More news - for a week or so now, Anna has not had oxygen during the day at all - just from 6:30 pm to 7am. Well, on Friday we took delivery of a machine to measure Anna's blood oxygen saturation levels (SATS), so we can take her off the oxygen supply at night too. We attach a sensor to her toe with some sticky tape and the alarm goes off if her SATS fall below 85%; the target is high 90%s.
So far so good - the alarm has gone off several times each night but only because Anna has been wriggling and the sensor has come away from her foot! Her SATs have remained at 96% - 100%, which shows that she doesn't seem to need the oxygen supply at all now. Hurray! The immediate effect is that her face is having a chance to recover from months of having tape attached to it.
Here's a lovely pic of les girls!
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