a fast catch up from 12 to now

After that first visit to the hospital in Omaha Childrens really didn't find out a whole lot, they wanted him to continue therapy.  They didn't think they saw any aspiration but hard to tell when not swallowing enough.  Had to wait awhile on a lot of blood tests and as the moment they couldnt find anything genetically wrong.  The only answer they could give is it is a mystery we will keep working on it.  We do know he has an acid problem though, so will try to fix that.  Through out the next while, there was another 2 to 3 swallow tests ordered.  Which still nothing could really be saw.  He has had 3 to 4 UGI's which could really see nothing other than he does have a twisted trachea, but they don't think that is affecting his eating and he will outgrow it.  So, we hope.  He had a another MRI done, this time on brain and back.  Didn't see anything of real concern.  They just made little  mental notes.  He had a scope done w/ biopisies done his esophagus, other than acid, they saw a little abnormality that cant think of at moment, but they didnt see concern w/ it at moment, unless gets worse as he gets older.  So, they made another note.  Then he had to have a test done that sends a thing from his nose to stomach to test the amount of acid in 24 hrs.  He had more xrays done of back, stomach, and chest.  More blood drawn.  There might be some things have forgoten.  He in this time, spent around two to three weeks or so in the hospital all together for over night stays.  But lots of up and back trips.  Omaha childrens Hospital has become our home away from home.  So tired of seeing that road.  Just want answers and to figure out why hes not able to swallow. He will put stuff in mouth, he just cant swallow.  Then he chokes, gages and then throws up.  Ohh also in this time period he had a NG tube which was just horrible, none stop pain and throwing up for him.  He then got the G button and fundo done.  Which the fundo didn't help on acid still throws up alot.  They been messing around with his meds alot.  Taking away, adding, giving back, just a whirlwind.  Lets just say in most of this time, over half he is sick, or he is in pain and throwing up and just laying there in realllly bad pain and afraid to move.  Its been pretty bad and hard on him and us.  Its hard to watch your kid in pain and you are trying everything you can think of to help him.  Its also hard b/c  some people think he is "sick" when he throws up and he's not. that is, his daily living right now.  Makes it hard going places, cause people dont want to see that or deal w/ that.  Hard to impossible to find people to watch him, specially if over an hr or so b/c of his needs, b/w feeds, meds, throwing up, they just cant handle it.  What people see on the outside, like going to walmart for a fast trip or church, ect...  Is for his good hr, we have learned and still learning how to time his feeds, so he wont throw up at church, which still happens now and then.  We have to schedule life around it sometimes, or schedule him around life.  Plus, like I said having to go to Omaha all the time, and not getting answers just tests after test, specialists after specialists.  He has seen GI drs, Pulmonary Drs. Genetic, nero, ENT, peds, all therapies, social workers, phycology people, nurses, dieaticians, you name it it seems like he has seen them.  I am sure I have forgot stuff, but this gives a little insight to what has been going on.