On June 17, 2020 I was blessed with our beautiful Xander. His birthmark was not a conversational piece during our hospital stay (maybe due to our COVID story) but his siblings loved it and said he was Prince Zuko (Last Air Bender reference).
On our 2 month check up appointment, I mentioned a pump on his head on the same side as his PWS. A CT scan later we were informed that our baby boy was diagnosed with Sturge-Weber Syndrome. As you can imagine, confusion set in but here we are learning and supporting just the same way you all are.