So Isaiah has had a pretty crummy week. He usually only lasts about 3-4 days max in a spell and then he is out of it and back to his happy self. Well, he was happy for about a half a day this weekend and back to retching again today. What is going on. This poor kid. It just seems to be getting worse. Then there is Avery, this j tube was supposed to be helping his vomitting. Well here we go again, another intervention gone aray. He is still vomitting and still not gaining at all. These boys just have the worse digestion issues. Just the most basic things in life like getting nutrition is extremely difficult for them. The things that we take for granted in life.

We will be seeing a case management team on Monday at Children's with both boys and GI. Hopefully we can get alot of things squared away. I say this everytime I go to these appointment then I leave with more questions and no answers. I can be so depressing. But this case management team is supposed to help with looking at the boys as a whole and coordinating their care and organizing the millions of appointments they have. With GI, I am going to talk to them about an experimental drug that was taken off of the market b/c of the side effects and is sort of a last resort for the boys in terms of meds. They mentioned this drug before. It is certainly worth a try. It is all about quality of life for these guys. I will do anything for my boys to have happiness and feel good.