Our first day at Duke

We made it through Riley's first day of testing for his one year post-transplant check up at Duke. This morning, we met with Dr. Escolar. Her offices have done all of the cognitive testing last March before transplant and back in November before we were discharged to come back to Chattanooga. From that meeting, we are receiving several recommendations on med changes. She believes we may actually see improvement in Riley's compulsive behaviors and sleep if we get him off some of the medications we've started recently to treat these same symptoms. The plan is to cut back slowly and get a new baseline and then begin treating one symptom at a time. She feels we have so many things going on now, we really need to get off as much as we can and start from there.

We were able to go out for lunch and do a little shoe shopping for Riley some sandals for the summer after the morning appointment. This afternoon, Riley had an eye exam. Dr. Escolar had also done a very brief exam this morning and told us his pupils did change with the change in light, but he didn't have a reaction when she made quick movements toward his eyes. It doesn't appear he is able to see much at all. The doctor this afternoon was able to tell us from his exam that Riley's eyes are healthy, that it is the connections to the brain that are the problem. At this point, there doesn't seem to be much we can do about his loss of sight.

That was it for today. It was probably our lightest day of the week. We came back to the hotel to rest around 5pm. Tomorrow, we have a very busy day. An 8:30am appointment with the endocrinologist, followed by a chest xray and echocardiogram, then pulmonary testing and nerve conduction tests. It will be along day with some not so fun stuff for Riley. Hopefully, he will have a good night tonight and it won't be so bad.