Trio's New Diagonsis

So we had an appointment with a neurologist over by Dell's Children's (early) on Monday because his pedi had concerns about the "cafe au lait" spots on his body. She was even more concerned by the same ones on my body as well as the bumps I have.

I walk up early (because the appointment was at the ungodly hour of 8:00 am) and we go and wait. The appointment is with a Dr. Kerr but first we meet his medical student Crystal and she inspects him. A few minutes later Dr. Kerr comes in and they both look grave (although that could have been my paranoia).

Turns out they think he might have something called "neurofibromatosis" which is a genetic disorder of the nervous system that can cause tumors. That's a scary word when you're a parent; "tumor". Dr. Kerr said that given the appearance of those spots on both of us and the bumps on me (which I found out could be tumors which you can imagine gave me a happy) that we needed to do more studies to figure out if that is what this is.

I guess he saw the look on my face and did a quick math to figure that in with Trio's prior medical history because he made sure to tell me it wasn't life threatening and he made sure to put the word "benign" before the word "tumor" (although it didn't help much). But he said that the sooner we figure out if that is the problem the better off we can face it.

Looking at the website it doesn't seem like a horrible disease although there were some signs I saw that made me suspicious that I might have it (such as the delayed puberty and the tummy troubles). There are also scary words like "delay" in relation to milestones and learning but I am not concerned about that since I never really had the problem and although Trio doesn't talk he is bright in other aspects; for example he got a number puzzle for his birthday and two days he was able to put most of the numbers back in their proper place by himself. He even tried to turn the "9" to fit the "6" which I found bright.

Next week is the test so we're getting a whole skeletal X-ray and an MRI for which they have to sedate him so I'm gonna be spending most of Monday afternoon at the radiology place. I'll keep everyone posted it kinda sucks to add to his plate of the medical issues he already has but what are you gonna do? Just stay positive and look at the bright side that for the most part it seems pretty benign.

More to come.