Dylan is sick!

Dylan is not feeling good today because we had to replace the ng tube over the weekend. Everytime we have to put the tube back in Superman ends up sick. He still has been refusing to cough. If we could get him to do that we probably wouldn’t have this problem everytime we replace th ng tube. Please keep him in your prayers and positive thoughts. Thank you in advance. He was resting last night with his niece Delilah. It was so adorable.

Superman is bad!

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.

Superman update!

So, Superman has been doing some walking in rehab with the help of a lift. He also has the ball in the picture that motivates him to move. On Friday he did a lot of walking with mine and his PT assistant. I am proud of the progress he making.

Update on Superman!

So Superman is running a fever again. The seizures are back again. They are not sure what is going on now. Running a lot of tests again. So, Thursday or Friday afternoon when he was getting his deep suctioning he aspirated and they think that might be the cause of the fever. They are trying to get the ball rolling to get him on the epidiolex the cbd approved medication. Oh not mention his room was moved again. Once again I am asking for prayers and positive thoughts. Thanks for all the love for my Superman.

Superman update!💜

So this happened today. They had him on bed today that rotated to a standing position. He tolerated it pretty well, he was standing up for about 20 minutes. It looks like he has gotten taller to me. They also removed the second chest tube. He does still have to be suctioned regularly because he still has a lot of secretions. They want to talk to us about going to rehab and few other things. Thanks for all the prayers and positive thoughts. Superman sure appreciates everything.

Another update on Superman!!!

He is starting show signs of waking up. His right pupil is responding to light finally. His left pupil is still a little dilated from them checking his eyes to make sure it wasn’t bleeding behind it. He has been having spikes on the eeg but they still seem to be seizure activity. I will know more once neurology team does rounds. One again thanks for all the prayers and positive thoughts. I just ask for continued prayers and positive thoughts. 💜

The Real Superman Part XVI

By Jeff King

For a while Dylan did improve. He wasn’t having a lot of seizures and whenever he had them they were quick and he recovered pretty quickly, as if nothing even happened. We were able to successfully get him to where his helmet, but it was a hell of a fight to get him to do it. Every time we would put it on him, he would rip it off and throw it across the room. Most of the time he would smile about it. He knew what he was doing. In the end our perseverance won out and Dylan still wears a helmet today, but, man the struggle was real!

One early September day in 2014; right before school; Terri had just given Dylan a bath when a very freak accident occurred. Terri had a whole collection of brass and ceramic unicorns that she had collected since she was a child. Terri had just finished bathing him and put his helmet on. She was preparing to get him dressed. He had been running around the room like a Wildman, which by the way was normal for him when all of a sudden it happened. Dylan had an absence seizure and fell backwards hitting the shelf that housed all of Terri’s fine collectable unicorns. She called for me I was downstairs getting ready for work and I hear her scream my name, so I go flying up the stairs like a bat out of hell. There was blood everywhere. We lifted Dylan up off the floor and sure enough he was bleeding, but we weren’t sure from where. I quickly removed his helmet to examine him. That’s when we noticed that he had a small puncture wound in the back of his head, “But how?” we asked ourselves. He had his helmet on. Terri looked over at the shelf to examine the damage when she noticed a particular ceramic unicorn which was intact all except for the fact it was missing its horn. I picked up Dylan’s helmet off of the floor to reexamine it. It was then that I found the unicorns horn, it was wedged in a small hole that was created when Dylan fell on it. We cleaned him up and the mess and he stayed home from school that day.

Dylan has always found a way of destroying things; sometimes they were accident, while other times he would purposely destroy things. Here is a list of things that he has destroyed: Our semi new flat screen HD TV that we only had for a year. We had just finished paying the credit card off that we used to purchase it with. Dylan had an absence seizure and fell head first into it. We had to borrow a small TV from my sister-in-law until we were able to buy a new one. He has broken 4 sets of lamps, by just pushing them off the end tables. It takes him several times of knocking them off, but eventually he is successful. We always try to correct him, but he just doesn’t seem to understand. He has torn up several sets of living room and dining room furniture as well. He just ripped the fabric off one of our sets of living room furniture. We bought nice leather furniture and he was good with it. He never once tried to tear that set up, but over the years from wear and tear it eventually wore out, so we waited until tax time 2014 and bought this furniture with cash. It cost us about 1300 dollars. It wasn’t made very well and for some reason Dylan decided that he wanted to tear it up. It was fake leather and Dylan had it destroyed in less than 4 months. We just bought another leather set on credit and he seems just fine with it. We purchased a dining room set a few years ago. The table was very nicely made and we still have it today, but we have went through three sets of chairs. Dylan would go out in the dining room and knock the chairs over. He reminds me of the Tasmanian Devil from the Warner Brothers cartoons. He has destroyed pictures, which some he has stood on the furniture and ripped them off the walls. He ripped Terri’s dream catchers up. We caught him several times with the feathers still in his mouth. Like a cat that just ate the canary found with the evidence still in his mouth. It sounds funny, but at the time that he is doing these things, we don’t find it very funny. We have tried to stop him several times, but he is like a tornado going through a room, or a bull in a china shop. No matter how many times we stop him and sit him down and tell him no, he will wait until an opportunity arises and he will go tear things up.

He has torn up our plants several times. Just recently he was playing in his toy box and I was watching TV when he came out into the living room and his face and hands were covered in dirt. He had been into Terri’s plants. I had to clean him up as well as the mess he left for me. He came in and looked at me to show me how proud he was of himself. He has ripped up my other children’s homework, my college papers. My niece gave him the name the Ripper, because when we were visiting them one day he had gotten into her room and ripped up one of her books. She came running into the living room crying “Dylan is tearing my book up! He is the ripper!”

Whenever we have told people about this they usually tell us things like, “Buy a gate to keep him out of places.” We actually have done that we have several gates put in place; one at the bottom of the stairs so Dylan cannot go up the stairs for fear that he will have a seizure and fall down them and the other blocks him from the kitchen, so he can’t get into the kitchen to pull the stove over on himself; which he has actually done several times before we got the gate. The gate guarding the kitchen has been compromised several times. Dylan has fell on it shattering it twice, both times Terri has had to glue it back together, because the gate was specially ordered on line and we can’t find any like it at any of the stores. (To be continued.)