teamgreene: Our life after transplant

The hardest part about reading the post from March 11 of last year was remembering that Dr. Martin told us Riley was in the top three of kids whose ALD was caught the earliest that he had transplanted. This meant he was an excellent candidate for transplant, or at least he should have been. Also, to read that Riley should have been in the hospital for about 4-6 weeks and that we would be in the Duke area until the 100 day mark - boy were we wrong! Riley was in the hospital for 173 days, out for 10 days and back in for 10 more, and we were in NC for a total of 238 days.

Speaking of Duke,we have the dates for Riley's one year follow up appointments. It will be the week of April 26. He will undergo a whole battery of tests, basically the same ones he did this time last year, only I'm sure the results will be much different. We aren't sure if they will be able to do some, like vision. We believe that Riley has lost most of his vision, but not all.

Something else I am very happy is underway is an assessment by the Hamilton County school district. This is scheduled for March 22. I really don't think it would have happened if it were not for Riley's homebound teacher, Betty Hornsby. Betty has not been able to do much with Riley, but she still comes twice a week to see him and once a week to see us and does what she can. Unfortunately, when Betty was assigned to Riley, no one had told her anything at all about him, or even that he was special needs. This was very disheartening to me, especially since I had started calling the school district trying to start the ball rolling back in November before we ever left Duke. I did everything I was told, but it seemed we were still slipping through the cracks. One of the first things Betty told us when she first came to meet us and Riley was that she didn't know what the procedure was for special needs, but that she would be our advocate. And she has! We know Riley can not go to a regular classroom next year, but what we don't know is what IS available to him. That's what the assessment will help with. We will work with someone to create an IEP, an Individual Education Plan for Riley. I haven't been too concerned about the period he is homebound while isolated. It is the next school year that I want to figure out.

Also new, meds. We are about to start Riley on a new medication to see if it helps with his compulsive behaviors that is driving us, and probably him, crazy. Unfortunately, it sounds like we are actually waiting on the request to get denied, then appealed, then hopefully approved. Crazy. That's about it for now!