This blog is meant to provide a place for family and friends to follow Olivia's progress in her fight to defeat her Alagille Syndrome. ---
Feel free to post any comments and questions.
We are the proud parents of Olivia & Amelia Huelsbergen. Olivia Anne came into our lives in Feb. 2009, diagnosed with Alagille Syndrome at 3 months old and sadly succumbed to complications from AGS shortly before turning 6 months old. Her story can be read at Oliva's Big Adventure.
Amelia Anne was welcomed into our family in Oct 2010, hale and hearty, with Olivia as her personal guardian angel.
Watching an episode of Medical Incredible before falling asleep about a baby whose heart condition sounded identical to Olivia's (They didn't use much medical terminiology, but it sure sounded familiar ... hole in the heart, missing pulmonary artery and a few other defects). The baby had surgery to provide a shunt for the lungs ... and then repeated at 18 months. At 5 they did a full shunt instead of the partials, and went from a "blue baby" to a pink child. She's now 10 and for the most part is a normal child playing sports etc.
She didn't have these other complications but it shows that even 10 years ago, they were dealing well with Tetralogy of Fallot.
Watching an episode of Medical Incredible before falling asleep about a baby whose heart condition sounded identical to Olivia's (They didn't use much medical terminiology, but it sure sounded familiar ... hole in the heart, missing pulmonary artery and a few other defects). The baby had surgery to provide a shunt for the lungs ... and then repeated at 18 months. At 5 they did a full shunt instead of the partials, and went from a "blue baby" to a pink child. She's now 10 and for the most part is a normal child playing sports etc.
ReplyDeleteShe didn't have these other complications but it shows that even 10 years ago, they were dealing well with Tetralogy of Fallot.
Lil Peanut- You do well and stay strong and always remeber when it is over you get to EAT.!!
ReplyDelete