Love For Ashley

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.  A...

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 d...

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.

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.

I am sick . At work today I felt that I was coming down with something because I was freezing to death. But when one of my coworkers also said she was cold I thought okay I am not sick. Then after picking up the kids from school my head starting pounding, I took my temperature and it's 100.2 right now. I am thinking strep, so I will go to the docs tomorrow just to make sure. Pray it's nothing, we have a lot going on this weekend. We are suppose to watch a good friend cheer at her second middle school football game, Brad has his second baseball game on Sunday and Ashley is suppose to go to a youth group gathering at our church on Sunday. Please pray. Today my sister's called me to tell me that my mom was taken to the hospital by ambulance. According to my sister, Renee, my mom was throwing up what she was thought was blood and complaining of chest pains. Of course, my mom thought she was having a heart attack which is completely possibly since she is a huge smoker, is overwe...

Many of you know that we decided to take Ashley out of the dance company. As much as we loved watching Ashley compete the expense of keeping her in company could no longer be justified. We do hope that some day Ashley can compete again but for now she will take dance classes for the fun of it. Pulling Ashley out of the dance company was not an easy decision. As we watched Ashley dance during Nationals in July, we were still planning to have Ashley return to the dance company for the 2008-2009 year. However, we decided that we need to focus our financial efforts on doing household repairs, paying for Brad's braces, paying off bills and taking some much needed family vacations. Although Ashley loves attending the dance competitions, she is fine with our decision and looks forward to taking tennis lessons with mom.

Ashley attended her first National Dance Competition the week of July 5 through the 9th. What a crazy fun week of dancing. Ashley had a blast and really enjoyed every minute of the competition even when she wasn't on stage competing. Both of Ashley's Jazz routines did very well. Follow the Leader received a 1st Place Platinum and received 4th place overall in the Petite Small Group Division. Arrazando also received a Platinum and received 2nd place overall in the Junior Line Large Group Division. Both Arrazando and Follow the Leader was chosen to participant in the World Series of Dance which was held on the last night of the competition. Unfortunately, neither routine received a 1st, 2nd or 3rd place honor but they finished in the top six of each of there divisions. The dancers of Studio 5D Fifth Dimension Dance Company did a fabulous job. Their technique was superb, their stage presence was overwhelming and their love for dance was certainly apparent on stage. There were appr...

Guilty There are many things that I feel bad about but as a mom I feel extremely guilty about working while my kids are out of school for the summer. It pulls at my heart that Brad and Ashley spend most of the summer indoors while I work. What a long boring summer I have set in motion for my children. Cookbook Cookbooks are in the mail for most of you. You should be receiving them sometime next week if not sooner. If you live close by and want to make arrangements to pick up your cookbook send me an email to loveashley@loveforashley.com. Dance We are in the 4th day of Ashley's national dance competition with Hall of Fame . Ashley competed today and today's dance number received a fourth place overall and is headed to the Dance Showdown tomorrow night at 7 pm. Ashley dances again tomorrow afternoon so we will be at the dance competition all day tomorrow. I love to watch Ashley dance but dancing twice in one day makes for a very long day. Raise The best thing about worki...

I enjoy doing dance because I am becoming a better dancer every day. I like dancing because it is fun and exciting. It is fun because you get to do something you love. Also, because you to dance to music you love. It makes me happy to dance because your teachers will be nice to you and treat you like they are your mom. I think it is exciting because when you start a dance you never know what the steps are going to be and how the dance will end. It is also exciting to see your parents react to your dancing. Next it is fun because if you compete in dance you never know if you will win 1st, 2nd or 3rd place. That is why I love to dance because it is fun and exciting. This was written by Ashley at the beginning of the school year when the students were learning to do writing prompts in preparation for the FCAT. This writing prompt didn't score very high but by the end of the year her prompts were scoring at 4 and 5. She ultimately made a 4 on the writing portion of the FCAT. Th...

We have one more week of dance before Ashley's recital which takes place on June 14 and 15. She is dancing in 5 numbers; Ballet, Lyrical, Hip Hop and two Jazz numbers. The picture below is of Ashley in her lyrical costume. Ashley is a competitive group dancer but only competes in Jazz right now. What catches my eye in this photo is her beautiful leg extension and that pointed toe. Ashley is amazingly flexible but she is still not confident in her dancing ability. I think she has potential to be a good dancer, maybe a great dancer; not the best dancer but certainly not the worst. Next year we are hoping that Ashley will compete in Jazz, Lyrical and Hip Hop.

Another reason why YOU should be can organ donor; so that Ashley can keep on dancing!

It's a new year with the same old medical issues. With the new cocktail of medicines that Ashley has been on for the last month, we expected to see some change. However, there really hasn't been any significant change; she isn't worse but she isn't better either. Her cough is still there and she is still coughing just as frequently. While we were in Mobile for Christmas, we were able to watch Ashley more and really see her symptoms. She is coughing at night but it's a different type of cough, mostly she wakes herself up takes a deep breath and goes back to sleep. Sometimes she wakes up and takes a walk; we found her sleeping in various places in my mom's house. Maybe she has sleep apnea, maybe she is sleep walking, maybe it is something else that we will never know about. Anyway, we talked to Ashley's pulmonologist over the Christmas break. He agreed with us regarding the ENT assessment of Ashley's cough. He agrees that it is not a sinus infection but s...

It's been a while since I updated everyone on Ashley. As the saying goes, "No News is Good News". Also, no news means that life is normal. It's been pretty tame here at the Johansen home. It's rare but it happens; a few weeks of normalcy. Ashley's recent illness was short-lived, thank God. We didn't have to go the hospital or have labs drawn. Having a normal illess is an answered prayer! Ashley seems to get sick at least once a month, so we will see how long she will goes without her next fever. Pray that she makes it through the New Year without any sickness. Cookbook Ashley's cookbook is coming along just fine; we will begin taking orders soon. There will be an online order form available on Ashley's main website by the end of the week. The cookbooks will sell for a donation of $12. However if you'd like to donate more it would be appreciated. Remember, your cookbook donation will go to Ashley's current and future medical expens...

Ashley's body is trying to tell us that something is just not right. However, we can't figure out what it is trying to say. Ashley woke up yesterday morning complaining of belly pain; this seems to be a weekly complaint. We followed normal procedures by taking her temp-normal, telling her to go to the bathroom-everything normal there too and giving her a bland breakfast of dry toast and water. Since she didn't have a fever, she went to school. Fast forward a few hours. I get a call at work, Ashley's in the clinic again complaining of belly pain. She says she feels like she needs to throw up but nothing happens. I leave from work to pick her up and take her home. At home she seems fine, but her face looks gaunt; she looks tired. I called her pediatrician and her liver doc. Both docs agree that we need to take her to the hospital to have labs drawn. So yesterday, Ashley and I spent two hours at the hospital waiting to have labs drawn; a procedure that only takes a couple ...