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 VIIII
By Jeff King
We made an appointment to see a Neurologist at Sinai hospital in Baltimore city. The Neurologist was supposedly one of the best around. We met him and he had all of Dylan’s hospital records from the previous seven years. Our first impression was a good one of this gentleman. He seemed very knowledgeable and genuinely caring. He played with Dylan and made us feel at ease. He talked about a treatment program that we should start and the first medicine he prescribed for Dylan was a seizure medication known as Lamictal. Lamictal would have the least effect on Dylan’s cognitive skills, so the neurologist explained. We began to give him this new medicine and right away, the seizures stopped. He was doing so well on this medication. We felt like the seizure activity that he had been experiencing was just a little hic up in his overall health, but now with this new medication, he would be back on track.
He continued to make progress and the seizures hadn’t effected his cognitive skills as of yet. He was loving on a new show Yo Gabba Gabba and his favorite character on this program was a little fuzzy monster-like dude named Broobie. Dylan quickly learned the songs on this show and began to sing them. His favorite was called “Party in my Tummy” I still remember Dylan saying, “Does the green beans want to go to the party in my tummy?” He would wait several seconds before answering that question, “Yeah” then he’d break into the song, “There’s a party in my tummy, so yummy, so ,yummy, there’s a party in my tummy!” You get the gist of it.
We weren’t really concerned about Dylan’s cognitive skills. He continued to learn how to say words and use sentences. We understood that most of his language was mimicking what he heard, but, he did know and understand so much. Maybe we should have been more concerned, but at the time there was no indication that he would regress and become nonverbal.
After about two weeks of taking the Lamictal Terri noticed a slight rash around his mouth. We weren’t sure what it was so she called the neurologist to voice our concerns. He asked us to watch him overnight and see if the rash got worse. He never told us to stop giving Dylan the Lamictal. The next day the rash had spread all over his body and he was covered in big blotches. His skin looked as if he had an extreme sunburn. We called the neurologist and he told us to bring him into his office right away. We took him into his office and he said, “I was hoping that this wasn’t going to happen? He’s having an allergic reaction to the medication. He then prescribed some antibiotics to begin giving to Dylan right away. He told us to discontinue the Lamictal. We took him home and gave him the antibiotic. It was about a week before he was better. The neurologist then prescribed Clonazepam tablets to begin giving him. These things would begin to have Dylan spacing out. He slowly began his dark decent into an abysmal place where we weren’t sure if we could ever get him back from.
We had gone through some very tough times before Dylan began to have these seizures. I have already mentioned how Terri went into the hospital to have surgery to remove her gallbladder. It was supposed to be a very quick and easy procedure; a same day procedure. It would be done with the doctor using endoscopic surgery. This minimally invasive surgery was supposed to be an easier and safer way for Terri to have her gallbladder removed, however, the surgeon ended up cutting a bile duct and bile from her liver began draining into her stomach. She nearly died and she had to be transferred to John Hopkins Hospital where a well renowned surgeon who had invented the surgery to fix her practiced at. He saved her life. I touched on this just a little, because about three years after Dylan was born, Terri developed a pretty big hernia, most likely from carrying around Dylan. She had to schedule another surgery with the doctor who had created a new bile duct using part of her large intestine to do it. He would perform the hernia operation, because, we didn’t trust any other hospital or doctor around. She had complications and ended up in the hospital for two weeks. She was so upset, because she kept thinking Dylan would forget who she was. He slept with me on the couch for those two weeks, which was a binding experience for the both of us.
When Terri was released from the hospital, I tried to take some time off the job I had been working for the last ten months, but, because I hadn’t been there for the entire year, I was told by their HR department that I could not do it. I had no choice to resign to take care of Terri and the children. It was a tough dark time in our lives. I can’t mention the name of the company I was working for at the time, because they may sue me if I was to, but let’s just say that they were an up and coming Baltimore Clothing company that has ties to the NFL and whose clothes can now be seen in movies, and even other sports franchises. They were not very family friendly and it is sad that the owner got rich off the backs of his workers and didn’t care if those workers had families or more important things to attend to. I could say Karma is well you know. I know I am being so cliché. Anyway, it is my sincerest hope that the owner will one day reap what he has sown!
I mention these things only because it sets the events in the story of what troubles we would have to face next. We as a family had continuously walked through the shadows, but each and every time we came out holding tight to the light of a promise. A promise of a new and brighter day. Little did we know that this struggle was just getting started. (To be continued.)
Dylan got haircut last week. He always look so much older afterwards. Superman is having a wonderful week so far. Remember his appointment is Friday so please continue to pray and send positive thoughts for a good outcome.
This guy right here has a swallow study coming up this month. Hopefully he doesn’t end with any respiratory problems between now and then. We was told if he does have any respiratory issues the appointment would be canceled. His study is on July 19. So please keep Superman in your prayers and positive thoughts that he stays healthy between now and his appointment. This will determine if the ng tube can be removed. Now all we have do is get him up on his feet and walking on his own.
This is a sweatshirt my older son Dacota designed for his little brother Dylan also known as Superman. I think he did a wonderful job on it. He loves his brother so much. Superman has been doing pretty good lately. He is still on the ng tube and going to physical therapy ever other week but he still is not walking on his own.
Some cute pictures of Superman and his niece Delilah! Dylan really doesn’t like his picture taken often so, you have to do it when he is in a good mood or feeling good. Which is not that often here lately. Please him in your prayers. Thanks!
Superman finally got his stair lift installed today. They had me test it out to make it works properly. It goes up pretty quickly. This will help out a great deal with getting him to the shower. I’m not sure how he will feel about it though.
So we finally got a hospital bed for Dylan! I had to put it in my living room. So, Superman is still sleeping downstairs still but he is more comfortable now. A thank you to wonderful couple who donated it to us. He also got a nice little gift in the mail from someone special. He says thank you so much. Superman has not been feeling to good lately. I am asking for healing prayers for Superman. Thanks in advance.
This, guy right here is still not walking yet. This recovery from necrotizing pneumonia is taking way to long. I thought he would be walking by now. It has been six months now altogether. Therapy is going okay but it takes 20 minutes for him to get warmed up. I am so mad at the doctors at John Hopkins for taking so long to diagnose him.