Well Monday’s cardiology follow up went ok. He did see some extra leaking in Levi’s pulmonary valve(?) i can’t remember the exact words tbh but he said he wasn’t concerned too much bc it could be related to decreasing his oxygen and his body adjusting or the fact that he was anxious about a blood draw but we need to keep an eye on it. Then Levi did his blood draw and he was nervous and screamed a lot at first but then relaxed and got it done and said it was super easy peasy. Then we went over to the hospital and he got to put his donations in the bravery boxes himself and he was so happy and said it made him feel so good!! 😍 I have no idea what i did to deserve him but i feel honored to have been chosen to be his momma. He has a heart of gold and i hope it stays that way forever. 

At his appts the week before we got some helpful news from the neuropsych doc but really she was just really impressed with him and said he’s doing so great. And then we had a follow up with his pulmonologist who wants to try and decrease his O2 so had us go down to 0.5L instead of 1 and see how he does and let her know. So far he’s doing good most of the time!! She also is reminding us to get him in for his flu shot and start the process for his RSV vaccine again but try and get the new one because it’s a one dose vaccine instead of every month. She also urged us to have a follow up with GI and see what their thoughts on a g tube are. She’s worried that his nutrition may start to hinder his lungs ability to remodel and stuff and wants to give him the best possible chances of doing well. He has been on 0.5L for the majority of the time for a week now and does pretty well. There are times he is struggling more and he does ask to go back up at times but it hasn’t been too often and he’s actually doing pretty well. 

He got his haircut on Tuesday and then did picture retake day on Wednesday which is huge bc he was so anxious about it the first time and wouldn’t do it.