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.
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 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 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.
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.
Superman had a rough night. His blood pressure kept dropping down to 70/30 they had put him back on the norepinephrine to help with that. He is also on the c- pap instead of the nasal cannula. He has been resting most of the morning. Oh yeah that’s right it is Thanksgiving, Happy Thanksgiving everyone from Superman at John Hopkins. Please continue to pray for my Superman and thanks for all the prayers and positive thoughts.
So, Superman had another CT scan yesterday and it is showing improvement. We came in the hospital for his seizures and ended up with necrotizing pneumonia. Which took them 12 days to diagnose. It is going to take awhile for him to heal. We are already going to spend Thanksgiving in the hospital. He has not been comfortable for the past 2 days. I think he wants the breathing tube out his throat. It must be getting uncomfortable since he has had it in for 20 days now. He is my baby and is still in need of prayers and positive vibes.