This is Dylan’s new Helmet that was specially designed for him by some college Engineer students. I entered a contest and my essay was chosen we were asked what we needed for Dylan and we told them a new helmet. They asked us if there were anything we wanted special and we told them we call him Superman and this is the design they came up with. I Love the D inside the shield instead of the S
The Real Superman Part XV
By Jeff King
Dylan was doing so well. He no longer was laying around like a lump. He was back! He was all over the place. We had gotten his helmet and tried several times to make him wear it, but we were unsuccessful. Every time we placed it on his head he would rip it off and toss it. We got so tired of fighting with him, we just decided not to try to force him to wear it.
We went to the mall and Dylan would run right to the elevator to watch it go up and down. We were so happy, because the light had returned to his eyes and life had returned to his body once again. This was so amazing. We went everywhere. We even decided to take his chair out of the trunk, because he didn’t have a need for it anymore. I took him to another mall where he enjoyed riding on the little carrousel that was there. He rode it several times and then I took him off of it to walk down to meet Terri and the children where they were getting their hair cut. Dylan took off. He began to run. He ran just like he used to. I was so happy to see him running once again. My man was back and he had proved once again that he was indeed Superman, and those seizures, which are his kryptonite was not going to defeat him. I gave chase, because I still was unsure about him running. I kept thinking, “God please don’t let him have a seizure”, because the floor was concrete and then suddenly he dropped to the floor head first. He lay there in a heap, flailing around uncontrollably. I ran to retrieve him off of the floor and there were several mall kiosk employees who ran to help us. One gentleman grabbed a slew of paper towels and some ice to put on Dylan’s forehead, which he had slightly busted open, but fortunately it was not bad. He did have a goose egg protruding from his forehead, but he was fine. He never cried or screamed or anything. We continued to walk to meet my family, but by now I had firmly taken his hand and made sure he walked beside me.
He begin to have several of these seizures where he would just drop to the floor, ground, etc. They were the most frightening ones, because you never knew when they were going to happen. I had recently been hired as a permanent part time teacher’s assistant at the school I worked for. I started out a one on one temporary employee. I worked with two students who had autism and behavioral issues. I was told that I did so well with them that the school wanted to hire me permanent part time and as soon as a fulltime positon became available then it was mine. School was scheduled to begin on August 26th 2013. The day before school was to begin. I was upstairs when Terri screamed for me to come downstairs. I ran downstairs. I was greeted by a scene that looked straight out of a crime scene. Blood was everywhere and Dylan was laying on the living room floor in a pool of blood convulsing violently. He had an absence seizure and had fallen and busted his head on the corner of the entertainment center. I had just recently taken a first aid and a CPR course in the summer. I grabbed Dylan up and told my daughter Destiny to grab me something that I could pack his wound with. She grabbed a bunch of paper towels and I reluctantly used them to pack his head to try to stop the bleeding. I told her to call 911 which she did. I examined the gash in his head and it was bad. It was as deep as it was wide. We waited for the paramedics to arrive and they took over. Dylan was sitting on the floor like nothing had even happened to him. He didn’t cry or give any indication that he was ever in any pain. The ambulance took him and my wife to the ER and I followed in the car while Destiny and my son Dacota cleaned up the mess.
I arrived at the hospital several minutes after the ambulance. Once inside the immediately took Dylan into a room where a nurse attended to his wound until a doctor could see him. The doctor came in and examined Dylan and determined that he would either need several stitches or staples. We actually opted for the staples because they would leave less scarring and thank God we had recently taken him to get his hair cut so it was easier for the doctor to clean him up and staple the wound closed. It was on the top of his head, which was another blessing so whenever he grew his hair back the scar would be almost unnoticeable. The doctor put 8 staples into Dylan’s head and once again he never cried or screamed out. His threshold for pain is very high. The only time he cried was whenever we were holding him down, but other than that this little guy is amazing. This is indeed the Real Superman and he was amazing. (To be continued!)
The Real Superman Part XIV
By Jeff King
About four months went by and Dylan was doing so well with the VNS. He had become very vocal, but still didn’t talk. We had to go up to his neurologist every two weeks to have his VNS adjusted. Right after his 4th adjustment Dylan began to have some real bad acid reflux. This became a big concern when the majority of the time he was spitting up bile. It began to take a toll on his teeth and the acid from his stomach began to eat away at the enamel. We voiced our concern to both his neurologist and his pediatrician. We also became quite concerned that this reflux would damage his esophagus.
We made an appointment with his neurologist and talked to him about our concerns. He set us up an appointment with a gastroenterologist from John Hopkins. She did several test on him and prescribed a medication that we would end up using for about 9 months. It was erythromycin. This was a small dosage that they used and in theory it was supposed to help empty the intestines and protect the esophagus from any damage that could be caused by the acid reflux. This really didn’t seem to work that well with Dylan and we had to now by bibs for him to wear, because his clothes were getting ruined because he would reflux all day. The teachers at his school brought in oversized buttoned up shirts that they would put on him to keep him from staining his clothing. This was a terrible time in Dylan’s life, because he couldn’t really eat much and we started giving him ensures and baby food to try to get him to eat without spitting everything up. Terri and I were sure that this was a side effect of the VNS, but Dr. Rubenstein continued to disagree with us, even after we had found some literature stating that fact. Dylan’s teeth had gotten so bad and although Terri would brush them daily, it didn’t really matter. They were all rotting out, because the acid from his stomach had just eaten through them.
We made an appointment at the University Of Maryland Dental Department. They would have to put Dylan asleep so that they could pull out his rotten teeth, which at least were still all of his baby teeth and they would try to treat him with some things that would prevent further damage to them, but they informed us that it wasn’t guaranteed and that we would definitely have to try to brush his teeth at least twice a day, but they recommended three times a day for him. This was almost physically impossible to do, because Dylan absolutely hated having his teeth brushed, or his mouth messed with at all. Dylan was very strong and he would fight hard to stop you from carrying out any plans to brush his teeth. It sometimes took the two of us just to hold him down to brush his teeth one a day and now they really wanted us to try to brush them three times a day.
The anesthesiologist put Dylan out and a team of Dental surgeons began to work on Dylan’s mouth. It took them about an hour and a half before they were done. They took him into recovery and sent for us. We went into his room and tried to wake him up. He wouldn’t budge. We waited about a half an hour and began to try to wake him again, but for the second time we were unsuccessful. He was out cold. We tried this several times for the next hour and a half. The nurse was in several times and tried to wake him too, but she too was unsuccessful. She checked his vitals and everything was fine, he just wasn’t ready to wake up yet. Terri and I did become concerned that maybe the anesthesiologist gave him too much anesthesia? We thought.
After several more unsuccessful attempts the nurse contacted the anesthesiologist who then decided that it was in Dylan’s best interest to stay at least overnight for observation. Terri stayed with him while I went home to attend my other children.
The next day he was released and was just fine. This was the first time that he had a hard time coming out of the anesthesia even though he had been put to sleep several times in the past.
Dylan continued to have the reflux and now the gastroenterologist advised us to consider letting her put in a feeding tube. She said that this would most likely stop the reflux. We left her office upset, because we didn’t want to put Dylan through anymore surgical procedures. We decided that we would have this procedure done, because Dylan had lost so much weight, he began to look like a skeleton with skin. He looked very sickly. Thank God our insurance dragged their asses to approve this procedure. We took Dylan to Dr. Rubinstein who wanted to make another adjustment to the VNS, but we told him NO! He was still having seizures, but we knew that the VNS was definitely the cause of his reflux, because he didn’t have it before the VNS. We finally got approved for the feeding tube and were making preparations to have the gastroenterologist do the surgery, but she happened to be on vacation, so it would be at least another 2 months before we could schedule the surgery. Within that two months something miraculous happened; the reflux, which had come on so suddenly after all the adjustments with the VNS seem to vanish after we stopped his neurologist from adjusting the damned thing. We decided to postpone the feeding tube indefinitely!
For the next several months Dylan continued to gain weight. He started looking healthy again. He no longer looked sickly. He was having seizures, but not like he had before the VNS. He was having more absence seizures where he would just fall out and hit his head and face. We decided to contact Dr. Rubinstein about ordering a helmet for Dylan. (To be continued.)
Good afternoon everyone. My name is Jeff King and I have a son who was born with a rare chromosome disorder. I call it 3X15C. There is no real name for it. He is only one of about a hundred known cases worldwide. This is a triplication of Chromosome 15. For anyone who knows chromosome 15 duplications are common in children with autism. My son has a triplication of that chromosome, therefore, he has autism and was actually diagnosed as severely intellectually challenged. At the age of seven-years-old he began to have intractable epilepsy. He is now 12 and although he is on medication and has been fitted with the Vagus nerve stimulator, he continues to have severe seizures. My wife and I have just recently started a blog dedicated to him. It is about his journey and ours as well. We have titled it “The Real Superman.” because we truly believe he is not only super, but our hero! We are looking for parents, family members, friends of people with special needs and also Sped. Ed. Teachers and people who work with our children. It is our hope that the story that I am telling will not only encourage others, but also offer inspiration and hope. Please come check it out and join our blog page and feel free to leave a comment or two. We are also looking for people to join us at Parents of Children with Disabilities. We only have 3 members and would love more. That is at https://plus.google.com/u/0/communities/107339921749944736766
By Jeff King
December 22nd, 2011 was finally here. We took Dylan to his surgery appointment early that morning at Johns Hopkins Children’s Center. We had to be there by 6:00 AM to get him prepared for the VNS. My wife and I was quite nervous about this procedure. We had researched it and we knew that he was at the top hospital in the world. With the top neurological surgeon for children, George Jallo. Who is also the Clinical Director of Pediatric Neurosurgery and a Professor of Neurosurgery. This guy is the best in this field and he has the credentials to prove it. We were still very worried. We prayed and waited with Dylan until the anesthesiologist showed up. He had his own team that he brought with him. They assured us that Dylan was in good hands. Of course we were concerned after what Terri had went through, but this was the hospital that I had taken her to. This was where the surgeon who had put her back together once practiced at. He had moved on to another hospital, but he had designed the surgery that saved my wife’s life Dr. Charles Yeo was a miracle worker and we were sure that Dr. Jallo was cut from the same cloth. He worked at the same hospital. The hospital that people from all over the world come to when they want to get well! Dylan was in good hands indeed.
The surgery took about three hours and the Doctors assistant kept us informed throughout the surgery. This is definitely a first class hospital and they deserve every award they receive.
After about three hours the Doctor came out and told us himself that everything went well and that they were getting ready to transfer Dylan into recovery. It took about a half an hour before a nurse came out and got us and took us to Dylan. He was out like a light and we examined is tiny body. He had a scar that ran up the left side of his chest to just under his chin. It looked like someone had cut his throat. It was a little disturbing looking to us. Dylan was out for about an hour before he finally woke from his drug induced slumber. We thought he would wake up crying or screaming, but, no, he didn’t. Like some sort of Friday the 13th movie Dylan sat up like Jason Voorhees. He was ready to get up and go. We gave him some juice and he drank it down like it was nothing.
Almost immediately we noticed a difference in Dylan. The first few weeks we almost had the old Dylan back. He was more alert and for the first time in over a year he was seizure free! Our thoughts were, “finally, we have found the magic bullet. This would surely be the golden cure that we were looking for. We took him to Dr. Rubenstein over the next several weeks so that he could adjust the stimulator. He was amazed how well the surgery went and how well Dylan was doing. He witnessed Dylan trying to communicate again. He wasn’t talking yet, but he was definitely more vocal and we truly believed that soon, he would talk once again. Finally our son had returned. How I missed that boy.
Dylan was more animated than he had been in over a year. He was walking around and moving at will. He began to play with some of the toys that had been lying dormant for the past year. We were definitely witnessing our second miracle; the first one being the day he started running. What we didn’t know that this too was only a temporary fix and that the seizures would be back with a fiery vengeance in about 4 months. (To be continued.)
When you’re on the journey of God’s next. The road is not always easy. You see God will take you through the wilderness where you’ll encounter all types of hardships. We quite often want to stay in the bondage of the old, because it is hard, but at least we know what we have. Many stay where they’re content, because it’s just easier that way. Most people are afraid to start a new journey, because they are afraid of the unknown, they’re afraid of the struggle before them. Many who do partake on a new journey is often met with what they believe to be unsurmountable odds. They cry out for food and water and safety, because at least where they were offered that to them. Where they’re headed is an unseen land and often the road is narrow and dark. We quite often travel through barren wastelands where there seems to be no promise of a new and brighter day. Quite often we climb hazardous mountains on our journey to the next; forging our way through the roughest terrain that we could ever imagine. We want it easy, but no greatness comes so cheaply. Greatness cost us everything. We want to learn our lessons without sacrifice without hardship, without going through the darkness. We want to sit atop of the apex and look out over the valley to see what awaits us on God’s journey of next. God knows that we can never learn what He is trying to teach us if we stay atop the mountain. He knows that the valleys and the deepest shadows are where we learn the most. We learn to trust, to wait, to hope to endure, through our deepest and darkest moments in our lives. A wise man knows that the journey through life is just that a journey. We were never meant to become content with where we are at, but look forward with hope to the next part of our journey. When life for me here has ended, I do not believe that my journey will end at death, but it will be the next leg of this journey that we are all on. We cannot see that side of eternity, but we look on with expectant hope that our journey to God’s next awaits us there. Sometimes the journey is thrust upon us. We are taken out of our comfort zone and are forced to begin a new journey; not a journey we would have chosen for ourselves. 12 years ago Terri and I were forced upon a journey that I am sure that we would have never chosen for ourselves. We were young and inexperienced when Dylan was born. We were parents, but could have never imagined the journey that awaited us with Dylan. He has been our guide through this journey. We have learned so much along the way. I decided to go into special education, because of Dylan. I am no longer content with just teaching children with special needs. I now want to be able to do more for my son, other children and adults that have special needs. I want to be their voice, their advocate. I want to be a defender of the defenseless! I want to be able to fight for their rights. See the thing is when you’re on a journey, you get hungry. You need sustenance. You look forward to crawling and scraping through the wilderness, you know that shadows and darkness awaits you, but you also know that shadows cannot exist without light. That light is what keeps you going. You know when you reach the top of that mountain you have a meeting with the Almighty and he is giving you another set of marching orders to carry out! Then it’ll be onto the next journey! A wise man once said that a journey of a thousand miles begins with a single step. I say enjoy the journey.
The Real Superman Part XII
By Jeff King
We began hearing a term called VNS. This procedure was supposed to be working miracles for people who suffered from intractable epilepsy. I didn’t even know what VNS was, let alone how it was done, so I began to research it. I went to the Epilepsy website and began to read about this new and innovative procedure that was helping tens of thousands of people who suffered from epilepsy. They termed this new procedure as, “the pacemaker for the brain” (Schachter, 2013). This device is placed under the skin on the left side of the chest. The wire runs to the Vagus nerve which is a part of the autonomic nervous system. This nerve controls functions of the body which are not under voluntary control. The neurologist sets the devices impulse to send a small jolt of electricity to the Vagus nerve. In theory this can stop a seizure from happening. You are also given a magnet that you can use for any onset signs of seizures, or when a seizure comes on. You placed the magnet over the stimulator outside the chest and in theory, it stops the seizure. You can learn more about it at http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns. This sounded wonderful, a very promising weapon against seizures. The more I read about it as well as testimonies from patients and parents and family members of patients the more I liked it. My wife had also checked it out and we were determined to talk to Dr. Rubenstein about it.
On Dylan’s next appointment to see him he asked us how everything had been going for Dylan, we explained how Dylan just laid around very lethargic and was continuing to have up to 40 seizures a day even on the medicine. We asked him to help us order a special wheelchair for Dylan, because, I could no longer carry him around because, he was getting so heavy, plus he was dead weight. He agreed and put a request into Medicaid. He started talking about maybe introducing a new medication into the mix. Terri and I quickly cut him off and almost in unison said that we wanted to try the VNS on Dylan. He listened patiently and then said, “I couldn’t agree more.” I am glad that you both are very pro-active in Dylan’s health and you both are well informed. I definitely believe that he is an excellent candidate for this procedure.” We talked a little more about it and he gave us all the details about what to expect and what side effects could also occur with this procedure. We all came to the agreement that Dylan would be fitted with the VNS and we began to plan the date of his procedure. His surgery was set for December 22nd, 2011. Which was about three months away.
Medicaid had approved him for his wheelchair, which was great for us, because now we were able to go to the store and take Dylan in with us. Before that I would sit in the car with him while Terri went inside to do the grocery shopping, which was okay, but I believe it was better if Dylan was able to go into the stores too. I mean his life consisted entirely of laying around having seizures. He no longer watched any TV. He was just there. It sounds cold and harsh, but that’s the best way I can describe him. I can tell you as a father, I cried many tears as I watched him slowly disappear his whole personality was vanquished. It was a very sad and horrible existence that he was living. I thought about the Metallica song “One” “Darkness imprisoning me All that I see Absolute horror I cannot live I cannot die Trapped in myself Body my holding cell” (James Hetfield Lars Ulrich, 1993).
I thought how sad, his body was his holding cell! This made me weep hot tears of sorrow ran down my face! I was sure hoping that the VNS would deliver my son from that darkened abyss that he disappeared into.
When we got his wheelchair we decided to go shopping at our local grocery store. I got the chair out of the trunk and set it up. I got him out of the back seat and placed him in his chair. We went grocery shopping. He just sat there impassively, but at least he was out and about, so that was a good thing. We finished shopping and we go outside. I was pushing Dylan and Terri was pushing the shopping cart. There was a car blocking the handicap aisle that was in front of the store. Terri yelled out, “How rude!” The driver of the vehicle pulled up out of the way, but started cussing us out. I told the lady that she didn’t want to mess with my wife and that she was illegally parked there anyway. She got out of her car, but stood inside her car door and hurled insults at us. Then she says to me, “You’re not even a real man, because you couldn’t even create a whole child!” Man I was enraged, but Terri was twice as angry. She wanted to go after this vulgar extremely evil women, but she didn’t. She just walked away! What an offensive wicked thing she had said! I am not going to lie, I cursed her and said that one day, that she would reap what she had sown. She reaped hate she will definitely sow that same hate! This was just another of the many incidents we would have along this journey. The hate and the evil that spews from the mouth of people against people with special needs, children with special needs! I never hated anyone in my entire life, but as God is my witness, if that woman would have choked to death on her hateful words, I would have begun to cheer right then and there. Don’t get me wrong, I really don’t wish those type of things on anyone, but it was very hurtful. It just made me hurt for my son and I just couldn’t believe this woman would say such an ugly thing about a child. (To be continued.)