We got home from the hospital Friday afternoon. There were a few last minute changes to meds before leaving. A decrease in her steroid, adding a medication for high blood pressure, and figuring out when they would get us the formula for her overnight feeds. So those few things kept us a little longer than we would have liked. It has been so nice being home. Unfortunately Nora’s schedule is so messed up from the hospital. Our first night home was rough; up every 2 hours just screaming. She is just so sweet overly tired. Last night was a little better. The steroids make her irritable so when she wakes up too early, watch out! Eating since surgery has been a struggle. Right before we left the hospital they decided we could just do feeds at night and see what she ate during the day. Today she ate so well! She wasn’t just saying no and turning her head away. She actually wanted to eat, like she ate tilapia for dinner. Since she is eating better and her weight is up from yesterday, we are self adjusting her feeds at night. We felt she may be uncomfortable at 35mL/hr (like we told the docs all along) and starting then at 7, when you sit down for dinner at 6 is really soon. We thought this discomfort could be contributing to unrestful nights. I feel bad not following the doctors orders but when she is eating better I think it should go down and it’s all just extra calories for her. She was much more playful and talkative today. She absolutely is not a fan of her shots 2x/day but cleaning her skin with the alcohol wipe is worse then the shot itself most of the time. She has been a champ with her meds and we are starting to figure out a system. She honestly is on 13 different meds right now! I thought 2 was hard to keep track of before. This will drop down a lot on the nest few months and just a few by one year. I tell ya, this grape syrup they make to mix with her tacro is a miracle! It goes down quicker than fruit snacks! Tomorrow begins our 3x/wk labs. Praying that it’s a good lab tech and she does good for them. We have appointments every day this week and will see Dr C weekly for at least a month. We are hoping to get her started back with OT soon. Waiting on PT until her abdominal precautions are lifted. Otherwise Nora has been enjoying her new bike. Before we left Dr C insisted that we get Nora a present, a really big present because this was a major surgery and she deserves it. He made us decide what we would get her right in front of him. We decided on a bike and he told us it better not be a cheap one from Walmart. So Friday afternoon we went and got her a bike! Her feet are still a little short for the pedals but she absolutely loves it! I’ll try to add some pictures to the blog! Hope everyone had a great weekend! We are so very thankful to be home but know there is still a lot of major steps to get through ahead of us.