Well things have been changing with Avalynn. Her secretions have gotten worse. I believe she's hurting now, and luckily the morphine can help that now too. She is having Brady's, not just apnea episodes. Which means her heart stops as well as her Breathing for a matter of seconds. She isn't tolerating her food to the point that she is losing too much weight...She's slowly starving. We are working towards getting her a vest that will vibrate her thorax, breaking up secretions in her lungs, hopefully letting her expel them. But she may be too small for it. We are experimenting with her food, trying to feed her more in a day by doing twelve hours of continuous feeding at a lower rate over night. And her normal feeding during the day, every few hours. We are trying to resolve and compromise her need for oxygen, a medication for her heart and lungs, with her need to eat. The oxygen puts pressure and air into her tummy and makes her aspirate her food. It's a battle finding the balance. We are going to try fortifying her food too, adding calories to her food without increasing the dose.

Please pray with us these changes are beneficial without other issues.

And as always thanks for your support. It's easier knowing we are not alone.