catch 22

Hello friends .
Sammy says Hello. He looks ,so good you would never guess how much he is going through.
We had recognized few more minor changes in Sammy's condition. He have been having difficulties to swallow liquids in the past week, although he is eating hard foods OK.
He has been more tired and tends to sleep more. Mom had to learned how to connect ,disconnect a TPN- IVs . Sammy has been getting fluids overnight through IVs,because he can't drink and we don't what to get to the point of dehydration we continue with solid foods even if it's just few bits-Sammy loves tasting flavors.Family has to make a decision on G-tube/feeding tube/.It's just too hard . Its catch 22. No mater which way you look at it -there is a risk its a surgery .
Our champ is still going to school. With help of teachers and Spacial Needs team he loves going to school. He is adapting to a new sensory program 'feel-touch'. Every time I tell Sammy ' get up ' you are going to school-he reacts to it.
That is all for today , Sammy and Mom.