He finally got his go talk 4 the other day. Now we can work on getting him to Express himself. He didn’t want his picture taken as you can tell. At least he is smiling in the one picture. I am so happy he is finally feeling better as well.
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.
By Jeff King
Charlotte is a little girl that suffered the same intractable seizures that Dylan has, but quite possibly worse than what Dylan has. She was having up to 300 seizures in a week, and she was incapable of doing anything, but having seizures. Her parent’s the Figis tried everything possible to give their little girl a chance at a normal life. They even tried the ketogenic diet, which actually was spear-headed by Dylan’s neurologist, Dr. James Rubenstein. We actually considered this diet for Dylan, but Dr. Rubenstein didn’t think Dylan could benefit from it, since Dylan loves to eat. That is one thing that he loves to do. His favorite food has got to be egg salad, but he loves any bread, therefore, the diet would be very hard and expensive to implement, and we just don’t have the finances to incorporate it into Dylan’s diet. That being said, the Figis tried this diet, but it didn’t work for poor Charlotte, then they discovered a something that seemed to prove very promising to them. Charlotte’s parents found out that there was a boy being treated for Dravet syndrome (Intractable epilepsy) with a form of Cannabis oil that was low in tetrahydrocannabinol, but high in cannabidiol. This was actually working for this child and it had reduced his seizures by half. Charlotte’s parents found a dispensary in Denver and paid for a high strain of Marijuana and employed a friend to extract the oil for them. They tried it on Charlotte and immediately they began to see results. Charlotte went several hours without any seizures and then several days went by; still no seizures. They had discovered a medical miracle. Charlotte’s life was forever changed. She is able to walk, talk, and do all the things a normal child is able to do. To read more about Charlotte’s amazing story please go to this link http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/. Upon reading little Charlotte’s story I was so overwhelmed with joy. For the first time, I felt like there is certainly hope for Dylan. I shared the story with Terri.
We both did more research and found hundreds of cases like Charlotte where this CBD oil was working wonders on people with intractable seizures. Where other medications wouldn’t work, this stuff was working, and without all the negative side effects that these man-made poisons were causing in our children. There is only one problem, medical marijuana isn’t legal in the state of Maryland, at least not at the time that we were researching it. They have since legalized medical marijuana in our state, but, the oil is still not legal.
We even considered selling our house and moving to a state where it was legal, however, I am a permanent substitute teacher and I only make 22, 200 dollars a year. Terri doesn’t work, because someone has to be home at all times in case Dylan gets sick and needs to stay home. We do get about 650.00 a month in social security for Dylan, but that is based on my income. The more I make, the less that they give him. It is a vicious cycle and they have put us through the wringer at least once a year since we have started getting it for him. The actually act like the money is coming out of their pockets. The social security administration is the worst government entity that I have ever had to deal with. I will explain that in a later post though.
Anyway, we decided that it just wasn’t feasible to sell our house, which our mortgage is only 650.00 per month, because it is a town house that I bought as an estate sale. We bought what we knew we could afford at the time. We only had two children then and this is the only house that Dylan has ever known, unlike our other two children, but anyhow, my two other children were in high school, so we really didn’t want to pull up roots and move them somewhere else; let alone another state.
My daughter Destiny graduated with honors this year and wants to be an early education teacher, which she decided since she has had to learn to help take care of Dylan at an early age, so she feels drawn into the education field. We are very proud of her. Our son Dacota will be a senior when school starts again in August. He is thinking about taking up graphic art and design. He is actually good at this already. We are also very proud of him. These two children have grown up knowing what it is like to love and care for a person that has special needs. It has helped them to develop real compassion and ultimate character traits. We sure didn’t want to move, because it just wouldn’t have been fair to them. So for now, we have been writing letters to state and local legislators trying to convince them to champion our cause to get this Charlotte’s Web oil legalized here in Maryland. I am even thinking about including a poll on the blog and asking people to vote, so we can present it to our congressman.
I recently became concerned with another issue that we were facing with Dylan. He is a growing boy and he is very solid. The last time he was weighed he already weighed 95 pounds. This may not seem like a big deal, but our room is upstairs, and yes, he still sleeps with us, because as I said in an earlier post, that we became concerned that he may stop breathing in his sleep, so Terri and I decided that it would be best for him to sleep with us, so that we can monitor him through the night. Parents shouldn’t have to worry about these sort of thing, but, it is what it is. I have been obese for the past two years and hadn’t been really strong enough to continue to lift Dylan up to take him up to bed when he fell asleep downstairs, so in February of this year, I began a diet and exercise program in which I have lost over 30 pounds. I have gained more muscle. I have recently contacted some companies to see if they wanted to exchange products for a review on my blog, so I will be adding those reviews whenever I receive these companies’ products. I figured I needed to get stronger and healthier so that I can do everything in my power to be around for Dylan as long as I can possibly be. As I stated in a previous post. I made a promise to him, that as long as I had a breath in my body and a beat in my heart, I would never place Dylan in a healthcare facility. I will continue to keep everyone updated about the Charlotte’s Web oil and these companies’ products. I am also interested in other things which could be helpful for Dylan and would appreciate any ideas, or feedback that anyone may have! Thank You! Please continue this journey with us and as always we appreciate your comments and feedback. (The Real Superman will as always be continued.)
By Jeff King
The Real Superman Part II
We went home and together sat at our computer, we googled triplication of chromosome 15 at that time there wasn’t anything written about it, however, a few things did come up in our search one was duplication of chromosome 15, or Isodicentric chromosome 15 syndrome. We began to read about it. For more information you can read about Idic 15 at the following websites http://www.dup15q.org/understanding-dup15q/what-is-dup15q-syndrome/
By reading this material we had a little better understanding of what Dylan was going to be like, but these were duplications of the chromosome and not a triplication. We read that 1 in 30,000 newborns are born with this. We read about the developmental delay that the children have, behavioral difficulties, mental retardation, autism, seizures and just so much more. It was truly overwhelming. We stumbled on an organization that was called Unique The Rare Chromosome Disorder Support Group. They were based in the United Kingdom. We wrote to them about what the geneticist told us about Dylan.
Several days later we received an email back from them and they informed us that they believed that Dylan had Idic 15. They signed us up with their organization and sent us a welcoming package that had names of other families who had children with rare chromosome abnormalities. There were families in the United Kingdom, and even many in the United States that had children who had Idic 15. We didn’t feel quite so alone anymore. We would identify Dylan’s disorder with Idic 15, however, he didn’t have a duplication, but a triplication of the 15th chromosome, so we still didn’t really know what to expect?
We contacted the Maryland Infant and Toddlers Program and was entered into Child Find. The sent out a team of assessors to see if Dylan qualified for this program. We shared with them all of Dylan’s health records. After the initial assessment it was determined that he qualified for help and right away they set up home visits from physical, and occupational therapist. These visits would go on once a week and they were not fun for Dylan and made us have to go outside on several occasions. The therapist would come in and ask us a slew of questions before they began to work on Dylan. This was done by twisting and pulling and contorting his little body in every way imaginable. He would scream and cry; it was heartbreaking for us as parents. They brought in a giant exercise ball and would place Dylan on it and roll him around on it. By doing this it helped to loosen up his tight muscles.
Dylan’s therapy went on for several excruciating months. He didn’t like whenever the therapists would show up, because he knew that they would make him work his body. We didn’t like to hear him crying in pain, but it was a necessary evil. I probably was the father from hell towards the therapist, because I would yell at them. They would always make me leave the room. I did start to notice that Dylan began to be able to do things that he was unable to do when before the two therapists showed up. He could now crawl, grasp items and then, he was able to sit up.
Dylan seen these two ladies twice a week for a year and the results were amazing. In the meantime, I had begun blaming everyone for the way Dylan was born. I never told her at the time, but I was sure it was my wife’s fault, perhaps it was the doctor’s fault, or even God? I then started blaming myself and beating myself up over it. It is hard to explain the darkness that some people go through when something like this happens. The tears that I cried and the anger and bitterness that was eating me drove me further away from my wife and my other two children.
I continued to angrily question God, “Why in the hell would you allow this to happen to this child? What kind of cruel God are you?” I’d scream through bitter tears. It was in one of those tear-filled rages that I looked at Dylan. He had now been able to pick himself up off the floor and navigate himself around the room using the furniture for balance. Then the words I heard echo inside of my ears and stabbed me right in my heart! “Stop feeling sorry for yourself! Look at your son, he is awesome! He is a champion. No matter how hard it has been on him he hasn’t given up. He has fallen down thousands of times, yet he still gets back up!” That day my 16 month old son taught me the most valuable lesson I have ever learned in my entire life and if I could share this with anyone this is very important. Never, ever give up! If you falter, or fail a thousand times, a million times; keep fighting the good fight! It was at that very moment in time my whole life changed! Dylan hadn’t given up on us and I would be damned if I would give up on him! (To be continued)