It was Maxen’s 1 month liverarsry on Sunday. A lot has happened in this month. Recovery has been slow and bumpy and very revealing. Revealing in it affirming things we didn’t know or see or chose to ignore. The first two weeks of recovery were hard. Lots of bumps and took that amount of time for the happy,smiley Maxen to appear. The last few weeks have been better with many small victories but there were things that kept popping up that necessitated procedures and the bad days we dread. We were told recovery would be 2-3 weeks. The only explanation for this challenge time is that Maxen was really sick. We have slowly discovered this over the past few weeks since surgery. We both knew Max was sick. We could tell the last few weeks leading up to transplant he was weaker, fatigued, and not his usual self. But drs and nurses never fully let on to us the severity of his sickness or if they did we were somehow blinded to what they were saying. When things came up, it was always this is normal and expected with a kid who has end stage liver disease. Or everything was always going to be a little worse because he was a baby. But surgeons and drs have let out a few things here and there since the transplant that have hinted to how bad he was. Dr. Rao told us recently that Maxen’s transplant happened at the exact right time but really needed to happen a month sooner. He also made a comment to the affect that Maxen’s old liver had pretty much stopped working. And compared Maxen to a 60 year old adult with liver disease as in not as mobile, low muscle tone, and  his severe ascites (fluid build up). I have heard many times how Maxen was severely malnourished and how he is being used to teach others about how to measure body fat when there is any really to measure. It has been very scary letting all of this sink it and thinking about the past 3 months of the nightmare we have been living in. But it has helped me to realize how patient I need to be with Max as he recovers. We celebrate the big victories and accept the setbacks. We have gotten at least 3 different discharge dates and I’m not even mad or frustrated that has been the case. I keep telling drs and nurses, “What’s another day here?!?” They keep telling us how great we are for being understanding but I tell them, I am so worried about taking him home and something happens and we are rushing to the ER. Or what if I miss something or don’t see something that could have been noticed by one of them. Or we get home and turn right back around the next day and have to be readmitted for something that comes up. We are ok staying as long as he needs to be at Riley. But we want him home so freaking bad. The kid has turned a corner this weekend and it’s making it so much harder to leave him everyday. He is taking more and more by mouth, bottle and baby food. He is so happy and playing and squealing. He is acting like a normal baby. The drs keep coming by and talking about how impressed they are with him despite a few of his lab numbers being a little off. It’s been just amazing. Yet again, we are getting the “discharge this week” talk from the drs and we aren’t holding our breath. But we can see the difference and it’s making us hopefully.