Wednesday, May 7, 2014

I'm at WKRP in Cincinnati...

Hey ya'll!
I've written here before about how the ginger is sick. We spent several months last year in Vanderbilt Children's trying to stabilize him after what seemed like a terrible bought of GI troubles. First they thought it was just a stomach bug and then they thought celiac but he didn't react well to the gluten free diet, personally I think he probably has celiac but when they initially tried to feed him the gluten free diet his intestines were so irritated that he couldn't even absorb anything, no matter what it was. Anywho, he's been at home and getting better and better but we still need to get him all figured out.
Soooooooooo, we are off to Cincinnati Children's Hospital next Thursday. It's the best hospital in the nation for pediatric GI issues. I'm so excited to get him up there to those doctors! He's going to have his upper and lower GI scoped to see if there has been at least some healing in his gut. Pending the outcome of that they plan on trying to give him interic formula and a gluten free diet so we can eventually get him off his intravenous nutrition.  
The Ginger calls this his juice, it's his intravenous nutrition.

One of the Ginger's pumps, he uses two.

We'll spend about a week up there before coming home. I'm so hopeful that we will come back home with some answers. The most tiring part of all of this has been all of the negative test results. I can't even begin to tell you everything that this kid has been tested for. But, I can tell you that he doesn't have anything that they have tested him for, believe me I'm glad about that but still I want to know what's wrong with my Ginger Boo. He has even had a whole exome sequencing done, if you are interested to know what that is HERE is a link to the Baylor College of Medicine explanation of the procedure. I mean, who doesn't like reading medical research?? LOL! Just know that it's a big time genetic test that takes FOREVER to come back and it may not tell us anything at all. Yay.
OK well I am off to catch up on Bates Motel. Anyone else watch that show? It's my go to now that I'm waiting for the next season of The Walking Dead. If my phone and doorbell rang as much as Norma Bates' does I'd be crazy too.
 I'm going to try my best to keep blogging the whole time we are up there. We shall see if I actually have the time!