Update on the Trey Man :)

Well unfortunately little man has taken a few steps backwards with his eating progress, I am sorry to report. Trey was on such a roll for awhile there. Nothing close to where we could remove the NG tube but significant progress with his willingness to eat.

For some reason the last week we have almost completely stopped eating again with the exception of peach sorbet. Trey will still drink small amounts of rice milk (no dairy or soy due to his allergies), juice and water. On the positive side he is tolerating his tube feedings (no vomiting, knock on wood) and we are about 0.5-1 ounce away from our goal we would like to reach each day.

So of course I go round and round contemplating is his recent protest to eating related to his increase in tolerating the volume of his tube feedings. Meaning is all the calories from the formula decreasing his appetite drive or is the increase in volume making his reflux worse. I feel like it is probably a combination of both. Trey also had episodes of gagging and vomiting earlier in the week with foods he was willing to eat. And once this happens he is usually totally done with that food.

We are trying to slow the rate down of how fast his formula infuses in to see if that will help the reflux. We can't increase the calories in his formula and try and lower the actual volume he gets because if you make the caloric intake too much you run the risk of diarrhea. And then you are in for a whole new set of problems.

Trey did have feeding therapy at Sacred Heart Children's Hospital in Spokane today. He didn't make any new progress at the session but the speech therapist came up with some new ideas as far as food goes to try. So we will give that a shot. Her conclusion also is that once we get the reflux under control (medical part) we can get Trey feeling safe with eating again (behavioral part).

So that is where we are at right now. As I find myself reaching my end point I am encouraged that surgery is approaching and I am hopeful that the change will be for the better. It is also comforting to know that even though Trey is struggling in this area he is having fun in other areas of his life...

Being Silly.

Trey loves pulling all the books off the shelf.


"OK mommy I will put them back"


Getting ready to test out his new crayons.


Sending out his emails.


Catching up on his reading.


Getting ready for school someday.



Just being the BEST little boy ever!!!