The Upside of Down: Nystagmus, a beauitful word!

Who would've ever thought the word "nystagmus" could sound so sweet to my ears??? Yesterday was the much anticipated appointment with the pediatric neuro-opthamologist down in Miami. We were getting a second opinion from her on the opsoclonus diagnosis. Our neurologist had set us up with the appointment before we subjected Carson to any more intense testing and possibly chemo. I feel like my life has been on hold for the past few months just waiting to figure out what is going on and how we are going to treat it. I wouldn't plan anything for fear that we'd be in the middle of some intensive treatment for this. Well, praise the lord, because the neuro-opthamlogist (Dr. Capo) said right away after checking out his eyes that it was NOT opsoclonus and it was just a nystagmus!! I couldn't believe my ears! I had gotten so used to just expecting the worst outcome that I could not let myself think that it was not opsoclonus. Bert kept saying he thought it was just a nystagmus but we had been through so much lately where things did not turn out the way we expected that why would this be any different. Thank the good lord, it was!!!
It appears a nystagmus is common in children with Down Syndrome so that seems to be the cause of it. There is no treatment for it at this time, but it is so slight it's not of a huge concern. There is a test you can perform that requires him to be put under anesthesia but she did not think that was necessary, at least not at this time. Especially since there is no treatment for it and it is related to Down Syndrome, why put Carson through more testing that is unnecessary. We have to see her for a follow-up appointment down in Miami in 6 months and then after that he can be seen at any of the Bascom Palmer locations. He also has a slight astigmatism which may require glasses in the future (how cute would he be in little, tiny glasses!!), but it is nothing to worry about right now.
I really can't even begin to explain the massive weight that began to lift off of my shoulders the more the news sank in on our drive home. There was so much riding on her diagnosis and it was the best possible outcome we could have ever asked for! Now maybe Carson can get back to just being a little boy and not a professional patient. All of these appointments and worrying had us all so consumed that I felt like we were barely getting in time to work on all of his therapy at home, much less get time to just play! I can't begin to thank everyone for all of their thoughts and prayers throughout this ordeal. They have obviously worked and we appreciate them more than you will ever know!! I'm not sure what made the first pediatric ophthalmologist we saw diagnose Carson with opsoclonus. I'm so thankful that all the doctor's we saw after that felt like something wasn't right and wanted that second opinion. If not for that, Carson might be in the middle of chemotherapy right now for no reason!! We have been so blessed to have doctors that care about Carson so much and go the extra mile and I will not let our one negative experience with the first ophthalmologist tarnish that.
Now hopefully my blog posts can just be about our daily life and not medical scares!! Thanks again and God Bless :)