Today was G’s 8 month vision exam with our Pediatric Optometrist. If you remember in our last visit, G was diagnosed with Delayed Vision Maturation which just means that he was delayed in his vision development but would eventually have normal vision. At the time, the Optometrist told us that she did not think that G had Cortical Vision Impairment (CVI) which is more serious and has to do with how the brain processes the images that G sees.
Well, today we got the diagnosis that he probably has CVI. I was pretty disappointed about it and Mamma C was pretty down as well. CVI means that G will have a variety of outcomes for his vision, but he will most likely never have completely “normal” vision. It also means that he will have many challenges when it comes to reading, dealing with crowds, etc…
Obviously, it wasn’t the best news, but it’s not the end of the world either. We have been encouraged to see G make progress in tracking objects and focusing on us more recently and that doesn’t seem to be plateauing or slowing down. He’s still just as smiley as ever. We’re just a bit concerned as to how he’ll be impacted by his vision impairment going forward.
The next steps for him involve getting him hooked up with vision therapy through Early Childhood Intervention (ECI).
We had our 6th Month check up with our Neurologist at Dell Children’s this morning. Overall, it was a pretty uneventful appointment. There is little new information about our guy that we could discuss with Dr. Kane. It was fairly apparent pretty quickly that we really needed to have a recent MRI done before being able to discuss anything in detail with him. A few things that came up in the meeting and were answers to questions that we had:
G’s global development delay is not a result of his Agenesis of the Corpus Callosum. I had read online that most ACC kids grow up very much similarly to typical kids their age and only begin to show symptoms of the condition once they mature. So the fact that G is at the level of a 3 month-old right now is more related to his chromosomal abnormality than his ACC. Doctor Kane told us that often ACC is a symptom of the fact that something isn’t right with the development of the child in the womb and that seems to be the case with G. His ACC is a result most likely of his chromosome abnormality.
What the neuros are watching for and wanting to see on the MRI is whether there are gray matter cells in the white matter. I have a hard time explaining what this is, but the general idea is that the brain should continue to mature as G ages up to 2 years old. And if there is evidence of gray matter in his white matter, that means that his brain is maturing poorly.
We’re not in a huge hurry to do the MRI soon and there is no medical necessity for it. There’s really no treatment for his condition…no cure, so there is no hurry to “figure it out” so we can treat it. The main thing that the neuros are watching for are seizures.
Overall, the plan is to continue with the physical and occupational therapies as we are now and continue to pray that he keeps developing and improving. He gets more smiley and rolly (if that is a word) each day, and we love it.