Milo has had a great couple of days. You can always tell how well Milo is doing be how mischievous he is. He has been climbing the walls. Chucking everything out of his crib, and last night pulled his g-tube out.
After getting his chest tube out discontinuing his tpn and lipids he has been able to leave his room and move around more! They brought us a stroller to use around the unit and we have really enjoyed getting our steps in. We stop in front of the window and admire the boats in the ocean and squeals hi and bye to everyone that walks by. He’s even been practicing his own walking in the hallways in his baby grippy socks and diapered booty hanging out of his gown.
He also has a new mat to play on in his room and has been enjoying some movies on the tv. A couple of favorites have been Cars, Moana, Sing, and obviously Cocomelon.
We have also started working on oral feeds with speech therapy. It is wild that a week and a half ago he had major esophagus/airway surgery and he is already working on eating! He has had fun tasting icecream and chocolate pudding along with sips of water. It isn’t huge volumes. He is working past aversions developed during serial dilations as well as physical barriers. But it’s progress!
Since starting his g-tube feeds again post op Milo has been struggling to tolerate his feeds. I’ve been spending good chunks of my day dodging vomit. His Doctors have been playing with the frequency of feeds, volume, venting, timing, feed rate. Hopefully he will get use to his feeds again and will be able to tolerate them soon.
Overall the boy is killing it. And I’m just his hype girl!
Go Milo!!!