Update

It has been a while since my last update and I have good news. For the first time in her life, Avigayil is going without oxygen!    It happened a few weeks ago. During the day she was doing so well that the doctor gave us permission to turn off the oxygen and leave her on just the breathing machine. This worked well for a week or so while she was awake. She still needs oxygen when she sleeps or does strenuous activities like physical therapy. Then Avigayil got sick.
Her fever was very high and she needed the oxygen again.  It took a few days to find the source of the infection but thankfully, they found it and got her on an appropriate antibiotic.  She is doing better now and back of the oxygen when awake. We are hopeful that she will continue to improve.