Watch the drug company get exposed tonight on 60 Minutes

   Tonight on 60 Minutes CBS will be a story on the owners of the drug ACTH which saved Cully Gage. While we love the miracle drug ACTH the story behind the drug disappointing.  Big Pharma takes control of a rare and needed drug to fight our sons disorder and takes advantage of everyone in need. 

  I hope everyone will watch!

Oh my! What about Cully Gage?

What  a surprise to notice that I have not posted on Cully Gage in almost two years! I think I better put pen to paper. I have so many stories, updates and much bragging to do. Keep your eyes open for an update......

Dear autism, you are losing your battle

Every once in a while a little bit of hope, or a surprise will pop out at the most unexpected times. With Cully we have seen this on a few occasions. When non verbal children decided to speak to him. When One day recently out of the blue Cully structured multiple sentences together and decided to continue doing so from that day forward..... You get the point...

This week Cully Gage lost his grandfather. On the day of his funeral we stepped into the church and Cully wandered up to his Gandpa in his casket. He put his hands in his pockets and looked at grandpa for a moment. He took one hand out of his pocket and placed it on grandpas hands and patted them for a while. He looked at mum and sniffled and motioned for she and I to come up with him, We stood by for a moment before he walked away and returned several times again.

For a while he showed emotions and compassion. Later that night he asked why grandpa died and even offered his ideas on how he might "wake grandpa up" showing me how he would shake him with his hands.  While playing he pulled a pillow up onto his lap, placed his elbos on it, chin in his hands and pouted. I asked "whats wrong Mr G" and he said "your grandpa die died" with pouting lips. We talked for a moment about how Grandpa was my Daddy and that it was his time...

The emotions and thoughts are in there. They find there own way out every now and then.

As a foot note. My father left me with the gift of donations at his funeral to be directed to the Autism Society. How sweet is that?

Thank you and I miss you Daddy.

EEG Day Camp at Detroit Children's

Enjoy a great get away at DMC with the all inclusive three hour EEG day camp and spa package..

Sit back and relax while your registered therapist plays with your hair and relaxes you with a scalp scrub. A complimentary hair style complete with head wrap will make you feel right at home.... And it's all the rage... Free face painting too!

 

Enjoy snacks right from the comfort of your own adjustable cot while you enjoy the entertainment of the wonderful selection of movies provided by the EEG staff at DMC.

 

Top notch titles such as Elmo, Happy Feet, Scooby Do, G Force, Frosty the Snowman,and many more..

 

This is your time to recharge.

 

You can do the wave!

Moms who chaperone will enjoy the relaxation too!

 

When your day ends you will receive a second scalp scrub and leave knowing you have been well cared for, styl'n with your new fashionable hair, entertained, and go home knowing your therapist has tended to your every need in giving you a good healthy work up.

 

 

 

Posted with Blogsy

Catching up with Cully

Long post, a few pictures and even a couple videos to boot..

Cullys first Valentines gift from his Olivia

 So how much time has passed since the last update? 

  We have reached some amazing marks, and a few set backs too. But all in all we are doing very well in "Cullys house".

  It was not so long ago that my son was on the edge of leaving us and now he is strong, setting the grading curve and entertaining all of us around him in these recent months. He is also teaching us and opening new doors to many of his friends. He has a gift and you will understand before the end of this update...

  We have had more seizures again. Not the "Infantile Spasms" that we battled previously but Cully is developing another seizure disorder which we were well aware was very likely. The seizures have been sporadic though lately they are becoming more frequent. The latest seizure was at school this past week when the teacher found him rather motionless and out of it while standing still. He was wetting himself and was unaware of that or anything else around him. Later it was noted that he did not understand common words that were familiar to him previously, and he was tired. But this all passed in short time and back to Cully he was..

  With the new onset of seizures our current wean of Cullys last medication is over and his team at DMC has drastically increased his medication. Cully will get to see the gang soon as we have been asked to return to Neurology this week for an EEG.  Hopefully this onset of seizures will easily be put under control..

 Regardless, we got this ! This we can handle !

  Cully has continued to progress like lightning thanks to the ABA therapy he has been getting 5 days a week following his wonderful school program. He continues to be an integral part of other special needs children around him too. The therapists working with Cully have now incorporated him in the daily therapy sessions of other children who are primarily non-verbal and do not interact with others. With Cully these children come to him to interact, play and ask him for help with toys and such. He is changing the course of the lives of these children and why he has this gift I do not know but it fits the rest of the description of this remarkable little boy that we are so lucky to have in our family. He truly is a gift and we are so happy to share him with the others he knows as "his friends" !

 Cully has been using complete words and he answers with a full "Yes" or "No thank you" and also uses his words to ask for things such as "Where is Ipad please?" or or perhaps "Peanut butter  jelly please".  Sounds like no big deal huh? Wrong! We are so happy. He also can very clearly state "I farted"... one of his favorites.

 He reminds us EVERY TIME to say "Excuse me" when any of us may burp. Bless you has been the most recent with a sneeze. And what all this means is that he has become aware of much more surrounding him that we had expected some time ago and he is also managing his day to day interactions... He on his own has learned, or perhaps formed his own display for affection or manors towards another to retrieve and help put a coat onto his special friend Olivia. His friend Jesse welcomes Cully each day at the door with a very enthusiastic "Cully here". A verbally impaired autistic boy who has learned to use his words with his friend, my son. Jesse is one very cool kiddo that puts a smile on my face each time I see him.

Cully and his pal Jesse

The other day my son had his very first date. Olivia and Cully sat side by side at Red Robins while we all enjoyed their company for a night out on the town. Olivia and Cully have a very particular bond....  Olivia has a tendency to cry out from time to time as is the nature of her autism. We found Cully to simply pat her on the shoulder with each outcry and instruct her with a simple "Liv, shh! Hush"...And this seemed to work well. Oh, and Julie and I truly enjoyed the company of Livs Mum and Dad too.

Date night, Cully and Liv

 Julie voiced her concerns the other day about when Cully may level off with his mental growth? At what age level will he be at in regards to his development? This had been on my mind for some time too but I had not been ready to discuss it until she mentioned it. Given a little thought I tend to think we could be at that level at any moment as I see huge steps forward but his character has been slow to change...  But even so he has a natural need to be aware of what he needs for his survival skills. He has shown remorse when appropriate, concern for his own well being and general abilities for life's day to day requirements. Keep in mind that this is the little boy  who while laying immobilized in a hospital bed decided that from that very moment forward to use the toilet. With near no accidents from that day on too ! All the things I was destined to install in him when we first learned that we may have a limited time to build such things.  But little credit lies with Julie or I. Cully pulled it all off on his own.. And this amazing thing called ABA THERAPY and his school program helped show him the way and gave him the tools to progress.  

  Julie made a FaceBook post with a challenge. If 100 people read up on "Infantile Spasms" and let her know they had by liking her post then I would let Cully shave off my beard.. And she got 100 likes ! Here is the damage......

 And my happy Cully moment came this past week when I received an email from Olivias Mum..

It reads.. 

"Today when I was leaving after dropping Liv off at school, this is what Cully did, and she stopped crying. Their so cute together!"

Liv with Cully

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.......

  

Nothing to complain about

Things are continuing to go very well with Cully. The moments of rage have lessened a great deal and mum and Cully have found a way to work through them where Cully can take a moment to think before he reacts.

We continue to be seizure free...

The weight is about the same but he has toned up and is looking fantastic. The never ending appetite has gone away too.

We have enjoyed a sense of "normality" comparably speaking anyhow. Time has been given to getting things back in order and as a family as a whole. I pulled myself away from the computer and all those that I have been communicating with over these past months and just focused on us....  Now that we have found ourselves with such a wonderful outcome and had some "Our Time" I am going to take some time to speak with all the great friends we have made and get updates on their status.  We have a handful of new connections that we worry about and really hope to meet up with at some point...

 I have nothing to complain about or any urgent concerns to post. While we know we are in the early stages and anything can still happen, we are just really happy right now.. And so is my big ole Cully G.....

Food for thought

Isn't it amazing how we tend to focus so much on each thing that goes wrong in our life? It seems to be our nature to react to just what is effecting ones self first and react upon that situation as if every action has the common denominator of "ME".
 
   Think about that for a moment..

 Who are we to think that this world and everything in it is about "YOU..ME...SELF ?  That is exactly what our thinking process is based on. It always stems from using yourself as the factor for what all things effect, are going to effect, or could effect.  Even when we consider a kind gesture towards somebody else can you, to yourself, truly say that you do not "thought process" how your action will effect you?? Do you not spend a moment later to soak in the thoughts of your good nature?  Is it possible to take the "ME" out of the equation? What would happen?

  Crazy thought isn't it?

So now that Cully is doing so well with no seizures returning to this point, weight is coming down and all health issues seem to be a-ok....  why are we dealt another problem??  "Catch that?  Why are we?????? As if it is about me again and not Cully.  But that's what came out as I typed.

  Cully is not the same Cully we had when we went into all of this 6 months ago. If you are one of the amazingly lucky people to get the opportunity to see Cully in a given day then you will see him as the big cuddly chunk that he is, complete with the chubby red cheeks and big ole belly that has to be moved about just to get his winter jacket zipped up. Your next observation is going to be his sweet demeanor and natural way of taking on a slow and gentle way of treating every child near him as if they were his own little baby. This goes for children younger and older than he... He has a big brother personality that makes others cover their mouths and gasp as he takes over for moms and dads and teachers..   You might even see Cully with nothing more than a simple smile too.    Or...you might be one of those people at the next table over that thinks this child better get a good butt whoop'n and  you would never allow your child to act like that.....  Cully is not the same Cully anymore as he now is having more and more fits of rage each day..

 So here is why I wrote my thoughts regarding how much we think about ourselves first in all things we do.

Cully is struggling with this.  He is aware of this and is scared. He has compassion and a conscience. And how do I know that he is scared?  He told us.  showed us.  In his own way he asked us for help.

Example.. Today after church we took mum out for a birthday meal. Cully was his usual self and was laughing and giggling when a piece of food fell off his spoon. This sent him into a rage and we had food and plates thrown, arms reaching out to hit and screams. Cully was aware of what he was doing and then immediately leaned into his mum and asked for a hug.  When held after something like this Cully is shaking and very sympathetic. He needs to know that what he did isn't going to make us not be there for him. He wants to show how sorry he is.. He does not like that this just happened.  And we see this reaction with almost each rage.

 I think that the fact that Cully has these qualities is just another one the amazing gifted things about my special boy. But how hard it must be to be in his position...not mine where I am uncomfortable about what the people around me are thinking.  I have been guilty on numerous occasions of wanting to let a parent know that they ought to give their child a good straightening out. And its me looking around worried about everyone's reaction when Cully has a melt down. When we got the diagnosis of the IS and the Autism it was not just the worry of our son making it through this but it was the selfish thoughts of how difficult it is going to be in the future having a special needs child. I kept thinking about how that moment in my life when my wife and I would have OUR time would never come and how cheated I felt. I even feel selfish to the fact that each night my son will call for mom and I will spend that rest of my night alone again.

I do not think that I am alone in having selfish thoughts but it is humiliating  to think about it. Its a part of my nature I wish I did not have. Every negative moment in my life can be traced back to that common denominator of "ME". 

 I'm so very lucky to have a child that can remind me that he has feelings too.  I wish I could make it all better for him.


 

Wondering whats going on??

Why were we hearing Cully laughing hysterically last night??  Cully stumbled on a video of the Dallas Cheerleaders in bathing suites.. He couldn't stop giggling... Parental controls are going on the computer as we speek...



I have not posted for a bit so I am going to toss out an update....

5 weeks seizure free.....

Cully is doing fantastic. He has lost several pounds and is now 45 pounds. His lower half is back to normal but above the belt line he has a long ways to go.  His cheeks are not much smaller yet and the belly just started to go down..

He has his energy back and is keeping us on our toes. He also went from 18 medications down to 6. Blood pressure is even back to normal.

We have even taken Cully out in public again now that he is building his imune system back up. We surprised much of the family with Cully and his nephew and spent an entire evening visiting.

Cully visited his school too. He will be starting a special education program come January and he met his teacher and the other 11 students that he will soon call friends. He also did his "Building Blocks" program with mum, something he really enjoyed but had to discontinue due to the ACTH treatment.  His visiting therapists have began to visit again as well.

 Cully is acting like a 5 year old now and is showing huge improvements in his development. He is able to get onto the computer and use the mouse to reach websites such as YouTube and then look for football and Barney videos. He can do this on his own and he really enjoys it..

 Our down side right now is Cully's tantrums. We suspected the withdrawal from the ACTH would cause this but as we get further away from the drugs end we are seeing an increase in the tantrums.
Tantrums is not a big enough word for what is happening..... What Cully is doing is scary.

 The other day we thought Cully broke his mothers nose when she picked him up during one of the meltdowns and he slammed his head into her.  Cully will throw things with the force of a teenager when he rages and he will run across the room after any one of us to hit and kick us. It is complete rage.

 What sets him off can be anything. A simple no. Telling him to come to us or put something down. He dropped the IPad to the floor yesterday and I kindly said "thats not how we put that down. Pick that up and hand it to me."  He broke down in tears and then lashed out.  He was walking around with a plastic cup and a fork making drum noises and we were clapping and playing right along with him. He tossed the cup at mom just in a playing way and it hit her on the head and she said owe. Cully broke out in tears in an instant and then threw the metal fork very hard in anger and hit mom in the face and began his rage.  Mom put her arms around him and he was shaking. This time the rage was set off by feeling bad that he hurt his mom but then he turned it against her. Because Cully also does things like run across the room and ram his head into the wall or throw himself down and repeatedly bang his head on the floor, we have to keep him extra close. He has no care if he does this on the tile floor or the carpet. He continues to hurt himself like this.

We have seen him show remorse very quickly after he has one of his episodes.

 So this is the new bump in the road.  I am about to reach out to all our new friends and ask for information on their experiences with the drugs Cully has been taking. And regarding IS as well.  Just hope that this is part of ending the drugs as we did not have a Cully like this 6 months ago..

DONE... NO MORE... EVER...

Last injection of ACTH was given tonight. Now to get him back....

24 hours to go

Cully has only two more injections of the ACTH. Tomorrow night it will be over......  I want my son back!  but still glad for the drug as it did its job....

Welcome home Mum and Cully

 We don't always realize just what value we have in the things that belong to us. I have learned with each increase in my lifestyle comes higher standards to keep myself happy and content. I proved this to myself with a hand full of past incidents and am well aware this is fact.  Having spent so much of my time this past month without my wife and Cully here in our home led me to be more self sufficient and accountable for what I had on hand. My reduced time working led to a significant drop in my income and set me back well over a year as well.

  So why do I bring this up?

 Well my wife and son are home again. And just the one minute I had when Cully came to sit on my lap tonight and lean in to me made me think how many snuggles I failed to notice before. Jewels came down the stairs this evening with two cups of coffee and we sat next to each other for 45 minutes. Nothing more that the two of us. At one point she reached over and put her hand on my arm and I melted. I forgot how precious a simple human touch is.

  I realize all I have now. I also realize all the demands I have and the weight on my shoulders to live the way we do. If I can pull it off I will take us back to a small ranch with a small mortgage and two paid for inexpensive cars complete with dents and bad tires.  My time with my family is being wasted on working to pay the bills and less devoted to the small things like a drive to no-where with a picnic basket or a freezing cold trip to the UP out of season for no reason other than to goof around with the family.

 Cully is home and on a roll. His state of mind is unbelievable. On our drive home from the hospital I listened to Cully sing out with a strong clear adult voice to one song after another. ABC songs, Nursery rhymes, answering questions with word structure.  He was alive, awake, developed. He was gifted. All this had been locked away behind his seizures and we did not even know it.. Cully is one month seizure free now....

  Cully's physical appearance would make you gasp. He is bloated still, face swollen and belly extended. He walks stiff like a zombi and he is unable to get into a seat on his own. Yet he is far better than a week ago. The drug that saved his life has turned against him in so many ways but it is all about to end. He is on a unheard of reduction in this drug and will be done this Sunday. He is going through withdrawals from the drug that are rather severe but temporary. He is saved.

  Last week I accepted, to myself anyhow that I did not think Cully was going to make it through this. I figured we gave our best but he was not going to return home to us. I was considering all the choices we had made for him and wondered if I had done this to him. Should I have done this or that ?  He was not doing well and I did not have any way to express how bad he was to others.  But he did return home today. And he smiles, goofs around and at times has a rough time of it. But............

 Sure am glad to have Cully in my life.....  Seems he is rather lucky to have this family too......

 When you watch a love story movie on TV and the shot shows the woman jump into the mans arms and they hug as the camera spins around focusing on their arms wrapped tight as they hold each other......  Well that is exactly what we saw today when Douglas walked into the house and saw Cully in his sisters arms. Cully flailed his arms out and his smile widened as Doug reached out and lifted that huge boy out of Elora's arms. Cully wrapped his arms around Doug and squeezed him until Cully was shaking and he pushed his face into Doug until the pressure turned his cheeks white.

  This is the family we built.

A long post, a recap of Cully's journey

 It's just such a good video to watch again at this time as we reach a big point in Cully's fight...

  Well in just three days we will be five months into our journey with Cully Gage and his seizures. That day will also mark a very special day for us as it will be our one month anniversary for no seizures.

  A recap of events.....and a long post...

 Mom and I had reached a point back in June when we really needed an answer to why Cully kept behaving the way he did. He could not be left out of sight for a moment as he would climb out a window, turn on a stove, empty a cupboard or even worse, find his way to the street.  With numerous children before him without this issue we knew something was not right. A trip to the U of M hospital and a multi day stay only led to us being investigated for possible child abuse and a clean bill of health for Cully.  Child abuse due to us being completely open and expressing some of Cully's actions such as him trying to touch a hot stove or close his hand in a door. This was the behavior we were so concerned about and were seeking help for...  A family pediatrician and a group of in home child therapists who we had visit often to help Cully made calls and put a stop to all of that abuse theory right away...

  Next step?  Cully returned home and suddenly he has what we believe to be a seizure. And another and another. Calls to U of M lend to the answer of "we will call you in November to schedule an appointment. That is 4 months away !!  To the pediatrician we go where Cully goes into his seizures while in the doctors office. He immediately makes several phone calls demanding our child be seen. U of M gives no response but the moment we walked in our home it was Detroit Children's Hospital that called and set up an appointment for our son to be seen. We went to them with an overnight bag packed just in case and when we arrived they saw the bag and chuckled. "We have a 24 EEG open and can get him in immediately". And so they did. And within two hours the diagnoses came to us. But the 24 hour EEG continued.

Cully diagnosed Autistic and with epilepsy.

  We have a son with epilepsy. Terry has it and we give the meds and see his neurologist and go two years between his rather mild seizures. Not too upset about the epilepsy but the autism we know little about. Autism worried us. We know little about autism but we will be ok here. We will learn and get the help needed. Time for a vacation to get away so a last minute reaction said pack up the van and off to New York and Niagara Falls we go to get away for a handful of days, fun with the boys before getting in gear with autism..

  But..

  Sunday morning while at a hotel room in Niagara Falls we receive a  phone call from the neurologist that diagnosed Cully. "Get back right away, we need to start him on Vigabatrin". She explained that Cully had a form of epilepsy call Infantile Spasms.  And so we packed and returned home.  But what was this Infantile Spasms?

  We googled all we could about IS.  It is bad. It is not what we want for our child. The Autism seemed small now.  Get home right away. This is rare.  We now have to find the best place for Cully to get help. Where in the world do we need to go? Where is the specialist for this?  A video popped up and it was a child who was having the identical seizures Cully was. I reached out to the mother that posted the video immediately..  Pleading for help.. What to do and where to go.. And she replied the next morning....

   "Seek out Dr Chugani for your son. People from all over the world go to see him with their child".

  Well it just so happened that it was Dr Chugani's department that gave Cully the original EEG and diagnosed him.  We were already where we needed to be and were no longer alone now that we had this wonderful mother communicating with us.

  We continued the high risk drug treatments but the seizures continued.  The idea of the Ketogenic Diet was recommended by the doctor but after testing was done for Cully to start the diet we learned that Cully's body would not accept the Keto diet and that was not an option. We had one more option. A drug called ACTH. An injection that we would give Cully each morning and night for eight weeks.  Hard on the heart, hard on the body, and with multiple side effects but it was a chance.. And we began the injections.  And for a couple weeks we noticed nothing. Seizures continued. An appointment for Cully at Detroit Children's for a EEG ended up in him being admitted for a very low level of potassium. So low that Cully would not even complete his EEG..   And the ACTH dose was increased. Come the next morning Cully would have what would be HIS LAST SEIZURE. The increase in ACTH stopped the seizures. Cully remained in the hospital for the inability to keep his electrolyte levels correct. After a week he was released and he came home to continue the ACTH.

 After another week of no seizures we began to ween Cully off the ACTH drug. Cully was now beginning to add weight and increase in size all over his body. Calls to his team at the hospital assured us that this was part of the drug. As time went by he continued to grow at an alarming rate but more calls continued to assure us this was part of the drug.. But after 18 days of continual growth we found Cully unable to move. He did not speak often and breathing seemed hard for him. He had gone from 36 pounds to 60 pounds and was in horrible discomfort. His scrotum had grown to the size of a softball and we had enough. We rushed him into the hospital where at first look they understood that what was happening to Cully was not normal for the ACTH drug. He was tended to immediately.

  Cully remains at Detroit Children's Hospital to this day and may be there for some time yet. Since his admittance he has lost 7 pounds. His highest weight was 62 pounds. He was unable to move for days and could only lay on his back. A surprise visit from a little 14 day old nephew who was anxious to meet his Uncle Cully had made a miracle turn around for Cully. After that visit Cully sat up. He also decided he would begin to use the toilet and from that point on, with his mothers help he has continued to use the toilet every single time. Cully became more vocal and continues to call out for his little nephew Jaxon often. He is monitored very closely as his blood pressure is high and he is currently fighting off an infection or a bug of some sorts. He is on his way to recovery and while he has a long way to go before getting back to looking and acting like the old Cully, he is doing ok.

  We had a rough time of it when Cully was mistakenly given a dose of his ACTH five times greater than the intended dose. This was a horrible error by the hospital but a human one as well. It does not appear that the overdose is causing any particular issues at this time but a close eye is on him. He is now once again back to a VERY aggressive ween from the ACTH drug which is believed to be the reason for the condition Cully is in right now...but we are not forgetting that this is also the drug that has stopped Cully's seizures and in no better words has "SAVED OUR CULLY".

   Julie and I will never find the words to thank all the people who have helped us with all we have been going through these past five months. We have made some wonderful heart felt connections to some amazing people who share the same sorts of struggles with their child. People from all over the world in huge numbers have communicated with us and kept our son in their thoughts and prayers. Candles were lit, prayer chains were updated daily, and wonderful advice and connections have been given to us. And I would not have made it without all of those people and I am so glad you are there.

 This is obviously just a general overview of all our Cully has been through and we could fill a book with each event and hurdle but....there is enough here to show that our little two year old boy has taken on more than most and still holds the most precious smile you ever might see. He is due for a break and that I think is right around the corner.

  So in ending this very long post I will try to summarize this all.Cully is unfortunate to have IS and autism as we all wish our children to be happy and healthy.. Mom and I are doing all we can to end this IS and thus far it looks as if we have beat the odds and are one of the few and fortunate. And as for the autism? Well Cully doesn't know he has it. He is going to have a wonderful and fulfilled life regardless. It is our responsibility (and pleasure) to be certain that we open every door we can and find the help for not only Cully but Mom and I as well so that we can find the channels to teach him and communicate with him to the fullest. And all these issues he is having right now will pass. He is going to win......

  Cully will come home. He has too much to teach us....