So, Superman hasn’t been feeling well. He slept through Christmas eve and most of Christmas day. He did wake up for a little while and open a few presents. Superman says thank you for the gifts. Send prayers and positive thoughts for healing. My present for him still hasn’t arrived yet. I got him a go talk 4 hopefully it gets here soon.
Superman didn’t go trick or treating. He did have some fun at home though. His sister took some snapchat pictures of him. His brother carved a pumpkin in the Superman emblem. So, I can say he had better Halloween than last year he is not in the hospital.
My Superman is growing up up to fast. I can’t believe how much he has changed. He is so handsome.
Some cute pictures of Superman and his niece Delilah! She loves her uncle Dylan. If you ask her who uncle Dylan is she looks right at him.
Dylan is not feeling good today because we had to replace the ng tube over the weekend. Everytime we have to put the tube back in Superman ends up sick. He still has been refusing to cough. If we could get him to do that we probably wouldn’t have this problem everytime we replace th ng tube. Please keep him in your prayers and positive thoughts. Thank you in advance. He was resting last night with his niece Delilah. It was so adorable.
So the results showed that he was silently aspirating each time he swallows. We was told he could only have a half a cup of purees twice a day now. They also went back up on the ng feeds again. The biggest thing is they are always trying to push a g- tube for feeding. I want my son to be able to eat again. He loves to eat again he loves to eat. He is a cheeseburger and pizza guy. He is so sad not being able to do that anymore. He has been working really hard in his therapy’s. My first question was how is he suppose to gain his muscle strength in his throat if he is not using those muscles. They proceeded to tell me they have excercises for that and you can an appointment with me for that. Just show me the exercises and I can do them at home because you should of did that while he was inpatient at Kennedy kreiger. He shouldn’t be like this in the first place because of seizures.
Dylan got haircut last week. He always look so much older afterwards. Superman is having a wonderful week so far. Remember his appointment is Friday so please continue to pray and send positive thoughts for a good outcome.