So on Tuesday koko and mom made the 3 hour trip down to Rileys for her first check up. She did amazing in the car, sleeping the whole way except when we stopped in Peru for her to eat and get a diaper change. She woke up happy in the morning and continued to be happy all day. Once we arrived we headed to have another echocardiogram done. I'm not sure who was more excited to see who, Kora or the echo tech who was done most of her echos, but she of course did great with the echo and enjoyed looking at it on the screen. Then we went to see her Pulmonary hypertension team of Dr. Montgomery her pulmonologist,  ceiceila the nurse practitioner,  Amy the NP from the palliative care team, Nick the genetic counselor, and Dr. Serrano who was filling in for Dr. Johansen who couldn't be there. They were all happy to see her now chubby face, she now weighs 13.6 pounds,  and happy she is doing so well. They still dont have any real answers, just that for some reason her lungs stopped developing before she was born so they were more like a baby at 29 weeks not 39 weeks. The very best case scenario would be by the time she is school aged to get her off the meds and oxygen and let her be a normal kid. We just dont know and only time will tell. Her echo looked great even a little better than when we left the hospital. They have decided to try and slowly wean her off the steroid and if all goes well they will try to wean off the lasix after we see them again in February. After we saw the team, who were super excited we brought cookies, we had to go get a chest xray and then blood work. Miss Koko didnt cry, flinch or anything when they drew blood and they had to stick her twice. We then picked up her meds at the pharmacy and then delivered cookies to both units she stayed on. Unfortunately we didnt get to see any of the nurses who took care of her, but maybe next time. We stopped in the cafe so we could both eat and then headed home and again kora slept the whole time except when we stopped. It was really a great day. Yesterday mom got a call to let her know her xray was good and most lab work was good. One li er enzyme came back a little elevated so we will recheck in a month up here at our lab. So we will continue to watch and monitor her. See photos for pics of her in the morning before we left and after she had her lab work done.