Two Year Post Transplant March 2011

It is so hard to believe it is almost the second anniversary of Riley's transplant. We've already passed the 2 year anniversary of his diagnosis of the horrible disease ALD. So much has changed in all of our lives in the last two years, but here we are. Back at Duke for Riley's post transplant studies.

Today was spent at the UNC Health Care Center for Riley's cognitive evaluation. We have been looking forward to this appointment for some time. Before getting here, we had already been working with the doctors at UNC to begin weaning some of Riley's meds in hopes of seeing some improvement with Riley's latest obsessive compulsive behavior, continually taking his clothes off. While sometimes it may seem cute or funny, just imagine never being able to leave the house to go to the mall, go to a restaurant, the park, anywhere you are expected to wear clothes! Basically, our homes and his school are the only places we go with Riley. One great side effect of weaning these meds we weren't expecting has been a tremendous improvement in Riley's mood. He is such a happy boy, practically all of the times. This has been such a pleasure.

A couple of things came out of Riley's appointment today. One, the doctors were concerned that Riley may not be hearing. They have added a hearing test for this week that wasn't scheduled before. He will have this tomorrow and we are anxious to find out the results. If he isn't hearing or not very well, hearing aides could be an option and we could possible see a difference in Riley's communication. Second, the doctor is recommending Riley go to a school for the deaf and blind. They believe he could really benefit and learn more from someone who specifically knows how to teach the deaf and blind. Unfortunately, this may not be an option. I haven't been able to find a school any closer to home than Knoxville. We will have to look in to this further.

Tomorrow, Riley will see his endocrinologist, have a hearing test, have vitals and blood work done, a pulmonary test and a chest Xray. Busy day! Thoughts and prayers for a smooth and successful trip are really appreciated.