February 16, 2010
Thankful for the good news we heard from Cincy Children's. They had me concerned yesterday. Tyler's bottom lip turns blue sometimes and his lips quiver, like he is really cold. It happens randomly and not connected to being outside. Sometimes after lunch or after a bath. I just assumed he was cold. Andy was afraid it could be related to his port wine stain - the extra blood flow by his face etc. So I called CCH. Talked to the hemangioma unit and the nurse there was concerned. She was glad I called and wanted me to follow up with the neurology unit to see what they thought. Then she asked me to call her back and let her know. So I spoke with neurology and after 3-4 phone calls this morning we are concluding that he is OK! He is responsive when his lip is blue, he is acting normally, we think that he is JUST cold. This might sound dumb to you but when you go to all of the appts at CCH and they tell you all the signs to watch for regarding a seizure plus read about all of the complications a PWS can cause you understand my concern. Yesterday they were talking MRI, today after consulting with the neurologist we're ok. Her explanation for why it might happen after eating made sense. He is just cold. I can keep warming him up with a blanket. Thank you, Lord.