x linked hydrocephalus newborn photography

L1 & The Pediatric Opthamologist: 16 Weeks Old (Exactly!)

Earlier today, Josh, Kara, Noah, and I loaded up and headed to the pediatric ophthalmologist for the second time in 4 months. First off, I’ll start by saying Kara behaved wonderfully & absolutely loved their play room. She couldn’t have been in a more perfect two-year-old seventh heaven!
As for Noah, we had his eyes dilated again and reevaluated from square one. Right now, my child is blind. However, he is not blind in the common practice of only seeing the black dark abyss of nothingness, so keep reading. The good news is that in his good eye, his optic nerve is full and completely in tact. It is excellent. The left eye’s optic nerve is also in tact, but slightly smaller than the right. It is good rather than excellent. The problem lies within his brain. I’m not sure that we were officially diagnosed per say, but it was mentioned that he may have CVI Cortical Vision Impairment in addition today the Cranial Nerve 3 Palsy.  The cranial nerve 3 palsy was diagnosed much this same way, kind of indirectly, which is partially my fault. So there is a chance he’s not old enough to be diagnosed or maybe he already is. I don’t know. He may never see. Or, with vision therapy and home therapy he may improve. I don’t know that either. But, here is what I do know.


My research on CVI begins now. Thats the first thing I know! And fortunately, God has blessed me long ago with an online friend who I met online and was fortunate enough to create a real life friendship with back when I lived in Raleigh. She is married to a blind man, and works for the blind school. I thought back then He put us in one another lives for a reason, and possibly part of that reason may be revealing itself now. Lori has been super helpful in the past 4 hours since we learned the news, and super supportive. I am so thankful for her.


Basically, Dr. Brown explained it to me like this. There is a TV and a cable box. The TV works. The cable box works. But the LED in the TV went out so we can’t see the picture. Another analogy. We have all the hardware. All the anatomy we need to see, Noah has. We are having a mishap in the software. Somewhere in Noah’s brain, there is a disconnect. With all of us, as we all already know… our eyes pick up data, like pixels on a computer screen. Lots and tons of individual giblets of information. Then, our brain takes these pixels and flips them right-side up so we can see a picture of what we are looking at. For whatever reason, Noah isn’t forming a picture from the bits of information his eyes are finding.
Now, after talking with my other L1 families… there are other L1 babies that are in this exact same boat. From their opinions, sensory activities are more important right now than me stuffing my head full of Braille. That’s harder to hear than the actual news. Sounds dumb, but I don’t care. If I had to learn Braille to “fix” the “problem,” I could click “buy” or “add to cart” and throw in some credit card numbers and “fix” the issue. That’s not the case. HOWEVER, like with Lori, there is a reason God gives you things in life that you don’t realize at the time. Long ago when I worked for the YMCA I taught special needs classes, and now I’m going to be teaching my son. I left the YMCA to nanny two absolutely adorable children that we went to visit last weekend, and so I’ve already researched and learned a LOT about sensory play and activities for children. I based our days around fun play and activities. So, I’ve done a lot of research on sensory play, and that makes me super stoked too! Thank you, Brooke, for letting me nanny your kids for two years! Oh! How they prepared me!
As for the surgery that we were/are possibly considering for his Cranial Nerve 3 Palsy is currently put on hold. In our doctor’s words, “that is the least of his problems at this point, and far down the road now with all of this going on now.” As a newborn and when he was examined at 7 weeks, this CVI thing wasn’t a concern or issue. He was too young to know a whole lot. Now that this CVI issue is of concern, it is much more “important” to address than the surgery.

So again, from here….. I research. And research and research. Dr. Brown is a-okay with second opinions and encourages them. We will be starting vision therapy soon; I am to contact the CDSA/Early Intervention tomorrow and set up consultation to get that initiated and going. We appreciate all of the thoughts and prayers all of you have sent us, and am greatful for your words of encouragement and love. Thank you!

Noah’s Story
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race
Steps Toward Home
Noah’s First Week Home
The Therapy Journey has Begun
7 Weeks Alive
Noah is Enabled; never DISabled
Noah’s Brain Development
My Little Family


5 thoughts on “L1 & The Pediatric Opthamologist: 16 Weeks Old (Exactly!)”

  1. Hey! Kudos to you & your beautiful family! My oldest has no vision in his right eye-congenital defect called Morning Glory Disc Anomaly (basically his optic nerve never attached in that eye) + congenital cataract. It is so hard not knowing at such a young age. You will be in my prayers! P.s.’found you through Blog Makeover Challenge!

    1. I’ve actually heard of that; another follower said her son had it so I did a little research. It is hard, but it is so humbling and reminds us daily what we take for granted! Thank you for all of your prayer!

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