Update on Superman!💜

So, Superman is still in John Hopkins. His seizures started to increase again, that means more test. He had 26 seizures yesterday. They are still talking about rehab, I am not real happy about that we have been here 42 days now. It sure would be nice to be home for Christmas but that doesn’t look like it’s going to happen.

💜Update on my Superman!💜

Sitting here at John Hopkins hoping for some answers today about what is going on with Superman. He has a CT scan today at 1 hopefully this will give us some answers instead of the doctors all telling me he is a mystery they are trying solve. He ran a temperature of 103.8 all night. He is getting weird rashes on his arms and legs. His belly has been descended for a couple days. His medications have been increased. They have helped the seizures. But with the fevers I’m, afraid they return with a bang. Please continue to pray for my Superman! I would like to thank everyone for the prayers and positive thoughts!

Update on Superman!

Superman is slowly coming out of the sedation coma! His poor body is all out whack. He has been given insulin because his sugar has been high. The medication take a toll on his body. Yesterday they had him on ketamine drip which raised his blood pressure, so they had to stop it. One good thing is his are stable for now. Hopefully they stay that way.

💜Superman update!💜

Dylan still hasn’t woke up from the pentibarital coma yet. His seizures are starting to slow down. He is now getting some nutrition through nd tube. We are just sitting here waiting for him to wake up. So maybe today will be the day he wakes up. Thanks for all the prayers and well wishes!! Please continue to pray for my Superman. now.https://m.facebook.com/story.php?story_fbid=2413099008706781&id=100000201167238

Superman is finally home!!!

Superman finally got released today. Don’t he looked thrilled to be home. I am one happy mom, but exhausted though. I need at least 10 hours of sleep. So, we still never found out the cause of all the seizures. All the test came back negative. The not knowing the cause is scary but hopefully everything is under control now. Thanks for all the prayers and well wishes for Superman. ❤

Silly glasses!!!

We had a surprise party for Jeff it was his 50th Birthday. He received a few joke gifts. One was a cane filled with different things on Superman posed with the glasses from the cane.

The Real Superman Part VIII

By Jeff King

The Real Superman Part VIII

Throughout the years, Dylan continued to struggle. He could walk and run. He could talk, but as I mentioned before his language was rote and he would just use words that he had heard. I believe that he did know some of them though.

Dylan ran in the Special Olympics when he was six years old. We bought him a bike for Christmas and he would get on it out in the front of our house and using his feet he could ride it around. It had training wheels on it, and he never actually learned to ride it, but, that didn’t matter to him; he loved it and had fun just sitting on it and using his feet to move it.

Dylan used to go with my wife up to my older children’s elementary school every morning. There was this little girl, who absolutely adored Dylan and she would go out of her way every morning to seek him out, so that she could give him a kiss on the cheek. My wife said Dylan began to look forward to the little girl coming over to him to give him a kiss. Terri said that he would smile. That blew out my argument that Dylan would not have a first kiss, because, he had many.

Dylan also liked to get in the front seat of our minivan and sit up at the steering wheel. He would laugh and say, “I’m driving, I’m driving.” He would turn the steering wheel back and forth, and he also would turn on the turn signals. These are days that I miss so much. Dylan was incredibly smart. He would come up to us and say, “Want to sing?” Whenever it would rain, if we were walking to the minivan he would always inform us, “It’s raining, it’s rrraining!” One winter we had a big snow storm. It was Dylan’s first real snow and we were at my brother in laws house. I had Dylan outside playing in the snow, he cracked me up when he suddenly said, “Look at all this damn snow! It’s cool!” He did pick up some inappropriate language and at one of his IEP meetings his teacher informed us that he had dropped the F Bomb, but she added, he used it in an appropriate way. We struggled hard to get him to stop saying those words. Many of those words he had learned from his older siblings and probably neighborhood children too. This may sound pretty asinine, but, I would actually love to hear him drop the F Bomb again. At least then, I could hear his voice once more.

As I mentioned before, he could be quite a clown. He would do things to make us all laugh at him. This may actually sound inappropriate, but this was one other thing that would make us all laugh at Dylan.  As I mentioned before, Dylan loved Dora the Explorer. He loved the character the map. If you’re not familiar with the map from Dora, it was wrapped up like a scroll and it would sing, “There’s a place you need to go. I can get you there you know, cause, I’m the Map, I’m the Map, I’m the Map I’m the Map.” Well Dylan would actually pull his penis out and sing this little tune. We assume that Dylan thought that his penis was the map, and he would start singing this tune whenever he pulled it out. We struggled to get him to stop, and we’re still struggling with that problem today. He doesn’t sing the song anymore though.

He also knew how to get our sympathy. One day I had him out front and he was running up and down the sidewalk, when suddenly he tripped and fell. He injured his right arm. We took him to a clinic where they examined him and told us that he probably bruised his arm. They wrapped it and told us to put ice on it and give him Tylenol for pain. We did this for about two weeks, because he continued to favor his arm. He would scream whenever one of us tried to lift it up over his head. He whimpered and acted like a wounded animal. We felt bad for him and took him to his pediatrician who re-examined it and said he didn’t see anything wrong with it. He set us up an appointment at a specialist. It took us about two weeks for his appointment and we continued to keep his arm wrapped in the meantime, but whenever one of us tried to lift up that arm, he would continue his little act. Finally the day of his appointment. The bone specialist looked at the x-rays that we already had and took some of his own. He examined Dylan’s arm and about thirty minutes later he called us back in the examining room to go over the x-rays and what his findings were. “I don’t see any nerve damage, any broken bones, or anything at all wrong with his arm.” He explained to us. Dylan had been playing us the whole time. Right after that appointment, Dylan’s arm seemed to be miraculously healed. This little boy was quite an actor. We never had any more trouble with him or his arm afterwards.

Dylan was never potty-trained. We tried forever to get him to go on the toilet, but he just wouldn’t do it. They started to try to teach him at school also. We bought him pull-ups and would take him every half an hour, but, he just wouldn’t do it. We did this for about a year and finally we were having some success. He would come up to us and back his backside up to us and say “Let me check.” He did this because we would always say let me check when we wanted to check his diaper. He would tell the teachers at school, “Pew you stink, whenever he soiled his diaper.” They would tell him, “No, Dylan you stink,” and laugh about it.

We began to be able get him to go on the toilet once in a while. We were happy, because this was a start and we believed that we would finally be successful. Dylan was almost seven years old. He still drank out of a baby bottle and still wore diapers. It was getting expensive. We finally were able to get Medicaid to cover his diapers, but here we were on the verge of a great big breakthrough. We were convinced that he would be potty trained soon, and we wouldn’t need diapers or pull ups any longer. It had been a long journey, but, there was a light at the end of the tunnel.

Then on April 18th 2010, on my wife’s birthday. It was a Sunday. I told Terri that she could sleep in and that I would take care of Dylan. Dylan and I were watching one of his other favorite programs Diego. He was very excited because two of the characters on the program; two monkeys known as the Bo Bo brothers were on there and they were causing some havoc. Dylan was yelling, “Stop Bo Bo’s” which is what Diego and his pet jaguar was saying. The phone began to ring and I got up to answer it. Dylan was standing in front of the TV enjoying his cartoon. It was my mom. We started talking. I decided to go back in the living room to sit down. That’s when I found him. Dylan was face down on the floor moaning he was in the middle of a full blown grand mal seizure! It seemed as if all the blood drained from my body! I screamed, “OH MY GOD!!!!” I heard my mom yelling on the phone, “What’s wrong?” I threw the phone across the room and begin to yell for my wife! “TERRI WAKE UP DYLAN IS HAVING A SEIZURE!” He seized for what seemed an eternity. Terri came running down the stairs. “OH GOD CALL 911!” I ran and picked up the phone from across the floor my mom was still on there I quickly told her what was going on and she began to cry and hung up. I immediately called 911 and told them that my son was having a seizure! “PLEASE HURRY!” I shouted. The 911 operator was asking me a slew of questions that I sure as hell wasn’t worrying about answering right now. I wanted to just scoop Dylan up off the floor and hold him in my arms. The seizure had finally subsided and we awaited the paramedics……. (To be continued.)