Love For Ashley

It's Ashley HERE!

2011-10-31T20:04:00.001-04:00

Hey guys! It's my first post! EVER! I am soo happy cause I wanted all of you guys to know that I am addicted (slightly HAHA) to the Shaytards/Shaycarl/Shayloss/Katilette/etc. So you guys need to go subscribe to their channels!

They're amazing, It's about everyday family life and they post a video everyday!
It relieves the stress, and I love it! Its so funny. So you should go watch one!

Anyways...

I just wanted to say hey! I love you guys sooooo much for donating stuff, before my mom closed the original website. :) And thanks you guys who are still here, watching over me and when I was a baby and sending me packages! I enjoyed them so much! THANKS! I loved them, like they were great.

Thanks you guys for sending me prayers and teddy bears ("Shout out to Matthew") (:

So guys I am going to post something everyday. Cause' my mom is getting Lazy, and she could pass this on to me if she wanted *Wink Wink*.

But you'd have to do the designing, WE NEED MORE PICTURES! Like a college in the background of the family. Right guys?!? Post below!!

But, yeah. I'm really excited. What do you guys think I should post about? Like how I'm feeling and how my life is. Then my mom can do like other stuff, that I don't post. Blahhh Blahhh Blahhh.

I don't know what to type! But comment below followers! And suggest ideas! Love ya!
Kisses,
Ashley Johansen

P.S. Shaytards fav. word is packages! AHH!

Complete Strangers = Happy Dancer

2011-09-07T14:27:00.000-04:00

Sometimes people completely amaze me, and I mean that in a good way not a bad way. Since Ashley was born and diagnosed with this rare ugly life threatening liver disease, we have been blessed with help beyond measure. Sometimes that help was financial, sometimes that help was a simple prayer, and other times that help was just a much needed hug. The people that amaze me are not family or friends, it is complete strangers.

As you know we stopped fundraising for Ashley's liver transplant fund sometime ago since she has been relatively stable...relatively speaking. Although we are not asking for help, we are still receiving it. Many of the people that ask to help don't want to donate to Ashley's liver transplant fund, they want to help making Ashley happy. And what makes Ashley happy? DANCE. Yes, we have a sponsor or sponsors that are currently helping fund Ashley's love for dance. It is amazing, it is emotional.

What is even more incredible is that the sponsor(s) are complete strangers. We have people offering to pay Ashley's dance tuition, help pay for costumes; whatever we need. I even had one want to pay for an entire year of dance (company) but I think they would have a heart attack if I told what it really cost. Have I accepted all the offers of help, no. But instead I have asked some to please help other children or families in need. Or to donate to Biliary Atresia Research in honor of Ashley. Some have done just that or something similar, others have ignored me and we received a donation via Pay Pal.

I am completely amazed by these Complete Strangers who want to make my dancer happy.

Our Normal Life

2011-08-30T19:50:00.002-04:00

Sometimes it amazes me how normal things can be. Our daily life is much like everyone's, the kids go to school, Joey and I go to work, Brad plays baseball and Ashley dances. School started here a few weeks ago and Ashley is loving all of her classes and her teachers; she is the top dog, an 8th grader. We got so involved in the normalcy of our life that we I completely forgot that Ashley has a trip to the Shands Liver Clinic next Friday. To prepare for our two hour trip to Gainesville, Ashley needs to have blood work done this week, she needs to see her pediatrician for her 13 year old physical (I think I will schedule Brad's 15 year old physical as well). So as normal as our life seems with school, work, dance and baseball, it really isn't all that normal when compared to others.

We are excited about Ashley dancing/competing again this year. She will be doing two solos, a duet and 3 group numbers. I am looking forward to ~~NOT~~ having to fundraise to keep her dancing. I work the first UCF Knights Football game this Saturday. I am praying that we make some good money. The more money I make for Ashley that less I have to fundraise and the more time I have with my family. We are still looking at getting people to sponsor Ashley with dance competition. Ashley said if we can get 5 people to sponsor $100 that would be very helpful. (Ashley likes to dream, she dreams big). This may be Ashley's last year competiting so we want to make the best of it. We hope it's not but with her starting high school next year, she is going to be even more busy with academics not to mention a high school social life. Don't worry though, Ashley will always be dancing somewhere, it could be at her current studio, or at a workshop, a masters class or even her high school dance team. Dance is in Ashley's blood, her great grandma was a beautiful ballerina.

Ashley and some of her friends after a dance competiton.
From left to right: Ashley, Kylie, Alexa, Delaney and Ari

Birthday Card from Friendship, Wisconsin

2011-08-10T09:26:00.000-04:00

Yesterday was Ashley's first day back at dance for the new dance season. Imagine our surprise when we were handed an envelope from the studio that did not contain a bill but a birthday card. This birthday card wasn't from the dance studio but from Randy and Sharon Miller. The mystery behind this card is that we do not know a Randy and Sharon Miller from Friendship, Wisconsin. If you are Randy and Sharon Miller, please send me a private email at laurie@cfl.rr.com. In the meantime, thank you for sending Ashley a birthday card. We really appreciate your thoughts of her special day.

Drama to Bama

2011-08-06T23:03:00.000-04:00

While traveling to Mobile, Alabama to see family we were in a pretty horrific four car crash. Thanks to my alertness, I saved us and our car from being totaled. It was such a bad accident the FHP could not determine fault, they only knew for sure that we were not at fault since we were rear ended. All three of the other cars had both rear and front damage. And all persons in those cars were taken by ambulance to the hospital. Needless to say it was more drama on our way to Bama then I ever care to experience again.

Top 10 Liver Disease Blog Recognition

2011-07-30T10:10:00.001-04:00

Ashley's blog received an award in 2010 and I was not even aware. Her blog was listed as one of the Top 10 Liver Disease Blogs by the Certified Nursing Assistants.

Here is our badge:

CertifiedNursingAssistant.org

Happy Birthday

2011-07-30T09:48:00.001-04:00

Ashley is officially a teenager. Amazing, we weren't promised two years with her and yet we have been blessed with thirteen. To God be the glory.

We were hoping to surprise Ashley with tickets to So You Think You Can Dance. The tickets went on sale yesterday and the show tour kicks off here in Orlando on September 17. I just wish the tickets weren't so expensive. So disappointed, where is that money tree when you need it.

Ashley did receive a cute birthday gift in the mail. Here she is pictured with it.

Thank you Matthew for the Ballerina Bear.

Tonight Ashley is having a sleepover birthday party with some of her friends. Being born in the middle of the summer means that not all your friends can come to your party because they are on vacation. However, we are going to make the best of it with those few who were able to celebrate with us. I will post birthday party pictures later.

For now I will leave you with these pictures:

Brooke and Ashley making Ice Cream Cone Cupcakes

The Finished Product

Please leave birthday wishes for Ashley on her blog.

Medical Bills - A Good Month

2011-07-22T13:59:00.002-04:00

Today, I had the wonderful chore of paying all of our bills. The joys of being a responsible adult. Normally, it is an easy task but when you add medical bills in the mix, it can become a headache. This month, however, it was pretty easy. Ashley's medical bills only totaled $317.08. Sometimes I wonder how much we have paid out of pocket on Ashley since her birth. After two major surgeries, several minor ones plus blood work, MRI's, CT Scans, Ultrasounds, HIDA Scans, medicines, three stays in the ICU, etc. it could be $500K or more..choke, cough. But then again maybe I don't want to know.

The Other Piece of My Heart

2011-07-19T16:10:00.003-04:00

Everyone who reads this blog knows almost everything there is to know about Ashley. Everyone knows that Ashley is such a big piece of my heart but I want to introduce you to the other piece of my heart; Ashley's big brother, Brad.

Brad was born in 1996 after several failed pregnancies. He is just as much of a miracle to me as his sister. When my husband was finally ready to have children I changed just about everything in my life. I began to work out more, eat better, cut caffeine, was very blunt in asking people not to smoke around me. At the time I worked at job that kept me on my feet virtually eight hours a day. I never had problems getting pregnant, it was staying pregnant that proved to be a challenge. Approximately two months before I found out was pregnant with Brad, I had a miscarriage. It was devastating, I felt God was punishing me for some past wrongdoings but I was determined to become a mother. Being a mother was the one thing I know I was put on this earth to do. I firmly believe it is the only path God planned for me.

Today Brad is a very well adjusted, smart, athletic, and cute (just ask all the girls), 15 year old boy. He just took the tests to get his Lerner's Permit. As his mom, I am excited he will be driving soon yet at the same time I am scared to death. Brad is not the typical teenage boy except for the fact that he sleeps til noon during the summer and likes girls or should I say girls like him. What makes Brad different is he has such an intelligence and maturity that is well beyond his years. I enjoy so much talking to Brad about politics, religion, history...just about anything. But I am also very embarrassed and humbled to admit that Brad is so much smarter than me.

Brad and I are close, we have the same close relationship that I have with Ashley. Brad talks to me about anything; girls, drugs, sex, etc. (Our conversations aren't always about politics and/or religion). Brad is self-disciplined but I still have to guide him. He has a great circle of great friends from all walks of life, both girls and boys. I trust his friends and I love being around them almost as much as he does. I secretly wish all of Brad's friends were my friends on Facebook but that is taboo. I think my Facebook page would be so much more exciting with Brad's friends a part of it.

Baseball is Brad's sport of choice to play, but he prefers to watch football. Brad has been playing baseball since he was 5 years old and was on his high school's JV baseball team as a freshman last year. He is a pitcher and a third baseman but can pretty much play any position assigned. Some of the players on the JV team last year have said that Brad "is the most underrated player on the team." He seems to have gained the respect of his fellow teammates as well as the coaches. So you see I am not just a dance mom, I am a baseball mom too.

Academically, Brad is gifted and I am not saying that because I am his mom, he is truly gifted with a high IQ. He is not one of those gifted students that consistently makes straight A's. Since going to high school, the straight A's seem to elude Brad. He is part of the International Baccalaureate program at his high school and graduated middle school with 4 high school credits under his belt. He has many interests and is still not 100% sure what he wants to major in when he goes to college. Some of his interest include psychology, medicine, and engineering. He has dreams to attend the Naval Academy, M.I.T. or Stanford or as he says, "any school that is not in Florida."

When Ashley was born with all of her health issues, I was afraid Brad would be extremely jealous of her or overprotective of her. However, Brad is neither; he treats her like any sibling would treat their brother or sister. Brad and Ashley have always gotten along and even though they will both be teenagers soon, they still like to spend time together. I know that when Ashley starts high school in one year, Brad (and his friends) will be there to help her. Knowing Brad will be there gives me some peace.

Brad is such a big piece of my heart, and just like Ashley, he is the reason mine continues to beat. Being a mother to both of these miracles is such a gift. A gift I will cherish daily and will enjoy continuing to unwrap as they learn to live there lives.

On Turning 13

2011-07-18T11:29:00.004-04:00

It is hard for me to believe that Ashley will be a 13 year old in less than two weeks. Right now I am trying to plan her 13th birthday, not exactly sure if we want to do a big party now since she will get a big party when she turns 16. Ashley has told me that she just wants money for her birthday...lots of money. She is saving money so that she can go to camp at Sea World; swim with the dolphins. For years we have talked about going to Sea World's Discovery Cove but that cost $199 and this is with a Florida Resident Discount. When Ashley's Make A Wish was granted back in 2003, swimming with the dolphins was the first thing she asked for, the second thing was a horse for the back yard. Her wish ended up being a Disney Cruise, which we completely enjoyed. One of these days I hope to grant Ashley's wish of swimming with the dolphins.

One of Ashley's goals before she celebrated her 13th birthday was to reach the 5 foot mark. This weekend we measured her height and discovered that she not only reached 5 feet but she passed it. This made Ashley so happy that she held her head higher for the rest of the day. Ashley wants to be 5'7" tall, I hope that she is able to reach that height but with a dad who is only 5'9" and a mom who is only 5'5" I am not sure she will be able to. Her brother is almost 6 foot so there is still hope for Ashley. (Brad just turned 15).

As I think about Ashley turning 13, I can't help but smile as I look back at where she has been and where she will go. God has a plan for her and discovering what that plan is has been and will to continue to be a celebration of Ashley's life.

One of these days I will write about something other than dance...

2011-07-07T11:13:00.000-04:00

We just got back from Starpower Nationals where Ashley competed in dance against many talented dancers from all across the United States and Canada. There were many great studios present, many of them from Florida. Watching the amazing talent on stage only made me wonder more about Ashley's future in dance. Don't get me wrong Ashley will continue to dance as long as we can financially afford it. But I wonder if Ashley should continue to compete in dance. I worry about her getting discouraged when she sees talent she feels she may never be able to achieve. Ashley is a talented dancer but is she gifted? Many trained professionals have told me that she has talent, and I do see that. Ashley has worked extremely hard in dance to get where she is today, many are born with this natural ability to dance, Ashley is not one of them. However, she has the heart for dance and I believe sometimes that is more important then natural ability.

Ashley's solo performances did not reach the overall level, as she was competing against very talented dancers such as Marrin Espy from Keegan Dance Company and Harrison Weiland from Shooting Stars. However, Ashley received a 4 1/4 stars out of 5 on both her solos which to me is remarkable considering the many other amazing 12- 14 year old soloist she competed against. The five group numbers Ashley competed in did not make it into the overalls but did receive 4 1/2 to 4 3/4 stars out of 5. Again, our studio competed against studios from Ohio, New Jersey, Canada, Georgia just to name a few. Of course, every studio's goal is to reach the overalls but that does not define who you are as a dancer or a studio, I am very proud of our girls for dancing their hearts out.

We have about 5 more weeks before dance starts back up again. Many decisions need to be made about where we are going to go with Ashley and dance. If she remains in the dance company, how many numbers can we afford to let her do with or without fundraising? Will Ashley compete two solos or one? Does she perform her first ever duet/trio? For me my goal is to only have Ashley in dance classes three days a week instead of the five days a week that she has been doing for the last 4 years. My other goal is to keep Sunday's free of dance so that we can have some family time. And vacations, time when there is no school, will be used for just that, a vacation, not a time for dance rehearsals. I am not sure if I will be able to achieve my goals but I will certainly try too. Achieving my goals is important to our family dynamics and overall happiness.

Since we have a break from dance for some time, we are going to use this time to watch the very last space shuttle launch, go to the beach, celebrate Ashley's 13th birthday with a very big surprise and spend some much needed time with our families in Mobile, Alabama. It really is to bad that both Joey and I have to work these last several weeks of summer. Truly wish we could afford to go on a family cruise or spend a long weekend on the beach before the kids go back to school, baseball and dance.

All About Ashley - Dance, Liver, Life.

2011-06-26T18:13:00.004-04:00

Ashley has been busy this year with dance. She is simply amazing and has grown so much as a dancer this year. I am very proud of her. Each year as Ashley continues to dance, it has become increasingly hard to pay for her love of dance. However, some how by the grace of God we are able to continue to support her talent and love.

I mean really how can you possibly say no to this.

and this...

and of course this....

and this too....

Amazing isn't she?

Remarkably or miraculously dance seems to be what is keeping Ashley so healthy. Her doctors are in firm belief that her dance is providing her with healing powers that they just don't have. Ashley's liver disease is stable after 13 years of fighting this beast called biliary atresia. Note: I said stable not cured. Her liver function appears to be normal...for now. The only issue we are dealing with is Ashley's platelet count is continuing to drop. At present time, her platelet count is at 68,000 (normal is 140, 000 to 240,00). A low platelet means Ashley bruises easy, she is at risk for internal bleeding and her spleen is at risk for injury. The good news is that Ashley's liver is still happy, and I almost forgot those masses/cysts/nodules they found in her liver when she was three years old are gone or they just could not be seen on the ultrasound. Maybe dance does have something to do with it.

This month we tested Ashley for Celiacs Disease and her blood work did not indicate that she has the disease nor did it show that she didn't have the disease. Ashley's symptoms pretty much point to Celiacs but without a biopsy of her small intestine we will not be certain. Regardless, we are introducing Ashley to some gluten-free foods. Ashley has noticed the difference when eating these foods and she certainly complains less of stomach pain, diarrhea, constipation, etc. We are struggling with the idea of putting Ashley through another upper endoscopy to achieve the biopsy results. Ashley goes through so much medically, sometimes she wants a break from being a pin cushion/science experiment. As her parents, we want it all to stop too but we also want to do what is best for her to give her a long and happy life. I think that's why we love to watch her dance...we forget how precarious her health can be.

Ashley being stretched by her "big sister" Cami.

Caroline, Ashley, and Madison

Ashley and her friend Mackenzie

Ashley 2nd Overall Soloist with her friend Ari who got 3rd Overall.
Ashley is pictured with her choreographer, the beautiful and talented, Alexis Underwood.

Next week, we will be watching Ashley compete in a national dance competition in Orlando. We look forward to it because we do like to forget about her disease every once in a while.

Update Coming Soon

2011-06-23T19:07:00.001-04:00

Boy I don't keep my promises very well, do I? However, I am working on an update for Ashley's blog right now that will include more recent dance pictures, medical update and more. I have been looking at moving her blog over to WordPress but I have no clue how to do that, wish I knew someone who did.

Check back tomorrow for an update.

Poems By Ashley

2011-02-16T18:13:00.001-05:00

My Life

I am still young,

but my hope is not lost,

even with a pain bearing

through my thoughts

I have grown through the years

12 to be exact

knowing the scary fact

of my life threatening disease

that I have had

since the day I began to breathe

it has been hard, times have been rough

going to the doctors at least twice a month

missing school

losing friends

having surgery it never ends

Though,

you gave me home,

some family

some friends,

some wonderful pets

and a love that never ends so,

I won’t give up,

I will live through this

haunting fact that

will never give.

Written 12/13/2010

LOST HOPE

A hope

a gentle hope

floating through

continuous air.

Making us stare

wondering where

it might hide.

Hope is there

waiting for prayer.

Why must it hide

we need its guide.

Don't you dare

try to cry,

He is there.

A hope

a gentle hope

floating through

continuous air.

You must decide

to catch Him there.

written 2/9/2011

A Gift from Ashley on her Birthday

2010-10-27T15:44:00.000-04:00

Ashley turned 12 in July and just a few days before her birthday she donated her beautiful long hair to Locks of Love.

The stylist cut about 11 inches of Ashley's hair. Ashley already growing her hair out to donate again next year.

Catching Up and Filling In

2010-10-21T11:08:00.003-04:00

There have been so many things going on since I last posted. I apologize for not posting more often, I promise I will be more diligent at keeping up with and posting on Ashley's blog. Soon I will post some recent pictures of Ashley but for now let me just update you on our little miracle girl.

Back in September we made one of our many yearly trips to Gainesville, Florida for an appointment to Shands Hospital Liver Clinic. We had the best appointment ever since Ashley's diagnosis with biliary atresia 12 years ago. I am completely amazed at how far she has come, we were given such little hope when she was born. At that appointment, the doc could not feel her spleen. Not feeling the spleen is a good thing...a very good thing. For the past 12 years, Ashley's spleen has been huge (the size of a grown adult) and it was the reason for her not being able to participate in certain activities, horseback riding, gymnastics...and even regular physical education classes. We are cautious about saying that her spleen will never enlarge again because we know all to well the unpredictability of this horrible deadly disease but for now we will take it as news that her liver seems to be functioning much better now.

A normal spleen does not mean that Ashley no longer has biliary atresia, it just means that her spleen is smaller...that's all. We still have all the same worries, bleeds, liver transplant, low platelet count, etc. But we are not letting those worries consume us today.

Ashley's lab counts look pretty good too. Her AST/ALT were slightly elevated, those can indicate inflammation in her liver. Her WBC (white blood count) was low, which we all know can indicate infection. However, they weren't alarmingly off so we just thought she might have a mild virus that was dormant. Sure enough, a few days after our visit to the liver clinic, Ashley came down with a sinus infection. We have no idea what her platelet count is because the lab technician messed that up...the blood coagulated. I would love to see her platelet count especially since her spleen is/was significantly smaller. Ashley still bruises very easy (you should see her knees from dance classes), therefore, I think her platelet count is still low. Maybe I will take a picture of Ashley's poor bruised knees.

Speaking of dance. Ashley is in full swing with dance classes (9 hours) and dance company rehearsals. She is doing two solos this year and a few more group numbers that she has done in the past. I, her mom, and her biggest fan, has been busy fundraising to keep Ashley in company. (The things I do for my kids, but I wouldn't trade it for anything, hopefully they will appreciate it one day, if not now). Ashley is known as gumby at her dance studio because she is very flexible. (Will share pictures soon). Watching her dance is like watching a miracle take flight. I can't get enough of it.

WARNING. Shameless begging here. If you would like to help keep Ashley dancing. You can do so a number of ways. You can send a check to Studio 5D Dynasty Dance Company, 1303-1323 Winter Springs Blvd, Winter Springs, Florida 32708. Please put Ashley Johansen is the memo section of your check this will make sure it is deposited into Ashley's dance company account. The Dance Company is a not-for-profit organization. Or if you are not comfortable sending a check to the studio, you can always send the check to me with the same written instructions to our home address. You can email me at Laurie@cfl.rr.com for our home address. Also, we do a lot fundraisers by selling seasonal items. Right now we are selling Holiday Plants (Christmas and Hanukkah). The plants range in price from $10 to $29. If you are interested in purchasing these plants, please send me an email. We can ship the plant anywhere in the continental United States for $10.

Thank you so much for continuing to care about my daughter, even in the absence of regular updates. Your love is very much felt by each of us.

Oh Ashley wanted me to tell you that she got two female Betta fishes...Bleep and Blurb, a red fish and a blue fish. She is an ALL animal lover - reptile, mammal, domestic...tamed, wild...it doesn't matter, she loves them all.

Blessings to all

No New is Good News

2010-05-01T13:20:00.003-04:00

I know I know...it has been a long time since I have updated this blog. But I don't have to tell you that no news is good news. Really, seriously, things have been extremely calm. Oh I pray that I am not jinxing things here.

Ashley has been doing well, even though she has missed 26 1/2 days of school so far this year (we have 5 1/2 weeks of school left), she really has been very healthy. As a matter fact, her labs have been the best they have ever been since her diagnosis 11 1/2 years ago. Her white blood cell is actually normal, which means her body can finally start fighting off infection. Her platelet count is still really low which means still no P.E. for school or full gymnastics or other contact sports but that's okay because all she does is dance.

Speaking of dance, Ashleys life since late February has been consumed mostly of school and dance. She has competed her solo musical theatre dance routine three times so far this year and each time she has received a High Gold. The scoring is usually with Platnium being best, then High Gold, Gold, Silver, etc. We are extremely happy with Ashley's High Gold and she is too.

Can't Sleep Scenarios

2010-02-26T20:17:00.000-05:00

Sometimes as I am trying to fall asleep (like last night), I find my mind going into over drive instead of shutting off so I can sleep. The scenario's that I dream up of in my mind certainly keep me up at night. The horrible reality is some of these scenarios could really happen. Most of the thoughts that keep me up at night involve Ashley and sometimes Brad. Sometimes I start to fall asleep only to be startled awake with one of my scenarios or as I call them my "awakemares."

Scenario one: I am awakend with Ashley's screaming, not just any scream but a scream of fear. She is throwing up blood, not just like regular throwing up blood but like the Exorist throwing up. She is projectile vomiting all over her room. Of course, I run to her room, dial 911 and then try to erase that scenario and go back to sleep.

Scenario two: Before I go to bed at night which is usally three or four hours after the kids go to bed, I check on them, cover them up, turn off TV's (if any are on), shut closet doors (because I cannot stand to go to sleep with the closet doors open.) and then give them each a kiss goodnight while caressing their hair. This scenario involves me going into Ashley's room only to find her laying in her own blood. She's breathing but barely. Again, I shake my head to get rid of this scenario saying it will never happen and I try hard to believe my words.

Scenario three: Ashley is at a dance competition, she is dancing beautifully when all of the suddent she collapses and blood flows out of her mouth and onto the stage. I, of course, rush the stage and the judges get on the microphone telling anyone, someone to call 911. Again, I just shake my head to get rid of those nightmarish thoughts and try again to go to sleep.

Scenario four: Ashley and Brad are home from school for summer break, and I am at work when I receive a call from Brad hysterically yelling into the phone. He hangs up, and calls back but this time on the caller ID it has our phone number with 911 on the end of it. What is this emergency about? Is it something about Brad or Ashley? And as usual, I close my eyes tight, open them, and close them again praying that this scenarios outcome will not come to fruition.

Can these scenarios really happen? Unfortunately, yes. With Ashley's liver disease and so many unknowns, any of these scenarios could become reality. The bleeding episodes are my greatest fear. Because of Ashley's low platelet count she could very well throw up blood or worse bleed out and we will not even know it. And I have heard many families of children with Ashley's liver disease experience these realities.

These scenarios and many others are what keeps me up at night most of the time. The postive about dreaming up these scenarios is that I will be prepared. Or will I? Ashley's disease is such a mystery, I have no idea what is going to happen next. Or how old Ashley will be when it all ends either by liver transplantation or death. I prefer liver transplantation of course.

Do these scenarios grip my life and make it difficult to live normally? Not at all, they only make it hard for me to sleep. While I am going through the paces of my every "day" life, I hardly think of scenarios that are so nightmarish only scenarios that could, would, should help bring more money to my family or how I can find time to go back to school to become a nurse. Those scenarios I want to come true.

Heart Healthy

2010-02-19T23:05:00.002-05:00

Heart Healty...not exactly.

Last Thursday, I came home from work with a very blood shot eye. I have never had a blood vessel burst in my eyes so I was kind of freaked out by it. I remember driving home feeling tired, my eyes wanted to close and were very sensitive to the light. I took Ashley to dance, but was nervous the entire 30 minute drive to and from the studio. Went to bed later that night hoping and praying that my eye would improve over night but it didn't.

Friday morning my eye looked worse, and was swollen. Again, it was senistive to light and I only felt better if I closed them. But I drove the kids to their bus stop and myself to work. I worked until 3:30 that day (I usually get off at 1 pm), so I managed to do my job with one blood shot tired eye. However, while at work I researched what causes eye blood vessels to burst. The answer was sneezing, coughing and....high blood pressure. I hadn't sneezed and I wasn't coughing so I have high blood pressure.

I have had high blood pressure in the past, was taking meds to control it. But it had been a long time, a very long time since I had a good heart check up. I called my doctor and got an appointment for first thing Monday morning. The weekend came with lots of baseball and taking Ashley to and from dance rehearsals, I managed driving safely to and from everywhere I went.

Monday morning at the doctors office I learned that my blood pressure was through the roof 210/100. CRAZY! It was at that time that I become seriously freaked. Heart disease runs in my family; both of my parents suffered and suffer from heart disease. However, my doctor felt that even with a family history of heart disease and the fact that I only weigh 135 pounds (not overweight) at 5'5 1/2" , my age (44 years old, almost 45), I don't smoke, and I live a healthy life, that my high blood pressure was more than just hereditary. He ordered tests...lots of them.

EKG was normal.

X-Ray of the heart appears normal and nothing concerning.

Blood work all normal except my Alkaline Phosphate (AP) was high. This I know something about since I am the mother of a daughter with liver disease. The AP is usally an indicator of liver disease but can also indicate bone disease and other secondary diseases like kidney disease.

More tests are needed to determine why my AP is high.

The doc feels strongly that I have Renovascular Hypertension (Renal Hypertension); Hypertension caused by either Kidney disease or a narrowing of the main artery from the kidney to the heart. So therefore today I had my very first MRA with contrast. The MRA was to look at the arteries of my kidneys. I should get the results of that test next week.

And I also participated in a wonderful science experiment of collecting 24 hours of my own urine in a nice 2 gallon jug that was kept in my refrigerator. Such joy to take that jug with me to work. You should have seen it seat belted to the back seat of my mini-van.

Again, I probably won't get those results until next week.

After all of that I still have another test scheduled for March 4, and for the life of me I can't even remember what that test is or what it is for other than something else that will help the docs look closer at my kidneys.

Today, however, I feel fine. No tired eyes, no blood shot eyes, and my heart is still kicking and for that I thank God. As much as I miss my dad, I am not ready to see him for at least another 50 years.

My goal for the next month and for the rest of my life is to stay heart healthy. There are to many things I want to do on my bucket list and it is going to take me years to do them all. And I have two great kids that I need to watch live their lives and be there to enjoy them every step of the way.

Am I scared? Yes, but I have a great doctor who has made me his priority, his number one patient of the month. He is being aggressive and proactive. I just know we will get my blood pressure under control with or without surgery. However, prayers always help.

Living through Dance

2010-02-01T15:12:00.002-05:00

In just about six weeks Ashley will dance, not just any dance; she will be competing in a big regional dance competition by dancing her very first solo. It's completely amazing, seeing Ashley dance, watching her live through dance. When Ashley was born almost 11 1/2 years ago, I never ever thought, we never thought Ashley would live to dance much else do her first solo. I can't believe I am crying as I type this. I didn't think I would get emotional. It's just amazing!

When I put her in dance at age 3, I did it because I knew I needed to stop sheltering her. She needed to be around other children. She needed to feel normal despite what is trying to zap the life out of her; despite her disease. Honestly I never thought Ashley would be a good dancer or even a great dancer, I just knew dancing was safe; it was the one activity the doctors felt didn't put Ashley's life at risk. Little did I know how much dancing did and still does to heal Ashley. Ashley once told me, "Mom, dancing heals me." She has also said, "When I dance I forget I have liver disease."

Even as Ashley practices her solo at home at least once or twice a week and at the dance studio once a week, I still can't believe she is doing a solo. My baby, the baby no one thought would live to see her first birthday. The baby who almost died three times before the age of 6 months. The baby who spent her first two years in and out of hospitals and still continues her fight for life. I firmly believe that dancing is doing a lot to give Ashley strength, not just physical strength but emotional strength. Living through dance is what makes Ashley feel alive.

Just six weeks from now, Ashley will perform on stage alone but cheered on by many. And I will be in the audience sitting there balling my eyes out. Someone better video tape her performance because I am not sure I will be able to watch it through my tears!

Thanks Gaymarie, Danielle and Savannah. Thanks so much for believing in Ashley, in her ability as a dancer. Thank you!

New Year's Resolutions

2010-01-12T12:46:00.000-05:00

In my post found here I wrote about My New Life Resolutions. Today I am going to share with you just a few of my New Year Resolutions. These are just small but they will make a big impact.

1. Living without Soda - this is actually pretty difficult but so far I am doing well. I have decided to live without soda for two reasons. First, drinking Soda can easily put unwanted extra weight on my body, by not drinking soda I can easily loose 5 pounds. And second, I have very high blood pressure and I am trying to control my blood pressure with very little meds if none at all. Soda has proven to be a culprit in causing high blood pressure. My choice of drink now is water, lots of water; and if I want to flavor my water I use Crystal Light packets.

2. Reading my Bible daily - I profess to be a Christian and I am strong in my faith but I am embarrassed to admit, I have never read the Bible. I know Bible stories and a few Bible verses. I went to a Christian school and I grew up in a Bible believing family who went to church every Sunday and other special celebrations but I personally have never read the Bible. At Christmas, I purchased a Yearly Bible; this will allow me to read the Bible in a year. I am enjoying this resolution the most, I hope to come out of it in a year a better person and a stronger Christian; more God-like.

3. Keeping a Journal - in a sense I have been doing that here on this blog since the beginning but I haven't been real. My Journal will help me sort my anger, my thoughts, my insecurities (and I have a lot) and my faults (I have a lot of those too). My Journal will allow me to get real with my life, thus preventing me from ignoring issues or problems that may be elevating my blood pressure. Journaling or getting real has been difficult, I don't like to admit that my life isn't as perfect on the inside that appears to be on the outside.

Reading the Bible and writing in the Journal should go hand and hand, and I hope to combine those with daily devotionals as well. As for my New Life Resolutions, they are still in the works but I should be able to make an announcement within the next month or so.

Resolve to Help Others in 2010

2010-01-08T15:56:00.004-05:00

The article below was written by my friend, Rob Thrift, and was written for a small local paper here in Seminole County, Florida called the Seminole Chronicle. Make Rob's article an inspiration for you as you fulfill your resolutions this year, I know his article has certainly influenced me.

(Note: Remember the name Rob Thrift because I believe without a doubt that he will be running for office at the National level in the future.)

As we reflect back on 2009, we will, no doubt, view it as a year of daunting challenges. We witnessed unemployment climb to over 10 percent, multiple bank failures, countless American institutions file for bankruptcy, and several subsequently taken over by our government.

Our nation's debt level soared exponentially and housing foreclosures continued to be an issue. These issues, among many others, have certainly caused angst and a feeling of uncertainty among many Americans.

The question we must begin to ask ourselves is, "What do we do about it?" Many might say that the aforementioned issues might be beyond everyday Americans' power as individuals to address. But I would disagree.

I believe that with every challenge we as a nation or a community face, therein lies opportunity. The challenges we have faced and continue to face are an excellent time for our country to get back to its roots. Our country was not built by its government but rather by a belief system that better days lie ahead and a spirit of "I can" rather than "I can't."

As individuals we may not salvage the bankrupted institutions or provide jobs for every unemployed person, but each and every one of us can do something that in total will improve our country, our way of life and one's perspective on whether or not things are improving.

Therefore, in 2010 I would like to propose that everyone make it a year in which you resolve to do something positive for others. Undoubtedly, we all know someone who has lost a family member, become ill, lost a job or has other needs. It is that "can do" attitude and sense of community that makes Oviedo, a top 100 city, such a great place to live and raise a family.

All of us, no matter what our needs, are blessed to live in the land of opportunity. We can all do something for our neighbors, our community or our country as a whole. When we help others, we enrich our community and we help our country.

So, what can we do? For starters, we can volunteer our time. Get involved in a local youth sports league, mentor a child at our local boys and girls club or become a dividend in one of our many great schools. We can donate funds to a local charity or organize fundraisers. We can befriend a neighbor in need or engage in a random act of kindness toward a stranger. The list goes on and on. The point is we can!

Author Dr. Stephen Covey has been quoted as saying in life we should "live, laugh, love and leave a legacy." I have challenged myself to resolve to look for ways to give back. I am confident that in trying to enrich the lives of others, I will also be blessed with a life more filled with love and laughter. And I ask you, in 2010 and beyond, what will be your legacy?

From my family to yours, I wish you all a safe, healthy and prosperous New Year.

Inspired Change

2010-01-04T12:11:00.004-05:00

With the new year, many people are making New Year Resolutions and hoping that this year they will be able to stick to resolve their goals, I am no different. However, I have decided that I am not making New Year Resolutions I am making New Life Resolutions.

I have been Inspired.

Inspired by my daughter to do something positive. I have been inpsired by my son to make a difference. My children have been wonderful cheerleaders in my life, often encouraging me when I felt discouraged. There have been many times when they have said, "Mom, you can do it" and many times when I just felt I couldn't. For one reason or another I often failed at making changes, either due to lack of time, lack of money but mostly due to lack of committment.

No more excuses, I am inspired.

Changes are needed in my life and many of the changes I have planned will effect others including people I love and respect. But the changes are necessary in order to prolong my life and be the best mom and wife that I can be. Those people will be receiving emails or phone calls from me this week as I move forward with change.

One of the changes I have planned does involve this blog, Ashley's blog. Sometime in the next few months I will make a huge change to this blog which will also include a new name and a new mission. Don't worry, Ashley's main website will remain available on the internet until the domain expires sometime next year. Updates will still be available about Ashley's health but I will update using either a social network site such as facebook or an email list.

Ashley's heath and life with liver disease as well as Brad's gift for seeing my purpose in life has Inspired Change. One of the most exciting changes is finally acknowledging God's gift to me; my God given talent, instead of fighting it due to my own insecurities. As I research my options, and make a decision on how I want to initiate this change, I am also praying that I don't encounter stumbling blocks or worse, a brick wall. But most importantly I pray for support from those that I love.

Many changes will remain silent until I am ready to reveal them to not only you but to my family as well. This is necessary so that I may have a clear focus in order to organize my life. By having clear focus, I am able to make the best decisions for me, for my family, for our future. But first and foremost, my decisions must be mine to make without the influence or judgement of others. Will I seek approval from my family? Not necessarily but I will seek their support. As soon as I know my path, my husband and children will be aware and hopefully follow me down the path that has Inspired Change.

I am excited, and I hope that you will also follow me down my path to Inspired Change.

More later...

Today at Shands

2009-11-13T20:16:00.005-05:00

I am to tired to post anything lengthly so here it goes:

Ashley's bleeding has stopped, she has small varices/hemmoroids in and around her anus/rectum.

Ashley has very swollen tonsils, her GI doc called them kissing tonsils because they are that close together. (She does not have strep).

Ashley's labs are unchanged. Platelet count still low, white blood cell count still low as well as a few others.

Ashley goes back to Shands at the end of April as long as things remain stable.

Ashley will have minor exploratory surgery after school is out for the summer.

We need to get Ashley in to see an Ear Nose and Throat specialist for her frequent sore throats.

We are happy things are not worse. We are thankful she is home with only a low grade fever and "kissing" tonsils. We are happy the only new med added to Ashley's cocktail is an temporary antibiotic for whatever is causing her tonsils to "kiss". We are very thankful that Ashley's liver continues to fight to keep Ashley alive.

Medical Drama

2009-11-12T11:23:00.005-05:00

Ashley contitnues to bleed, source is still unknown. This bleeding issue has been off and on for almost a year now. She had labs drawn on Monday and her platelet count continues to drop. Her other blood counts are also off. We are hoping that once we find the source of the bleeding her counts will start to stablize.

We are leaving for Shands Hospital bright and early tomorrow morning to see Dr. A. He wants us to bring a fresh stool sample with us. (Let's hope I don't get pulled over by a cop. Can you imagine trying to explain what you have in a sealed container.) Collecting the stool sample should be interesting. If there is old blood her stool, Ashley could possibly be scheduled for both an upper and lower GI scope plus a colonscopy as early as next week.

The good news is that Ashley's liver appears to be holding its own. Liver enzymes are stable and the liver appears to be getting rid of bile as it should. Hopefully, we can keep her liver happy for a very long time. Statistically, however, a happy liver may not be possible. But we will just take one day at a time and not worry about those silly statistics.

Ashley and the Swine Flu

2009-10-25T10:19:00.002-04:00

Ashley came down with the Swine Flu or so they say. On Monday last week, Ashley comes home from school with a 99.8 temperature; I am thinking Strep throat. On Tuesday, morning she wakes up with a temp of 101; I am still thinking Strep throat. After a quick trip to the pediatrician, Ashley was swabbed and tested positive for the Swine flu and a left ear infection. By Tuesday evening her temp reached 103.7. Tamiflu was prescribed as well as an antibiotic for the ear should it get worse. Wednesday morning her temperature was down to 100.7 but she was full of energy and was dancing in the family room. By lunchtime on Wednesday she was fever free without any medical intervention. Knowing what we know about the Swine flu, we knew that the fever could come back the next day so she continued to stay home from school. However, her temperature remained normal on Thursday as well as Friday but her ear pain was worse so off to the pharmacy to fill the prescription for the antibiotic. She danced all day Saturday. Actually, she didn't really dance; she just marked her spot in the choreography for all her dance routines. With her equilibrium off dancing was not a good idea, no one wants a lopsided dancer.

My guess is Ashley did not have the Swine flu but a normal virus or maybe even the regular flu. She recovered quickly and never had any of the true symptoms of the Swine flu. Now we are hoping that she can remain healthy for the rest of the year but that is unlikely given her low white blood cell count and low platelet count. But one can HOPE and PRAY.

It is what it is

2009-10-10T09:46:00.007-04:00

This week we took Ashley to the pediatrician because she has a distended abdomen, complained of belly pain and was very pale. However, despite all of that she wanted to dance so she went to dance class on Monday night. Then Tuesday afternoon we were at the pediatrician. After an examination, a decision was made to have Ashley go in for blood work and an ultrasound. The thought was that her belly was distended due to ascites. Ascites is fluid accumulation in the abdominal cavity and is very common in patients with liver disease. Plus Ashley gained 3 pounds in less than a month with no growth in height. But before the ultrasound Ashley had labs.

Her blood work came back and although her liver function appears to be normal, her CBC's are out of whack. Her platelet count is the lowest it has ever been, 80 thousand (normal is 150K to 450K). A low platelet count means she is at risk for spontaneous bleeds. Her white blood cell count is also low (at risk for infections), as is her lymphocytes and her monocyts as well as her Hemocrit. What does that is mean? I really have no idea, and I wish I did. However, I am predicting that she just a virus that is causing these wacky numbers.

After labs she was then sent for an ultrasound, which had to wait until the next day because she needed to be without food for 8 hours. On Wednesday morning we drove to Arnold Palmer Hospital and Ashley's abdomen was scanned. I love watching ultrasounds, trying to figure out what the technician sees. But with Ashley's I can pretty much see things before the technician does, after looking at various ultrasounds of Ashley's abdomen over the last 11 years, I pretty much know what I am seeing. We noticed that her liver seemed to be even more scarred (fibrosis/cirrhosis) then the scan done in 2007 but she has no ascites. We also noticed her liver cysts also appear to be slightly larger but not to significant. However, her spleen has certainly increased in size which would explain her low platelet count as well. When a person has liver disease the spleen will eat up platelets instead of allowing them to stream through the body as they are intended, this can cause a low platelet count and an enlarged spleen. An enlarged spleen means that Ashley has physical limitations. Ashley's ultrasound was pretty much the norm for her, but the fact that her liver seems to continue to scar means that her liver disease continues to progress.

The pediatrician feels that Ashley should see a hematologist about her abnormal blood counts. He has sent her latest test results to her liver doctor at Shands Hospital. My guess is that Dr. Andres will not agree to a Hematologist consult but he will say it is what it is, and it is a progressing liver disease.

You know your house is old when....

2009-09-25T10:48:00.003-04:00

you still have all original appliances that the builder installed.

your original stove stops working and you can't find the part to replace what is broken.

your icemaker stops working and again you can't find the part to replace what is broken.

the shower door handle in the master bath breaks and you need to replace the entire enclosurer instead of just the stupid handle.

your power bill is in the $300 range and you don't have a pool to explain away the huge bill.

you look at the wallpaper in your kitchen and wonder what the heck possessed you to put wallpaper up in the kitchen.

We built our house 15 years ago, moved in at the end of October 1994. I think it's time we update our house, take some time off work to make some repairs. However, there are a couple problems with that; money and money.

On a more positive note: Ashley is going to be doing her first solo dance this year for competition. She will be doing a Muscial Theatre number. We don't know the music that she will be dancing too. And even when we do learn of the music, I am not sure I will share it here. You guys will just have to wait to see it on video.

Another Kind of Normal

2009-09-18T10:03:00.003-04:00

This was it, this was supposed to be the year that Ashley would get sicker and need a liver transplant. In 2006 around this time we were told that Ashley would more than likely need a liver transplant in three years. They said puberty would cause problems for her liver. They said she would start spending more time in the doctors office and at the hospital then at home and in school. They were wrong.

Ashley is doing really well. This year we have had only a few minor illnesses with sinuses and sore throats. She has some how avoided the Swine Flu. Ashley pediatrician, however, has her on the list to be one of his first patients to receive the Swine Flu vaccination. It's amazing how normal things are becoming. So normal infact that we have procastinated opening up a new fundraising account for Ashley with COTA (Children's Organ Transplant Association). But we are still trying to sell the last bit of her Love for Ashley Recipes for Life Cookbooks. Right now, I am busy doing fundraising of another kind.

We decided over the summer to allow Ashley to be part of the competitive dance company for Studio 5D. Ashley has been dancing since she was three years old and she has been dancing at Studio 5D for five years. She was part of the dance company a couple years ago but we pulled her out due to finances. It is quite expensive to be a member of the dance company. This year things are different. Studio 5D's competitive dance company is now a not-for-profit and we can now fundraise to help offset the costs associated with being a member of the dance company. So I have been working at various fundraising events to help pay for Ashley's membership into the company. Ashley is thrilled to be back in the company and cannot wait for the competitive dance season to begin.

We are so excited for Ashley, we have strong feeling that this is going to be a fantastic year for her not just with her liver health but with school and with dance. There are so many things she has to look forward to this year. I know her dad, brother, and I can't wait to see her smile on the stage as she does what she loves...DANCE.

Dance Dance Dance....Practice Practice Practice

2009-08-15T18:44:00.002-04:00

Just 11

2009-08-01T13:26:00.003-04:00

Ashley turned 11 years old a couple days ago on July 30. It is hard to believe how far she has come from the weak very sick yellow baby to this beautiful pre-teen. I remember when Ashley's surgeon came to us, told us that Ashley would only live to see her first birthday if she received a liver transplant in time; she was six weeks old at the time. Can you imagine? It seems so long ago but the memory is so fresh that it feels like it was yesterday. We were told to take her home, enjoy her for as long as we have her. But today she is eleven years and two days old...she made it well past her first birthday. Doctors don't know everything.

We celebrated Ashley's birthday surrounded by family in Alabama. Ashley adores being around her cousins especially the eldest girls, Marisa and Heather. These girls may be 5 and 6 years older than Ashley butI think they love being around her as much as Ashley loves being around them. Family is everything and I do not know where we would be today without their love and support during these last 11 years.

To Ashley:

Hey Baby Girl,

You know what? You are completely and utterly amazing. I love your smile and the way you say "I know, right" after everything I say. I love the way you keep trying to make mommy and daddy happy when you have already made us the happiest parents ever. You have brought so much to our lives with your strength, your will to live, your beauty and your love for all four-legged creatures. I love the way you call your brother, "Bradley" when everyone else calls him "Brad". I love that you are happy with who you are. I know it hasn't been easy, I know you want to be like everyone else; without liver disease but remember, you have liver disease it doesn't have you. I love that you want to keep dancing until you get it right, I love that you dance so hard and so often that it is hard for you to stand still for two seconds. I love that you worked for a year to convince your daddy that you "needed a kitty for your birthday. I love that when your daddy finally said yes that you couldn't stop smiling. I love the way you bundle Lily in a blanket and carry her around like a baby. Too cute. Ashley if you haven't guessed it, I really love you!

Happy Birthday Sweet Girl.

loveforashley.com

2009-08-01T12:49:00.004-04:00

Correction: The Love for Ashley website will be removed on August 15.

If you have tried logging onto Ashley's website, loveforashley.com, you may have noticed that it has been removed. We received notification that the domain and hosting was up for renewal and after learning that it would cost almost $200 to keep the website up for another two years, we decided it was best cancel our account and remove loveforashley.com from the world wide web. We will keep the blog going as long as it continues to be a free service. I hope to change the layout and the look of the blog soon. Hopefully, add some navigation to the blog as well. If I ever decide to republish the loveforashley website, you will be the first to know.

Pray for Stellan

2009-07-27T19:27:00.003-04:00

Please pray for little Stellan, his heart is beating way to fast (over 200 beats per minute) and he is fighting hard to hold on. His mom has a blog called My Charming Kids which I have linked here. Please visit her blog and learn more about Stellan and his fight.

Eight Hundred Thirty-Two and Eighty-Seven

2009-07-21T08:49:00.003-04:00

Eight hundred and Thirty-Two dollars and Eighty-Seven cents ($837.87), that is what it cost us for Ashley's recent trip Shands Hospital. One trip that only included an MRI with contrast and blood work.

Eight hundred and Thirty-Two dollars and Eighty-Seven sents for an MRI, gas, labs, meals, and parking just for Ashley to be at the hospital for a total of two hours at the least. A visit that takes us all day to complete.

Just one trip! Multiply that amount by 3 or 4 and you might have a better understanding of what we spend out-of-pocket on just Ashley alone for her visits to Shands Hospital Liver Clinic

That's $2,498.61 to $3,331.48 dollars out of our pocket each year just for her trips to Shands. That doesn't include the visits to her pediatrician which can be once a week or labs done at our local Quest Diagnostic Center (at least 6 times a year).

Okay now even more of a shocker...multiply that yearly amount by 11. That's $36,646.28. That's just only a fraction of what we have paid out-of-pocket on Ashley since she was born in July 1998; since she was diagnosed with liver disease.

You can probably take that $36K amount and multiply that by 2, that may get you close to what we spent during Ashley's first two years of life - about $73 thousand dollars.

None of these dollar figures include her medicines, which can run $200 a month.

Folks, this is our out-of-pocket expenses; after insurance claims have been paid. It's crazy stressful.

None of this includes Brad's medical care for his horrible allergies or asthma. It doesn't include dental care; braces or regular check-ups to the dentist. And it doesn't include medical care for Ashley's dad and me.

And what if Ashley were sicker? Can you imagine what our out-of-pocket expenses would be then? I can't, I don't even want to think about it.

How do people manage without healthcare?

Now you know why we are fundraising.

I am afraid of the ocean!

2009-07-07T16:33:00.006-04:00

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.

Kickin' Butt

2009-06-30T14:59:00.003-04:00

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!

For now the news is good

2009-06-26T19:25:00.003-04:00

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.

Eery Calmness

2009-06-23T21:34:00.009-04:00

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?

Much to My Surprise

2009-06-17T00:03:00.004-04:00

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 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.

She's a Little Pale

2009-06-11T11:42:00.004-04:00

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 extra work since her liver isn't working right. I would not be surprised if Ashley's platelet count is in the 80 thousands; normal is 140 thousand.

Stay tuned...

Needs No Words

2009-06-05T15:26:00.006-04:00

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.

Dance Recital 2009 -Studio 5D Winter Springs

2009-05-28T19:19:00.006-04:00

Ashley's dance recital is scheduled for June 13 and 14, below are some pictures of her in a couple of her costumes. This is Ashley's 7th dance recital. Below is her Jazz costume, dancing to "Kansas City."

These next group of pictures are of her Lyrical costume. She will be dancing to "Christmas Shoes." This number will certainly require a box tissues to watch, Ashley dances beautifully in this number. I can't wait to see it.

Bump - Update: Ashley's Liver Transplant Fund

2009-05-22T10:45:00.002-04:00

It's been a while since I posted any news about Ashley's liver transplant fund. After careful research and several phone calls to attorneys that went unreturned, we decided to move Ashley's liver transplant fund to COTA (Children's Organ Transplant Association). Right now, we are in the process of filling out the paper work. As soon as that is complete and her account is open will post a link on this blog.

We decided to go with COTA for several reasons. The most important reason benefits the donors; all donations to Ashley's fund through COTA will be a tax deduction. We also like that COTA works with the United Way, that way you can donate directly to Ashley fund via your employer and the United Way. They also allow you to donate to Ashley's account online using credit card, debit card, etc. The process to donate to Ashley's account through COTA appears to be a lot easier than the American Liver Foundation.

COTA will also help train volunteers to handle the fundraising efforts for Ashley when the time comes. I know there is a big fundraiser planned at the end of the summer. Our hair stylist, Crystal Lackey, at ESBI International Salon in Oviedo is planning what sounds like big affair to benefit Ashley. Of course, I will post more about that as I learn more.

If you need a great haircut see Crystal or any of the great stylist at ESBI in Oviedo they are very talented and I have never seen anyone leave that Salon with a bad haircut. ESBI is located between Outback and LA Fitness on Mitchell Hammock. Just a plug for my favorite Salon.

Our fundraising efforts have calmed down lately and we are not receiving many donations but a few dollars do trickle in every now and then. If you want to help Ashley now and can't wait for the COTA account to be opened you can purchase one of her cookbooks, we still have about 17 left. We would love to sell all of her cookbooks by the end of June. They make great gifts for aspiring cooks, or just people who love to cook. Lots of ethnic and easy cook meals can be found in the cookbook. If you want to order a cookbook, please fill out the order form found here.

Our goal with Ashley's fund is to not only raise enough to cover a liver transplant but to give Ashley enough money to cover medical expenses when she is no longer covered under her dad's insurance. The reality is that Ashley will always require extensive medical care with or without a liver transplant. And someday Ashley will be without medical insurance because of her liver disease. It's a scary thought but that is our reality. This fund will provide Ashley with a financially secure future at least with regard to her medical expenses.

Honesty, I wish we didn't even have to open up a fund for Ashley, I wish we didn't have to ask for help from friends, family and perfect strangers but we do; we can't do this on our own. We were in denial for the first 8 years of Ashley's life and it cost us finanically. We should have been fundraising for Ashley's medical care as soon as she was diagnosed with her liver disease almost 11 years ago. Denial helps us cope but sometimes denial gets in the way of doing what is right.

ORGINAL POST:
In the last few months we have been made aware of some errors with Ashley's transplant fund with the American Liver Foundation. It is due to those errors and other reasons that we ask that you no longer donate to Ashley's fund with the American Liver Foundation. Currently, we are looking at opening a trust fund for Ashley with our local bank, Fairwinds Federal Credit Union. As soon as we find an attorney willing to handle the paper work for free, we will share that information with you. In the meantime, please donate to Ashley's trust fund using her PayPal link found above. Thank you.

ALF vs COTA - Loosing Sleep

2009-05-12T03:20:00.005-04:00

What would keep a person up past 3:30 am?

Decisions...

As most of you know we have been using ALF (American Liver Foundation) for Ashley's Liver Transplant Fund. However, in the past year, we have found that ALF is not offering us what we need among a few other reasons which I will not blog about. When we opened Ashley's account with ALF we did so quickly after the death of my dad during Christmas 2006 and New Year 2007, we did not have time to research the best fundraising organizations.

There are so many organizations out there from ALF, COTA, NTAF.

But because of my dad's untimely death and because his dying wish was that friends, family, etc. donate to Ashley to help defray our medical costs, the first organization that came to mind was the American Liver Foundation. After all, Ashley does have a liver disease.

Now, both my husband and I are wondering if we should have used COTA. We have also thought and inquired about opening up a local trust fund for Ashley. However, since we did not get any help from any local attorneys we decided to move on. (Called several local attorney's over a three month period and not one returned a call). No, I am not naming names so don't ask.

After reviewing the website for COTA, we have decided to contact them for more information. My only concern with COTA is we would need a fundraising committee. My husband and I both feel strange asking friends to be a part of the committee; we don't want them to feel obligated. On COTA's website they say a successful fundraising campaign starts with a successful fundraising committee. And we all know success equals more $$ for Ashley and less worry for mom and dad.

At Ease

2009-05-08T16:26:00.003-04:00

One of my biggest worries at the present time is Ashley's transition to middle school. My worry goes beyond my baby girl going on to middle school. My worry is that the teachers and administration at the middle school will not be as accommodating with our concerns regarding Ashley's health. The staff at Ashley's elementary school spoiled me and certainly helped ease my fears when Ashley started elementary school in 2003.

Since Ashley's liver doctor does not want Ashley to take PE next year, I felt it was important to set up a meeting with the school administrators, 6th grade counselor and the school nurse before the new school year. Today at 2 pm I walked into the school office a little nervous that I would not be able to protect Ashley while she was in middle school. After the meeting was over I left relieved that Ashley will be good hands at her new school.

The school not only accepted that Ashley would need to be exempt from PE because of health issues, they also came up with a plan that would help me and Ashley should she get sick at school. Normally the school's policy is to send the kids back to class if they are not running a fever, with Ashley that is not acceptable. The middle school administration assured me that Ashley will not be sent back to class for any reason unless I say she can be sent back to class but only after the school contacts me. They are creating an entire new system to insure Ashley's health at the middle school is a priority when needed, a different protocol will be in place just for my baby girl.

In August, a week before school starts I will meet with all of Ashley's teachers to introduce them to Ashley and to help them understand Ashley's health and how they can work with me at taking care of her while she is in their class. We live 40 minutes away from the middle school so it is very important to me that I feel comfortable leaving my daughter's care in the hands of strangers.

The one thing I hope Ashley's teachers remember is that they may have 2o something kids in their class but the only child that matters to me is Ashley. I don't care how the other children are treated or how they behave or what the teachers feel is normal or acceptable for their students, I only care about my daughter! I know my daughter, they don't. I parent my daughter and they don't. I discipline my daughter and they won't. Open communication is key, I am not going to tell them how to run their class and they aren't going to tell me how to treat my daughter. I am protective, aggressive and proactive when it comes to my children. I have great kids so obviously I am doing something right.

I am at ease with Ashley's move to middle school, now if I can only feel at ease with Ashley's health.

Cookbooks Revisited

2009-04-27T12:16:00.002-04:00

Since we only have 20 cookbooks left to sell, we have decided to drop the price from $12.95 to $10. Please order your cookbook today. The cookbooks make great Mother's Day gifts. Create a gift basket of cooking supplies and include one of Ashley's cookbooks. What a keepsake and memory from you with love.

If you are interested in ordering a cookbook, please send an email to loveashley@loveforashley.com.

Thank you and God Bless.

No More Dance

2009-04-23T14:41:00.004-04:00

Sometimes I wish Ashley had a talent in something that didn't cost so much money. I mean geez we spend on Ashley's dance classes in one month, what we spend on one of Brad's baseball teams in one year. Yes, I have brief moments of wishing there was no more dance. But then I see Ashley's love for dance and realize that the sacrifice of paying for Ashley's dance classes, the dance costumes, etc. are worth every penny. I mean how can you say no to this Ballerina?

Stable Liver equals Normal Life

2009-04-10T21:25:00.005-04:00

Ashley's appointment at the liver clinic today went well. We have a plan in place and it may just give Ashley a more normal life. Hard to believe but we are optimistic. Is it really possible for Ashley to have a normal life? Not really, she does have a serious life threatening liver disease but she can have a much more normal life than she has experienced in the last 10 1/2 years.

Before we can experience a new normalcy a few things need to happen. First, Ashley needs to have an MRI to see if her liver cysts have changed. Second, Ashley's labs need to be stable for 6 months. And third, Ashley needs to stop bleeding rectally when she stools. If Ashley can accomplish this it means that we would not have to go back to the Shand's Liver Clinic for two years.

Here is how we are going to accomplish the above. Ashley will have an MRI this summer; sometime in June or July. She will have labs done again in August. And she is on a low starch diet to help her with her constipation issues to see if that helps prevent the rectal bleeding. Keeping Ashley away from starchy foods may be difficult because she loves bread, french fries, chips and especially mashed potatoes but we will help her by also being on a low starch diet. Hey, we can stand to loose a few pounds.

If Ashley's cysts have not grown, if she experiences no bleeding and if her labs remain stable as they have been, we can experience a new normal-a better normal by 2010. This does not mean that Ashley will be off her meds, it does not mean that Ashley will not have blood work anymore, it does not mean that she will not ever need a liver transplant. It only means that we can be normal for a while, until the other shoe drops; if it drops. Of course, all of this could change when we get her most recent lab results; the other shoe could drop before we even begin to experience our new normal. But we are optimistic!

Not surprisingly, Ashley's GI does not want Ashley to participant in PE next year when she starts 6th grade. He said what I was thinking, "We don't need a senseless accident to cost Ashley her life." He said that with Ashley's big spleen and liver, plus her low platelet count she is at a greater risk for internal injury should she fall, or someone should accidentally hit her in her abdominal area. So PE is out especially since PE in middle school is much more than playing kickball or running laps around the field.

Okay so maybe Ashley's life will never be normal. But we are happy with a chance for better than our normal. We can live with that!

New Job, New Hope

2009-04-08T09:06:00.004-04:00

The kids are on spring break this week and as luck would have it I am working my second full week at my new job; great for me not so great for the kids. My only day off is Good Friday but unfortunately we will be spending that day at the Shands Hospital Liver Clinic. But I have to say it has been a blessed week. In today's economic times, I am blessed beyond belief to have a job that fits perfectly with my family life.

A new job you say?

Yes, I interviewed for this job in January, they hired someone else and prayers were answered when they offered me the job just about two months after they interviewed me. The blessing is not only a new job but the person I replaced. The person who trained me, is a sweetheart and it was kind of sad to see her go. We became friends instantly. We believe it was a divine intervention.

My new job is working as secretary for the pastor of a small Baptist church. It's a perfect fit, I work part-time from 9 am to 1 pm and it offers flexibility. The flexibility part is important because of Ashley's unpredictable health. It was hard finding a job not just because of the national unemployment rate but because I couldn't and wouldn't accept a job that did not fit my needs; the needs of my family. As much as I needed a job, it had to be right for me and not just a job that paid well.

I have to say week two of my new job has proven that this job is truly a PERFECT fit. Thank God.

Off subject but not really.

April is National Organ and Tissue Donation Awareness Month. If you haven't done so already please sign an organ donor card but it is even more important to tell your family that you want to be an organ/tissue donor. Tomorrow I will post the Facts/Fiction of organ and tissue donation. But I want to leave you with one thing to remember:

18 people a die each day because someone said no to organ donation. You or someone you love could be one of those 18 people; maybe not today but someday. Think about it.

Special People need Special Prayers

2009-03-31T20:26:00.003-04:00

I know I don't have a big readership on this blog; my readers may be small but they are big in heart. I am asking all my readers to pray for some special people.

Please pray for Aiden and his family. I have talked about Aiden before on this blog, so his story should not be new to my readers here. However, to give a quick background on Aiden; he is a cute little guy who received a liver transplant as a baby due to the same disease that is attacking Ashley. Although, Aiden's transplant was a success he has been diagnosed with another rare disease called Dysautonomia. Right now, Aiden and his family are miles from their home in Ohio from St. Petersburg, Florida trying to find medical treatment for Aiden. Right now, Aiden's family is not having a good day. Aiden's daddy is sick; throwing up and just feeling like crud. No one likes to be sick miles from home, but a parent especially doesn't like to be sick when you are trying to take care of some very special little people. Aiden and his family need your prayers. You can read about Aiden and learn about Dysautonomia by visiting his website here.

Please pray for MckMama's MckMuffin, Stellan. Stellan is a beautiful 5 month old baby boy. He is such a miracle from God in every true meaning of the word. However, Stellan, has been in the hospital for a couple weeks dealing with a very fast heart rate of about 300. Stellan's doctors are trying very hard to keep Stellan from going into heart failure. Stellan needs your prayers. Stellan's mom is amazing and at testament to God's love, please visit her blog at My Charming Kids.

Thank you so much for your prayers. I know both of these families truly appreciate them.

Ashley has Blood in her Stool

2009-03-30T22:51:00.006-04:00

Not the topic of choice for the blog but it is what we are dealing with now. However, we think the blood in her stool is from constipation and not related to her liver disease. Since we think the cause is constipation we increased her dose of Miralax and made her drink that nasty concoction in 5 minutes. We are hoping that increasing her dose of Miralax plus forcing her to drink more fluids will clean out her system. Only time well tell.

Ashley is not one to drink, although she loves chocolate milk; not exactly the drink of choice when you are constipated. She loves food and would rather eat than drink. But her lack of love for fluids; I think, is causing her constant constipation. If anyone has any ideas on how to get Ashley to drink anything but chocolate milk and sodas, please let me know. I am on the verge of sticking an IV in her arm or maybe I can purchase one of those drink hats.

Of course, we would need to replace those Coke cans with bottles of water. Maybe Ashley would drink more water if she was forced to wear this funny hat. Hmmm...could work.

On the liver front, Ashley is scheduled to go to Shands on Good Friday, April 10. Right now, she is scheduled to go to the liver clinic only but she may also require an ultrasound. Actually, I am going to recommend that she have an ultrasound due to her bloody stool episodes these past few months. During this appointment, I want to plan her next visit to Shands for an MRI and possibly an upper and lower endoscopy this summer. Also on tap to discuss during this visit is Ashley's physical activity restrictions for the next school year.

Ashley will be in 6th grade next year and will be required to dress out for PE for one semester. However, most of the activity in PE is contact sports, basketball, soccer, flag football, etc. These are activities that Ashley cannot participant in due to her enlarged spleen and her low platelet count. With the amount of contact involved in the PE activities, I am not sure it's safe for Ashley to take PE. However, I will discuss this will her liver doctor while we are at the liver clinic. My hope is that if Ashley's doc says "No" to PE that the school will either allow her to take an elective in place of PE and accept her 6 plus hours of dance a week as a PE credit.

Ashley starting middle school brings a whole new set of worries and concerns.

Are you ready for some good news?

Ashley made straight A's on her report card. She made straight A's despite the fact that she missed 20 days out of 47 in this grading period. I am so proud of her; she worked hard and deserves all the praise I can give her.

Are you ready for more good news?

I finally got a job. It's not much but in this struggling economy I am blessed to have it. It's perfect hours, I work 4 hours a day while the kids are in school and the pay is decent. I have my own office and I am doing what I love, managing a church website, designing bulletins, newsletters, etc. God has certainly blessed me with this job and I am grateful.

Can you stand more good news?

We finally paid off our car loan!

Things are finally looking good for this family. After several years of bad luck, we are finally seeing the light at the end of this very long and dreary tunnel. I pray that I am not jinxing things by sharing our good fortune here on this blog. I owe everything to God. He has been carrying me for so long, holding me in his hands and I have had faith that He will take care of me.

My faith in Him continues....

Last Day to be Pampered

2009-03-28T22:06:00.002-04:00

On Tuesday, March 31 the Pampered Chef Fundraiser for Ashley comes to an end. You have until midnight on Tuesday to place your order. If you need something unique and of good quality for your kitchen, please order from Pampered Chef. A portion of your total purchase will be given to Ashley's Medical and Liver Transplant Fund.

To place your order, click here http://www.pamperedchef.biz/jamieearly?page=host-search-results&showId=1978042

Thank you for your support.

Laurie, Ashley's proud Mom!

Something funny but Ashley doesn't think so

2009-03-06T13:40:00.004-05:00

A few days ago Ashley came home from school and was organizing the kitchen table to prepare for homework. As she was removing supplies, books, etc. from her backpack she began to cry. Ashley came home from school complaining of not feeling good so I just thought maybe her head was hurting. I asked her if she was feeling sick and she said no. Then the tears started to fall harder.

Me: Ashley why are you crying?

Ashley: I don't know. (Crying even harder as she placed her math book on the table).

Me: Does your head hurt?

Ashley: No, I don't know why I am crying. (Crying with gasp between breaths).

Then it finally hit me, I know exactly why Ashley was crying. She was experiencing another sign of puberty.

Me: (Trying not to laugh as Ashley keeps repeating).

Ashley: Mommy, I don't know why I am crying, why am I crying. Mommy, what's wrong with me?

Just as quickly as Ashley started crying, she stopped. Then I knew it was time to tell her why she was crying. I explained to her that when girls go through puberty their mood changes, they can be happy one minute and then the next minute they are crying or mad. She asked me how long it would last and with a big smile I said, "Mommy is almost 44 years old and I still experience those mood changes."

I thought she was going to cry again but she started laughing and said she was relieved. "Now," she said, "I know why my friends are mad at me one minute and then are my best friends again the next." "I thought I was doing something wrong." "But we are all the same age so we are all moody."

That was that...and she sat at the table and finished her homework mood changes and all.

The Climb by Miley Cyrus

2009-03-03T10:35:00.008-05:00

This is Ashley's new favorite song; she has been talking about it for weeks. She has been asking me to see the video so this morning I decided to check it out on YouTube. I could not stop crying while watching this video and hearing the words sung by Miley Cyrus.

This song is a perfect song for Ashley, it tells her story. This song is now Ashley's new theme song. There are so many mountains Ashley has left to climb but she WILL move those mountains one at a time!

Ashley said that this song would be a perfect song for her first dance solo. Could it happen? Do we dare dream?

The lyrics:

I can almost see it
That dream I’m dreaming but
There’s a voice inside my head sayin,
You’ll never reach it,
Every step I’m taking,
Every move I make feels
Lost with no direction
My faith is shaking but I
Got to keep trying
Got to keep my head held high

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Sometimes you going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

The struggles I’m facing,
The chances I’m taking
Sometimes they knock me down but
No I’m not breaking
The pain I’m knowing
But these are the moments that
I’m going to remember most yeah
Just got to keep going
And I,
I got to be strong
Just keep pushing on,

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Sometimes you going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Sometimes you going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

Keep on moving
Keep climbing
Keep the faith baby
It’s all about
It’s all about
The climb
Keep the faith
Keep your faith

What would happen if...

2009-03-03T09:25:00.006-05:00

What would happen if I decided not to give Ashley any of her medications? Would she get sicker, would she stay the same?

What would happen if I threw caution to the wind and let Ashley do a round off back hand spring off the balance beam? If I let Ashley ride a horse, what would happen?

What would happen if we didn't take Ashley to the liver clinic four times a year? What would happen if just one time Ashley didn't see any doctors for an entire year?

What would happen if Ashley didn't have labs drawn "to many times to count" each year? Would Ashley forget what it's like to be a pin cushion?

What would happen if I believed what the doctors say about Ashley, about biliary atresia? Would Ashley be doing as well as she is if I fully believed in medicine?

What would happen if 11 years ago I did not want to know the sex of my baby? Would they have been able to save her? Would the choledochal cyst been found and would biliary atresia been diagnosed on time?

What would have happened if Ashley had been born in the 60's instead of the 1990's? Would there have been hope?

What would have happened if we did not have doctors familiar with biliary atresia treating Ashley?

What would have happened if we did not have the Internet to learn about biliary atresia, liver disease, liver transplant?

What would happen if I just said forget it, I want our life to be normal, I want Ashley to be normal?

What would happen if I felt alone?

What would happen if I didn't have faith? Faith in doctors, faith in God, faith in my responsibility as a mom, and faith in Ashley.

Last night as I was attempting to fall asleep this is what I was thinking. We aren't overwhelmed with Ashley's disease or having to take care of her but sometimes I just wonder what if. Ashley does ask me at least once a week why she can't be normal, do things that normal preteens do. She has begged me to stop being overprotective. So I went to bed thinking, "what would happen if."

Dancing is who I am, it heals me.

2009-02-25T09:29:00.002-05:00

I am not sure what Ashley means by that, "Dancing is who I am, it heals me" but she said that to me the other day. She has told me in the past that dancing helps her forget her liver disease but she has never said that dancing heals her.

Ashley is not a natural dancer, she isn't graceful but she most certainly does not have two left feet. She has problems spotting when she turns, she has problems pointing her toes when she leaps, and she has hard landings after leaping. But Ashley is extremely flexible and even though she has problems with pointing her toes when leaping, she has beautiful feet when she dances.

In the last two years, I have seen such growth in Ashley's dancing ability. Each day Ashley learns to love dance even more. I was afraid that pulling Ashley out of the dance company would have an adverse affect on her dance but if anything pulling her out of company makes her try harder to be a better dancer. After all, her goal is to be back in the dance company next year. And if we can financially swing it, she will be back as a Studio 5D Fifth Dimension Dancer by fall.

Ashley knows what she needs to do to be a better dancer and we are working on that at home and privately. She really wants to dance. Give her a choice to dance or not dance and the answer is always dance. Ashley tells me that her dream with the dance company next year is to either do a duet or a trio, I hope next year she will be ready to make her dreams come true.

One of the things I have noticed about Ashley is that she dances beautifully when she doesn't think about it; when she is relaxed. Watching her dance reminds me of the show, Flash Dance, where the main character would do phenomenal dance techniques without formal training. There is a scene where the main character is standing in front of a window (I think) and does this beautiful, graceful pirouette. That's Ashley; she will stand in front of the TV and without thinking do a beautiful graceful double pirouette. Her spotting is on target, her hands are graceful and elegant and she has this look of complete peace. It's like she is dancing from the soul.

Maybe that's what Ashley means when she says "dancing is who I am, it heals me." Maybe she means that it heals her soul.

This is about Brad.

2009-02-23T13:00:00.000-05:00

Having a pre-teen son is filled with all kinds of challenges. Actually, maybe I should say teenage son. Brad will be 13 in June, what's a few more months, right? Brad is showing an interest in girls...one in particular. He has a huge crush on her but I am not so sure the feeling is mutual. I know this girl likes Brad, "like a friend." How do I tell Brad that his girl possibly has a crush on someone else? My instinct tells me to just leave it alone. She doesn't know he likes her and he doesn't know she has a crush on someone else. Let them be friends, after all they are only 12/13 years old. Who needs a boyfriend/girlfriend at 12/13 years old anyway.

There - the problem is solved...my thoughts will remain my own. Was this a problem, anyway?

The funny thing is Brad has always had girls chasing after him. I mean how can you resist, just look at that face. Even as a baby, little girls just loved him. One year, I worked in the school Brad attended while in 3rd grade, these girls would run up to me asking me for his phone number. Geez louise, when I was in 3rd grade I thought boys had cooties. Now, Brad is in the 7th grade, he is more mature than most boys his age, he is smart and not bad looking so again girls love him. He has more girl's phone numbers saved on his cell phone than guys. But Brad also has a lot of friends that are guys.

Don't worry folks..I monitor Brad texting habits. As a matter of fact, I look through his text messages every night before I go to bed. I also look at the pictures he has saved in his phone album. Brad knows I read his messages. I bought the phone and I pay the bill, therefore I have every right to see how he is using the phone.

Brad is really a good kid, I trust him but I can't give him complete trust after all he is still a child. And I remember things I did at age 13. But we really don't want to go there because this isn't about me, this is about Brad.

Speaking of Brad...and I am...and we are. He is home sick. Yes, my very healthy boy is home sick. He woke up with a 100.7 temperature. I took him to the pediatrician and he was diagnosed with bronchitis. I am sure having Brad play in three baseball games this weekend in cold weather did not do anything to help his cold. So now Brad is home curled up on the couch, with long sweat pants on, a hoodie over a tshirt, socks to keep his feet warm and wrapped up in two blankets. He even has the hood over his head. This kid is sick!

I am so tired of the sickness in this house. While at the pharmacy picking up Brad's meds, I also picked up some multivitamins for the kids that have extra immune boosting power. Let's see if it works.

Imagine that Ashley's Sick Again

2009-02-18T08:43:00.008-05:00

Today Ashley was supposed to go to the Shand's Hospital Liver Clinic. However, she came home from school yesterday saying she threw up in her class bathroom. No, my very smart intelligent daughter did not tell her teacher which means she did not go to the school clinic which means I did not get a call from the school to pick her up. So as we are driving home from school yesterday afternoon, Ashley informs me that she lost her lunch in the class bathroom. I rolled my eyes because of course she would get sick the day before we leave to go to Gainesville to see her liver doctor.

It's been running around, this virus, at every school in our county, everyone is sick...the kids, the teachers, and even some parents. It seems however that Ashley has been sick with something since Thanksgiving, I can't seem to keep her well. We keep our house clean, sanitize, practice good hand washing and hygiene so why is Ashley getting sick?

Last night my husband and I contemplated on whether to cancel Ashley's appointment or if we should go ahead and take her to the Liver Clinic...fever and all. We decided we would wait to see how Ashley was in the morning. Well, Ashley got up this morning to get ready for school, ate breakfast and went right back to bed...she is still asleep as I type this. I took her temperature, not alarmingly high at 99.3 but for her a temperature none-the-less since her normal temp is 97.3. We then decided to cancel her appointment at the liver clinic since the last thing we want to do is get anyone else sick or put Ashley in an atmosphere where she will get sicker or worse come down with some other illness. Everyone knows that hospitals and doctors offices harbor more germs, viruses, bugs than anywhere else. We can always reschedule the appointment for a later date and time, when Ashley isn't sick.

We did get Ashley's lab results back. They are not horrible but not great either. Great would be normal lab results and of course Ashley's are not. The good news is that her liver functions are all normal. However, she appears to have some liver inflammation because her AST and ALT are elevated slightly. Her platelet count is as usual low but it is now lower than the last results, her platelets are at 107,000 (normal is 140,000 to 400,000). For those of you who aren't versed on liver disease a low platelet count just means that Ashley's platelets are being eaten up by her spleen which is why Ashley has a huge spleen. A low platelet count also means that Ashley has thrombocytopenia. Ashley's white blood cell count is low, which indicates an infection. And Ashley's absolute lymphocytes and monocytes are low.

The latter two are a new low for Ashley. When I first researched these I had a slight panic when I read and I quote, "a low absolute monocyte almost always indicates cancer." Since I knew that this was not the case for Ashley I continued my research and found something that answered my question. When a person has a low monocyte it means they have an infection when their lymphocyte is low it means they have the inability to fight off that infection. This makes sense. With Ashley's low white blood cell count, low absolute monocytes and lymphocytes, she has a viral infection. A viral infection is much better than cancer. I can deal with a viral infection; cancer not so much. Can you imagine...dealing with two life threatening diseases...cancer and liver disease. NIGHTMARE!

I need to go check on my little girl. Pray with me that she doesn't get worse.

Cookbooks, Ashley and Field Trips

2009-02-10T15:56:00.003-05:00

First things first, I have 27 Love for Ashley, Recipes for Life cookbooks left. The cookbooks are $12.95 each plus $5 for shipping. If you would like a cookbook, please send me an email at loveashley@loveforashley.com. Remember, by purchasing a cookbook you contribute to Ashley's medical fund and transplant fund. So please buy a cookbook today. Please tell your friends and family, post information about Ashley on your Facebook page, MySpace....send a mass email to everyone on your address book...please help me get these cookbooks out of my living room.

Now Ashley was originally scheduled to go to Shands Hospital/Liver Clinic yesterday, February 9. However, we have reschedule it for Wednesday, February 18. Ashley will have labs done tomorrow and we will also submit a stool card to her pediatrician for testing (Ashley still has small amounts of blood in her stool). Right now, I am not sure what the plan is for Ashley's visit to the liver clinic other than the normal exam. Her liver doctor, Dr. Andres, wants to look at her lab results before deciding what to do next; ultrasound, MRI, scope, etc. I am guessing that Dr. A will get Ashley's results Friday, and then he will contact me on what he plans for Ashley in the liver clinic on Wednesday, February 18.

The good news is Ashley is doing really well. Right now, she is suffering from sinuses; runny nose, cough, etc. and she continues to complain daily about headaches but on the liver front she is doing well. So well infact that I plan to discuss with Dr. A. a schedule change regarding Ashley's visits to Gainesville/Shands liver clinic. My plan is to convince Dr. A that Ashley be seen in the liver clinic once a year during the summer, with labs done 4 times a year. If Ashley's labs indicate the need for an additional trip to the clinic then we can address it at that time. During the once a year visit to the liver clinic, I would like Ashley to have an ultrasound and/or an MRI to monitor her liver cysts/nodules, the size of her spleen, her kidneys, blood flow through the portal vein, etc. It sounds good; less visits to the doctor, less money spent on trips to the doctor and Gainesville but it may be difficult to convince Dr. A that this will work at keeping Ashley healthy and stable.

Ashley and I have a busy week, tomorrow we have a weekly mommy and daughter lunch at school. Thursday she has a Mud Walk at our local Environmental Center. The Mud Walk is a traditional rite of passage for 5th graders in the Seminole County Public School District. And it is exactly that...a mud walk; the kids, teachers and chaperone's are walking knee deep in mud. Yes, I am a chaperon. Friday, we will have another field trip back to the Environmental Center for what is called "Dry Day". Dry Day is more of learning experience for the kids, they learn about Florida's environment specifically the environment they live in now. It should be fun, I will post pictures of the Mud Walk so you can see just how dirty we get. Personally, I hate the idea of walking through mud; I hate getting dirty. I am stressing out about what to wear and I am worried about Ashley's health walking through the mud but I can't deny her this activity. These kids look forward to this day starting in Kindergarten. I guarantee you this...Ashley will be taking a shower as soon as we get home.

Once I get Ashley's lab results back I will post again. In the meantime, thank you for visiting the blog for Love for Ashley, we hope you come back again.

Planning Ahead but not Making any Promises

2009-02-05T10:16:00.005-05:00

There is only 4 months left of school, 4 months left to plan a summer vacation, 4 months left to enjoy some free time without kids. As the kids get older it has become harder to plan ahead for anything because of their activities. we planned to go home during Spring break to see family in Mobile, Alabama but now that is not going to happen. Brad has a baseball tournament scheduled for the weekend after Spring break and of course he will have practice during Spring break. Ashley and I are planning to go to Lakeland, Florida to watch the Studio 5D Dance Company compete at Star Quest which is the weekend before Spring break. So now we are planning ahead and hope to be in Mobile sometime this summer but we aren't exactly sure when.

School is out for the summer on June 5. Brad will have the All Star Baseball Tournament sometime during the first or second week of June and then his AAU Baseball team will more than likely have a couple of summer tournaments. Ashley will attend a summer dance intensive camp for two weeks which is usually scheduled either in June or July. The kids also attend and work at Vacation Bible School which is the third week in June. Which only leaves the month of August to plan a trip to Mobile. School starts August 24 but registration, schedule pick-up and open houses will begin the week before so that means we only have two weeks at the beginning of August to plan any type of vacation whether it be going home to Mobile to see family or just having our own family vacation. Of course somewhere in all of that mess, Ashley has a check-up at Shands in Gainesville, Florida. And I thought summers were for relaxing!

We try to go to Mobile two times a year, once during the summer and again at Thanksgiving or Christmas. However, going to Mobile two times a year is becoming increasingly difficult because of the kid's activities and Joey's work schedule. I know we upset some family members because we can't plan our vacations to coincide with theirs but at times it is impossible. Actually, they need to be thankful that we go to Mobile each and every vacation instead of taking our own family vacation away from Mobile which is what we really want to do at least once a year. However, out of obligation and guilt we go to Mobile. Does anyone else have this problem in their family and how do you deal with it?

When Joey and I plan our vacations we do it together, it's not something one of us plans without the other. It's hard sometimes to make everyone happy including each other but we have learned over the years to compromise and when we can't compromise we live with the consequences of our decision. It think it's harder for me than it is for Joey because he really doesn't care what we do or where we go; I am the one that has the guilty conscience if we decide not to go to Mobile for our family vacation.

And really, is going to Mobile a family vacation? We don't do anything there, the kid's see their cousins which is fine and dandy. I get to my sister's and mom, and Joey sees his sister's and mom which again is fine and dandy but where is the fun in that. Unless you consider the family drama fun. We don't go sight seeing, there is no amusement park to visit, there are no days lounging around on the white sandy beaches of the Gulf of Mexico. It's just days and days of the kids going from one cousin's house to the next playing video games...how exciting! Don't get me wrong the kids love seeing their cousins but as Brad put it one day..."it gets boring." My kids are use to doing and going not sitting and mopping around.

So even though we as a family want to do something else for vacation besides go to Mobile, we don't want to hurt any feelings and will be going to Mobile, planning ahead but not making promises.

Looking forward to chaos, conflict and planning ahead...

Dress Auction

2009-01-31T10:31:00.003-05:00

The dress auction deadline has been extended until April 12, 2009, Easter Sunday. I have had a few bids but the bids have been for the same dollar amount. These dresses are beautiful, here is a picture of Ashley in the white dress at her Aunt Laura's wedding; Ashley was the flower girl.

Adopt-A-Child

2009-01-26T16:35:00.004-05:00

Yesterday, Ashley and I attended a concert at our church featuring Perry and the Poor Boys. The music was terrific and we especially like the song Ransom. Brad would have enjoyed the guitar solo but unfortunately he was at baseball practice. The concert was great as we love to listen to contemporary Christian music. It was neat watching Ashley sing the music, dance and clap to the beat. When children feel the Holy Spirit they just can't hold back.

After the concert they had a nice display of the Band's CD's, cross necklaces and other collectibles. Plus they had a table devoted to World Vision, Child Sponsorship Program. The band works closely with World Vision and with each concert they try to get the concert goer's to adopt-a-child. I was surprised when Ashley said she wanted to adopt a little girl and not get a CD or purchase a necklace. So Ashley adopted a little girl named Cinthya from Ecuador, who is not quite 2 years old. Cinthya is the youngest of 6 children; she has five brothers. For $30 a month Ashley has adopted a little sister.

For the first donation to Cinthya, Ashley used $30 of the money she has been saving to buy her RagaMuffin kitten. When we got home from the concert, she proudly showed her daddy the little girl she adopted and asked that we each donate 25 cents a day to help Cinthya and her family. Ashley has set up a piggy bank in her room and we are each to drop 25 cents in the bank every night before bed. What a beautiful daughter I have; inside and out.

Ashley's Progress Report

2009-01-24T14:05:00.004-05:00

No folks this is not a report on the progress of Ashley's liver disease. Despite what you might think we don't think about her disease 24/7. Sometimes our life is consumed with much more import things surrounding our children. However, if you must know, Ashley's disease is still stable but she is still dealing with undiagnosed bleeding issues. She goes back to the liver clinic at Shands Hospital in Gainesville on February 9. I have sent an email to her doctor to see what is in store for Ashley during this visit; still don't know what's planned other than blood work. But I am happy with where Ashley is right now regarding her disease.

Okay on to more important news....

Ashley received her second quarter progress report and she made four A's and one B. Her A's were' in Reading, Language Arts, Science and Social Studies; her B was in Math. Ashley has 100 average in both Language Arts and Science, and a 94 in Reading and Social Studies. Her Math grade average was an 87. With another six weeks left in the quarter Ashley has plenty of time to change that B to an A. I am so proud of her, she has really focused this year and despite missing a lot of school she has been able to keep up and maintain good grades. Way to go Ashley; Daddy, Brad and I are so very proud of you.

And not to leave Brad out....

Brad received his first semester report card. He too made all A's and one B. His B was in Aeronautics. The rest of his classes are all A's; Algebra I, Language Arts, Guitar, Geography, Earth Science and Spanish. Brad currently has a 3.875 overall GPA. For the second half of the school year, Brad will be exchanging his Guitar class for Physical Education and his Aeronautics class for Biotechnology. Overall Brad has done great so far this year, not bad for a busy 7th grader.

I am one proud Momma!

Why is Ashley doing so well when so many others are not?

2009-01-21T14:46:00.004-05:00

This is a question that I have been asked several times over the last few years and asked more often recently. There have been many people from the Biliary Atresia Network, which I founded in 2001, that have asked me what I am doing that has allowed Ashley to live 10 1/2 years with her original liver. What have I done that helped prevent Ashley from being inpatient in the hospital since December 1998. I really wish I had an answer as to why Ashley has done so much better than other children with biliary atresia. I wish I had a magic formula to treat this liver disease, believe me if I did I would most certainly share. All I can is tell you is what I have found to be effective in treating Ashley. However, please remember I am just a mom; I am not a doctor nor do I play one on TV.

First, when Ashley was diagnosed I researched everything and was on the computer 24/7. I would research my research. It drove my husband crazy but it made me feel like I was doing something to help Ashley. I questioned the doctors, demanded answers and refused to leave the doctor's office or hang up the phone until I got answers.

Second, when Ashley was sick with normal sick kids stuff, I would research the medication prescribed to her before I filled the prescription. There have been at least two times, that I remember, when Ashley was prescribed medication that would adversely affect her liver. We never filled those prescriptions, the doctor was called and another prescription was ordered.

Regarding over-the-counter meds, after I found the support group Children's Liver Association for Support Services (CLASS), I searched their website for information; anything that would help me. The Resource Center on CLASS has a wealth of information on all sorts of pediatric liver disease and transplantation. One thing I don't leave home without when traveling with Ashley is the list for Acceptable Over-the-Counter drugs for Pediatric Liver Disease patients. Ashley does not get any over-the-counter medication unless absolutely necessary. I could probably count on both hands how many times she has had Motrin or Tylenol. Our fever reducer of choice is Motrin, we have probably given Ashley Tylenol maybe once in her 10 1/2 years of life.

Third, after researching all the meds that Ashley is on or was on because of her disease, such as ADEK vitamins (no longer takes this medication), Phenobarbitol (no longer takes), Actigall, Prevacid, Miralax, etc, I learned not only the reason Ashley is taking these meds but how and when she should take them. Most important I learned that Actigall should be taken with food at the same time every day. Since I started giving Ashley her Actigall with food and consistently at the same time every day, I noticed that her liver numbers started trending downward. After about three months of administering Actigall in this way, Ashley's liver functions have remained perfectly normal and only elevating when she is sick; this has been the case since early 2002 (I have proof of this in a spread sheet that I created when Ashley was first born). I am not sure if changing the Actigall routine helped Ashley but it certainly hasn't hurt her and her liver functions are normal.

Fourth, Ashley was very sick when she was first born with a bilirubin of 15.5. I was breastfeeding her and then was told after the Kasai that I would need to feed her a special formula. However, Ashley did not tolerate the special formula and then without permission from the doctors I gave her regular Similac with Iron. At first, Ashley's doctors were not happy with me, but when they noticed she was gaining weight and thriving they allowed her to stay on the formula. Just so you know, it would not have mattered if the doctors told me to put Ashley back on the Special formula, I would not have listened. For six weeks while Ashley was on that stuff, she didn't gain weight, she was throwing up not only her food but her meds. Once I fed her the regular formula all of that changed. How is a sick baby supposed to get better if you put her meds in a few ounces of formula and she either doesn't drink it because of the taste or she drinks it only to throw it up seconds later. I don't care if you are a doctor or not that is not healthy for a sick child.

Lastly, I demand tests to be done on Ashley even if her doctors feel that the tests aren't warranted or her labs don't indicate the need for those tests. For example, Ashley was three years out from her Kasai, she had not had an ultrasound since a few months after her Kasai surgery (I think she was 5 months old). At one of Ashley's liver clinic appointments I asked that Ashley have an ultrasound. Ashley's doc felt it wasn't necessary and didn't agree. I argued my case, told him I had insurance, to humor me and order the test. Of course, I won that argument and Ashley had an ultrasound. That ultrasound that doctor didn't feel was necessary showed a nice 2 cm mass sitting on Ashley's liver. Now Ashley has two more 1 cm cysts on her liver too. If you feel in your gut that more tests need to be done, demand them to be done and don't take no for an answer.

All of Ashley's doctors firmly believe that the reason Ashley has done so well for so long is my aggressiveness in her care and my persistence with the medical community. Doctors don't know everything remember they are practicing medicine and for the most part they are learning as the go too. Yes, Ashley has problems with fluctuating low platelets, a low white blood cell count, unknown cysts on her liver, bleeding issues, abnormal vitamin levels, and a weakened immune system but she is remarkably like any other 10 year old. She growing and thriving normally...so I must be doing something right. Of course, prayer has never hurt and my faith in God has certainly helped.

It Feels Good to Help Others

2009-01-16T09:31:00.003-05:00

One of my daily New Year goals is to help someone in need. Even though I practice this every year, sometimes like most humans I become selfish and have the "what about me syndrome." It's easy to get wrapped on our own needs and not think about others. I am a very generous person by nature almost to a fault because I am easily used by others. In the past, I have been taken advantage of when I have given generously. I admit because of the past it has been hard for me to give so readily; so generously. This year's daily goals have given me an opportunity to fulfil my strong desire to give; to pay it forward even if I don't reap rewards.

A good friend of mine has been fighting the flu for what seems like two weeks (I think she has pneumonia). Laura is a workaholic, but so very generous with herself and her time. Her daughters have become close friends to Brad and Ashley and I simply adore the family; all of them even Mr. Bean and Frankie. Yesterday, I called Laura to check on her; she sounded awful. I offered to help and I did. I picked up her daughter, Kat, at 5:30 pm from cheer leading practice. I picked up some items she needed at the grocery store and I even ran to Target so that Kat could get some much needed items for a Pep Rally they are having at school today. Did I go out of my way to do these things; no not really. When I dropped off Kat at her house I spoke to Laura for a little while as she was covered from head to toe in her bedding, sweats and a Studio 5D jacket; she was sick people. Helping Laura made my day, something so simple and so giving made me feel good and was the highlight of my day.

But I didn't stop there...

After reading several of the blogs I follow and visiting my Facebook page, I learned that a friend from our pediatric liver disease support group is organizing a raffle to raise money to cover her son's medical care. Her son, Aiden, was born with biliary atresia the same disease that affects Ashley. Aiden received a liver transplant when he was just a tiny baby but his health has never been the same since his transplant. Although, his gifted liver is doing well, Aiden is now suffering from other illnesses and must travel from his home in St. Petersburg, Florida to Cincinnati, Ohio to get specialized care from the best doctors for his disorder. Not only is Aiden dealing with major health issues but his little brother, Mason, has medical issues of his own. Lisa and her husband, Joey, (I like that name, wonder why) are amazing parents and their children are an example of God's miracles.

For years I have wanted to help a family from our liver disease support group but I wasn't sure how. We are not rich so to help someone financially was out of the question although I have given $20 dollars to families here and there; it's not much but every penny adds up. But I wanted to do more. So with Lisa's raffle for her son, I came up with an idea. I would donate my services as a web designer to one lucky raffle winner. The winner will receive a free 3 to 5 page simple website, two years of hosting, a free domain and two years of website management. I am so excited about this offer, I only hope that it brings in a ton of money for Aiden and his family.

It's amazing how a simple act of kindness can make one feel. Hmm...I wonder who I can help today. Maybe it's you!

Dress Auction for Ashley

2009-01-13T12:58:00.009-05:00

Below are two dresses that Ashley wore only once, we are auctioning these dresses off here on the Love for Ashley blog. The white dress can be used as a flower girl dress or a first communion dress. The beautiful turquoise dress can be used as a flower girl dress, junior brides maid dress, Easter dress, etc. Both dresses are a little girls size 8 and will be professionally dry cleaned prior to shipment. If you are interested in bidding for either of these dresses please send an email to loveashley@loveforashley.com. The bidding starts today and will end on April 12. I will update with the highest bidder amount once a week. The starting bid can be found below the pictures of each dress. Have fun, good luck, and remember the money from the sale of these dresses go to Ashley's Transplant Fund. Thank you.

Click on the images to make the larger.

Starting bid $25 Current bid $28 (as of 1-21-09)

Starting bid $20 Current bid $25 (as of 1-21-09)

We hope that this online auction is succesful and will be the first of many. If you have a dress or anything else you would like to auction to benefit Ashley's Liver Transplant Fund, please send me an email at loveashley@loveforashley.com put auction in the subject line of the email. Who knows maybe I will auction off my wedding dress next.

Thank you.

If you are sick, stay home!

2009-01-08T09:39:00.002-05:00

What is it with people going to work, school, etc. sick? Don't they know that they are not productive when they are sick? What is wrong with employers putting stress on employees that makes their employees come to work sick for fear of loosing their job? I am so tired of parents taking their kids to school knowing that that their child is sick. I don't friggin care if you have a job, stay home with your child so my child won't get sick. What is it with people who allow their children to dance with fevers ! Come on, do you really think your child is able to dance feeling sick? Please keep your sick children home.

Ashley went to dance on Monday night, after an hour of dance she came out to tell me that two children in her dance class were running fevers for two days or more. Are you freaking kidding me! And one child left the dance studio with stomach pain, thank goodness she went home and didn't try to "dance it out." I ate lunch with Ashley at school yesterday and over heard a conversation with the school staff that a child was in class with a high fever. The parent would not pick them because they had a job. Isn't that child neglect? If it isn't it should be. Of course, I knew it was only a matter of time before Ashley got sick. And today...I am taking care of a sick little girl. It's almost 10 am and she is still asleep. She has a doctors appt at 3:15 pm today.

Yes, I know Ashley is more susceptible to illnesses because of her low white blood cell count and liver disease but that doesn't mean that I should keep Ashley in a bubble. It means that even if Ashley were "normal" people should take precautions when they are sick so that others around them won't get sick. It's common sense, if you are running a fever stay home until you are fever free for 24 to 48 hours. If you have diarrhea, stay home until you no longer have diarrhea. How hard is it, just stay home if you are sick.

Of course practicing good hand washing and hygiene also helps prevent illnesses. Ashley has always been good about washing her hands after she uses the bathroom. She also knows how to sneeze properly, into the crook of her elbow and not into her hands or into the air. This is something we have taught Ashley since she was a very little girl. Parents should be teaching their children to do the same. Also, remember children learn by watching, so parents you need to set a good example for your children and any other little eyes that may be watching.

Come on people, I can't keep my daughter healthy if you don't help me. Keep your sick children away from my daughter. Keep them home, cuddle with them, and use this opportunity to bond with your sick child. Maybe the next time my daughter gets sick I will send all of you, who sent your sick child to school or to dance classes, our medical bills!

Thank You - Love for Ashley Cookbook Sales a Success

2009-01-07T12:36:00.003-05:00

I want to thank all of you who purchased a Love for Ashley Recipes for Life Cookbook. Specifically, I would like to thank Our Savior Lutheran Church in Mobile, Alabama most of the members at this church are familiar with Ashley's story because my parents are members of this church, they purchased many cookbooks to support our cause. I would also like to thank the mom's at Studio 5D Dance Studio in Winter Springs not only did they come up with the idea for the cookbook fundraiser but many also bought more than one cookbook. The teachers at Wilson Elementary in Sanford who are strangers with a huge heart. They purchased at least 15 of Ashley's cookbooks even though they don't know Ashley or me. Ashley's school also purchased a few books. I would like to thank the parents of the Oviedo Blackhawks baseball team you guys ROCK, thank you so much for supporting Ashley and caring for our family. Of course, I can't mention the Oviedo Blackhawks without mentioning the Oviedo Babe Ruth Baseball league, they too helped our cause by posting a link to Ashley's cookbook fundraiser on their website. From the Oviedo Babe Ruth website we sold about 5 cookbooks. And I can't mention Oviedo Babe Ruth without mentioning Brad's league teammates with Coach Robey who also purchased many cookbooks. I can't forgot to mention my family; especially my mom and sister, Renee, who marketed Ashley's cookbooks and sold many to their friends and coworkers. I also want to thank my dad's cousin, Skip, from California who sold cookbooks at his church and to my dad's other cousins in California; thanks so much for supporting Ashley,we love you. And I also want to thank my husband, Joey, for taking the cookbooks to work and somehow selling a few despite his very busy work schedule. There are so many people who bought cookbooks that I haven't mentioned but please know that I appreciate your support and we thank you. Of course, the cookbook would not have been such a success without all the recipes donated by you - the reader's of this blog, family, friends, coworkers, and complete strangers. Thank you so much for everything.

Note: We still have cookbooks available so please order one today. Please see the link above under "Ongoing Fundraiser" to order your cookbook.

Happy New Year!

2009-01-05T10:06:00.005-05:00

I know it's late but so far it has been a Happy New Year for us, I do hope the year has started off happy for you too. We enjoyed a quite New Year celebration at home watching football games and the Rose Parade. Did anyone see the Gift of Life float? I missed it while switching channels to watch football. I have my priorities you know.

I bet you are wondering if I have any New Year's Resolutions. Usually, I make two or three resolutions a year but I am always failing at keeping those resolutions. This year I decided not to make any new years resolutions instead I am setting daily goals. For example, today my goal is to finish my never-ending to do list and run another mile and half. Tomorrow, I will set a different goal or goals. Setting daily goals seems a lot easier to accomplish than setting a goal or many goals for the year.

I did ask the kids if they have any New Year Resolutions. Ashley's resolutions is to save enough money to buy a Ragamuffin kitten. She has her heart set on a white Muffin with blue eyes, she is picking out names daily. Right now, she has about $70 dollars saved, I don't have the heart to tell her that these kittens go for about $800 to $1000. Maybe I can convince her to rescue a kitten. Brad's resolution is to not procrastinate on school work. I love you son but you will still procrastinate, I will still get irritated at you when you do but just keep those grades at A's and B's and everything will be fine. Don't get me wrong folks, Brad is a great kid. He is just like any other middle schooler; he procrastinates on big school projects like the Science Fair, research papers, etc. It drives us nuts but hey I did it when I was a kid too so I cut him some slack every now and then.

Ashley did well over the Christmas break other than her normal typical bout with an intestinal virus she survived the two week break with no major illnesses or trips to the doctors. She does have an appointment at Shands scheduled for February 9. I am pretty sure at this appointment she will have an ultrasound, blood work and a possible a colonscopy and an upper endoscopy. I just hope and pray that we can keep her healthy and away from the doctors until then. She doesn't need to miss any more time from school; she has missed enough. Making up her school work, homework and tests that she missed after being out of school for two weeks after Thanksgiving was not fun; for her or for me.

This year has started of well for us and we are positive that it is going to end even better. The power of positive thinking is in control!

New Year New Fundraiser

2008-12-30T16:03:00.005-05:00

Author Thomas DePrima has generously offered to send an electronic copy of his book "A Galaxy Unknown" to each donor who donates $5.00 or more to Ashley's Liver Transplant fund. You will need Adobe Acrobat Reader to open the book. If you don't have Adobe Acrobat Reader you can download it free by clicking here. If you would like to donate to Ashley's fund and receive your free copy of Mr. DePrima's book, please send an email to loveashley@loveforashley.com. Once we receive your donation, you will receive an email address to claim your electronic copy of "A Galaxy Unknown."

Description:

It's 2267! Interstellar space is infested with pirates, slavers, and scum of every ilk! In a futile endeavor to curtail lawlessness and provide safety for the greatest number of galactic citizens, Space Command has committed its full resources to the task, but the misapplication of military might has allowed criminal elements to grow immensely powerful.

A life-pod containing a young ensign, missed by rescuers following a shipboard explosion a decade earlier, is discovered adrift in deep space. Awakened from a long stasis sleep, Jenetta Carver finds the current situation horrific. But before she can rejoin SC, she's captured by pirates. At first she fears for her life, but when she's indelibly marked as a pleasure slave, she gets mad; fighting mad. And when they tamper with her DNA to make her appear sexier, she gets even madder; killing mad.

Can a petite blonde, cutoff from command and operating on her own, create more mayhem among the criminal elements than a full decade of SC effort?

Thank you for your support and happy reading.

Pictures from Christmas Morning

2008-12-27T18:09:00.004-05:00

Yes Mom, I am Awake!

A Trampoline! Yea!

I smiled, now give me my presents!

Watch Out Santana, Brad has gone Electric!

I know the Amp is in here somewhere!

Merry Christmas

2008-12-24T19:24:00.001-05:00

Christmas at Home

2008-12-23T18:17:00.006-05:00

This year we decided to spend our first Christmas at home instead of with family in Mobile, Alabama. It was a hard decision to make because we really do enjoy being with family and Christmas is different when you are not surrounded by family. However, as Joey and I were at a Christmas luncheon hosted by his boss, we both realized how much more relaxed we are being home. This year we will start our own family traditions.

On Christmas Eve we plan to attend the 4:30 pm Christmas Eve service at our church, St. Luke's Lutheran. We are discussing our dinner options for Christmas Eve, either dinner at Outback Steakhouse or dinner at home. The winning vote right now is dinner out but Brad wants to eat taco's at home....taco's for Christmas Eve dinner. Who eats taco's for Christmas Eve dinner?

Christmas Eve night before the kids go to bed we will read the Christmas story from the Bible, we will take turns reading the versus. In the past we read "The Night Before Christmas" too but my kids are over that story and want to focus on the true meaning of Christmas. Reading the Christmas story from the Bible will be a first in our family, in the past we just read from a children's book. Personally, I am looking forward to all of us participating in the reading instead of just me reading to everyone.

We will wake up Christmas morning, the kids will bee line for their Christmas stockings and then wait patiently at the Christmas tree as their dad and I get our camera and video camera ready. It will take all of 15 minutes for them to tear open their presents and 15 minutes for me to clean their mess. After presents are opened, I will make a Christmas brunch. The kids will play with their new gifts most of the day and I will spend time in the kitchen preparing our Christmas dinner feast of Honey Baked Ham, Green Beans with Bacon, Hash Brown Potato Casserole, Garlic Mashed Potato's, Fruit Salad and for desert Pumpkin Pie (store bought of course, remember I don't bake).

The best thing about being home for Christmas is so far Ashley is not sick. In the past Ashley has always gotten sick during Christmas. This year she is healthy and we are going to keep it that way. Knock on wood, cross your fingers, and a little prayer doesn't hurt either.

Here is a picture from Christmas past. This picture is from Christmas 2003, Brad is 7 1/2 years old and Ashley is 5 1/2 year old. Skylar, the cat, is 6 months old. Aren't' they just adorable!

Below is a picture of our house all decorated and a picture of this years Christmas tree decorated with white lights, red pointsetta's and gold ornaments.

Non - Tax Deductible Donations

2008-12-18T15:39:00.006-05:00

Today I received a letter from the American Liver Foundation dated, December 11, 2008 regarding tax deductible donations. Below is an excerpt of the the letter:

"As part of an ongoing review of the program's policies and procedures. It has been confirmed that, with regard to contributions made the transplant fund accounts, these contributions are not tax deductible. Per the Internal Revenue Service Publication 526, donations made to a non-profit organization for the intended use of a specific individual is not a tax deductible donation and can not be claimed as such."

If you have donated to Ashley's Liver Transplant Fund through the American Liver Foundation, please note that your donation is NOT tax deductible. We do hope that this not deter any future donations to Ashley's Liver Transplant Fund.

Remember there are two ways to donate to Ashley's fund. You can donate through the American Liver Foundation by sending a check to the address listed at the top of this blog or you can donate through our Paypal account which is also located at the top of this blog. However, please remember that neither is a tax deductible donation.

Thank you very much for your continued support!

So Ashley's...

2008-12-18T08:01:00.002-05:00

bleeding again. What's up with that? I will keep an eye on it, it is very little bleeding right now. This is crazy! Her stool samples were normal so why is she bleeding?

So Far So Good

2008-12-16T09:12:00.002-05:00

It's day two since Ashley returned to school after being out of school for two weeks and so far so good. She went to her first dance class in two weeks last night and had the energy to make it through the hour class. Wednesday's classes will be a challenge since she will be dancing for 3 1/2 hours. She still isn't eating much but she is feeling better. The bleeding has appeared to stop and her stools look somewhat normal. Who would have thought that I would be obsessed with poop! Ahh, the life of being a "liver mom" as we so affectionally call ourselves.

Today I am going out to buy baking supplies, Ashley must bake for the annual 5th Grade Market Day at school. This is going to be interesting, anyone who knows me, knows that I don't bake; I burn not bake. But for Ashley I have to give it a try, if all else fails there is always our local bakery. Hmmm...what shall we bake...any ideas? Please help, I need simple recipes for cookies, brownies...whatever that kids will eat. If you have a recipe to share please leave the recipe in the comment section. Ashley will very much appreciate it, she doesn't trust me at all with this baking thing.

Thanks everyone!

Friday Flashback

2008-12-12T09:02:00.008-05:00

UPDATE 12/12/08 at 5:41 pm
Ashley got the all clear, she will be back in school on Monday. The stool sample collected for the Liver Clinic at Shands yielded negative results. The verdict is that Ashley had a viral infection that irritated her bowels causing her to bleed. She is not bleeding anymore and her stools are normal. Ashley is so excited to be normal again and is so ready to get back to school! Thanks everyone for your prayers; they worked.
_____________________________

First, we received the results from Ashley's first stool sample, the one that we collected at her pediatrician's office. Dr. Lacy called about 5 pm yesterday to tell me the results were negative so he believes that whatever Ashley has that it is viral. But now we wait for the C Diff results from the liver clinic at Shands, I expect to get those results today.
_____________________________

Now on to the Friday Flashback, where I go back in time and share memories.

When Ashley was first diagnosed with biliary atresia, I wasn't scared but I was numb. I had no idea what having biliary atresia meant. Ashley's doctors told us not to look on the Internet, that we would find outdated material and not a whole lot of information. Of course, I ignored them and my friend, Robin, spent hours on the Internet researching biliary atresia while I was at the hospital with Ashley. Robin would bring me stacks of paper on biliary atresia. Often she'd bring them with tears in her eyes. The information on the Internet in 1998 regarding biliary atresia was not very hopeful. There were babies dying without ever receiving a liver transplant, there were stories of babies living their lives in and out of hospitals, there were babies requiring two and three liver transplants and there were parents burying their children before their first birthday. I remember thinking, "Oh God, this is going to happen to Ashley." "How I am I going to tell her brother that his sister is going to die." Then I let all of those negative thoughts go and I fought God. I was determined not to let bad things happen to Ashley; to us.

As I was looking at Ashley in her hospital bed in her ICU room at Arnold Palmer Children's Hospital in Orlando, I prayed. But my prayers weren't "if this is God's will"; I did not let go and let God. My prayer was begging God not to take Ashley from me. I told God that He could not have Ashley back because I love her more than HE possibly could. I told God that I would do everything humanly possibly to make sure Ashley grows up as a child of God. There were many things I told God that morning in prayer but my prayer was not a typical prayer, it was a prayer that many "clergy" would say was inappropriate, they would tell me that it was the wrong way to pray. But I didn't care, I was going to fight for my daughter's life even if it meant fighting God.

It was hard leaving Ashley in the ICU room every night to go home to our house without her. It was even harder explaining to Brad why Ashley wasn't home with us. There were many nights that Joey and I cried ourselves to sleep as we prayed, begged God to spare Ashley's life. As stressful as that time was, it was also very beautiful; beautiful because it was the first time in our eight year marriage that my husband and I prayed together, with hands wrapped around each others. It was the first time that you would find all three of us knelling beside Brad's bed in prayer. It was the first time I realized the importance of my life as a wife and mom. Nothing was more important to me than my husband and both my children. Just as I have devoted my life to God, I began to realize that my devotion to my family had to be just as strong, just as faithful, and just as certain.

Early one morning we get a call from the hospital stating that Ashley had stopped breathing but thankfully was resuscitated. Joey and I drove to the hospital in record time, I am completely amazed we didn't get a ticket or worse get in an accident. On the way to the hospital, I was mumbling in prayer, shaking, crying and telling Joey to hurry up. It wasn't until I looked at Joey's face as we drove down SR 417, that I realized he was hurting too. As a noticed a small tear running down his face, I wiped it off with my finger and without a word I graped his hand and squeezed it. We had to be each others strength, if our marriage was going to survive this crisis.

The day after Ashley stopped breathing, the doctors were making their rounds and we were told that they were going to try to remove Ashley off the ventilator. Joey and I left Ashley's ICU room and went to the hospital cafeteria. Here in the cafeteria we prayed. After our prayer, we both felt a sense of peace. It was a strange feeling, a feeling of warmth; a sense that Ashley was going to be fine. As we made our way back to Ashley's ICU room, we walked in and noticed Ashley was free of many wires and I was finally able to hold her. After 5 days of fighting God, God finally gave her back to me.

Stool Sample Results

2008-12-11T15:02:00.003-05:00

Looks like we have to wait another day before we get the results of Ashley's stool sample. Dr. A's nurse told me today that it takes 48 to 72 hours for the test for C Diff to show results. Since we dropped of the stool sample on Tuesday afternoon, the results will not be ready until Friday afternoon.

The good news is Ashley is feeling better, her stools now have some consistency to them and are becoming more formed; not so runny. The color of the stool is still weird; a combination of white and green but I see very little blood if any at all. So whether this is C Diff or just viral infection, I feel it is on its way out of Ashley's body.

Ashley will be home from school again tomorrow but I think I am going to take her out shopping; she can help me get Brad's Christmas presents. Then next week when Ashley is back at school, I will shop for her Christmas presents.

Christmas Wish List

2008-12-11T08:00:00.001-05:00

As Brad and Ashley get older their Christmas Wish List gets smaller but the items they wish for are more expensive. This year Joey and I are having a difficult time coming up with gift ideas. Here is what the kids would like under the Christmas Tree this year.

Brad's Christmas Wish List

1. A Gibson electric guitar. The cheapest Gibson electric guitar I have found is $425. So maybe Brad won't get a Gibson, maybe he will just get any old electric guitar, like this one. Brad has been playing the acoustic guitar for 3 years off and on. He is pretty good and is getting better each day but is he $500 worth of good, no I don't think so.

2. An XBox 360. Again, another $300 item. We have a perfectly good PlayStation 2 with tons of games so I am thinking the XBox 360 can wait until the PS2 bites technology dust.

3. A Rubik's Cube. Finally, something I can afford. But why do you ask does Brad want a Rubik's cube? I asked the same question, and he said because he wants to solve it and he wants to practice solving it for speed. So Brad will have a Rubik's cube in his stocking.

That's all on Brad's Christmas Wish list, just three things. So what else does an almost 13 year old boy want or need. He has a IPod Nano which he saved money for year to purchase, maybe I can get him an IPod Nano portable docking station. I have no idea how much those cost but it warrants a trip to WalMart to find out. What else do you get a soon-to-be 13 year old boy? Any suggestions?

Ashley's Christmas Wish List

1. Trampoline. Ashley has asked for a trampoline for a couple of years now. We always told her no because we assumed that her doctors would frown on us getting one. However, we have since learned that Ashley can have a trampoline as long as we by the protective netting for the trampoline. The only problem, the trampoline with the netting can cost over $200. Geez, is anything cheap these days.

2. Electric Piano/Keyboard. Why on earth does Ashley want an electric piano? She doesn't even take piano lessons.

3. These boots in brown at the Limited Too. These will more than likely end up under the Christmas tree. But in Florida, how often will she wear them?

4. A blue Ipod Nano. I have decided that if we can't get the Ipod Nano for Ashley this Christmas because we have bought the Trampoline and the Electric Keyboard, that the blue Ipod Nano would make a perfect birthday present.

Ashley being a girl makes shopping for gifts easier because she loves clothes, especially clothes from Limited too. But what else does an almost 11 year girl want for Christmas? Maybe those of you with almost 11 year old girls can help me, because Ashley isn't helping at all.

What do Joey and I want for Christmas...whatever our kids want is what we want. It's a win-win situation. They are happy, we are happy...can't beat that!

The Results are In

2008-12-10T11:26:00.007-05:00

Well at least some of them. We got Ashley's blood work results but her stool sample results won't be in until later today. Here is what we know so far.

Ashley's AST and ALT are elevated, last week's labs only showed an elevation in her ALT (liver inflammation). Her WBC (white blood cell count) is now below normal, last week her WBC was normal. The low WBC indicates that Ashley is dealing with an infection. And more importantly Ashley's platelet count is lower than last week, which means she is loosing blood somewhere.

The thought is that Ashley certainly has C Diff but we need to wait for her stool sample results before we start treating her. Once Ashley is on the right antibiotic to treat C Diff for 24 to 48 hours she can go back to school. Right now Ashley has missed 6 1/2 days of school in two weeks. This means that Ashley will be back at school next Monday. She will be back to school just in time to enjoy all the school holiday parties before they are out for Christmas break on December 22.

I thank God we have health insurance, all of these tests Ashley has had these two weeks are costly. Now that Ashley has met her deductible our out-of-pocket expenses should be reasonable. And I thank God that people are giving generously to our fundraising efforts.

To all of you, thanks for your emails, your phone calls, and your love during these last two weeks. Nothing with Ashley is ever simple, I am so glad to have friends and family who care and who help us cope.

Ashley Still Sick

2008-12-09T12:30:00.004-05:00

Well, we didn't get to Quest Diagnostics yesterday, they were closed when we got there. The plan was to take Ashley to Quest early this morning but Ashley had other plans; she slept until 10:30 am. Ashley has never slept until 10:30 am unless of course she was up past midnight the night before but that was not the case. With Ashley sick, I let her sleep in.

We finally went to Quest about 11:30 am, and after that Ashley deserved McDonalds for lunch so after a quick trip through Macky D's drive thru we were home by 12:30. Of course, we didn't leave Quest without a stool sample kit, oh what fun. We still haven't received the results from the stool sample that was left with Ashley's pediatrician. Hopefully, we will hear about those results and the lab results later today. By the way, they are testing Ashley for C Diff. Just in case Ash has C Diff, I will keep her from school until we get all the test results back, as C Diff is contagious. Again, hopefully we will get test results later today or early tomorrow.

After reading about C Diff, it certainly sounds like it could be a possible diagnosis for Ashley. She was on an antibiotic the week of Thanksgiving and a few days last week. I stopped giving her the antibiotic because it was new to her daily regimen, maybe it caused the bleeding, the diarrhea, etc. She was put on the antibiotic for a sore throat but she has not complained of a sore throat for a week. I felt comfortable not giving her the antibiotic. Also, Ashley has diarrhea, she has blood in her stool, she "goes" more than 7 times a day, this has been a problem for two weeks. So my unofficial diagnosis is that Ashley has C Diff.

Let's wait and see if I am right. For now I am off to the labs to drop off yet another stool sample. I need a mask and gloves, I am not sure how much more MY stomach can take!

All I want for Christmas...

2008-12-08T14:31:00.005-05:00

is for Ashley not to be sick.

Ashley went to school today but of course I get a call from Ashley; she's at the school clinic not feeling well and experiencing diarrhea. After talking to the liver team at Shands, I go pick her up from school and take her to our pediatrician. Ashley is complaining of belly pain, blood in stools (still) and very dark green stool and urine. While at the pediatrician, they get a urine sample which is normal. The stool same sample results won't be available until tomorrow.

I just got a call from the liver team again and they want Ashley to have labs drawn. So we are off to Quest Diagnostics as soon as I pick up Brad from school. Ashley wants to go to dance, she missed her dance classes last week. She isn't running a fever so I might let her go. Hopefully, we can get labs drawn before Ashley has to be at dance which is at 5 pm. Then Brad has Karate at 5:30 pm.

Hopefully, we will have answers on what is wrong with Ashley by the middle of the week. I personally think she has an ugly gastro-intestinal virus. I don't think any of this is liver related but heck what do I know I am just her mom.

Conversations with Ashley

2008-12-06T10:47:00.003-05:00

As Dr. A was examining Ashley and measuring her spleen and liver size, I heard the following conversation.

Dr. A: "Ashley do you do anything other than go to school?" "Do you go to Girl Scouts or play a sport?"

Ashley: "The only thing you will let me do is dance." "So I dance...a lot!"

Dr. A: "You can play softball if you promise not to slide into the bases."

Ashley: "What's the point in playing softball, if you can't slide."

Dr. A: "Okay what about swimming?"

Ashley: "I don't like water."

Dr. A: "Okay what about track."

Ashley: "I don't like running."

Dr. A: "So you like to dance?"

Ashley: "Yes, it's the only thing that makes me forget I have this stupid disease."

Dr. A (looking at me with a sad look): "I'm sorry but I bet you are a great dancer."

Ashley: "I am pretty good but I want to be better and want to compete again."

After that conversation, Dr. A and I had a conversation about Ashley's spleen size and her activity level. He reminded me and Ashley that even though she has restrictions that she can do other things but with caution, supervision and common sense. She is doing so well we don't want to risk her health so dance is the safest activity for Ashley.

Back from Shands with Answers and a Plan

2008-12-04T18:18:00.005-05:00

Ashley has a tear in her anal canal and probably some very small varices in her colon. The worst part of her bleeding has stopped but she still has some bleeding. The doc still wants us to keep an eye on the color of her stools, if the bleeding gets worse we are to call the office ASAP, even if it is after-hours. Ashley's little tushy is sore and irritated so we are to use a hydracortizone cream and she is to take warm baths for few days to calm the irritation. She is still in pain when she stools but the bleeding appears to be slowing down.

During our visit, we also discussed Ashley's frequent headaches and possible cause. Ashley's liver doc believes the headaches are caused by the developing sinuses. Evidently, Ashley is at an age where her sinuses are developing. However, most children do not complain of pain while developing sinuses so Ashley will have an xray of her sinuses soon. Not sure what the doctors will be looking for in the xray other than something not normal. Oh and Ashley's tonsils are large but again the doc says as long as they aren't blocking her airway it's not a concern. He said lots of people have enlarged tonsils.

Dr. A also noticed that Ashley's spleen is slightly bigger than it was in August but he isn't terribly concerned because it seems to fluctuate in size. He did say the spleen was soft; I guess that's good. He said that her liver is palpable but had a hard time feeling it because of her surgery scar. He said her color looks good; not jaundice and she doesn't appear to be anemic. Because her blood counts look good, he isn't concerned that this bleeding episode is putting her at risk.

Of course, we didn't leave the liver clinic without adding a new medication to Ashley's arsenal. Apparently, Ashley's vitamin E level is low so she is now on liquid vitamin E. Let's see that means Ashley is taking 6 different medications daily both prescribed and over-the-counter. It seems we add one or two medications each time Ashley visits the liver clinic. Dr. A says the longer we manage Ashley's symptoms and complications with medications, the longer she will live with her original liver.

The plan is to watch Ashley for more bleeding episodes over the next few weeks, if all is well she will not go back to Shands until after Christmas. More than likely she will have a colonoscopy but she will not have an upper endoscopy since her last scope was perfectly normal. She will also have an ultrasound to look at her liver nodules/cysts. Of course, a full set of labs including vitamin levels will be drawn. If all is normal she will not go back to the doctor until June, at which time she will see a new GI doc locally in Orlando.

In summary, Ashley's bleeding does not appear to be related to her liver disease but of course that can't be entirely ruled out, so we will continue to watch Ashley closer. Although, Ashley's liver disease is stable, she is experiencing some complications but those complications are very treatable. Ashley has a good quality of life, as long as her complications are treatable and she is not spending time as a hospital in-patient, we are happy.

A Picture from the Past

2008-12-03T17:24:00.005-05:00

In this picture Brad is 5 years old and Ashley is 3 and I am ... let's just say older. You could do the math, I was 31 years old when I had Brad and 33 years old when I had Ashley. This is one of the best pictures ever of me and the kids; even I look good.

Another Ashley Update

2008-12-03T09:22:00.002-05:00

This morning Ashley had her first bowel movement of the day, upon inspection and dissection the bleeding appears to be minimal. Although, Ashley is still complaining of pain, it appears that the bleeding is slowing down. Having the bleeding slow down is great news especially since on Monday her stools were covered in blood and I mean covered in blood. Sorry to be so descriptive but I want all of you to picture my fear.

We are still heading to the Liver Clinic at Shands Hospital in Gainesville tomorrow and will be packing an overnight bag in case Ashley is admitted or she requires additional tests. If it were up to Ashley she wants to stay in Gainesville overnight; she loves the doctors, she loves going to the hospital and she even loves to get scoped. She is a remarkable child and I could not do this without her strength. Of course, I think she loves going to Gainesville because she gets my undivided attention plus she gets to eat at her favorite restaurant, TGI Friday's.

By the way, Ashley's labs looked good. Of course her platelet count was low but not alarmingly low, her ALT level was high (liver inflammation), and her indirect bilirubin level was abnormally low. I am not to worried about any of Ashley's counts because there is not a red flag setting off an alarm. We will take the results with us to Shands, let the doctors review them but I am not expecting them to be worried based on the results. Labs don't tell the entire story, that's why it's so important to have the other tests plus labs, i.e. scopes, ultrasounds, CT scans, MRI's, etc.

We have a couple of goals while in Gainesville. First, we want to find the source of Ashley's bleeding and second we want to discuss and find a pediatric GI (Gastroenterologist) to handle Ashley's case in Orlando; close to home. By getting a local GI involved in Ashley's case it will save us trips to Shands not to mention save us money.

I have been receiving lots of phone calls from Ashley's teachers at school and from other friends in the community asking if there is anything they can do. Thank you so much for caring for my girl. If you want to do something for Ashley, I ask simply for your prayers.

Update on Ashley

2008-12-02T13:01:00.003-05:00

Looks like we are heading to Shands Liver Clinic on Thursday for a possible Upper Endoscopy and Colonoscopy. Will post more when I know more. I am still waiting on Ashley's lab results. Ashley is still bleeding and is in a little bit of pain. Ashley's doc thinks that the cause of the blood could be something very simple but because she has liver and spleen issues; i.e portal hypertension, we can't rule anything out. Pray that this is truly something simple!

Only Liver Moms will Appreciate and Understand this Fear

2008-12-01T17:24:00.003-05:00

For the last three days Ashley has had a little bit of blood in her stool; at first we thought the redness was from something she ate but after reviewing her food intake over the last week she hasn't had anything red. Today I get a call from Ashley at school, she says the bleeding is worse. I take her to the doctors praying she had a rectal tear or hemorrhoids but the doctor couldn't see anything on internal examination. By the way, this was Ashley first experience with a rectal exam, she was so uncomfortable she couldn't stop laughing.

The doc orders a complete set of labs with a liver function panel and CBC's with platelet count. He also told me to keep Ashley home from school tomorrow and monitor her stool color and bleeding. Which means I have to pretty much dissect Ashley's stool to see what color the blood is, where it is located on her stool; the inside or the outside, etc. Oh what fun...just how I want to spend my Tuesday.

The fear is that Ashley has varices and they are bleeding. Having varices in the colon are rare but Ashley has liver disease so we can't rule anything out. Usually varices are found in the stomach and the esophagus. Her lab results tomorrow should tell us more. Until then just think of me the next time you sit on the "John", "toilet," "commode", "waste receptacle", whatever you call it.

Our Thanksgiving

2008-12-01T17:13:00.002-05:00

First, let me say that I am so very thankful for many things none of which are more important than my family and my friends. My world would not be the same without my husband who puts up with more of my mistakes then anyone should. I am thankful to Brad for his wisdom, his sense of humor and his love. I am thankful to Ashley for her strength and her love for life. But more importantly I am thankful for my faith, my God, who without Him I would be a lost soul in a life of chaos.

Our week celebrating Thanksgiving with family went well but of course never normal. Ashley was taken to a local walk-in health clinic on Monday because she was complaining of a sore throat. The doctor prescribed an antibiotic for a very mild case of strep throat. Despite Ashley's little setback, we had a lot of fun with family. Ashley and Brad enjoyed spending lots of time with all of their cousins; all 7 of them.

On Saturday, we had a football party and watched Alabama beat Auburn and Florida beat FSU. The SEC Championship game with Alabama and Florida will be an exciting game - GO GATORS. We got back home Sunday night to a pile of mail and a very happy kitty cat. Skylar has not left my side since we arrived home.

Happy to be home and sleeping in the comfort of my own bed.

MRSA Hits Home

2008-11-20T11:38:00.003-05:00

In the last few months there have been confirmed cases of MRSA in central Florida, a few of the cases resulted in deaths. The MRSA cases have been in surrounding counties from where I live, but yesterday I learned that there is a confirmed case in our county. Normally, I wouldn't be alarmed but this confirmed case is a student at Ashley's school. This student is not only in Ashley's school but in her class and this student sits next to Ashley in a few classes.

I am very upset at how the school handled this confirmed case, or should I say mishandled this case. First, as of yesterday they have yet to notify anyone in the school especially parents of children with chronic/life threatening illnesses, compromised immune systems, etc. I found out about the MRSA case from another parent, a rumor maybe, but I owed it to Ashley to find out if there was truth to that rumor.

Since I eat lunch with Ashley every Wednesday I decided to see if someone in administration would pull me aside to tell about the MRSA case. As I walked in the school office I was greeted by the school receptionist-nothing, then I saw the administrative assistant-nothing. As I waited for Ashley's class to arrive at the lunch room, several 5th grade teachers waved at me but none of them told me about the MRSA case. Maybe it's a rumor, maybe not.

As I am trying to enjoy my lunch with Ashley, I am getting more and more irritated that no one told me about MRSA in the school. Curse words began to form in my mouth but of course I did not make a sound. After getting home that afternoon, I called the school and talked to the principal. She tried to smooth things over but she knew she had made a big mistake. She tried to make excuses but there are not excuses for stupidity, for the lack of common sense. She tried to blame others for her mistake or her lack of sound judgement but the mistake is hers and hers alone.

Two weeks ago I had a meeting with the 5th grade team, the clinic nurse and the district school board nurse. During this meeting, we discussed Ashley's health and updated her health care plan. This meeting is conducted once a year and the one thing that has remained constant is that the school is to notify me immediately if there are contagious viruses, etc. at the school, whether it's one case or many cases, this is to protect Ashley. Having a child with a compromised immune system due to her liver disease, we have to be prepared and we can't be prepared if we aren't notified.

There is no excuse for the school not to have contacted me. Sure Ashley more than likely will not contract MRSA but now that I know and if Ashley were to develop a red irritated open sore, spider bite, fever, etc. I can at least tell the doctor to check for MRSA since Ashley was exposed to MRSA in the classroom.

There is some good news, the student with MRSA is being treated with the right antibiotic and after being in the hospital and/or care of doctors for two weeks, she is back at school.

Am I overreacting? Maybe I am and I don't care if people think that I am. They don't know what I live with every day; the fear, the anxiety, the stress of having a child with a liver disease. And until they know a little of what it's like they have no right to judge me or say that I am overreacting.

I want to help others but I'm not sure how...

2008-11-18T09:21:00.004-05:00

Lately, like many of us I have been thinking about the economy and although we are struggling financially, I'd still like to help others but I am not sure how. As I was laying in bed last night trying to fall asleep my mind was in full throttle and not allowing me to rest. My dream has always been to financially help other families who are dealing with biliary atresia and/or liver transplantation. Families that are dealing with special medical needs, in my opinion, are much more financially fragile than those families who are not. Imagine having a load of medical bills to pay along with your power, phone and mortgage bills. The stress for those of us who are dealing with never-ending medical bills can be unbearable. Believe me, I know.

After tossing and turning all night trying to think of a way to help others without jeopardizing my financial needs, I think I have come up with a way to make it work. My idea may not produce a large sum of money but even a couple hundred dollars will make a huge difference to a family struggling financially with medical bills. Of course, my idea will not be a success without your help.

Here's my idea...

Right now, I am selling Ashley's cookbooks for $12 plus $5 for shipping. What I'd like to do is sell the remaining cookbooks for $20 plus shipping, $10 will go to Ashley's transplant fund and the other $10 will go to another family in need. I will hold a contest on this blog for other biliary atresia families to be the recipient of the other $10. I have several cookbooks left so there is the potential to give another family a couple hundred dollars.

Think about how far your $20 will go to helping not just Ashley but another little girl or boy just like Ashley. Think about the relief for the parents of that child when they receive the news that they are the winners of the Love for Ashley Give to Others Contest. Think about how good you will feel knowing you have helped two children with your generosity.

Buy a cookbook today. For more information on how you can buy a cookbook, please email me at loveashley@loveforashley.com. Please put Cookbook for Two in the subject line.

Sleeping Beauty

2008-11-13T16:56:00.005-05:00

Ashley fell asleep on the way to her dance classes last Wednesday. I couldn't resist taking a picture of her with my cell phone; she looks so beautiful. As exhausted as she was prior to dance, she had enough energy from that 30 minute power nap to dance 3 1/2 hours. She is such a beautiful ballerina!

Move Over Karate Kid

2008-11-08T17:10:00.003-05:00

Today Ashley's brother, Brad, received his 1st Degree Black Belt. Another two more years and he will be a 2nd degree Black Belt; he will be almost 15 years old. His ultimate goal is to be a Sensei. Below are just a couple pictures from Brad's important day.

Brad receiving his 1st degree Black Belt

Brad and his mentor, Sensei Michael

I am. Are you?

2008-11-03T12:17:00.002-05:00

Tomorrow is Election Day and I plan to be at the polls at 9 am tomorrow morning, are you?

I am voting Pro-Life, Pro-Military and Pro-America. I am also going to vote for my friend, Rob Thrift, for our City Council; he is also Ashley's best friends dad. If you live in Oviedo, I urge you to also vote for Rob Thrift.

After I vote, I think I will take myself out for a good lunch; maybe Too Jay's at Waterford Lakes. Anybody want to join me?

Our Busy Weekend

2008-11-02T14:53:00.009-05:00

Halloween
Don't yell at me but I forgot to take pictures of the kids on Halloween night. Ashley was dressed as a beautiful Army Major on the left side and on the right side she was scary evil looking Army Major. Brad didn't dress up (he thinks he is to old), so Brad gave out the candy to the Trick or Treaters. Ashley and I had fun walking the neighborhood, looking at others in their costumes and looking at the variety of Halloween decorations. However, I think my favorite part of the night was stopping at the Morey house again to see the Spooktacular Light display they created for Ashley. Ashley and I were dancing fouls in front of the Morey house; I am so glad no one saw me dance like an idiot. And for those who are dying to know; the Morey received $81.93 in donations for Ashley's medical care. Don't forget to stop by the Morey's during the month of December, they are also doing a Christmas Light display to raise funds for Ashley's medical care. Thanks to all of you who donated, we really appreciate it.

Saturday Surprise
Saturday morning I took Brad and Ashley to my hair stylist Crystal Lackey at ESBI International Salon. Brad was first to get his hair cut and despite the reluctance he felt going to a "girly" salon instead of Big Leagues, he realized that Crystal does a much better job at cutting his hair. Ashley was next, normally Ashley just gets a trim but this time we decided to do something different. Ashley has always had long very straight hair and now...well...let me just show you the pictures.

ASHLEY'S NEW HAIR STYLE

Ashley has not stopped smiling or looking in the mirror since she got her hair cut. She looks adorable and so much older. Ashley loves the versatility of the style; she can wear it to the side, part it in the middle, she can wear headbands and barrettes in whatever style she creates. Ashley is so obsessed with brushing her hair now and making sure it looks good all the time. Thank you Crystal, you made my girl not only feel beautiful but look beautiful too.

Karate and Baseball
After the kid's hair cuts, Brad has Karate so off he went with his dad to receive his brown belt black stripe with green tip. This Tuesday he will be a brown belt black stripe with brown tip. Next week Brad will test for his black belt so by Sunday, November 9, he will be a 1st Degree Black Belt. After Karate, Brad was off to Kissimmee to play in a baseball tournament. We didn't get home until 8:00 pm Saturday. Ashley feel asleep in the car on the way home and Brad was busy texting his friends about advancing to the semi finals of the baseball tournament.

Today, Brad had another baseball game which he lost, Ashley and I skipped the game and went shopping. Now that Ashley has a new look, she needs new clothes to go with it. Let me tell you clothes are expensive but we managed to find some inexpensive clothes with style. Right now, the boys are out shopping to get Brad some fall school clothes. Overall, we had a busy but productive weekend! How was your weekend?

Ashley in the News: Ghouls help give hope

2008-10-30T19:46:00.006-04:00

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.

What's Worse?

2008-10-28T15:28:00.007-04:00

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. Tylenol is an absolute No-No for liver disease children who are pre-transplant.

If Ashley has a runny nose, sinus infection, etc. I can't just give her any over the counter medication, I have to make sure it is a medication that won't adversely affect Ashley's liver enzymes. If Ashley has strep throat, or an ear infection, we can't just give her any antibiotic; mainly because she is allergic to penicillin products and because many antibiotics will adversely affect her liver enzymes. This is where Google becomes my best friend. Even if the adverse affects are temporary, we have no idea what damage is being done to her liver while on the medication so do we risk her liver for the sake of an ear infection?

I think I like dealing with just Ashley's liver disease. So GERMS, if you are listening stay away from MY DAUGHTER!

Pain in the Back

2008-10-23T17:00:00.003-04:00

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!

In the Press

2008-10-21T11:48:00.003-04:00

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.

We've been busy...

2008-10-18T23:04:00.007-04:00

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 count is low. But we will repeat the blood work anyway. My guess is we need to make an appointment with an Ear Nose and Throat specialist.

Personally, I am getting tired of taking Ashley to her pediatrician once a week only to have him tell me the same thing, "there isn't anything wrong with Ashley, just watch her and if she starts running a fever bring her in." Don't get me wrong he is a great doctor, I trust him. The problem is, Ashley is a mystery; her liver disease, biliary atresia, is a mystery.

Like I said in a previous post, there isn't much I can do; Ashley's life is in the hands of her doctors. However, I can remain aggressive in her care. After all, her doctors have told me that they believe the reason Ashley has done so well for so long is because I have been aggressive. However, sometimes I am just tired; I want answers, I want the doctors to take over and be aggressive for me.

For now, I am thankful that Brad's weekend long baseball tournament has kept me focused more on him playing a good game of baseball and less on what's wrong with Ashley.

By the way, Brad's team is playing tomorrow in the semifinal round of the tournament and has a good chance to go onto the championship round. His AAU baseball team has never won a championship. This would certainly syke up the boys to play well in next weekends tournament in Palm Coast. GO OVIEDO BLACKHAWKS!