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.
thetruesuperman 
I would fight their decision, Dylan also has an unsafe swallow, we are allowed to still feed him on a soft diet, like mash, veg puréed meat, but only allowed sips of water, no milk. He hasn’t had a chest infection for years now, a lot the meds caused the reflux and I also believe it got into his lung. We use baclfen which has really improved this. If you do not use it you lose it. I would another test done but making sure he has had no seizure.
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