Sleep has been allusive at the Mayo Clinic. The kids have slept remarkable well, wrapped in dreams and fluffy blankets. I lay awake at night with thoughts I never wanted running rampant through my mind, bouncing off my skull, echoing through my bones.
So 4:30 comes early, and 6:00am shuttles seem even earlier. It’s hard to find coherence at a neuro-ophthalmologist at 7:00am. Panic settled in on Savannah when the chair began to tilt back. It was only a dilation. A dilation and panic. Luckily, the technician who came to help restrain her was in his twenty’s. She struggled and tossed her head, until she saw him. She took another look at him, looked at me and smiled her biggest “he’s cute” smile. There was still struggling when the drops came, but it was subdued by comparison. Cute guys are always a good idea.
The problem came after the drops were administered. In Savannah’s mind, she was done. She had done it. What she couldn’t comprehend was that it takes time for eyes to dilate. The melt down was massive. I knew it’d be worse once the dilation hit and her vision blurred. It’s wonderful to be wrong. As soon as her vision blurred, the giggles began, and there they stayed until it was time for the eye exam. You’d think it’d be easy. You’d think it’d be possible. You wouldn’t be thinking of Savannah. Two doctors, two grandparents, one mom and forty-five minutes later the doctors conceded that there was no possibility of looking in her eyes. The next course of action would be sedation and that requires the use of an OR. We would be called when it was scheduled.
So why the insistence to dilate? Monday they discovered that Savannah’s eyes cannot track up. Victims of NPC cannot track up. There are other neuro-degenerate disorders that can be seen in the eyes, but again, NPC is the highest probability.
Joseph and I left the once again giggling dilated Savannah in the hands of incredible grandparents and went to the endocrinologist as a Checker. A Checker is a patient that sits in the waiting room and hopes for a cancellation to fill. Luckily, we were called after twenty-five minutes. We saw two endocrinologists. They charted Joseph’s growth, reviewed his wrist x-ray and blood work (very quick turn around), checked for signs of early puberty and asked loads of questions. Pre-puberty, a boy should grow two inches annually. While Joseph is well-below his expected height, with the exception of one year, he has been growing two inches every year. Hormones tested normal. Wrist x-ray showed growth. Height is on par for reaching two inches by this December.
So what did it all mean? If Joseph stops reaching two inches annually or if he doesn’t reach five inches after puberty hits (boys in puberty grow five inches a year!), then it’s time to revisit an endocrinologist. His height must be kept under an ever watchful eye, but as for now there are no signs of growth retardation. Joseph is fearfully and wonderfully and shortly made.
I asked him when we left if he understood what the doctors had said. Although he knew we were discussing his height, I’d been very careful not to worry him. He has always been overly sensitive about his height. “No,” he said. “Not really.”
“The doctors said your height is good. You may be short, but its good. Your height is perfect. You are the height you are meant to be. Short and perfect. So don’t let anyone tell you otherwise.” And then we celebrated with a cinnamon roll. A toast to two perfectly short people.
That afternoon came the neurological ophthalmologists’ call. No one was available until July 24th. I thought I would cry at the impossibility. There was no feasible nor economical way to coordinate it. Finally, someone in the background came to the phone. She was with pediatric neuro-ophthalmology. There was an opening Friday afternoon. They would be attempting the same failed eye dilation, but were used to children with neurological delays. “And we have had patients bigger than your daughter. We can get it.” The choices were a definite successful dilation on July 24th or a traumatic hopeful success this Friday.
We go back Friday.