This is a sweatshirt my older son Dacota designed for his little brother Dylan also known as Superman. I think he did a wonderful job on it. He loves his brother so much. Superman has been doing pretty good lately. He is still on the ng tube and going to physical therapy ever other week but he still is not walking on his own.
Some cute pictures of Superman and his niece Delilah! Dylan really doesn’t like his picture taken often so, you have to do it when he is in a good mood or feeling good. Which is not that often here lately. Please him in your prayers. Thanks!
Superman finally got his stair lift installed today. They had me test it out to make it works properly. It goes up pretty quickly. This will help out a great deal with getting him to the shower. I’m not sure how he will feel about it though.
So we finally got a hospital bed for Dylan! I had to put it in my living room. So, Superman is still sleeping downstairs still but he is more comfortable now. A thank you to wonderful couple who donated it to us. He also got a nice little gift in the mail from someone special. He says thank you so much. Superman has not been feeling to good lately. I am asking for healing prayers for Superman. Thanks in advance.
This, guy right here is still not walking yet. This recovery from necrotizing pneumonia is taking way to long. I thought he would be walking by now. It has been six months now altogether. Therapy is going okay but it takes 20 minutes for him to get warmed up. I am so mad at the doctors at John Hopkins for taking so long to diagnose him.
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.
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.
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.
We are finally at rehab! He is not adjusting to it well. He will not go to sleep. He has had 10mg of melatonin and is still not asleep. They have so many rules here it is not funny. No heating pad and no bags in the fridge, you have to label all your stuff. The one good thing is that he has his own room for now. He has been having a bunch of seizures since we have been here. I hope this rehab stay goes by quick because I am starting to get tired. I just want too be home now. It has been to long. Please continue to pray for my Superman and send positive thoughts. Thanks for all the love.
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.