Skip to main content

Life Goes On

This weekend Ashley participated in her first ever dance competition sponsored by Hall of Fame Dance. Ashley was only in one number and she did pretty good except she messed up on a leg extension; she lost her balance but despite Ashley's error, Arrazando won the top honor for the day. And because it won top honors there will be a video of the number on the Hall of Fame website. As soon as the video is made available, I will place a link here so you can watch Ashley dance.

Ashley will be busy at the end of this month. We have been busy making appoointments, scheduling medical procedures and shuffling doctors. We were really hoping that we could keep Ashley in Orlando for all of her upcoming procedures but with a dysfunctional G.I. Office in Orlando, we have decided to go to Shands in Gainesville for her procedures.

On February 25, Ashley will have broncial scope in Orlando. We are hoping to see that her esophagus, trachea, etc. have heald. Since Ashley has been on her new anti-reflux medication, Prevacid, she is coughing less and less. She still complains of tummy pain and headaches so we aren't sure if this is related to the new meds, her liver disease or something new altogether.

On February 26 through 28, Ashley will be at Shands Hospital and the Shands Liver Clinic. Here she will have her Endoscopy, ultrasound, and an appointment with Dr. Gonzales, of the Liver Team. Ashley is still doing pretty good liver wise, at least that's what her past labs indicate. I personally don't feel that Ashley will be listed for a new liver any time soon. However, I am anxious to see the results of her scope. With a low platelet count and an enlarged spleen, Ashley could very well have some varcies. If Ashley has varcies, she could have a major life threatening bleed. Unfortunately, if she does have varcies there isn't a whole lot the doctors can do to prevent a bleed.

The cookbook is coming along. I still have many recipes to add to the cookbook that others have sent in but we should have the cookbook before the end of March. Please be patient with me while we finalize the details of this cookbook. I had to enlist in the help of another graphic designer because of the requirements from Morris Press, the cookbook publisher. We are still accepting orders for the cookbook so if you haven't ordered your cookbook, please send me an email. I will send you an order form and payment information.

With everything going on in our lives, life does on and that's always good!

Comments

Popular posts from this blog

Living through Dance

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.  Ashl

Answers lead to more Questions

In great Ashley fashion, she did very well with her trip to the hospital and recovered well from the procedure. Right now, Ashley is off with her Grammie getting spoiled by shopping. With no one in the house but me and the pets, I am off to my own devices which usually means I have to much time to think, to research, to worry, to vent, to hope and to pray. Today Ashley had a broncioscope to find out why she has been coughing for six months. After getting up at 4:30 am and at the hospital at 6 am, the scope began at approximately 7:30 am. The procedure itself took less than 30 minutes. The outcome of the procedure left me with more questions than answers. We do know why Ashley is coughing, Ashley has a vocal cord dysfunction, enlarged adnenoids and tonsils. Finding out why Ashley is coughing is good news, however, we also learned that Ashley may have other issues involving her lungs. There was 60mL of fluid in her lungs. Some samples of her lungs were sent for a cell count, bacterial cu

Ashley's Story

“Although Ashley’s liver is failing, she isn’t sick enough to be placed on the liver transplant list. We were told that Ashley would need a new liver by the time she reaches puberty." Ashley was born at the end of July in 1998, but her story doesn’t start there;her story begins when she was just a little peanut in my womb. At 24 weeks gestation we learned we were having a girl, but our little girl had something wrong with her. Imagine sitting in the examining room, and the excitement of learning you are having a girl, then at the same time you hear the silence in the room when something is just not right with the baby. We were told that Ashley possibly had an ovarian cyst. It was normal and not to worry. But something told us it was more than just an ovarian cyst. As soon as Ashley was delivered she struggled to live. The umbilical cord was wrapped around her neck twice, and she was blue. Thankfully the doctor cut the cord immediately and although Ashley was still blue; she was b