Sunday, December 05, 2010


I haven't updated you in a couple weeks because I just haven't had the words to use. The Wednesday before Thanksgiving we say Dr. Lohr a psychiatrist that specializes in cases like Nick's. He is seeing us as a favor to our pediatrician and psychologist. He doesn't take new patients. It was a miracle that he agreed to take our case and we have been waiting for 2 months to see him. After saying all that he called the Monday before Thanksgiving and asked to see us on that Wednesday.

so the whole family goes because the kids are out of school and John wanted to hear what he had to say. Long story short: the direction he is looking is called PDD: Pervasice disintegrated disorder. No I had never heard of it either. It is the 5th category on the Autism spectrum. Yes it scares me and yes I'm crying as I type this. This is not something I was prepared for. Ok back to the treatment. We are in the process of taking Nick off all medications. Wow! He is bouncing off the walls and at times driving me crazy, but I'm glad Dr. Lohr wanted to do this. It will give us a new base line then we will go from there. We did not get a definite diagnosis. He will spend some more time with Nick before we are given one. I think that is what is driving me crazy. The not knowing. The other thing Dr. Lohr was concerned about is Nick's sporatic sleep patterns. He said this is very concerning. Most of you probably know but some of you might now that he will sleep ok for a few days then not sleep at all. There is no pattern to this and you never know when it will happen. We have not been able to find a trigger for it. I guess that is why it is very concerning.

I have been walking around in a fog since we saw him. I was just totally not prepared for the word autism to come up. It wasn't something I had thought about. My educated brain knows there is nothing I can do if this is the diagnosis. I will deal with it. But my heart seems to not be able to deal with any of this. I just want to stay home keep the kids at home and not have to deal with any of this. I'm very anxious and worried all the time. Having horrible dreams and just not sleeping in general. Everyone keeps telling me it will be ok and I will deal with it, but he is not their son! He is mine and I want to be able to fix this. I don't want him to suffer or have a heard life because of this. YES I know it could be so much worse. But this is also something that takes some getting used to. and I'm not used to it yet. I'm sorry. I wish I could just flip a switch and process it and get over it. I just haven't gotten to that point yet.

Tomorrow we go back to see Dr. Lohr. I'm a nervous wreck. What will happen? What will he say? Will tomorrow be the day we get that final diagnosis? these guestions keep rollling through my head. What will he tell me I won't be prepared for? will I ever be able to deal with any of this? I don't know. I just can't seem to shake it.

I wish I could just make time stop right now. The kids are outside playing in the snow, life is slow, it is cold outside and cozy in the house and it is just my family. I just wish I could keep it like this for a while. maybe until I'm ready to deal with all the other. Your probably reading this thinking I need to just get over it and how much worse it could be and I apologize for not being able to do that yet. Just quit reading and I wouldn't come back to this blog for a while. I can't promise when I will be ready to deal with life again.


melodie said...

Hey...what did you find out?

lesley said...

We love you all so and everything will work out . Praying for you and am amazed at your strengh