Luke struggles with many things. He has a lot of sensory issues. Many of those we simply cannot understand. The feeding tube was installed a few months ago as a result of his refusal to eat. We believe that one of the reasons that he stopped eating was a sensory issue with using his fingers. We were able to get his to eat only if we fed him like a baby. He would not do it on his own.
Now after having the feeding tube he is getting stronger since we are able to get the correct number of calories in him every day. The struggle now (besides just scheduling and maintaining the tube) is to get Luke to eat and drink a little bit every day so he does not lose the muscle strength and coordination in his throat to do so. The foods and drinks that he intakes daily now by mouth are really just "pleasure foods". Their main purpose is to keep his throat muscles in good shape.
Overall we are seeing some slow progress with his weight and cognitive responses. Mamakirbs is very tired keeping up with all of it, but I know she would do this for any of her kids anytime.
I know as parents like me you will never give up on your son. This is really tiring and needs a lot of sacrifices... Believe me, you are included in my prayers... 2x a week I am reading your article to be updated...
Luke struggles with many things. He has a lot of sensory issues. Many of those we simply cannot understand. The feeding tube was installed a few months ago as a result of his refusal to eat. We believe that one of the reasons that he stopped eating was a sensory issue with using his fingers. We were able to get his to eat only if we fed him like a baby. He would not do it on his own.
Now after having the feeding tube he is getting stronger since we are able to get the correct number of calories in him every day. The struggle now (besides just scheduling and maintaining the tube) is to get Luke to eat and drink a little bit every day so he does not lose the muscle strength and coordination in his throat to do so. The foods and drinks that he intakes daily now by mouth are really just "pleasure foods". Their main purpose is to keep his throat muscles in good shape.
Overall we are seeing some slow progress with his weight and cognitive responses. Mamakirbs is very tired keeping up with all of it, but I know she would do this for any of her kids anytime.
Thank you for caring.
I know as parents like me you will never give up on your son. This is really tiring and needs a lot of sacrifices... Believe me, you are included in my prayers... 2x a week I am reading your article to be updated...