13 Jan 1999

We got home yesterday from Bethesda, Maryland. Joshua was invited to join the program they have there. Right now it seems that we may be going up in March sometime, but that is not definite yet. What is definite is that we WILL be going back up and Joshua will be admitted into the National Institute of Mental Health for a very in-depth program. The diagnosis is more than likely Schizophrenia or Schizoaffective disorder (sort of a catchall diagnosis). They mentioned a few other possibilities, but did not believe it to be any of the others. Autism, Bi-polar, and Degenerative Development Disorder were a few that were mentioned. We have heard it all before except the catchall Szhiophrenia one. We spent most of the day on the ward Josh will actually be living on during this time. We were able to sit back and listen to the patients having lunch with the nurses and such and we were quite pleased with the atmosphere. On this trip, we did not have one bad experience with anyone there. We liked most of the people we dealt with a lot and there was not one person we did not like. I actually feel like I already bonded with a couple of the other mothers there. They shared some of the NIH tips and secrets with me. The first three weeks of the program will simply be an adjustment time for Josh. They will not do a lot of testing or change his medication during that time. At the end of those three weeks, they will take him off of the medication so they can see what he is like without it. The washout time will probably be around 3 weeks. At the end of that three- week period, they will start him back on medication (probably a different type to see if it works better, the same, or not as well). This last process could take as little as 6 weeks, but could take longer depending on what happens with the medication. We have the right to take him out of the program any time we decide to or to deny them the right to do any particular test we don't want them to do. Hope this is making sense. It has been a very long day. Should be in bed, but still sort of keyed up here. He will be admitted into the hospital itself and will attend school and recreation activites while there. His day will be quite structured and normal for him (as normal as any day could be for a child with Joshua's illness). Visitation is from 4\:00 to 8\:30 each day and, except during his drug washout period, we can check him out and go to dinner or whatever we want during visiting hours. We can also check him out on Friday afternoons and return him Sunday nights.

We have a lot of questions to ask before we truly commit, but we have made up our minds.

Josh went to school without making too much of a fuss this morning. He was looking forward to telling everyone about his ride on the plane. He was so tired tonight though. He said he wanted to go to sleep at 6:30. I did not try to make him stay up later. We may be up before the rooster crows tomorrow, but he will feel much better.

It was suggested that we make him sleep in his own bed, but we are not going to do that right now. It is hard to explain what the child goes through at that time. Making him go to school is one thing (a completely different type of upset), but forcing him into that bed he hates so much is heart wrenching. I suppose the words that come to my mind are terror stricken.

I've quite a few things to check on and take care of. One of the parents at the clinic told me to ask about the Guest House. I think I would be better off at the Children's Inn, but am going to check on the Guest House anyway.

Josh's sinus problem really caused trouble on the flight home. His ears hurt some on the way out, but they were really bothering him coming back in. I need to talk to the pediatritian's office or to Dr. F. about getting him some drops or something for the next trip. Also need to make sure I take some gum.

Going back a bit further, I just want everyone to know Joshua had a wonderful Christmas. He was so into things. He acted younger a few t imes (he buried himself in Christmas paper like he did when he was a baby, etc) He actually asked for some specific gifts and sat on Santa's lap. He has come so far lately--it amazes me.

This morning his teacher commented on his improvement last week. The first time this year, Josh raised his hand to answer a question. She said she would look over at him, catch his eye, smile, and she would get a return smile. Such a dear woman. She gets as excited as I do sometimes.

Oh, one of the women in LOTH works at NIH! She is planning on showing me all the shortcuts and such when I am up there. Going to be great knowing someone that is so closeby. Yes, I only know what she types on here, but sometimes that is a better way to really get to know someone than face-to-face. All the social barriers do not exist. We all tend to open up more on here. I am quite aware there are many people on here who pretend to be someone they are not, but I think that is less often the case (at least in the circles that I travel on here.)

I know I am leaving tons of stuff out, but it is late. I had promised a couple of people I would get this updated today so I wanted to work on it some. We have a lot of people who love and pray for Joshua. Many have never met him, but he has touched their lives and their hearts.