A few Pictures. a couple Videos. and the rise and fall of Daddy

   It's 1 in the morning and I am completely spent. Cully has done me in today but I can't seem to put my head to the pillow just yet. The past 72 hours I have gone from one emotion to another and I found myself in tears and in a panic to a moment of peace with a content smile and then onto complete frustration and even a touch of anger. Somewhere in there I even found a few chuckles....

  Can anyone describe being a parent any better than that?

   Our wonderful team at Detroit Children's Hospital took Cully in immediately after our phone call. A whole day early from his set appointment. My wonderful wife picked up Cully from School, picked me up from work and we traveled the distance to Detroit and Cully was wired up and monitored for a three hour EEG. Cully did very well with a smile on his face as he was poked and bumped around while the leads were glued on his head and he was wrapped and taped up like a gift box. Mom blew bubbles with him and he watched cartoons on the TV. I left for a moment to make a phone call and when I returned I found him in a deep sleep with Mum laying right beside him.

  The EEG found no Hypsarrythmia patterns but did find spikes in his right side which are indications of the likelihood that he will be susceptible to other forms of epilepsy. This is ok just as long as the Hypsarrythmia is not present. Hypsarrythmia is the pattern that expresses the IS, the seizures that we fought so hard to make go away.  And it is all as confusing as it sounds. But to put is simply.... It appears that Cully is still ok. Still in a safe zone provided we do not continue to see more seizures.

  Today Cully was in an over the top good mood for the early part of the day. Come the later part of the afternoon Cully pushed me to my limits. The mood changes and the sneaky mischief behavior overcame dad. I will give the Cliff note version of todays events as I could go on and on with the stories.

  The breaking point came when Mum and I found a minute to sit on the deck together for just a moment. It was my chance to take a breath and connect with Julie for perhaps nothing more than to just look at her with no interruptions and  say "Hi... Love you...hope you are doing ok today.."  This while Cully just had his favorite Barney show put on in the living room..     I knew better though... A few minutes passed and I leaned back in the chair and cracked the door open... "Cully Gage....come here for a minute" I called..  I was outside my comfort zone not keeping a constant eye on him..

  A moment later Cully shows up at the door covered in something that left little bubbles all over his skin and in his hair.....

  Rushing into the house I found in my office a completely empty bottle of baby shampoo on my desk. Said baby shampoo had found its way into all of my files with special attention spent on seven years of my tax papers and this years receipts. Also not neglected was one credit card, one computer mouse and keyboard, the monitor and mouse pad, the floor, the entire top of the filing cabinet and desk, one office chair, the phone, printer, and the glass panels on the french doors to the office.

  Life is hard. I am almost in tears as is after the pressures at work, the financial problems in my home, the guilt of not spending much time with my older boys..... I had reached my limits and this just took me one step over the edge.  And there is really no where to go after this....  There are times when you have no escape and it is what it is.......

 Cully was stripped down of his shampoo covered clothes and walked to "The naughty step" where he took a moment to put on Mums slippers and sit quietly to think of what he had done.. I explained that what he did was wrong and that he is a big boy who knows better...  I am sure what he heard was " blah blah poo poo blah blah" but he clearly knew he was in the wrong and he showed it with his sad face and hands clasped together.  So I thought...  Certainly I was wrong in this assumption and this was purely nothing more than a moment to reorganize and plan his next attack.  Which he carried out again and again...

 I had a brainstorm idea to take him out of the house for some Mum, Dad and Cully time.. Off to Taco Bell we went..  And this too was a complete and utter failure on my part.  A date with a overly exhausted autistic three year old and a stressed out Daddy in a public place.

Cully video 1

Cully video 2

  I don't have the answers. I'm trying...... And I know Cully is too.  I just don't know what to do. Tomorrow will come and all I will do is try again.......