long and as much as she prepared herself for heaven, we knew that she was really too stubborn to go; too scared to go. But after my Dad passed away, Grandma started taking a turn for the worse, she was so ready to go that she tried to speed up the process on her own. She could not understand why God wouldn't take her, why He was letting her live life bedridden and dependent on others. She told me once that living bedridden and dependent was her worst nightmare, she hated this life she was living but at the same time loved living. Toward the end of her last year of life, I asked her several times what she wanted me to pray for on her behalf; she said that all she wanted is a peaceful pain free death. That day I left my parents house, where my grandma was living at the time, and decided that I was no longer going to ask God to save my Grandma because she was already saved but to allow her die peacefully in her sleep. It took God over year to answer my prayer but he did answer just as I had prayed.

Grandma or GG, as her great-grandkids called her, was one of a kind. She was stubborn, strong, smart, would do anything for the people she loved but in her own way and in her own time. She wasn't easy to read or figure out but one never doubted her love or her loyalty. She didn't wear her emotions on her sleeve but she was very emotional. She cried each time she saw Ashley, and was in awe of her miracle great-granddaughter. GG loved all of her great-grandkids and as she aged and became increasingly bedridden, her heart ached when she couldn't watch the children play and interact but she could hear their voices from across the house. When we moved her to a nursing home she missed being part of the family activities even more and she often felt left out and forgotten. And as a family, we tried hard to visit her with the children. Oh how she lit up when she saw all of us walk into her nursing home room after Christmas last year. "It wasn't the same," she said, "but it was better then being alone." Being surrounded by family was what made Grandma happy.

Now Grandma is with my Daddy in heaven. And oh I hope they get along better in heaven they did on earth. I can just see my grandma and my daddy in heaven arguing endlessly about what they see "us" doing on earth with both of them thinking one of them is the only one that is right. I can hear my Dad saying, "Okay Phyllis" just to keep the peace but then mumbling something horrible under his breath. The funny thing is they were so much a like, that neither one of them really noticed it or would admit it. I hope that my Dad greeted my Grandma in heaven with open arms and a big bear hug. I see him showing her around his new house with eagerness and pride. Both of them being happier and healthier then they have ever been in their lives and being able to share that together, I can see that and smile knowing that they aren't in heaven alone...they have each other.

So maybe the sadness we have been experiencing these last several months allows us to reflect on the happiness heaven will bring.

Our meeting with the "team" went better then I expected. I went into the meeting with three pages of questions and left with 5 pages of answers. However, not all of the team could be in attendance, we did not meet with the transplant doctor or the transplant surgeon - they were performing transplants. However, we will be meeting Dr. Gonzales in Orlando in May, he is the transplant doctor. Dr. Gonzales will be the doctor that we will see when Dr. Andres retires in a few years or is not available due a busy case load. We did meet the transplant coordinator who we liked a lot, she was very knowledgeable with the listing process, financial needs, Shands policies, etc.

Basically, we were told that Ashley is currently stable but with a progressing liver disease. She does not qualify for a transplant and they cannot fight for exception points until Ashley has a major bleed. Believe me the thought of Ashley having a bleed is scary but we are okay with not having her listed for a transplant just yet. Here is something they told us that makes complete sense, "The risk for death if we were to transplant Ashley now is higher then if we continue to manage the complications she has now." In other words, why fix something that ain't broke enough that it can't be fixed with Band-Aids here and there. Does this mean that Ashley will never need a transplant - no, it just means that she doesn't qualify for a transplant right now. I know those of you who don't live in my world, "the transplant/liver disease world", don't understand but please know that we as a family are okay with this; we don't want to transplant Ashley prematurely. Also, transplanting Ashley is just trading one set of problems for another and although her problems now can be potentially life threatening a transplant increases the chance for death by 10%. That is an exact quote from the Transplant Coordinator at Shands.

Other things that we found out during the meeting: Ashley does not have ascites and if she does it is extremely mild because her albumin level is normal at 4.7, when the Albumin drops below 4.0, then Ashley will be found to have ascites. The puffy area above her Kasai scar is believed to be fatty tissue (we were told this is very normal in children Ashley's age) or it could be edema which would certainly indicate mild ascites. Dr. A is leaning more toward it being fatty tissue but doesn't seemed to be as concerned about it as much as I am. I will certainly keep an eye on it for changes and report that to him or her pediatrician.

Ashley was happy to hear that her physical restrictions have not changed that much. She still cannot participate in contact sports and she cannot go horseback riding. Ashley was disappointed because she wants to go horseback riding for her 9th birthday. Evidently, Dr. A. sensed her disappointment and asked her about her love of horses. He gave her permission to go horseback riding on her birthday but no riding lessons or riding on a more frequent basis, Ashley was happy with that and thanked Dr. A. Of course, Ashley is thrilled that she can still take tumbling classes but mommy was given orders not to leave the building while Ashley is in class. Oh well, no more Smoothie runs for mommy while Ashley is doing backhand springs.

Dr. Andres did feel Ashley's liver for the first time. He said that was good news because a liver with fibrosis or cirrhosis is usually much smaller and cannot be felt on physical exam. He also said that her spleen is definitely larger on physical exam compared to her last exam. However, that is to be expected with portal hypertension and a progressing disease. Ashley's confirmed symptoms are: portal hypertension, varices, hypersplenism, splenomegaly, liver nodule and liver cyst. The degree (severity) of the varices still need to be determined and ascites still needs to be confirmed.

Ashley is scheduled to have an endoscope, ultrasound and more labs in June. These will be done at Shands so we will be spending approximately 3 to 5 days in Gainesville for those procedures and to meet with Dr. Andres and/or the liver team again. If nothing is changed, and the varcies aren't of a concern then Ashley will not be seen again by the team until December. There is still some talk of doing a biopsy on the liver nodule/cyst but it's unlikely unless Ashley's tumor marker test elevates significantly. Doing a biopsy would mean surgery for Ashley so at this time it's not something that they want to do unless absolutely necessary.

To those of you who don't understand any of this, I am sorry and I hope I can explain better in the future. All you really need to know is that, right now Ashley does not need to be transplanted but will eventually need a transplant. We are going to manage her complications as best we can for now. If Ashley has a major bleed or her tumor marker test elevates then she will be listed for a transplant. Her quality of life is good, she is growing and thriving normally and her complications can be managed. This is all good news...and I am happy! Maybe just maybe Ashley's disease can be managed long term, long enough for the medical professionals to find a cause and cure for biliary atresia or at least an alternative to liver transplant surgery. Wouldn't that be a miracle!

Wow, I can't believe that this website is done. It's been fun to design and to try something new, the curved corners on this website. I wanted to add curves to the website to give it a more feminine touch. Ashley approves so that's all that is important. She loves her new website and is anxious to leave journal messages to all of her readers too. Please take a look around. Lots to see, lots that will still be added so save Ashley's website under your favorites. Come back and visit often. And please don't forget to leave Ashley a note in her guest book.

Okay so it's not entirely complete but you get the picture. At least it will give you a reason to keep coming back. You can even check on Ashley while you are looking at the new stuff being added to her website as the days and weeks pass. If you have any suggestions or comments about the website, please let me know. You can always email me at loveashley@loveforashley.com.

Ashley's doing well. We saw the pediatrician recently and he believes that Ashley may have mild ascites and there is a strange puffy swollen area above her Kasai scar. Ashley stumped him, as he has no clue as to what is causing the puffiness in that area. Her health remains the same, liver is still kicking but we have no idea how much longer before we hit that fork in the liver transplant road. Next week, March 7, we will be meeting Ashley's GI/Liver Doc, Dr. Andres, at the Shands Hospital Liver Clinic in Gainesville, Florida. We are also scheduled to meet some of the transplant team at that time as well. Dr. Andres will take a look at the puffy area and come up with an answer-we hope. However, I am packing bags in case Ashley is admitted. I am afraid she will need an ultrasound and a upper/lower GI scope now. She is complaining of belly pain more and more each day but she can't fully explain how the pain feels. Her belly does seem bigger, at least to me. I am trying hard not to jump to conclusions but my gut instinct has been pretty accurate since Ashley's diagnosis.

Ashley received her report card and made all A's and B's. However, she has a little problem with talking at the wrong times in class and she is unorganized; let's see where does she get that from, not me! She is still taking dance, ballet, jazz and tumbling. I am preparing her for the possibility that she may have to quit tumbling depending on what the doctors say at our appointment next Wednesday. However, I am going to see if they will compromise and allow Ashley to continue tumbling if we look into private lessons. With private lessons, she will have one on one attention and will be less likely to get injured. I mentioned private lessons to her Coach, Scott Johnson (1984 Olympic Gold Medalist), and he said no problem.. Hopefully, it will all work out for her; she loves tumbling, she smiles the entire hour of class.