2/20 - one week after surgery

Good News: Leo had the best week he has had in a long time. His eyes are healing nicely. He did several hours per day on the passy muir valve after being off it for months. He was alert and interactive all week. We even did some tummy time. He has basically been sick since October so this week of healthy Leo was a joy!

Bad News: Leo's eyes are still not shutting when he is asleep. We had a follow-up visit on Tuesday with his surgeon and she didn't seem very concerned. She said "just push them close". Okay, seems simple....well they pop back open as soon as you close them. I'm sad and frustrated that we put our little guy through a painful surgery where he came out looking like he lost a brutal fight and we are not getting the results we expected. I need to follow back up with the doctor, but she made it sound like this surgery was the key to saving his eyes...now what? I just don't want to hear the answer yet. On a more positive note, his eyes do look good. Maybe them being "less open" when he is awake is helping. He still has the scars from abrasions but the doctor said those would take a long time to heal. I guess only time will tell.

We also had a fairly rough nursing week. Two nurses have sick families. We didn't have night nursing Wednesday or Thursday and no day nurse Tuesday...and she had to leave early yesterday. It could be worse...much worse but I hope they get it together next week!

Next Thursday Leo is scheduled for his ear tube surgery and ABR hearing test. Pray for good news that Leo has a chance of hearing!

2 days post op

4:00am sleeping with my eyes open

Captain Hook? No Miss Sammie the Pirate!