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.
We took Dylan to the doctors this morning and it wasn’t good news. The doctor wanted to admit him to the hospital. He says he has bronchitis or pneumonia. But he gave him a breathing treatment in the office and his oxygen level came back up so he let us take him home. He is on an antibiotics, steroids and breathing treatments every 4 to 6 hours. He has to go back to the doctors tomorrow morning to be checked out again. Please continue to pray and send positive thoughts.
These are pictures of Superman from his swallow study!
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.
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.
They took him off the ventilator yesterday, it was hard to watch him at first because he was choking and gagging a lot. He is doing much better today. Physical therapy came today and had him sitting up on the side of the bed first time in 21 days, he was getting tired from it. So he is resting now. He did have a fever overnight. So far today he hasn’t had fever. His blood pressure was a little low overnight. Baby steps but he his headed in the right direction. The chest Xray shows some improvement on in his lungs, but he still has ways to go. He has been doing a lot of wheezing today. I have been suctioning him a lot today, it is bring a lot of the junk up from his chest. He was happy to see you balls today but he didn’t grab for them yet. I think the chest tube is to painful for him to reach.
Did they even take different pictures? I don’t think they did! They all look the same to me. I think they just copied and pasted the pictures.
The surgery went well. By the time got to go back to recovery my little Superman was awake. He was ready to go home after he drank his apple juice. Now time to go home and rest.
Good afternoon everyone. My name is Jeff King and I have a son who was born with a rare chromosome disorder. I call it 3X15C. There is no real name for it. He is only one of about a hundred known cases worldwide. This is a triplication of Chromosome 15. For anyone who knows chromosome 15 duplications are common in children with autism. My son has a triplication of that chromosome, therefore, he has autism and was actually diagnosed as severely intellectually challenged. At the age of seven-years-old he began to have intractable epilepsy. He is now 12 and although he is on medication and has been fitted with the Vagus nerve stimulator, he continues to have severe seizures. My wife and I have just recently started a blog dedicated to him. It is about his journey and ours as well. We have titled it “The Real Superman.” because we truly believe he is not only super, but our hero! We are looking for parents, family members, friends of people with special needs and also Sped. Ed. Teachers and people who work with our children. It is our hope that the story that I am telling will not only encourage others, but also offer inspiration and hope. Please come check it out and join our blog page and feel free to leave a comment or two. We are also looking for people to join us at Parents of Children with Disabilities. We only have 3 members and would love more. That is at https://plus.google.com/u/0/communities/107339921749944736766