Cysti what?!

We were confused when a renal doctor entered Landon's room. "GI consulted us because of a urinalysis that was done..." We learned later that renal almost never is consulted when a kiddo is diagnosed as failure to thrive (this diagnosis was a whole other pill for me to swallow, by the way). There are a million reasons why a child is diagnosed as FTT and the kidneys usually have nothing to do with it. We were then told that Landon has what is called Fanconi Syndrome. This means that certain substances that are usually absorbed through the bloodstream are passed through the urine. This is why Landon was not growing. He was missing out on getting a lot of those important substances. We learned that with supplements, for his life time, this issue could be addressed. Then we learned that FS does not usually stand on it's own. It is usually an indicator of another kidney disorder. The one that made sense was Cystinosis. He was a poster child for Cystinosis. The biggest indicator, aside from the FS already diagnosed, was our son's beautiful blue eyes, blond hair and fair complexion. It was unbelievable! Our families have no history of kidney problems, poor growth and most likely both parents are carriers.. Yeah right? What are the odds?! Well, on June 13, 2010 our beautiful blond hair, blue eyed little boy was diagnosed with Cystinosis.
Just as a side note, Landon was also diagnosed with severe gastric emptying which means that his stomach takes too long to empty it's contents. It was functioning at a 2 percent and should have been at 50 percent. This probably occurred because of malnourishment. And guess what, our little boy is already beginning to take food by mouth better despite recording all of the calories he needs from the feeding tube.