So we finally got a hospital bed for Dylan! I had to put it in my living room. So, Superman is still sleeping downstairs still but he is more comfortable now. A thank you to wonderful couple who donated it to us. He also got a nice little gift in the mail from someone special. He says thank you so much. Superman has not been feeling to good lately. I am asking for healing prayers for Superman. Thanks in advance.
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 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 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.
They took him off the ventilator yesterday, it was hard to watch him at first because he was choking and gagging a lot. He is doing much better today. Physical therapy came today and had him sitting up on the side of the bed first time in 21 days, he was getting tired from it. So he is resting now. He did have a fever overnight. So far today he hasn’t had fever. His blood pressure was a little low overnight. Baby steps but he his headed in the right direction. The chest Xray shows some improvement on in his lungs, but he still has ways to go. He has been doing a lot of wheezing today. I have been suctioning him a lot today, it is bring a lot of the junk up from his chest. He was happy to see you balls today but he didn’t grab for them yet. I think the chest tube is to painful for him to reach.
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.