Yesterday Emily came to visit, and the two of us together, we’re just the right mix. Even when we’re talking about sad stuff, we can howl, laugh with tears and doubled over can’t breathiness. I’m holding off to share how our community has surrounded us, but I have to give hints here and there. Laughter is the very best medicine, and some of our online community sent her with more than knee slaps. We feel loved.
Last night, too, Seth’s amazing sister watched Titus and let us slip away. She gave us several hours, and all we knew to do was go to a restaurant and just sit there. We sipped on our drinks for over an hour and finally split fajitas. We had two tortillas leftover, people. That’s when you know something’s up. When we weren’t running our fingers through our hair and sighing into all the things we’ve learned this week, we were, again, laughing. Nobody knows how I work like he does. The waitress called us love birds, and I thought it a miraculous thing to be called.
As of now, we’re going home today, and we couldn’t be more grateful. We think Titus will do better at home. We still have more questions than we have answers, but we feel comfortable right now going home with this feeding tube that bypasses his stomach and goes straight into his intestines. This type of feeding is called TPT, and he’ll only have them continuously at night. During the day, we’ll pretend to be normal and pray he doesn’t tug on the tube. He’ll be eating until he feels full, and he’ll be happy not attached to any beeping poles. The plan is to increase his nightly tube feeds until he starts gaining weight, and otherwise we’ll be in close communication with his doctors.
New findings for Titus are an allergy to egg protein that is possibly anaphylactic and a brain malformation called Chiari Malformation, Type 1. The doctors told us this probably isn’t the cause of his failure to thrive, but we’re to watch him sleep to check for apnea. My crazy eye googled out a little bit more.
Last night we watched the Olympics on our 12th night to sleep here – the pain, dedication, and prize of it all.
Out the window across the way is a building that reflects what’s behind – the Arkansas State Capital Building – and what’s above – the helicopters on the skillet sky.
Titus is yet to gain weight. Please continue to pray. Glory.