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.
Tag: blood
Haircut!
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.
Cards!!
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.
Follow up!
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.
Look who is finally home!
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 has been working hard!
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.
Rehab finally!
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.
