Earlier this week Lilly had her first bite of pureed sweet potato. This video shows that first bite as she considers it. She has eaten sweet...

I've been keeping Lilly hooked up to the pulse ox during naps. Her numbers have been dropping into the upper 80s some so we're hooki...

I didn't hook Lilly up to oxygen last night and we both slept better and felt better today. It's amazing how getting better sleep ca...

Happiness is snugged against Daddy ... It's costing us $206/month to rent oxygen and supplies. (Not counting $185 for the pulse ox whi...

Lilly has a special new chair. It helps hold her upright. She was fascinated sitting and seeing things from a different view. This is a ...

Aren't sleeping children one of the most peaceful things in the world to look at? :) We have found a heart surgeon in South Carolina wh...