Just checking to see how Sam is doing?

Thanks for asking. So far so good! He has not vomited in a month now! He seem so much more comfortable and even more playful and alert--it is amazing what can happen when you get proper nutrition! So far I have not seen any bad side effects from the fundo. I am still trying to advance his g-tube feedings. We are going slow. right now he gets a bolus 4x a day and gets a continuous feed over night. The goal is to get him to 5 bolus feeds a day, I am hopeful that we will be ther by the weekend. I am just gradually increasing the amout of his bolus during the day until we get to his goal.

the only issue we are having is that he has trouble controling his secretions. He has decreased central tone--poor neck control, so He does not swallow his secretions effectively. We started a medication to help decrease the amount of secretions which is helping. I just hope that as he grows and gets stronger the swallow will get more effective. I am trying to get an OT to work with him, hopefully we will start next week.

Any suggestions on stimulating him orally while being tube fed??? He can't take anything by mouth right now and he will not take a passy--and my 2 year old won't give his up!!!!!

I am so glad we decided on the surgery--it has only been 3 weeks, and I allready see improvement! thanks for all your support.

That is so wonderful, we had a good outcome with ours too, he still has some issues but nothing compared and he is healthy and developing and no other isllnesses like he was having from the reflux. I am glad things are going so well for Sam too! That is awesome, too many people with good outcomes disappear and all most hear are bad so we need to hang out and let others know that it does work for the good too!

I cant help you with the feed parts, we didn't need a tube.... Thanks for the update!

Any suggestions on stimulating him orally while being tube fed??? He can't take anything by mouth right now and he will not take a passy--and my 2 year old won't give his up!!!!!

Is Sam is not allowed to try foods orally right now, or is it that he doesn't want them? I suppose that, regardless of the answer, you may want to see an ST for suggestions. Ours gave Daniel a squiggly pen (without the tip) that he sticks in his mouth for oral stimulation. He also has this rattle thing that vibrates when he chews on it. Those books with plastic textured corners are also good for them to chew on. Of course, in our situation, these things were supposed to get Daniel ready to eat. We'd have oral play, then go to the table.

Oh yeah, I'm glad Sam's doing so well with his fundo!

Sam can't have anything by mouth now because he was aspirating. He is behind developmentally, but he has been trying to get things to his mouth more since he is not eating that way. He also discovered his thumb which I am happy about. Hopefuly he will keep progressing so we can try to feed by mouth soon. I assume that we will start with baby food when he is ready since he will be getting his formula via tube. I still have a lot of questions for the doctors, but I am trying to take it one step at a time.