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.
Found this yesterday when I was out shopping for Christmas. I just had to get it for Superman! He doesn’t seem to like to much but you can see that by looking at the pictures!
My Superman is growing up up to fast. I can’t believe how much he has changed. He is so handsome.
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.
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.
This guy right here has a swallow study coming up this month. Hopefully he doesn’t end with any respiratory problems between now and then. We was told if he does have any respiratory issues the appointment would be canceled. His study is on July 19. So please keep Superman in your prayers and positive thoughts that he stays healthy between now and his appointment. This will determine if the ng tube can be removed. Now all we have do is get him up on his feet and walking on his own.