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.
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.
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.
Superman says happy new year to all his fans and may you all have a blessed new year. He has been doing pretty good the past few days. We will probably be heading to rehab within the next week or so. Superman is going to Kennedy kreiger for rehab. I only plan on staying for 2 weeks that should give them plenty of time to do what they need to get him back to himself. Please continue pray and send positive thoughts and thanks for all the prayers!
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.