3 Appointments 3 Updates

Cardio -- his heart is fine ---- what a HUGE relief!!!!! The cardio does believe that Zach had a sever seizure stopping him from breathing, I guess we will know more from the EEG tomorrow.

GI -- we are going to try to put baby food in his g-tube. If he still gets sick from it then we may be looking at something called EE (eosinophilic esophagitis) basically it is a sever food allergy where you are allergic to all proteins in food - he would be on Elecare (amino acid based formula the rest of his life - this is the same formula he has been on with his g-tube) Funny thing to me is that he has been the healthiest he has ever been since he started the Elecare.
If he doesn't get sick from the food in the tube then they think it might mean there is a hypersensitivity to his system - orally he may be getting overstimulated when he eats causing the rest of his body to be reacting to the over-stim. --- JOY no real answers, yet, we try for a week and see. After that it is more tests and biopsies.

Geneticists ---- well no real news there either ------ she says there is 100% something wrong with him but from a genetic stand point there is no 1 syndrome he falls under so we still have no name for it. He has multiple markers for a genetic problem. She said part of the problem with genetic testing is that you can take a child who obviously looks as something is wrong and you'll find something -- if you take a child who looks normal (albeit small, has many markers), has a ton of issues, you won't find anything - happens all the time. She thinks maybe a second opinion would be good as maybe they will see something she missed. For now we wait 1 year for a follow up with her and hope testing becomes more advanced.
We are seeing another geneticist next week, it will be interesting to hear his take on all of this. I hope he has some answers, Doug is thinking it will be more of the same "we know something is wrong but we can't tell you what it is because there is no one name"