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.
This handsome guy will be sixteen Monday. He has not been feeling to good lately, he has a sinus infection, cough and post nasal grip. So, he will not even be able to enjoy Birthday cake. I wish things would get better for him. He is still doing PT, OT, and speech but since he has not been feeling good he did not do any this week. He has an appointment with his neurologist next Thursday and a appointment with cypress creek physical therapy next Saturday because the in home therapy is not effective enough for him because they do not have the equipment needed.
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 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.
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.
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.
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.