Superman had a rough night. His blood pressure kept dropping down to 70/30 they had put him back on the norepinephrine to help with that. He is also on the c- pap instead of the nasal cannula. He has been resting most of the morning. Oh yeah that’s right it is Thanksgiving, Happy Thanksgiving everyone from Superman at John Hopkins. Please continue to pray for my Superman and thanks for all the prayers and positive thoughts.
So, Superman had another CT scan yesterday and it is showing improvement. We came in the hospital for his seizures and ended up with necrotizing pneumonia. Which took them 12 days to diagnose. It is going to take awhile for him to heal. We are already going to spend Thanksgiving in the hospital. He has not been comfortable for the past 2 days. I think he wants the breathing tube out his throat. It must be getting uncomfortable since he has had it in for 20 days now. He is my baby and is still in need of prayers and positive vibes.
So this an article I found about necrotizing pneumonia. I was shown his CT scan today and it was not pretty. I still can’t believe how long it took them to diagnose him with this.
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.)
The Real Superman Part I
By Jeffrey King
Why do we consider Dylan the real Superman you may ask? Well if you knew Dylan and children like Dylan, you would see that they really are super! Do they have the power to fly, or bend steel, or are they faster than a speeding bullet? No, but the everyday struggles that these precious children have to endure is nothing less than super. Many people look up to athletes, police officers, fire fighters, soldiers, etc. as heroes, and they definitely are; however, my biggest hero is Dylan and let me explain to you why. In 2003 my wife was pregnant with our third child; which was Dylan. This was a child that we were uncertain that she would be able to have, because in 2001 my wife nearly lost her life due to a medical surgery that went wrong. The doctor ended up cutting a bile duct while he was removing her gallbladder. She was hospitalized for over a month and I was left to care for my two small children who were 2 and 3 years old at the time. I lost my job, due to having to miss so much time caring for them. I won’t get into too much detail about that dark time in our lives.
Time warp to 2003. We found out that my wife was expecting, we were actually shocked, because the doctors said that they didn’t think she would ever be able to have another child. She had a very uneventful pregnancy with no complications. All of her pre-natal check-ups were fine and she did exactly whatever her gynecologist told her to do.
Dylan was born on March 25th 2003 at 5:49 AM. He weighed 8 pounds 9 ounces. He seemed healthy and my wife was fine. No complications. The next morning, he was a little jaundiced, therefore they put him under an ultra violet light overnight. We were discharged the next day, but were told to bring him back to check him out in 3 days, because of the jaundice. We took him back and were given a clean bill of health.
Almost right away we noticed that Dylan was different than our other two children. He had a difficult time sucking his bottle, he couldn’t seem to focus his eyes on anything. He wouldn’t follow my wife’s voice. He was very stiff and floppy. At three months old he couldn’t hold his head up, didn’t smile and couldn’t grasp objects. This was difficult on my wife, because, she felt that something was wrong, but family members just said that she held the baby too much and didn’t let him develop on his own.
We were very concerned that Dylan wasn’t meeting any of his milestones, so we took him to his pediatrician to voice our concerns. He was a little over three months old. She examined him and told us that he just may be developing slower than normal and told us to give him another few months and bring him back if there were no changes. She saw him again when he was six months old and he still was having a developmental delay. She then made us an appointment with a geneticist. It took us several months to get in to see the geneticist and he examined Dylan and did some blood work on him.
Several weeks later we received a call from Dylan’s pediatrician who told us that we needed to go and see the geneticist right away; he had the results of Dylan’s blood test. We called to make the follow up appointment with him and he saw us right away. He brought us into his office and he explained what was going on with Dylan, who was now nine months old. I will never forget the conversation. He told us that what Dylan had, he had never seen anything like it since he became a doctor. He went on to explain that Dylan had a triplication of one of his chromosomes, chromosome 15. He explained that this chromosome had made two copies of itself; the original, the second copy, which was inverted and a third copy of itself. He went on to explain that this was what was causing Dylan’s developmental delay and that there wasn’t anything that he could do to fix it. He told us that Dylan would probably need extensive services to try to get him to develop. He would need physical and occupational therapists as well as a speech therapist. We asked what should we expect and his reply was exactly this, “You can’t put Dylan in a box, I am not sure what he’ll be able or unable to do, but it is better to start these services early to benefit him as much as possible.” He also went on to tell us, “Since I have never seen this condition, I really don’t know what you can expect and if I were you two, I would go do your own research to see if you can find any other children with this rare condition.”
Terri and I were devastated! We felt like we did something to cause our boy to be like this. We saw a child in a wheelchair who was severely crippled and was twisted up like a pretzel. Excuse my description, but that is the only way I could describe him. Terri looked at him and began to bawl uncontrollably. I grabbed her and pulled her to me. I told her, that we didn’t know if Dylan would end up like this, but even if he did, we will be the best parents that he could ever have…… (Continued Later.)
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/
http://ghr.nlm.nih.gov/condition/isodicentric-chromosome-15-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)
thetruesuperman 