Sharing Scar Stories

Today has been such a great day! This morning, I got together with four other "liver moms" and a "liver dad" too! These other families live in or around Houston, as we do, and we have been corresponding for a while now...so we planned this impromptu play date of sorts.

It was just amazing to meet these other kids with Biliary Atresia who are thriving and doing so remarkably well, whether transplanted or not. And these other MOMS are just fabulous and have been such a source of strength and encouragement since Elise's diagnosis....it was wonderful to meet them, talk to them, and swap "scar stories." We talked about diagnosis, doctors, hospitalizations, surgeries, labs, family life...EVERYTHING!! Talking with these other parents made me feel so much more positive and reassured that life really can be wonderful in spite of liver disease.

New "liver friends:"   Sydney, Landon, Abby, Eleanor, and Elise

So, Elise has Biliary Atresia, and we just don't know when the time will come that she will need that liver transplant.  But after today, no matter what the case may be, I feel confident that things will be just fine. She will grow up and start school, make friends, go on sleep-overs, take field trips, and enjoy family vacations just like any other kid!

Elise & Eleanor 

Now I am really excited about the Liver Life Walk, hosted by the American Liver Foundation, which is being held on March 31st in Houston.  It will be a great opportunity to raise awareness of Biliary Atresia and other liver diseases as well as a wonderful chance to meet even more liver families like the ones with whom I spent time today.  I am including the link to Elise's liver walk page for anyone interested:

"Click" here to visit Elise's Liver Life Walk page

Oh, and it is really interesting to see how some kids like to show off their scars, some are shy about their scars, and some don't realize that they even have a scar.  I wonder what type Elise will be when she gets older??  Today, the kids I visited with were showing each other their scars and also showing them to us. Their kasai or transplant scars are healed, and their bodies look just perfect. Whatever Elise thinks about her scar...one thing is for sure...there will always be "scar stories" to share.

Elise showing off her scar from the Kasai operation