Davin's Breathing

So it seems that being dx with a rare disease has been good for a decrease in hospitalizations, however, we are starting to find out how much the medical community DOES NOT know. Specialist visits are being filled with "I don't know" and "what do you think we should do". It is clear that we will need to rely heavily on the Lord. I am so grateful that things are working for Ryan. He seems a little sicker than most kids, but almost normal- it has been such a breath of fresh air. I hope that he can continue making progress! The shots seem to be helping Ryan (knock on wood), but Davin is another story. No one is sure how to proceed. We might have to consider more radical sinus surgery for him, however, I'm not sure if that will work either. At any rate, we are adding another medication to help them fight off infections. My head is just spinning. Davin is so skinny, even with the steroid injections and medications he still is small. One of our regular doctors feels like his speech delay has more to do with his chronic sinus inflammation which makes sense to me- that is good news. Attached is a file of Davin's breathing. You may need to pause the music. Even though it sounds like he is snoring, it is his normal breathing while awake and just sitting (called a stidor)- hence the steroids. It is getting better in his windpipe, just not in his sinus. Any ideas??? I'm maxed out of ideas?