Out of the fire and into the pan

   Nothing but progress with Cully each day. We have been seizure free for more days than I am counting now and as you can see he has lost all that chubby fluff that he gained from the ACTH treatments. A well proportioned body and a very outgoing personality has taken place of what once was a 62 pound horribly uncomfortable child with tears and fear.  And Mum and Dad have lost that panic induced adrenalin rush and all the other emotions have come flooding in to take its place.

  Cully has been attending his school each day and is no less eager to step onto the bus each morning as he was the first day he climbed on and never looked back. His participation with his new found friends and teachers has been wonderful. That very unique character that Cully possesses to comfort and his "Big Brother role" to everyone has become his trademark.  Another student in special needs, another autistic boy who carries the common unsocial personalty of an autistic child, has become close with Cully. A boy who does not care to be touched or interact with any other children or adults has connected with Cully from day one. Cully can touch his face, hold his hand and interact well with him. One example that has surprised everyone is when he brought a toy over to Cully and asked him to help him open it. Cully did and handed it back to him and off he went to play.  Cully has a special trait.

  Night time for Cully tends to be full of nightmares and sleep issues. He is handling it well and you can find him taking control of the situation many times as he amuses himself with his toys behind his closed door. It is not uncommon to wake to the sound of Cully playing. 3 am this morning we heard him playing basket ball. He had taken an empty bucket and hung it from the closet door. He would toss a block into the bucket and cheer himself on with a "GOOD JOB!" or an "AWE MAN...." with each miss. 

  Health wise Cully is wonderful. His growth is ahead of the charts as always. Seizures seem so long ago. We have two more medications to ween off still and we are in high hopes these seizures will not return. 

  Cully has a ways to go academically yet. Julie and I spoke for a moment this morning about this. We see Cully each day and tend to not notice delays in him or small changes. Step back and look at him and you will find he is far behind in his speech using only two or three words at almost any given moment. This is a focus right now with his therapists. I see many of the autistic traits now and then but tend to forget Cully is anything but mainstream. You never know when Cully will surprise you with something fantastic. Out of the blue you may hear him speak a complete sentence or do something that you would think is far beyond his abilities. The trick, or hardship for us is learning what the trigger is so that we can help him find his way to continue performing these things.   I think that is what autism is all about.  ?  

Selfishly I find myself  overwhelmed with all that comes after the initial shock and fear wears off. Cully is doing well and now the focus is on the long road ahead and the damage sustained as we entered all of this. Financially  emotionally, and mentally I am spent.  I realize just how off track we got with all of this and how much it takes to make a come back. I hope I am half as strong as Cully has been or as able as so many of the great friends we have met that have and are going through this.  Many having much more on their plate than we do..   

  In closing of this post..... updates are not as frequent these days as the challenges at hand are those that take much more time to meet. And I hope that those are all we have. I feel very positive about the seizures and I think that Julie and I are going to find all those tricks to help Cully with his autism and his development.

 Now what?