Friday, September 25, 2015

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.

Thursday, March 20, 2014

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.




Saturday, March 15, 2014

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

Tuesday, September 3, 2013

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!

Monday, August 12, 2013

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.

  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...

Saturday, August 10, 2013

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....

Tuesday, June 4, 2013

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   entered last July when our venture began with my our son.


  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...


 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...

Wednesday, May 22, 2013

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.

  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.......


Sunday, May 19, 2013

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 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.

Sunday, April 21, 2013

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.....