Monday the 21st we went and saw Bella’s primary…and…we went alone – in my car, no ambulance. (did you feel the earth shake? ) :)
Bella had her 18 month well child check-up. We talked about her little hernia that she has developed. We talked about her weight loss. We talked about how well she has been doing and how she hadn’t needed oxygen for a full month before her pulmonology appointment. I told her about the pulmonologist’s plans to increase the time off the vent and the passy-muir. And her one comment? “How much oxygen is she on now?” Wow – that woman has obviously seen this all before because yes, oxygen has become our new best friend. And after our first hour on the passy-muir, Bella hasn’t been able to tolerate it again for a prolonged period of time. One step forward, two steps back.