These are pictures of Superman from his swallow study!
These are pictures of Superman from his swallow study!
So the results showed that he was silently aspirating each time he swallows. We was told he could only have a half a cup of purees twice a day now. They also went back up on the ng feeds again. The biggest thing is they are always trying to push a g- tube for feeding. I want my son to be able to eat again. He loves to eat again he loves to eat. He is a cheeseburger and pizza guy. He is so sad not being able to do that anymore. He has been working really hard in his therapy’s. My first question was how is he suppose to gain his muscle strength in his throat if he is not using those muscles. They proceeded to tell me they have excercises for that and you can an appointment with me for that. Just show me the exercises and I can do them at home because you should of did that while he was inpatient at Kennedy kreiger. He shouldn’t be like this in the first place because of seizures.
Superman decided he didn’t like the tube down his nose anymore so he removed it. He is getting a break from it right now, but at five it has to be replaced for for his feeding. I hope it goes well, because he he getting back to his bad self again. I can say one thing, I’m proud of how hard he is working in therapy. Please keep the prayers and positive thoughts coming.
So, Superman has been doing some walking in rehab with the help of a lift. He also has the ball in the picture that motivates him to move. On Friday he did a lot of walking with mine and his PT assistant. I am proud of the progress he making.
Superman Dylan would like to thank everyone for the wonderful get well cards and Christmas cards. He is sitting up in a chair today, but he still managed to find away to get them legs up. Oh yeah, not mention we are now on day 31 at John Hopkins picu. Thanks again for the prayers and positive thoughts! Superman loves you!💜
So, Superman had his breathing tube removed today but it didn’t last too long they had to put it right back in because he wasn’t ready for it to come out. They took him off his rubinol which is for drooling. They put him back on it today. To help with all the secretions. They said they would try again in a couple days. We have been here since Halloween so that makes it twelve so far. I wish they figure something out. Especially what is causing the fevers. Still no explanation for them. They have done almost every test they can think of. They are calling him a mystery. I don’t know what to think about that. I wish they would figure something out and bring my Superman back to me. Please continue to pray and send positive thoughts. Thank you!
By Jeff King
It has been about a month since I last wrote on the blog. I have been busy working and also with college. I have also been looking into getting CBD oil legalized here in Maryland. One of my older son’s Nicholas most recently introduced me to a young man who is an advocate for NORML in Maryland. His name is Chris Hartsell and he has asked Terri and I to go down to Annapolis Maryland to sit in on a legislation session concerning the legalization of medical marijuana, but more importantly the CBD oil that we are so desperately trying to get for Dylan. I informed him that I would definitely be interested in this, and that I would like to bring Dylan as well and perhaps share our story with the Governor, and the legislative committee concerning this matter. We definitely have a story to tell and we want these lawmakers to hear it.
Although we are not currently member of NORML and after having hearing some of the chapters leaders testify on video in Annapolis, I actually see why many of them are not taken seriously; however, I intend to change that. If I am asked to testify, I believe I bring a personal and heart-felt story to the message of why this plant should be legalized, and made available to patients that are suffering from different ailments. As I have mentioned before, I do not use marijuana, nor do I even drink alcohol. I am not condemning anyone for what they may do though.
I have personally witnessed a few people who were dying of cancer, and even one person, who was very near to me die of AIDS. These people were in constant pain and I watched as these diseases ate away at their bodies and left them former shells of themselves. The friend who died of AIDS couldn’t eat, or do anything, because he was in such miserable pain. He began to smoke marijuana for the last six months of his life. Through this plant, he was able to get back some normalcy to his life. He could cope better with the pain, he also could eat, because it helped him with the nausea that he would get from his AIDS meds. Ultimately, he still died, but at least he lived his last days with some sort of peace.
I have researched many children and adults who have suffered from epilepsy and other ailments. The medicines that are prescribed to them is nothing more than legal poisons that have vicious and debilitating side effects. For example Dylan has to take two different medications to try to control his seizures, yet even these two medicines combined together working in concert with his VNS still doesn’t keep these vampires at bay. I call them vampires, because these seizures, and the medications used to combat them have robbed Dylan of his quality of life. The side effects for Keppra in children include sleepiness, accidental injury, hostility, nervousness, and weakness and even suicidal thoughts! Wow so my 12 year old son may or may not have thoughts of injuring, or killing himself? That is frightening! The side effects of Vimpat which by the way shouldn’t even be prescribed to any patient under 17 years of age, but because Dylan has intractable epilepsy, where no medication seems to work, he was prescribed this medication. The side effects include dizziness, spinning sensation, drowsiness, blurred/double vision, nausea, vomiting, tiredness, loss of balance or coordination, difficulty walking, shakiness (tremor), headache, or memory problems. I must say, he has lost a lot of his cognitive abilities, and there are days that he cannot walk at all. We witness the tremors, so this is a great medication for people! Now I get to CBD oil, AKA, Charlotte’s Web. I have researched hundreds of cases of children and adults who suffered from uncontrollable seizures, such as Dylan has. This oil has worked miracles in all the cases I have read about. I have talked to some of the parents via email and most of them said, that they’re not even sure that their child would be alive today if it wasn’t for this oil. “CBD oil or Realm Oil) for intractable seizures in children with Dravet Syndrome. These children can suffer 40 or more seizures per day; the seizures are often prolonged in length. The oil is made a from a special strain of marijuana called “Charlotte’s Web” that has extremely low levels of tetrahydrocannabinol (THC), the psychoactive ingredient in marijuana that leads to the “high”. However, the strain has elevated levels of cannabidiol, or CBD, a non-psychoactive component that has been shown to have a number of therapeutic benefits, including those that limit seizure activity. The oil is taken in an oral liquid form, not smoked like traditional marijuana. News media has showcased several families from states that do not allow the CBD oil. These families have moved to Colorado from their home states to access the oil legally for their children who suffer from the debilitating seizures”. (http://www.drugs.com/illicit/cannabis.html). I find it hard to believe that the Governor of Maryland, who by the way I voted for, who also has cancer hasn’t considered introducing this bill into legislation. Just today, I was sent an email from my friend Chris Hartsell informing me that the Anne Arundel County Executive that I also voted for has said that he would be against any legalization of medical marijuana, or any of it derivative’s. This fool doesn’t even realize how this could help Dylan and children like him. Hell this could help thousands of ill children as well as adults. These politicians would rather get behind big pharmacy and liquor than consider really helping their contingents that he promised to help for their vote. His banner reads, “People Before Politics” What a crock of BS. Steve! I say put your money where your mouth is and do the right thing for the people of the community. By being against this you are aligning yourself with the corporate clowns, who want to continue to push their poison on the people regardless of the harm that it is doing.
Before Dylan began to take this medication, he could run and play, he could talk and sing. He was a lively and charming little boy. Now he doesn’t talk. He hardly walks. His singing is replaced by unintelligible babble. We watched as our little boy slowly and quietly faded away, and was slowly replaced by a shadow of his former self! I ask you this, “What father among you, if his son asks for a fish, will give him a serpent instead?” Matthew 7:10. My son can no longer ask me for a drink, or tell me he is hungry! The poison that he has had to ingest for the past 5 years has seen to that.
What parent would do whatever it takes to give their child a better quality of life? I know that me personally, I would tread through the flames of hell itself, if I thought I could find a cure for Dylan. There would be no mountain too high, nor a sea, or dessert to wide to cross. There’s nothing that I wouldn’t do for Dylan. This is just too important.
I am asking my friends, family, and acquaintances to please, please write, share and tell others about this important issue! I implore you! Thank you!
If you are in Maryland and can write the Governor on Dylan’s behalf, Terri and I would sure appreciate it. His email is http://governor.maryland.gov/mail/default.asp
If you’re a resident of Anne Arundel county, I am asking you to send Steve Schuh an email on Dylan’s behalf that email is Steven Schuh at firstname.lastname@example.org . We appreciate it.
These pics are before the Seizures and after the seizures
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.)
The Real Superman Part X
By Jeff King
Over the next several month’s Dylan continued to have seizures he had Grand Mal, Absence, Myoclonic, Clonic, Tonic, atonic. You name it, he had it. The seizure activity was so frequent, my wife and I often wondered how long can Dylan survive like this. These dark, demonic beast had taken control over my son’s body and mind. Between the Clonazepam, and the seizures, this little boy was absolutely fried. I remember crying leave him the hell alone! After he would shake and violently convulse. I felt like Father Damien Karras in the Exorcists when Regan was convulsing and being distorted by the demon that had possessed her! I to screamed out “Take me! Come into me!” Leave him the hell alone! He doesn’t deserve this! He hasn’t done one thing to deserve this! He is an innocent child! This demon was slowly consuming my baby and I felt powerless. I couldn’t do a damn thing to help him. What a dark feeling. I felt like the Devil himself had come to dwell in our household. This sinister being that held my son hostage had made me realize that this was indeed a dire situation. I started remembering the scriptures “Jesus I know, and Paul I know; but who are you?” Acts 19:15 I felt just like one of the Seven Sons of Sceva, because this beast didn’t know me, but it sure was very acquainted with my son and this demon wasn’t going anywhere. I remember the words that Jesus had spoken in Matthew 17:21 “However, this kind goes not out but by prayer and fasting.” I had prayed, I had fasted I had done everything that I could possibly think of doing, but this one wasn’t going a damn place. It sure wasn’t going back to the hell that it came from, but it did bring hell with it and it was unleashing every dark power it could unto my son and all we could do is watch helplessly! “My God, My God, why have you forsaken me?” I cried those very words. It stung my heart. The feeling of helplessness and hopelessness had taken control of me and my wife. We weren’t just walking through the valley of the shadow of death we were neck deep in the mire of it!
We went back to the neurologist who now prescribed another medication that was supposed to be great for seizures. It was called Keppra and it isn’t a good drug either. Some of the side effects are horrible and Dylan was becoming more and more non-verbal so he didn’t have a voice to tell us how he was feeling, or what this poison was doing to him. Just some of the side effects were: Hallucinations, unusual thoughts or behavior, suicidal thoughts, bruising, severe tingling, numbness, pain, muscle weakness; feeling very weak or tired, fever, chills, body aches, flu symptoms, sores in your mouth and throat, problems with walking or movement
Imagine your child taking a medication approved by the FDA that can cause hallucinations or suicidal thoughts and your child cannot tell you how he’s feeling? Over the first several weeks on this poison Dylan began to bruise more easily every time we turned around Dylan had a new bruise on another part of his body. This certainly wasn’t the worst of it though. Dylan became weak and very lethargic. He would simply lay on the couch and didn’t do anything. He didn’t even enjoy watching any of his cartoons anymore. The little boy who was once so happy and lively had become a shell of his former self. I cried often. As a man society seems to believe that if you cry then it is a sign of weakness. I didn’t give a damn about what society thought about me. My son who once was filled with such joy and love was now this empty being that was now impassive and cold. His beautiful voice was now gone and would never return. The singing had stopped, the laughter had stopped the joy ceased to exist. We were left with memories of a different Dylan. A Dylan that used to run and play and joke and sing and talk and laugh. These demons had robbed his very soul. Between the poisons we were pumping into his body and the seizures which still had control over him, my little boy was gone! Terri and I went through the 5 phases of grief all over again; only this time it seemed much worse.
This had an effect on the entire family. The kids stopped playing with Dylan, because, he wasn’t interested in playing or really doing anything. He would just lay around. At school he regressed and no longer did anything that he used to. The teachers let him sleep most of the time, because the seizure activity was so bad that he would seize sometimes up to fifty times a day and that was with the two medications that he was on. We now had gotten him a wheel chair, because he could no longer walk. Just a few short years ago, Dylan ran in the Special Olympics. This child couldn’t even crawl, let alone walk!
This was indeed one of the darkest times in our lives. The journey we were on had driven us across an arid desolate wilderness. There were no oasis in site and we were getting ready to climb the highest mountain facing the toughest terrain that we would have to encounter yet. If there were a light at the end of this tunnel we had not spotted it yet. We were left forsaken and alone, but we had to continue to trudge on.
The Real Superman Part VII
As a parent with a child who has special needs it is sometimes a very difficult journey. When you find out for the first time there is a process that you go through. As psychologist like to call the 5 phases of grief. At first, there is denial. You just don’t want to believe it. I liken it to losing a loved one. You just can’t believe that your child has something wrong with them. All the hopes and dreams that you had for them seem to vanish. I know that I kept playing every scenario over in my head. He wouldn’t play any sports, I could envision him playing football, or baseball, but then suddenly the reality came crashing in. Dylan would not be able to play any of those sports. As a family, we all are very sarcastic and have very dry senses of humor, but that shared sarcastic humor would be lost on him. What was also hard for me to come to grips with was Dylan and I probably wouldn’t share in those coveted father and son talks or those father and son moments that every father looks to share in with their son; those rite of passage moments wouldn’t come for us. It saddened me to think about those things. I also thought about the fact that he would never experience his first kiss, marriage, or children, or any of those things parents look forward to from their children. I was left with a feeling of despair and actually felt alone, like no one could know the depth of my despair. What a cold hard lonely feeling.
It didn’t take long before the feeling of denial and isolation turned to bitterness and anger. This was the time that I would blame my wife, myself and my God! Those were the times when anger and frustration crept in and darkened my thoughts. I asked myself, “what in the hell did I do for Dylan to turn out this way, had pissed God off, did I commit such a dark sin that this was my retribution for it?” “Maybe this was my wife’s fault, maybe something was wrong with her?” Those thoughts were soon replaced by blaming God. “It was all his fault!” I told myself. “God has caused this!” “What father would impose this sentence on one of his own children?” I continued to ask. I was angry at God and I was going to let him know just how angry I was! I felt like Job, I wanted to question him; hell I wanted him to come down in the flesh so that I could personally confront him. I would fight him man to man. I issued that very challenge to him.
The tears of sorrow that I cried, were soon followed by tears of anger and frustration. I was bitter! I was mad as hell at the world, at myself and at God and wanted everyone to know it.
I soon started trying to bargain with God, “God if you would please help my son to be able to walk and talk and understand. I will do anything.” I also thought that maybe if we only knew sooner that something was wrong with Dylan, maybe there would have been something that we could have done, or tried? I was definitely trying to bargain with God.
Then slowly depression came creeping in and I don’t know what my wife felt, but I truly felt like the weight of the world had been cast upon my shoulders. The dark abyss of despair heavily surrounded my soul and my very heart felt as if it was going to break. I began to feel sorry for myself, “How am I going to raise this child?” I stammered. “I am not worthy of this task. It will be incredibly too hard for me. I started feeling sorry for Dylan. “He is going to have such a hard life, other people will make fun of him. What are we going to do?” All these feeling of doubts begin to invade my mind and cloud my thinking. I would lie awake at night and ponder all of these questions.
Then finally a peace came over me when I saw Dylan doing his daily struggling trying to sit up, or to crawl, or to grasp a toy, or to stand. Watching him fall continuously, but never giving up. Always getting up and trying it again. He would fall, then up again. I thought, “My God I probably would have given up by now?” He didn’t. He wouldn’t. It wasn’t in him to. I was witnessing firsthand what a true fighter; a champion was made of. In a moment of selfish reflection I saw all the struggles in life that I had went through thus far, growing up in a poor neighborhood. Raised by a single mother who had to take on menial jobs to try to supplement the welfare and food stamps we received. The struggles I had to endure in the projects of Baltimore. I didn’t have a father around to teach me or to share in those father and son moments. I had to struggle to get up out of the poverty. I couldn’t quit. Failure was not an option. I had forgotten that. Dylan taught me that lesson that day. He showed me what it was like to be a warrior! I was humbled. God had used my little man to teach me such a powerful life lesson and I felt humbled that Almighty God would chose Terri and I to be the parents of this Real Life Super Hero! I had finally accepted the fact that we were chosen for such a special task. That was the day I stopped feeling sorry for myself and for Dylan and saw things for what they really were. (To be continued)