Thursday, February 7, 2013

It's been a while. Did you know...

that Ashley was in the hospital  after Thanksgiving and before Christmas?  She had a bleed. She has varices.  Just a little reminder that she is not healthy and has a life threatening liver disease.

that we lost our beloved beautiful puppy, Sarge, on January 2.  It was sudden, shocking, and sad.  We think he had leukemia based on his symptoms.  Not sure if we will ever get another dog.  Sarge was one of a kind and a perfect fit for our laid back, drama free family.

that Ashley made the Principal's Honor Roll her 1st Semester of high school while taking all honors courses.  She is beautiful and smart.

that Ashley is still dancing for her high school dance team minus a solo this year. She loves being part of the team but really misses competing in her favorite style of dance, lyrical/contemporary.

that after a couple years of not having a dance studio to call home.  We think we may have finally found just the place.  Maybe someday Ashley will compete on a stage again and not a gym floor. 

that despite the way Ashley looks on the outside, she is still a sick girl on the inside.  We like to live in denial so it's okay if you don't want to think of Ashley as being sick.  Ashley doesn't even see herself as sick.  As a matter of fact, I heard a conversation Ashley was having with a new friend.  She told this friend that she has a liver disease and will need a liver transplant and can't ever have alcohol or do drugs.  This boy told her she was very brave.  Ashley responded with thanks, nbd  (no big deal).  So to Ashley her liver disease is no big deal or maybe living with her liver disease is no big deal. 

I love her attitude. Until next time, it's nbd.

Wednesday, September 12, 2012

Things are not always what the seem

My life has been absolutely crazy lately with the start of school, Ashley's after school dance practices and performances and now Brad's Fall baseball practice and games  I so apologize for not giving my readers an update on the goings on with Ashley.  For the most part Ashley is doing fantastically well despite her liver disease and in spite of her liver disease.  I can't remember if I posted about her last visit to Shands so I apologize in advance if this is a repeat.

As you know Ashley's platelet count has been dropping, well then it will be no surprise to you to learn that her platelet count is still low and even lower than her last report.  What will be surprising is that her liver functions seem to be elevating evermore slightly with each lab draw.  We aren't sure why. Which is pretty funny.  Of course we know why...the kid has liver disease. Really.  Anyway. Ashley liver doctor was having knee surgery during our visit to Shands and when her lab results came in he was home recuperating.  You know it is pretty serious when the doc calls you from home on his personal cell phone to express his concerns with the latest lab reports.  Of course, I love denial so I am not worried.  But we are working on a new medicine regimen then she will have blood work repeated in a month.  If that doesn't work, we will increase the dosage on her meds.  If that doesn't work...we are back to the drawing board, the guessing game...denial. 

Here is praying that her liver functions return to normal in just one month's time.

Now onto something more positive...DANCE.  Ashley loves dancing on her high school dance team.  Although she misses competing and studio dance.  Unfortunately, we have pretty much limited her dancing to her high school dance team because studio dance is so freaking expensive.  We are still hoping, praying...that Ashley will be able to perform a solo for the competitions that her high school dance team attends but that requires money that we just don't have right now.  Maybe just maybe that money will fall from the sky....grow on a tree in our back yard...maybe we will win the lotto or better yet, maybe it will show up in our mailbox.  One can only dream. 

I will post pictures of Ashley and her Dazzler friends that I have taken in the past few weeks.  These are a great group of girls. Ashley is very privileged to be a part of this group. 

Until next time...pray that Ashley's next lab results improve and that we have an uneventful rest of the year regarding Ashley's health.  God Bless!

Wednesday, May 16, 2012

Become a Sponsor

Now that Ashley is on the high school dance team she is required to get a minimum of $175 in sponsorship money. Below is the Sponsorship letter explaining more.   Our first $175 in Sponsorship money is due by May 30.  Please consider sponsoring Ashley. 

DO NOT USE PAYPAL TO DONATE.  Please write the check out to SHS Dazzlers, and put Ashley Johansen in the memo section of the check. Make sure you include a return address so that we can send a "Giving Receipt." Thank you.

If you have any questions, please email

Dear Sponsor,

As you know Ashley made the 2012/2013 Dazzler Dance Team of Seminole High School.  The Dazzlers are a five time UDA National High Kick Champion as well as a two time MA National Champions for both JV and Varsity.  And just this past season they won the FDTDA State Championships in both JV and Varsity in ALL dance divisions.  This is their ninth consecutive year winning that title. 

Every year, the Dazzlers proudly perform at the Seminole High football games during half time with our band.  We have also performed for the Dancing for Diabetes show, Arts Alive, the Sanford Christmas Parade and the Disney Christmas Parade.  This past year, we performed in the opening ceremonies for ICU held at Disney's Wild World of Sports and in the Disney Christmas Parade with the Shake It Up stars.  Several of our dancers were featured in the televised Capital One Bowl half-time show and many of the Dazzlers have traveled to New York City to perform in the Macy's Thanksgiving Day Parade.

In order to supply this year's dance team of on hundred members with all the necessary equipment, such as costumes, props, music, entry fees, transportation, and backdrops,we continually fundraise.  Part of the requirement of being a Dazzler is working concession stands at UCF games and the UCF Arena.  And each member is required to work a certain number of events each month.  They also work many athletic evens at Seminole and the traditional school fundraisers such as car washes, donut sales, car washes, and Domino's Pizza Card sales.  This is in addition to after school rehearsals, Saturday rehearsals, many performances and competitions.

However, even working the events listed above, we still must turn to the community, friends, and family for help in raising funds.  Your tax-deductible donation will go a long way in helping these girls remain National Champions.  As our way of saying thank you, your name or the name of your company will be printed in the SHS football program, and in the Dazzler Review program. 

Thank you for sponsoring a Dazzler for the 2012/2013 school year.  Your donation will be used to help Ashley achieve her goals during her performances with the Dazzlers this season.

Friday, May 11, 2012

Some Things

NO SURGERY.  Yes, you got it Brad does not need surgery on his elbow. The MRI results showed no tears, breaks, injury at all.  We are so happy about this especially since this surgery would have cost us $6,000 out of pocket.  Brad needs rehab to build strength.  He is working on pitching exercises provided by a sports trainer.  Currently, Brad is not playing baseball although he been asked to play with several travel ball teams.  We are looking at the possibility of hiring a pitching coach.  I know Brad is happy that he now has a good chance to get on the varsity baseball team next spring since he has no injury.

I have been sick off and on for the last few weeks which is the reason for the lack of updates.  We have plenty of reasons to update.  Like, Ashley quit dance.  Not really. But kind of. 

Ashley finished her last year competing in dance a couple Sunday's ago.  As stated before, this year in dance has not been what we hoped for.  Ashley has not been happy. Except for the fact that she loves her dance teacher and choreographer of her solos, Ms. Alexis Underwood, this year in dance has in Ashley's words, "sucked."

Ashley did end her competitive dance year with a 4th overall (out of approximately 25 other 13-15 year old soloist).  She is very happy she ended the year on a positive.  But now she is on to something new but the same...kind of.

DRUM ROLL PLEASE.  Ashley was accepted on the Nationally ranked Seminole High School Dazzler Dance Team.  She was also invited to audition for the Varsity team.  The chances of her getting on Varisty is pretty slim as there are even more talented dancers then Ashley.  However, Ashley is going to give it her best shot.  If anything she will learn from it and be better for it next year.

We are excited about this new part of Ashley's dance life.  And you can be a part of it too, just check back tomorrow to see how.

Friday, April 13, 2012

Update on Brad

Brad went to Jewet Orthopedic yesterday, the good news is he has no broken bones in his elbow. We are waiting for approval from our insurance company for an MRI. Once that is done we should have a better idea if  he has UCL tear in his elbow and if he will need "Tommy John" surgery.  Brad only has about three weeks free on his calendar for surgery.  If surgery is needed Brad wants to have it done ASAP.  However, with FCAT (Florida Comprehensive Assessment Test), AP exams and End-of-Course exams, scheduling this surgery may be difficult.  Plus he is scheduled to take the ACT test just after the last day of school which is May 31. This should be fun...Not.

Thursday, April 12, 2012

Pop Goes the....

Pop Goes the Weasel Elbow. 

When you are a dancer your most feared injury might be a broken or sprained ankle.  But when you are a baseball player especially a pitcher,  your most feared injury is that of the elbow.  We are experiencing that fear now.  Brad's elbow popped during baseball practice yesterday. He was accessed by the high school's athletic trainer and he suspects that Brad may have a torn UCL (Ulnar Colleteral Ligament). Right now he is at Jewet Orthopedic being evaluated. If the tear is severe he will need surgery, which means he will not be playing baseball for 9 months to a year.  And it also means he will be going through intense physical therapy.

Oh boy, more medical bills (said with all the sarcasm I can muster).

Brad is handling all of this well.  We are looking at the positive side of things.  We are blessed that this injury occured with only two games left in the baseball season.  He is lucky that there is only 6 weeks left in school, if he needs surgery most of the rehabilitation will take place during the summer and he should be back to playing baseball for the Spring 2013 season.  And as Brad says, the biggest benefit of having surgery, he will be back to playing baseball/pitching at 110% instead of just 80% without surgery.  I love it when he thinks about the positive side of things.

Personally, I am tired of all the medical drama.  Just two months ago my husband was in the hospital for a couple of days because a cat bit him and had a severe infection in his right wrist that was spreading up his arm.  We are still trying to pay off those medical bills.  Oh and Ashley got bit by the same cat, but thankfully avoided hospitalization but was placed on two antibiotics to fight off the infection.  I am ready for the medical side of life to calm down but I know that it will not especially since Little Miss Ashley has a chronic life threatening liver disease. 

I will keep you updated on Brad and is elbow.