Waz up Doc

So we are at Detroit Children's and Cully is getting his head played with, wires connected and arm poked again. Last week was a 24 hour EEG and today a short EEG and a PET scan. Just checking all things to see what has become of the focus on Cully's thinker doodle.

While at a friends wedding reception this past Saturday Cully had another seizure. One not like before but this one left him out in space for about ten minutes and then Cully came back to us...

ABA therapy has been amazing and Cully is putting words together and asking for help with a complete sentence. While at therapy there was a music therapist working in another room and Cully heard the guitar. He peaked around the corner and was wide eyed and interested in what was going on. The music therapist saw this and invited Cully to join in and he sang the whole song "Row Row Row Your Boat".. She has since petitioned the case worker to ask for music therapy for Cully..

Back to school next week and this past Friday Cully got to visit his class and see all his friends again.

Cute updates......

 He enjoys telling his favorite joke.. " knock knock.. Who's there? Boo..Boo who?...don't cry just joke."

As each doctor walks in the room Cully extends his hand and gives a hand shake.

Cully knows his music. Each time he gets MY ipad he goes right to the music and puts on Pink Floyd and then plays angry birds with the music in the background.

Da da da da da......that's all folks!

Stuck between a "Front Temporal Lobe" and a hard place...

 What would you do?

 If you found yourself in a position to make a life changing decision that could improve the future for your child but with risks would you go with it?

  If you were in a position to improve a medical issue with your child but chose not to do so for fear of what he would go through or what issues could arise from the procedure would that be neglectful? How would that make you feel when you watch your child struggle throughout his life knowing you did not take the chance to help him while the door was open?

  Cully has regressed just since his seizures ended. He is doing fantastic, is a charmer, shows love to us all and keeps making great progress.  But he is not where he should be. In fact Cully over 6 months ago was at a higher developmental stage than he is at now.

 Autism aside there is something else going on here.  Cully is on his third week of ABA therapy and he is making amazing progress. But with all of that, Cully is at a 12 to 18 month level of speech and 18 to 24 month level cognitively.

  Dr Chugani has reviewed Cullys tests and came to this conclusion:

 "Both his PET and EEG show a focus in the right frontal-temporal region. At least one of his video-EEGs showed frequent spiking from that same area. This can cause delayed development and even regression. I think we should take another look at him to see if surgery is an option."

  So we are back to the brain surgery issue again.

  I truly believe that Cully is progressing at a great rate now with his ABA therapy. I am not completely convinced that he will not snap out of the delay in due time. I know for a fact he has areas where he is gifted and ahead of the game.  I know the surgery will not take away the autism too.

  So why is this such a dilemma ??

  We are trying to beat the clock. There is a window for this surgery.
                                         
                                                             *Plasticity*

  Removing a part of Cullys brain sounds horrible but if done early enough then the rest of the brain tends to pick up the work of the part removed. This is called plasticity. And if we miss this window then the danger increases more and more.

  The ideal situation would be to relax and wait to see how Cully does with the ABA. Give it a little time and watch him close....  But that is not an option. Just how much time we have we do not know just yet.   We have to decide what to do. We have to be aggressive and gather all our facts and information and try to make the right choice.  

  We are waiting on Cullys team at Detroit Childrens to contact us with a time for an all day EEG and a PET scan. After this is done we will have a meeting with Dr Chugani and.........

 Life is hard...

Decision making time

Getting my nerve to put together another post...  And Cullys broken arm is not the headline...

Stay tuned for an update on our recent communication with Dr Chugani.... But tonight it is a scotch and some serious discussion between Julie and I....

Liking where we are at..

  Not the normal blog today. This is not very lyrical or filled with any great update...  Just a casual rambling of how great Cully is and a handful of reasons why we have every right in the world to be happy for all we have..

  I just went through this blog starting with the first blog http://cullygage.blogspot.com/2012/08/cully-diagnosed-today-autism-and.html   entered last July when our venture began with my our son.

  WOW!

  I remember every feeling of every post.... Does that make sense? Better to say that at the time I read each post I relived the feelings again. But what a difference to be able to come out of that moment now knowing we are in a much better spot for the moment..

  For the moment anyhow.
  Dr Chugani contacted my this morning and explained  " The cluster of spasms is a problem, regardless of what the EEG showed. Puts him at high risk for relapse."

This is not bad news, Cully is doing great!  But to hear this just reminds me that many of the children that go into remission with IS will have it return after a bit of time goes by...   But it is somewhat nice to have forgotten that these past few months..   I wish I could have continued to keep that out of my mind a while longer...

 Anyhow....

 Dr Chugani has lowered Cullys morning dose of Sabril  just slightly. And regardless of how little of a change it is.. well it is a change in the right direction for sure.  I'm excited..  Getting away from this drug means getting away from the possible damage to his eye sight, a side effect of this drug.  And so for this great step forward I though it would be a great day to celebrate with cute little notes about Cully......

Cully put four words together this week.

Cully likes... farting, drinking carbonated water and burping with each drink. He loves to snitch on his brothers.. um, and Dad.

Cully pretends to be a puppy and crawl around the house. And the newest is playing monster with Dad.

Even when out to play he will stop and come to us to use the potty...and fist pound each of us after the job is done while reciting " I peepee in da toyet".

Cully always comes to us and tells us he is sorry when ever we are frustrated with him or have to reprimand him. This also comes with a kiss and a hand pat.

Anyone in our home with an owie is tended to with a Dr Cully kiss and love shared by a squeeze or nuzzle.

My Cully LOVES his brothers endlessly.  A couple nights ago Cully was found crying and knocking at his bedroom door. When asked what was wrong he continued to stare off into space with tears and said "Youryer" A bad dream about his brother.. Mommy spent the rest of the night cuddled with him explaining that Sawyer was alright and sleeping..

Cully is SMART ! Some of the things he does will knock you over.. But only on his dime. Forget getting him to do any of it on Que.

Cully likes to "Beat Box"  What is that?? Well like a rap singer from the 80's he likes to make the beat noises with his mouth and put on a show.. Where did he get this??  I duh no... but he is good and he even tries to break dance...

And lastly, no cute post about Cully would be complete without a cute Cully video... so with out further ado I present you with Cully on hidden camera while surprising him with a visit to his Grandma and Grandpa J's.  Do give it a minute to get to the good part.... He is a goof who LOVES his Grandparents...

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.......

 

Dear Journal, the seizures are back

 Cully's Blog goes silent as the excitement dies down and we progress forward to boost his skills and work on his communication. The lack of drama does not mean we forget about the struggles we were facing in those few months when everything was out of control and we were shaking and scared. That immediate feeling of panic went away with every day that passed without those horrible seizures and we turned our focus to the Autism and finding a way to make that almost non existent. But every day that I heard my name called out or one of the boys would tell me "Mom needs you" I would repeat inside my head "no-no-don't let it be bad..." as I sprinted up the stairs or into the house.

  Today it happened... And the seizures are back.

  For months we have had false alarms and tend to think every small movement could be a seizure but we have been so lucky up to this point.  When Cully went into a fog and would not react to his mothers voice she sent Doug for me. When I walked into the office and sat next to him it took only seconds for his head to drop and his tell tale wiggling fingers to follow. With hopes that we might still be seeing something that was not really there we talked with him and watched him closely. When he came to sit on my lap, pushed up into me, took my hand and pulled it around him.... I knew for certain it was starting all over again...  Cully did this the first time he had his seizures last summer and it became our thing..

  I realize that this blog is as much of a journal for me as it is a way to keep people informed on Cully. If this blog had an audience of only me I would write in it just as I am today. In fact I was fairly certain I was the only subscriber for many months but I was surprised to learn how many people would come to ask me why I have not been writing lately.  So, if this blog at any time begins to sound like a drama film off  the Hallmark  Channel then so be it....trust me, this is how I talk to myself in my head too.

  Cully was scheduled for an EEG on Tuesday morning with his team at Detroit Children's Hospital. This was his landmark EEG to begin his ween off of this nasty medication called Vigabatrin. Perhaps not such a positive event now but I sure wish today was Tuesday.

  The trouble with IS (Infantile Spasms) is the damage the seizures do to the brain. How serious are the seizures? Serious enough that when his diagnosis was made and presented to the neurological team, we were contacted while in Niagara Falls and told to return home immediately and begin his treatment...  And we did. I imagine that we know much less than many of the other families that have been going through this but this is what I have come to understand. And with that said it feels like we should be at Detroit Children's right now. Like every minute makes the difference, though I know that there is nothing that can be done.

  So the roller coaster ride begins again and the emotions build here in our home as we hope to stop these seizures.

Good job boy

Great job today son. You are truly an amazing young man. I'm sorry you did not feel well but am so happy that you went to bed so well.
 Thank you for the back rub today. I thought it was quite kind of you to lift my shirt and rub my back. When you reached around and lifted my hand to your level and kissed it I knew right away you were showing your feelings and that is a wonderful thing. I am so happy to learn what is going on in your mind.
 When you had me put Barney on the Ipad today and were so caught up in it that you ran your shoulder into the edge of the door I was happy to kiss it all better and hug you. Even happier that you let me.
In the end.... Today.... Daddy 100.... Autism zero......  Still no seizures too!
 Your mom and I spoke about plans for your future. I know you have a wonderful family that will always be there for you but your mom mentioned the thought that you may one day be on your own and take care of yourself. I felt bad that I had not considered that possibility. You have amazed us in so many ways. One way or another you will be just fine.
 Love ya.....
Daddy

A hard day for Cully

Cully, I'm sorry you had such a difficult day. I saw that you tried so hard to do what we asked you to do. At nap time you fussed and kicked your closet doors but when I came into your room and spoke to you I saw that you listened to me. I  told you that I worked very hard to build this house for my family and  that I did not want you to treat my house this way. I asked you to stop and you did. We connected and you knew that I was asking you to listen to my heart felt concerns.
 I had to leave the house today to take a step back from all that was going on. I needed my space today. I felt cheap and selfish but I know that I am deserving of my own space. I came home several hours later refreshed and able. You had a difficult day and so did I. Tomorrow will be better and when I return home from work you will sit on my lap and we will watch Barney together and find that connection again.
 Damn this autistic stuff and everything else you have been dealing with and my hopes are high that we have a good ole afternoon just chill'n and hanging together.
   By the way...... have you noticed the way your big brothers have been involving you in everything? You are a very lucky kiddo. You are one very loved little boy.  And you're mine.  Xxxxxoooooo
 I'm sorry life is so hard. I love you so much.

So the big update.....
 Today Cully sat in a chair on the other side of the room watching his favorite Barney video. He glanced over my way and saw me sitting in the couch. He got up and walked over to me never letting his eyes stray from the TV.  He lifted himself up onto my lap and continued watching his show.
 If you can understand the value of this then you can understand the smile I have on my face while I put my head to the pillow tonight.

 Tiny steps are leaps in the right direction

So a letter  via email comes in to my mailbox today. A letter from a producer with ties to primarily PBS networks....
  "We would appreciate the opportunity to present your son in part in a documentary pertaining to the struggles of special needs children and their families in the current economic times that  we face today with government and social support. Your son in particular has had a dramatic and inspirational journey. "
  At first I was excited to know that my story of my son was heard. But it took no time for my true thoughts to kick in.
  Cully is unfortunate to have been a child to go through all that he has. And selfishly my wife and I have been unfortunate to have gone through all we have with him......  Or have we?
   But.......
 As we try to gain a footing after the expense of all we have gone through, one thing we are not is selfish enough to think that our story is one that deserves the headlines.
  We are in dire straights right now. I have never found myself in such a position as that of where I am now financially..... But I am in no way one that can be compared to so many others right now.  Perhaps something I wrote was lyrical or rolled off the tongue just right but there are so many others that need to be thought of right now.
 Julie and I met so many others whose struggles continue much further than us.  We have been so lucky with Cully and his progress.
  Bethany in New York has come so far and is fighting to overcome so many more issues right now. And Trevy, my little hero has made so much progress with his infantile spasms and all the hardships that come with it.... And the family around these children are so strong and committed...  
  The answer to the email I received is this....
  " Thank you for your interest in our very special son. We think it would be favorable to your interest to take a moment to look at a few other families who are dealing with similar issues at this time. We have been very lucky with our son and his health but think that others have had a much more intense and COMMITTED road than ours.  While we do not think that our wonderful son Cully deserves any less than all the hugs, kisses and praise that your audience would allow, there are others who have more to share.   Please take a moment to see the few people we are including in our response and give them a moment of your time to see the struggles that they have to deal with each day and the unknown future they have to focus on.  While we are still in an uncertainty with our son I think you will find the heart felt love, compassion and uncertainty that your viewers will appreciate and hold compassion for in the families I mention.. And as for us, they are our friends and support."
 I have not yet received a reply.
  I think that Cully is due for some make-up for all he has gone through...  I do not think that this is what it takes.  And when I have two nickles to rub together I hope that Cully can hang out with a couple cool special kids that we have come to know... And that is the sort of morals that I hope to have taught my autistic child. Through what ever channels it takes...  That will make me the Daddy I want to be....

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?  

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.......