Skip to main content

BA Blog Roll Call

If you have BA (biliary atresia) or if you care for someone with BA and you blog about your journey with biliary atresia please leave a comment under the post with your blog address as well as a brief description of who you are and the title of your blog. You don't have to include the description of your blog if you don't want to.

I'll put all of the blogs together in one post and I will also list the blogs in the sidebar of the Love for Ashley blog. My goal is for your blogs to be used as resource for those looking to connect with other people dealing with biliary atresia and want learn more about the disease and liver transplantation/organ donation.

Please, ONLY leave a commnet if the blog is your blog, don't post somebody else's blog address.
Labels:

Comments

Anonymous said…
I do not have a blog, but I do have a daughter with BA. Amber Sue Romenesko had her Kasi in 1986 and has been extremely well ever since. She is currently 22 and lives with her boyfriend as sh continues her education to become a math teacher.

Jeffery James Romenesko
2612 S. Gladys Ave.
Appleton, WI 54915
June 21, 2008 at 9:49 AM
Post a Comment

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 d...
1 comment
Read more

ALF vs COTA - Loosing Sleep

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. Howeve...
1 comment
Read more

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...
3 comments
Read more