We had a good appointment today. It was much easier than the last one - thankfully. Daniel did really well and I felt at peace too. Thank you for praying!
We arrived after lunch and spent a few minutes at the "art cart" doing dot paints before being called back. The doctor did a variety of vision tests. One of them was for colorblindness. Daniel is colorblind (which I knew), but I had not seen the eyes tested independently for this which apparently can be another issue with the optic nerves.
He was dilated and we went back to the waiting area. We read books, played with toys, did another picture and then were called back again. More examination. I could hear her commenting on his optic nerves. They apparently look very unusual still. She showed me a picture of them the last time and it is clear that something is not quite right.
Short version - Daniel has Optic Nerve Drusen. This is calcification on the optic nerves. This puts pressure on the nerves which is how it was detected. In children, this is typically not a problem and there is nothing that can be done. We won't need to return to see this specialist, but will continue being seen by his pediatric opthamologist.
Long version - Well, you can click on this link - Optic Nerve Drusen - if you want to read more about it. There is currently nothing that can be done for this, though the doctor did say that she thought there might be a cure by the time Daniel is an adult. I'm trying to be cheered by that, but honestly am not there yet.
He faces the risk of loss of vision in adulthood. The doctor said that is was similar to how a loss of blood flow can affect the heart and lead to a stroke. The loss of flow to the eye through the optic nerve can lead to damage there. There are some risk factors (such as Drusen) that can not be eliminated, but that there are other things that he can do to try to help avoid this fate. Again, similar to what you would do for your heart - eat well, keep cholesterol low, keep blood pressure low, etc. I remember during some of this discussion thinking, I didn't need to know all of this about the heart, but then she said it was the same for his eyes.
So, here we are. It is just a wait and see game. I know that I'll try to put it out of my mind. That is how I tend to deal with things. I'm trying not to fret or be sad about what *may* lie ahead for our little boy. The thought of losing vision is just a hard one. I know it's not definite, but I hate that it is even a possibility.
I'm wondering now if I need to start back a medical notebook for my family. Something listing all of the various issues each are facing. I kept this well for Eliana and now have a notebook for Joshua. I'd love to hear what any of you have done if you are doing this for your family.
I'm exhausted - physically and mentally right now. I think things will be better after a good night's sleep. I need time to pray and think about this and just hand it over to God. Worrying will do no good. In some ways, it would have been easier not to have even known any of this. (How is that for wanting to put your head in the sand?!) I wonder if there is a lesson to be learned. Maybe just another reminder to cherish each day, each moment with my children. Live fully and with much energy. Live without regrets. Love completely and with abandon. Yes, those are good lessons and good reminders.
I'm thankful for our precious little boy and the lessons he teaches me daily. He stretches me and blesses me. I love you Daniel!
A Rally Cry
1 hour ago