Sorry if you all were confused by a post on 9/1/17. I don’t know why it posted last Friday as it was a post from the week of surgery so end of July. We are not back in the hospital. We are home and doing well. We were able to make it up to the cabin again this weekend. Nora doesn’t sleep great on the way up to the cabin and therefore she gets sleep deprived. The steroids are not helping this either. We would love to just let her sleep later in the morning to make up for being awake late into the night, but timing of meds is crucial for her care so the latest we can let her sleep is 7:30am. And she is not a happy camper when we wake her. The steroids are making her very hungry, messing up her sleep schedule, and we think the build up of steroids in her system is interfering with her emotions as well. She has been pretty irritable. Dr. C is closely watching her labs and last week one of her liver function tests, ALT, started to trend upward. It was just out of the normal range (0-50) and hers was 51 on Friday but it started at 31 on Monday. Labs are the only way we will know if she is rejecting or not so this trend the wrong way has us a bit stressed. At our appointment with Dr. C today he was still very pleased with everything but we are anxiously awaiting her labs from today. Usually they post them within a few hours so I don’t know why I don’t have them yet in her MyChart! Today they did decrease her steroid more as we have to slowly taper her off of it. Our transplant coordinator said the steroids make the kids crazy and usually they try and get them off of them within 30 days, but Nora will need them for longer due to the ABO incompatible liver. We see Dr. C again next week and then we will start spacing out our appointments with him. This is a quieter week for appointments as we just have PT, OT, and one more lab appointment. Next week we have 3 lab draws, follow up with Dr. C, neurology for her stroke, hematology for her clot, and the OT. We also get to start music class next week. Thanks for the continued prayers and support! Hope everyone enjoyed the holiday weekend!