Leo, Our Little Lion Man

    Sometimes we have very specific things to update on. Other times it's just prayer requests and telling you what life with Leo is like. Today I have a little bit of both, I think.      First off, the tube. We are about two and a half weeks out from placement and he's doing well. The button is not completely healed up. It's not a fast process. So far, it seems to be improving and not getting infected. We have been able to give him and extra ounce or a little more through the tube after a bottle. We've also been able to use the pump some. We use the pump when we are giving him a significant amount through the tube; however it takes some figuring out because he often throws up after getting a large amount with no oatmeal. The oatmeal helps it stay down and he gets oatmeal in his bottles. I don't know if that makes complete sense but it's the best I got for here. Basically, I'm trying to figure out how to help his stomach handle more without throwing it all u

      We are home!      Thank you to all--again the words don't feel like enough--who have helped us in this transition. We have had people give us a place to sleep, meals at the hospital, meals here at home, prayers, texts, calls, visits. Thank you.      So. Leo and I are home and Brad is back to work! His tube port--I call it a button--seems to be less painful but it has some scabbing that I will be happy to see disappear. We are just caring for the site but able to use it. The button freaks me out more than it does Brad. But, I have successfully given him medicine through the tube and done a couple of feeds through it. We are using it supplementally. So he still takes most of his food by mouth, but we can put a little bit more in him with the tube. We can also give some extra to him at the end of the day if we need.      He still has spit up issues when his stomach is really full (and has no solids in it) so we would appreciate your prayers as Leo and I try and figure out a new

This is Phoebe, stepping in for another update while Charis and Brad are tag-teaming Leo at CHOP. Leo was finally able to get his G-tube placed today. Leo has been taking bottles and has had a few victories with weight gain, but nothing substantial enough to let Charis and Brad breathe easier. The procedure went really well but the recovery has been a bit painful. Leo was fairly agitated and kept kneeing his brand new tube. Please pray for a good night with adequate pain control for Leo. Charis and Brad said struggling to console him and keep him from aggravating the site was pretty frustrating and emotionally strenuous. A nutritionist saw Leo today after the procedure and was pleased with his progress at home. The plan is for Leo to continue to take most of his sustenance by mouth and supplement whatever he doesn't drink through tube. The short term goal is to teach Leo to eat more at a time and fewer times a day. Best care scenario, Leo gets extra nutrients from the G-tube and gr