Superman had a good time at his cousin’s 13th birthday party today. He got to enjoy chocolate and vanilla ice cream today. He took a little nap for a little while. It was nice to see everyone. I hope the Birthday girl enjoyed her day. It will be a year since Dylan was hospitalized on coming up on Halloween. He, still isn’t back to his normal self but is continuing to improve slowly.
Superman had fun at the pumpkin patch! He helped pick out a pumpkin to carve. The only thing that wasn’t fun was all the bees everywhere. They had lots of fun stuff to do. Hayrides, a little haunted house, music. They also had a store you could buy fresh vegetables and pies. The pumpkin patch we went to was Webster”s farm.
Dylan had a good time at the family reunion. The reason why he had such a good is he got to eat some mashed potatoes and gravy. We sat at the table most of the time so we didn’t really get to talk to many people unless they came over to say hi. The reason for staying at the table is because he still has his ng tube so, I had to watch him like a hawk because of that. It was nice seeing everyone.
His doctor said he is doing much better today. He wants to see him back on Friday to see if he is still improving. So far he has been doing much better. Please continue to pray and send positive thoughts.
We took Dylan to the doctors this morning and it wasn’t good news. The doctor wanted to admit him to the hospital. He says he has bronchitis or pneumonia. But he gave him a breathing treatment in the office and his oxygen level came back up so he let us take him home. He is on an antibiotics, steroids and breathing treatments every 4 to 6 hours. He has to go back to the doctors tomorrow morning to be checked out again. Please continue to pray and send positive thoughts.
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.
These are pictures of Superman from his swallow study!
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.
Superman finally got his stair lift installed today. They had me test it out to make it works properly. It goes up pretty quickly. This will help out a great deal with getting him to the shower. I’m not sure how he will feel about it though.
This, guy right here is still not walking yet. This recovery from necrotizing pneumonia is taking way to long. I thought he would be walking by now. It has been six months now altogether. Therapy is going okay but it takes 20 minutes for him to get warmed up. I am so mad at the doctors at John Hopkins for taking so long to diagnose him.