Our adventures in AJ land have slowed but not stopped. One thing I hadn't mentioned in previous blogs about the young man was his eyes. About 5 days or so after we got home from the hospital I notices that his pupils were different sizes, like really different sizes. I tried to put it out of my mind and chalk it up to newborn eyes, like crossing etc. I asked the pediatrician about it a few days late (since we were making weekly visits at that point), he said we might want to have it check out by an ophthalmologist but didn't seem that concerned.
I knew deep down that it was not just a newborn thing, as much as I hoped it would be.
We made an appointment with a pediatric ophthalmologist and last week we took him in. The doctor checked him out and quickly determined that he has Congenital Horner's Syndrome. She stressed that if we are to google it we must make sure to put Congenital in the name because the syndrome can be acquired which then can mean scary thing!!
What is it you ask?
Basically the nerve that controls dilation of the eye runs from the brain down the spinal cord and back up to the eye. Since it is such a long route it is more likely to get damaged then other eye nerves. The congenital part means that this damage was caused during development or trauma at birth.
The good news?
All the syndrome means is that his one eye won't dilate as well as the other. There is a chance he will have two different colored eyes and there might be A-symmetry to his face. All things someone can definitely live with.
Do we have to do anything?
Yes and No. For his first year of life we have to take him to the ophthalmologist every 2 months to make sure that the eye does continue to dilate as much as it is now and that the brain doesn't get lazy and decided to just use the "good" eye. Then after that we will go to yearly appointments as long as there is no change.
And lastly there is a small, small chance this could have been caused by a neuroblastoma ( a tumor in a nerve). Both the pediatrician and the ophthalmologist don't believe this is the cause (for one it would or could have shown up in a prenatal ultrasound) but they feel we should test for one just in case. So we are collecting a urine sample to look for tumor markers and the pediatrician is ordering an ultrasound of the abdomen.
In other news on AJ, he had his 2 month appointment today. He weighs 10lbs 15oz and is 21inch long. This puts him just under the 10% for height and 20% for weight. The doctor was very happy with his motor control!
And lastly we have turned the baby over to his tummy to sleep and he now sleeps in 4hr blocks at night (he was doing 1.5-2hr). Wohoo!!!
All in all the boy is doing good in the big scheme his little eye thing is nothing but we are so happy we had it looked at! If all it is looks we can handle a couple extra ophthalmologist appointments!
Posts
