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.....
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.
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..
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....
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.
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....
A gigantic bloated goofy tub of Cully has shocked us all once again. Unable to move much at all in his hospital bed yet he decided that it was time to potty train himself.
AND HE HAS DONE IT !
In four days he has not messed his diaper even once. And with his meds he has to pull this off multiple times a day too. Obviously with mum as the transport.. Cully just says the word and off they go. This is unheard of by the entire staff at the hospital. Doctors are coming in to say they heard the news and get the story. Staff from all over the hospital continue to visit our amazing Cully.
Things are continuing to improve. Cully has lost a total of seven pounds since he was admitted to the hospital. He is beginning to reduce in his tummy and feet as well as other places which will make him more comfortable by the day. He is on too many drugs but there are none without a good reason. Blood pressure meds were added today. He is fighting a intestinal infection or perhaps a bug of some sort this evening and is in a isolation room now. All in all though, doing well. And mum is holding up well too. And I miss her.
Yesterday morning started out rough when Doug missed the bus and had to get a ride from me. Then once at work that phone call came in that said Sawyer got sick on the bus. At this point I was already an hour plus away so back home I went. Only to find that what ever made Sawyer sick had been left on the floor of the bus.. Well, and on his jeans and jacket... But Sawyer felt just fine so what better excuse to do laundry..
Being a mum is tough stuff. I have NEVER underestimated the importance of my wife but I am surely learning to appreciate all she does even more now. I had to learn more of the task called laundry. ALL DAY. The boys and I took on this as a team. 100% of all the laundry, all 7 loads of it are done and put away. We then took on the house together and cleaned each room including walls, doors/handles, floors and drawers. The closets got cleaned and we emptied the fridge and cleaned her up real good. I can not imagine doing that with an autistic 2 year old on hand as well as the huge number of visiting therapists and appointments that Julie has with Cully and the boys.
So Cully.... the house is ready for you and so are we. I expect this may take a while but our fingers are crossed.
