Hi, I hadn't even realized you had replied. Or I guess you replied just after I checked last time???
My grandson, Isaac,, I visit them about twice a year, and they come up here maybe once a year, so not being with him, or them, day to day, I don't see all the issues. I have to kick myself to not think "Oh Isaac is easy, I don't have any problems caring for him, etc.," when I don't have to live with him 24/7 for the past 3 1/2 years!!!!
I know they have feeding issues with him. If a piece of bread was in front of him he would just stuff the whole thing in his mouth and try to swallow it, wouldn't chew. They were working on his feeding with his special education teacher when I visited in March.
I know they were working with food that had more consistency, stuff he would have to chew like crackers, not just oatmeal or mashed up soft food. I know they expressed their frustration about feeding him. Takes a lot of time out of a busy day to have to feed him 3 times a day!!!! I try to appreciate what they are going through.
I feel so frustrated for you that the feeding clinic can't come up with strategies!!!!!! I heard once that nurses are natural problem solvers. I can't believe there isn't a maybe not perfect wonderful, fix everything solution, but there must be some ideas, strategies!!!!
So yes feeding was, is, a big issue last time I was visiting. But I guess, think, it will eventually resolve itself, like a abled child might take 6 months to go from being fed to feeding their selves, a disabled child might take ????? 2 - 3 years! Sounds awful put that way, but one thing about being a grandmother, somehow you really see to long range, future, down the road outlook with children. It doesn't bother me to say, think, by the time he is 6 years old he will have this feeding issue resolved.
I joked so many times with my abled grand son's mom (the one who still has accidents!) when she expressed the usual parent concerns, "Oh as long as he stops doing that by the time he goes to college he'll be fine."
My biggest concerns are intellectual. Will he talk, understand, communicate? But when Isaac's mom called she said with pride, "I told him to go get his ducky book for us to read and he got it and brought it to me." He babbles but like a 1 - 2 year old does, he might say baba, mama, dada, but not always consistently connecting the sounds/words to bubbles or mom or dad.
You never told me if the MRI showed any definite cause for your sons disability?
My daughter isn't the best at replying to my e-mails but I will e-mail her now for any feeding ideas they learned.