It has been a long, difficult, and exhausting past 24 hours. It all started last week, when mommy noticed that my head was growing really well. She called the doctor to see if this is normal growth, or a sign of danger, but it wasn't so drastic that we had to worry at that point. That same day, I started a simple cold... nothing out of the ordinary... until last night. Mid-evening yesterday, I began to get a sick tummy and was throwing up. After that started, mommy noticed that my eyes looked funny and my pupils were not the same size. She already knew from research that this could be related to a neurological dysfunction, and that got both her and daddy a little worried. My tummy continued to make me sick, and one of the worst complications of NCM came to their minds -- hydrocephalus (fluid on the brain). This is one symptom of NCM that mommy and daddy are on constant watch for, so they are very familiar with the indications, and these were three big ones.
My auntie came over to stay with big sis, and we rushed off to the children's hospital. One good thing is that they get you in right away when it's something so concerning. We saw several nurses, and finally the doctor came in. It was hard to tell what she thought, but she wouldn't let mommy feed me in case it turned out that I needed emergency surgery. That certainly didn't make anyone feel better.
An hour or so after getting there, I got my first (and hopefully last) CT scan. Dad took this picture of me going in, and I swear I was a better sport than it looks like! It only took a few minutes and it wasn't as scary as it sounds.
The Lord was watching over me, because the CT was normal, and I do not have hydrocephalus. What a relief for everyone!
Still, however, my pupils continued to change and fluctuate from symmetrical to unequal. Doctor after doctor came in to check me out, and no one really had an answer for us. The ER contacted the on-call neurologist, and the opinion we were left with was that I probably have a viral infection causing the sick tummy and funky eyes. Mom and dad didn't like that answer so much, but that's what they stuck with.
This morning, mommy called and got me an emergency appointment with my own neurologist. And before we got there, she spoke with my pediatrician and my dermatologist. Interestingly, all three of them agreed with the hospital -- it's likely a viral infection. That seems a bit strange to us, but if so many medical professionals agree, it gives us the littlest bit of relief. Mom and dad are supposed to keep an eye on me for the next week, and hopefully it will all go away.
So, we are very thankful that this doesn't seem to be a complication of my NCM. However, needless to say, we will continue to hope and pray for this to correct itself, and quickly. We would certainly appreciate anyone joining us in this effort.