Cully Ventures out into the World without Mum or Dad

 Monday morning came and Cully's first school day began.  With his own backpack strapped on his back and a bunch of built up excitement, Cully stepped onto the school bus at the end of the drive and never looked back.  No fear at all.  Not so with Mum and Dad...  This being the first time to separate from our Cully we were a bit more than nervous.

  Cully returned home from school with a smile on his face and you could tell he felt ten feet tall as well. He was now a "Big Boy" like his brothers.  The note from his teacher in his backpack said that Cully had no tears and tried to participate with the rest of the group.

 WOW...

  The next morning Cully woke up, put his backpack on and then called mum while standing at the door ready to go to school... Cully was an hour early however..  After that hour passed and the bus pulled up to the drive Cully with all his brute strength pulled mum down the drive  as he rushed to get on board.

  A full week of school has passed and Cully has had no tears or issues at all. He sat in his highchair the other day singing a new song that he must have learned in class.

  Just in awe at Cully's progress.   We are over eight weeks still seizure free !

  We are very lucky to live in a district that truly has an amazing program for special needs and schooling that is unlike what we have seen elsewhere. The teachers and the board work with the children and parents rather than operating as a business. They have been instrumental in helping Cully progress from the very start..  I think that our district should serve as an example for the rest of the country. There is something to be said for a school system that knows its parents by first name and devotes numerous hours to each child. Not like the rest of our country where the ratio is one educator per some crazy number of students. And our teachers tend to spend their entire carrier in the district as well.  

Cully made the honer roll today !!

Cully has done it..... A clean EEG with no unseen seizure activity at all.  He is the champ.

It was only a few minutes after walking into Detroit Children's Hospital that staff walking by would spot their favorite Cully and stop in to visit. Cully wore a smile on his face as staff from all over the hospital (even cleaning staff) would say hello to him and ask how he was....  He was surrounded by friends...

After his EEG was done we had a chat with the ever so great **Dr Chugani**.  The plan we have now is to continue for four more months with no changes in medications.. A little spooky with one of them being a bit dangerous but a good plan when it comes from the Dr....  At that time Cully will have another EEG and if all is still clear we will ween Cully off of one more medication..  And after another 6 months, another EEG and the final ween off medication...

The golden words spoke today that we did not expect we would ever hear 6 months ago were as follows:

Dr Chugani :       "Looks like the spasms are behind us now."

Dad :  speechless  with a lump in my throat...

As we were about to leave the Neurology staff gave Cully a little gift... As you can see in the picture above.

While we were awaiting getting prepped for the EEG we sat in the waiting room where we met a wonderful couple and grandmother who were there after their 11 month old had started seizures this past week.  They were standing right where we were 6 months ago and we knew exactly what they were feeling.. ( Should they be reading this...WE REALLY DO.. and we hope you will call on us if you need anything at all.)  After they had their EEG today they were informed that they would begin one of the same medications Cully is on....  I hope that our introduction to them will be a little comforting.  I know that if Julie and I had not been in contact with a certain "someone awesome" from the start we would not have held it together nearly as well and we are very grateful..... VERY!!!

Sawyer did another video for Cully...  Now is a good time to view the old video and then the new video to see a few kinda nice changes....

First video..

New video...

48 hour count down

 Thursday morning Cully will go into Detroit Children's Hospital for his long awaited EEG with Dr Chugani. This EEG will let us know just what is going on behind his chubby cheeks (his brain)...

  We have been several weeks without the ACTH injections and are at SEVEN WEEKS seizure free. Well we are not seeing any seizures. The EEG gives a good record of all of Cully's brain activity and is used to look for any patterns of seizure activity. To be specific in regards to Cully and his IS the team will be looking for any "Hypsarrhythmia" patterns...

 *explanation
  Hypsarrhythmia is an abnormal interictal pattern consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on an EEG. Related to Infantile Spasms""

 This EEG will tell us if Cully is currently IS seizure free. We are still too early to be in the clear but a clean EEG right now will sure be a huge positive step in Cully winning his fight with IS. We will also learn if we can begin to reduce the other high risk seizure medications Cully is on. If so, let the nail biting begin again as we hope that the med changes will not bring back any seizures as some of the changes may not be undone.

   In our eyes we feel that with all we are seeing with Cully's improved development, his alertness and response to his environment, and just his dang ole cuteness and humor is proof that all that mixed up brain activity that was steeling him from us has gone away.

  We will let everyone know on Thursday.......