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’s school had a garden put in for students and teachers who are no longer with us anymore. It was a beautiful ceremony. They gave us the little succulent because they are strong and can withstand anything.
So we finally got to have Dylan’s celebration of life because the restrictions have been lifted. It was a beautiful day even with the heat and humidity. Lots of food, family and fun. We all got talk about our favorite memories of you my sweet angel! One of the most favorite memories was how you use to say a certain bad word and they always said you used it appropriately. We all sure do miss you more then words can say. I would love to say a big thank you to everyone who showed up today. We also would like to thank everyone for the donations for the epilepsy awareness foundation. We received 105.00 dollars for it. A big thank to my nephews fiance for the beautiful picture she made for us.
It has been a year since you was taken away from us by this evil thing know as SUDEP. It doesn’t seem like it has been a year already. Everything was just rushed after you passed away. It just seemed like a dream that I relive everyday. I miss coming downstairs to your beautiful smile. Dylan you are truly missed and loved my sweet angel.
Dylan’s birthday was March 25! I forgot to post about these cards from his grandmother’s! Thank you both so much for the cards and beautiful words for our Superman. We love you both so much appreciate everything you do for us.
Dylan birthday was on Thursday he would of turned 18 but he lost his battle with epilepsy due to SUDEP on April 24,2020. Next month will be a year without my sweet angel. Things are hard without you here. We all love and miss you so much Dylan. You brought so much joy to our lives. Not one day goes by without you in our hearts. We celebrated your birthday at one of your favorite places to eat and that was the Outback. We got burgers for you sweetheart! Some of the pictures are from world epilepsy day.
My sweet Dylan’s birthday in on Thursday and it is going to be one of the hardest days since he passed away. He should still be here but this thing called SUDEP stole his life from him and those that loved him. We sure do miss you Dylan. Not one day goes by without thinking about you. Some days are harder then others but we manage to get through with all the love you left in our hearts. You received a birthday card the other day. It some dinosaur stickers in it.
Halloween was one of Dylan’s favorite holidays. So in his memory I made these pumpkins. Superman colors and purple for epilepsy.
We go to the sunflower garden every year. This year Dylan was supposed to go with us since he got his ne wheelchair. But he passed away in April due SUDEP. He still made it to the sunflower garden today. Just not the way we thought. It turned out to a beautiful day!
His older brother had this made for the shelf with his urn. I think they did an awesome job on it.
I got this made for the garden! It is smaller than I expected. But it turned out beautiful.