As I had mentioned in the last two posts, Avery had been struggling with lots of vomiting and meds. coming out of his draining bag. On Monday he had his j tube changed ( a routine visit). I certainly feel like mommy of the year, not... Turns out his j tube which should be deeper in his intestines, was actually sitting into his stomach. Somehow his tube migrated from his intestines up into his stomach. I was surprised bc this has never happened in the 4 yrs. had his tube. At the same time I felt sooo bad. I was convinced that his tube was not the issue. Avery's motility is so poor that anything in his stomach will just come back out. He cannot tolerate anything into his stomach. He was also miserable bc he was not absorbing any of his pain meds. :(. Poor kid. At least I know it's the first thing I should check when he starts these vomiting spells. Turns out he was backed up AGAIN with poop and gas. So the pressure kicked the tube into his stomach. This poop thing or lack there of is just very frustrating. It is such a new problem for him and yet there are very few options other than surgerical. We all know how I feel about that. We are trying one more thing and it is working " for now". We may have one more trick up our sleeve but if these all fail then there may not be another choice. As a result of all his vomiting, he has been showing increased respiratory problems. He has been requiring oxygen with his bipap due to more desats. We will have to see where he goes with this.

Also, lil man lost another tooth. He looks so cute. But it is concerning bc he is young and there are no permanent teeth in sight. He also has a few loose at the top. He is going to look so funny with all his teeth missing for awhile. I have to get him into the dentist to see if his adult teeth are coming in soon.

In the meantime, we are waiting to hear from Make A wish. A lot of things have to fall into place for us to go to Disney. My biggest concern is the plane ride for the boys ( mainly Isaiah). Since he cannot go in his wheelchair and his carseat is not allowed, we will have to see what is offered. Janessa already said she is "not sitting anywhere near him" bc she knows he will be a complete wild man. Looks like I'm gonna be needing lots of wine for the flight, lol. I will keep you posted as to what is decided.