It was a very quiet day for us, especially considering the past few days of going here and there and testing this and that. This morning they talked about sending us home with the intent to follow up in outpatient clinics. It's not like we are that much ahead of where we were when we first came in. Yes, the seizures are appear controlled (except I fear they are going to rear their ugly head again soon with some of the eye movements I've been seeing). Other than that improvement, we are on 3 MORE meds than when we came in and STILL vomiting. I don't know what to think of it all. I know they are hopeful that the genetic tests will shed some light on everything, and I know that we can't live in the hospital forever, but it doesn't seem like they've got the whole picture of Maggie in mind here or really have it managed. The one point of contention we have is regarding this apparent UTI. Now follow me on this one... There was a trace amount of bacteria that grew on the culture and I was told we were treating it prophylactically (before it does get bad). But, they are attributing the vomiting to the UTI. Which the onset of the vomiting was 1 1/2 weeks prior to the culture. If there was even trace amounts when the throwing up started, it would be a flaming UTI now I would think. I realize that they want answers too, but that kind of seems like a stretch to me.
I just don't know what to think. I just need one doctor to believe that it could have something to do with the crap that we've been putting into our bodies. There is so much information out there that we simply ignore. To me, if genetics show gene mutations that doesn't convince me that anything was passed down generation after generation, but that all these toxins have unfortunately happened to affect both Shawn and me, and possibly a generation up. Gene mutations surely are not a part of God's original design. We won't know anything on those for a while. One that they are testing for has only 200 cases throughout the world. Mystery Maggie is definitely rare, and that's not just because who she has for a momma and daddy.
During my research, I came across a break through idea. Aside from her meds being toxins in and of themselves, they could contain gluten or something else that she is reactive to. More research to be done in that area.
That's all for today. So much for this being a short post like I thought.