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.
This guy has an appointment tomorrow at the feeding clinic at Kennedy kreiger! I hope they give us some good news about the nasal gastric tube and his feedings. The news I, wish for is that he doesn’t have to have it anymore because it has become a pain in the butt. Especially when he pulls it out, then it takes me awhile to get it back in. He does everything he can to hinder it from going back in. He will bite it, he won’t swollow it and he thinks it funny the whole time. Another reason ,I don’t like it is because he always ends up sick for a couple a days.
Superman says thank you for all the get well, Birthday, st. Patrick’s day cards! Tuesday he starts at his new physical therapy center, he will be doing aquatics. I, think he will enjoy that because he has always enjoyed the water.
Dylan is starting to feel better so, he was snuggling with his niece last night. He rolled over closer to her. The cat also had to get in one of the pictures too. We finally got air mattress from my moms house. Thanks so much for letting us use it sis. It is better then trying to take Dylan upstairs ever night. He still refuses to do his physical therapy. He has an appointment at cypress creek Saturday, hopefully he does work then.
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 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.
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.
Superman has been doing awesome in therapy. He has been do well in his OP therapy, I think this is favorite therapy, because he gets to eat. They have been taking it slow with feeding. He has been getting a couple ounces a day of yogurt, applesauce, and pudding. In PT he has been working different things, like arm strength, walking and crawling. He is doing okay with this. He struggles with this part though but he giving his all. I am so proud of how far he has come since he has been here. The only problem is his sleeping pattern. It seems like every two days he will not sleep all night and he will stay up for 2 days and sleep all day the next day. When he does this he has an increase in his seizures, the only good thing is they don’t last longer then 20-45 seconds.Please continue to pray for my Superman. I would like to say thank you for your prayers and positive thoughts. Superman loves you all.
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.
thetruesuperman 