Thanks

First of all, I want to thank all of you who sent me messages telling me not to blame myself for not hearing Riley Friday night. I really appreciate the support, but unfortunately there has been some real damage done. We will never know what happened to Riley in his room that night, but whatever it was, it was a traumatizing event for him.

Sunday, Joel and I decided to give Riley a bath, when Joel undressed Riley we saw bruises all over one leg and one arm. He is pretty banged up and we have no idea how it happened. What we do know is that Riley is terrified to lay down. He has not slept in his bed since Saturday night. I slept in his room with him, with him laying on top of me for most of the night and neither of us getting much sleep. We had a nurse over night Sunday, Monday and Tuesday and she rocked him for most of the night and he slept in his chair the other part. Last night he got the most sleep yet, about 7 hours. Riley is okay as long as he is in his chair or being held, but if you try and sit him down or lay him down, he begins grasping everywhere trying to find someone or something to grab on to. It is very sad to see. For a couple of nights now, holding his hand has helped. He wants to know you are right beside him. His doctors have had us go way up on several of his meds yesterday and today, really just wanting to keep him sedated until he gets through this. Unlike the past few days, today he has been happy as long as you don't touch him.

Since he is getting several sedating medications, we have decided to hold off on the new medication Riley was suppose to start this week to help treat the obsessive behaviors, so he is still constantly wanting you to "dress" him, even though he is fully clothed. Another change this week, we have had to increase Riley's tube feeds. Late last week, his eating really slowed down. When we were in the emergency room on Saturday, Riley only weighed 39 lbs. He had gotten to over 50lbs while we were at Duke and was down to about 47lb when we came home.

Tonight will be our first night since Saturday without a nurse and I am going to attempt to get Riley to sleep in the bed with me. Hopefully, if we can get him through the weekend, maybe we can get past this latest phase and move on and try to get some of the other issues under control. We will be going back to Duke for a week the week of April 26 and hopefully we can make some progress then as well. On a different note, I was thrilled today when Riley's lab results came back and we were told we could discontinue his magnesium and potassium. Riley has been on very large amounts of both of these drugs over the past several months. He is now finally able to maintain these levels without medication. I did his meds tonight in record time! As we get closer and closer to that one year mark, we should be dropping more meds. I am going to have so much free time on my hands!

Update - step one of tonight's mission is complete. Joel has moved Riley into the bed and he is sleeping soundly beside me. Now the question is, how long will it last?