We got some great news today - Faith's two tiny holes in her heart (VSDs or Ventricular Septal Defects) have closed! This is actually very common for babies to be born with VSDs and for them to close on their own within the first year of life. The cardiologist said she has no cardiac issues now and we do not need to see him again unless something arises that we are concerned about.
The nice thing about Goldenhar Syndrome is that it is not progressive or degenerative, so there shouldn't be new health issues that weren't there when she was born (although there's a chance that we haven't found everything yet, like we haven't had a full spinal x-ray to see if she has any spinal defects - but nothing is suspicious at this point).
I can't wait for our appointment with the pulmonologist tomorrow to try out Faith's new Passy Muir Valve (PMV) on her trach. I'm thinking about bringing the movie camera to capture how she responds! Will definitely post again tomorrow night.
Until then,
Robin
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