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.)
This handsome guy will be sixteen Monday. He has not been feeling to good lately, he has a sinus infection, cough and post nasal grip. So, he will not even be able to enjoy Birthday cake. I wish things would get better for him. He is still doing PT, OT, and speech but since he has not been feeling good he did not do any this week. He has an appointment with his neurologist next Thursday and a appointment with cypress creek physical therapy next Saturday because the in home therapy is not effective enough for him because they do not have the equipment needed.
Superman got his haircut. It took three of us to do it but we got done. Don’t he look so handsome. He is still not back to himself yet. He is still working hard towards his goals. Again thanks for all the wonderful cards and prayers. He will be starting the Epidiolex this week.
Superman would like to thank everyone for all the wonderful cards he has been getting. He continues to get stronger every day. He is still not walking on his own or eating a regular diet. Superman is still recieving most of his feeds through the nasal gastric tube. The rate he going he will never be on a regular diet. He likes to hold the yogurt, pudding, or applesauce in his mouth instead of swallowing it and ends coughing because of it. He is still getting breathing treatments as well.
Superman had his follow appointment today. The doctor said he sounds much better today. He still needs to finish up his antibiotics though. How do you like his gloves? He has to wear them so he doesn’t rip his nasal gastric tube out. I know some of you will think it is cruel but, you don’t have to take a hour to put it back in. I am getting tired of the ambulance rides back and forth to his appointments. He has an appointment tomorrow at the feeding- clinic at Kennedy kreiger out patient center. I hope they up the amount he can have by mouth tomorrow because him sitting in the chair allday hooked to his feeds is not getting him any stronger. He is still having a hard time walking. When he does walk his whole body is shaking and he walks almost bent in half. He still has a long way to go before he will be walking again. This hospital stay really did a number on his strength. Please continue to pray and send positive thoughts for healing. Superman thanks everyone for all the prayers and love.
So Superman had an appointment with his pediatrician today and he was put on more medication for his breathing. This guy has never had any problems with his breathing until his long hospitalization. Oh not mention the ambulance rides to and from his appointments because he is still not cleared for car rides yet. His progress is slowly coming along. He ot,pt, and speech a couple times a week. His will start coming out soon for school. So, I have been busy since he has been home. Next week he has two appointments a follow up with the pediatrician and one at the feeding at Kennedy kreiger out patient. Please continue to pray for Superman and send positive thoughts. Superman says thanks for all the love, prayers, and well wishes.
Superman came home yesterday by ambulance. He is not cleared for car traveling yet. He still has his NG tube in and we have to cathe him now because one of his medications is causing him not to be able to urinate. So we had to get trained on the NG tube replacement and cathing him. Which is harder than we thought it would be. But we are home and that is all that matters. He seems to be adjusting to home life okay. Thanks for all the prayers and positive thoughts. Superman loves and appreciates all the love from everyone.
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.