Work of an angel...

07:25: My eyes pop open to the highly anticipated sound of my alarm clock. In less than three hours we are going to be at Children's Mercy and on our way to answers. Chris and I get ready for the journey into downtown KC. We wait as long as possible before we wake the sleeping princess. We quietly dress her, feed her, and prep her for even more probing eyes. When Natalie realizes that we are off for yet another Dr. appointment she tries to negotiate her way out of it. "I don't want to go to the Dr., take Noah instead."

10:30: We meet with the Pediatric Neurosurgeon. He asks a stream of simple question regarding symptoms and history. We then make our way into another room to review the images of her MRI. We sit and Dr. Igbase explains that Natalie has a syrinx in her spinal cord (a fluid filled cyst). These are not all that rare but there is something else that has also caught the specialist's attention. Natalie not only has a syrinx in her spinal cord, she has a nodule. A tiny white spot on the screen has sparked his highly trained eye into wanting additional tests. This nodule may need to come out, it will need biopsy, and may indicate an answer- Von Hippel-Lindau Syndrome. This could require testing the boys for the genetic disorder. This road will be crossed once we get an official diagnosis, but for now I prep.

Dr. Igbase wants a high resolution MRI in 2 weeks to assess whether these areas are growing. The MRI will take 3 hours and require another round of deep sedation with an anesthesiologist. If this is in fact a nodule as it appears on the initial MRI it may require surgery to remove. This is very high risk. Loss of physical function and spinal cord trauma being the main concern. If this is the case we will pursue a second opinion to confirm that surgery is the only option, and that she has the latest research, techniques, and most highly trained doctors on her team. I have a good feeling with Dr. Igbase and would prefer to have the surgery in KC, but will pursue all the options before allowing anyone to operate on Natalie's spinal cord.

There was a bit of good news in all of this. Whatever this is we caught it very early. Dr. Igbase emphasized how good it is that we have caught this VERY EARLY. Natalie is not displaying any symptoms of spinal cord compression or deterioration. Unless Natalie starts to show symptoms of spinal cord compression we will continue to try to live our lives as normally as possible...if that's possible.

The initial lump noticed on her spine has turned out to be nothing. Perhaps it was a red flag God gave in order to get Natalie the medical attention she needs in order to remain safe. For that I am grateful. I can't help but feel Natalie has a guardian angel with her keeping her safe and raising concern when necessary.