He is on .1 oxygen and they don't want to lower him further, instead we are going to "challenge" him with lots of eating. to see if we can get him eating more than one ounce at a time without harming his lungs. and maybe to avoid g tube surgery if at all possible.
We are moving to once every two weeks for lab tests.
He is 12 POUNDS! Putting himself at adjusted age in the twentieth percentile for weight, but still not officially on the charts for height. He is a tiny little guy.
And we are still just trying to take it day by day at home, trying to fit in all the medical upkeep, take care of gigi, and make dinner. We are so lucky to have night nursing, because the days are pretty brutal in terms of his care. It really takes one person wholly dedicated to keeping him going at all times. We will be pretty excited to drop one of our machines. I might be a one woman parade when it happens.
Goodnight,
Joy
1 comment:
Hurray for Jules and the Seattle Silvers!!! \o/ Amazing news!!!
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