Feeding clinic appointment!

This guy has an appointment tomorrow at the feeding clinic at Kennedy kreiger! I hope they give us some good news about the nasal gastric tube and his feedings. The news I, wish for is that he doesn’t have to have it anymore because it has become a pain in the butt. Especially when he pulls it out, then it takes me awhile to get it back in. He does everything he can to hinder it from going back in. He will bite it, he won’t swollow it and he thinks it funny the whole time. Another reason ,I don’t like it is because he always ends up sick for a couple a days.

Thanks!🦸‍♂️

Superman says thank you for all the get well, Birthday, st. Patrick’s day cards! Tuesday he starts at his new physical therapy center, he will be doing aquatics. I, think he will enjoy that because he has always enjoyed the water.

Uncle Dylan!

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.

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.

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 is bad!

Superman decided he didn’t like the tube down his nose anymore so he removed it. He is getting a break from it right now, but at five it has to be replaced for for his feeding. I hope it goes well, because he he getting back to his bad self again. I can say one thing, I’m proud of how hard he is working in therapy. Please keep the prayers and positive thoughts coming.