I updated the surgery and diagnoses lists. He is age 11 now. Stridor, Sturdor, Obstructions, Partial Obstructions.... They have improved in some ways since the partial arytenoidectomy, septoplasty, and tongue base reduction. He still has it though. What is so challenging is that his obstructions are silent or very hard to hear. They don't wake me up like they used to. So, when I do fall asleep, who knows how long he has been lying there pulling for air. Over time it has caused some heart issues. The apnea has also caused some issues with growth hormone secretion, so he is a little on the short side. He is thin as well. At times, I suppose he burns many calories with breathing on the nights I fall asleep and don't hear it. The obstructions seem to be the worst during the first 5 hours of sleep, so I try to stay awake as long as I can. I flip him onto his side and push his head back to hyper-extend his airway. That is the best sleeping position for my son. My goal is to keep him healthy and strong and no heart damage as much as possible until science catches up with my son. He is a delightful, creative, bright, intelligent child. He is a gift. My greatest gift. My greatest joy.

Retractions with stridor

Mild stridor with retractions. Stridor used to be a lot louder. Now is often much more quiet. He has developed increased periodic limb movement and sweating with this type of breathing.

New Twist

When he was born, he had micrognathia, reflux, drooling, polyhydramnios in utero. Spoke to OBGYN that delivered my son. He thinks My child has Pierre Robin's Syndrome. Makes sense. Will have to see what ENT has to say...... Hhhmmmm.