Alexis

Alexis Julianna is 4 years old now. At birth, we learned of her condition, Tetralogy of Fallot with Pulmonary Artery Atresia. She had surgery immediately to place a central shunt, which was followed by two more surgeries to place shunts on her left and right side. She then had one more central operation to place a homograft.

Alexis had failure to thrive because she constantly would throw everything she ate up, and at a year old she weighed in at a mere 9 pounds. A feeding tube was placed in her stomach, and that helped her a lot. Alexis had to have physical and speech therapy from birth on, but without it she would not have succeeded in her development.

Recently, during a cardiac cath surgery, we learned of a fatal condition that she developed: Pulmonary Hypertension. Alexis is currently on Oxygen (1 liter) and will eventually need a bilateral lung transplant in order to survive. However, the risks are great, and with the help of her Cardiologist, Dr. Stuart Berger (Children's Hospital of Wisconsin) we are looking into experimental treatments such as sildenafil citrate  (Viagra) and possibly, nitrous oxide.

Alexis is a charming, funny girl that looks just like Snow White, and we are eagerly awaiting on trip to Walt Disney World on April 15, 2004. That is what she really looks forward to, and I am just trying to make all her wishes come true.