Ashley and the Swine Flu

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

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....

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

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

Just 11

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.