At Eleanor’s last swallow study, two weeks ago, she aspirated both thin and thick liquids, which took her off of all oral feeds until the study could be repeated. That was, as they say, NOT GOOD.
Today was the repeat test.
She swallowed thick liquids, no problem. Still a little aspiration on the thin, but did great with the thick. She had a nice, strong suck and was able to get a decent volume out of the bottle on her own.
As of today, they started her on bottle-feeds, breastmilk with a thickener. Every three hours, they’ll let her take whatever she likes by mouth, and then give her the remainder of the volume by NG tube. For her first one, she took almost half. Downright impressive when you realize she hasn’t done ANY for two weeks.
This is progress. SUCH progress, I can hardly tell you. To know that she is making these developmental strides, that even if progress isn’t lightning fast, progress is being made…
Sometimes you don’t realize the extent to which you’re holding your breath until you actually exhale a little bit, or how heavy the load on your shoulders is until it gets lifted.
There are still many steps to go. There may be steps backward, and the ones that go forward won’t be as big or as quick as I wish. She still isn’t home. We still don’t have a diagnosis for what underlying Thing is going on.
But this was a good day, and a very very welcome one. Thank you for all of the thoughts, prayers, energy, and strength that you sent our way. I was so proud of my littlest girl today.