Baby Bo and ONH

I haven't done any monthly updates for Bo. That's partly because I haven't made the time and partly because I haven't really known what to say. The story goes like this....


When Bo had his 2 month appointment, I was worried about his eyes. They crossed a lot and he didn't seem  to be focusing on anything. He also wasn't smiling or making eye contact at all. The doctor told me not to worry. He said it would probably work itself out before 4 months. I was still very concerned. The doctor didn't see his eyes that day, because he was asleep the whole time. Two weeks later, Bo got pink eye (totally random for a baby!) so we headed back to the pediatrician. This time, we saw a different doctor. I told him again that I was concerned that Bo wasn't tracking and his eyes were crossing a lot. This time, the doctor looked at his eyes. He said that we needed to see an ophthalmologist. We went to the ophthalmologist on Halloween. I was one hundred percent sure that he would say Bo needed glasses and an eye patch- maybe surgery for weak eye muscles. I didn't think there was anything else that could have been wrong. As it turns out,  the doctor told us that Bo has optic nerve hypoplasia, which essentially means that his optic nerves are underdeveloped. We were told that he could eventually have normal vision or he could be blind. This is not something can be fixed with glasses, because it has to do with the brain processing images and not the actual eye. The doctor also said that we should consider an MRI, because children with ONH can also have other brain abnormalities. He refused to tell us anything more. When I asked for statistics, he said they didn't matter. I was furious and terrified, and I immediately started to look up ONH and find out more.

You can read more about ONH here if you want:
http://www.chla.org/site/c.ipINKTOAJsG/b.6051825/k.B964/Optic_Nerve_Hypoplasia_FAQs__What_is_ONH__The_Vision_Center.htm#.UullFfldWSo

Basically, kids with ONH can often have something called Septo Optic Dysplasia, which involves other brain abnormalities and endocrine problems. Everything we read led us to believe that Bo could either be completely fine or not fine at all. We really had no idea. So, we scheduled the MRI, which was a nightmare. First of all, it was scheduled on the first day I was supposed to go back to work after maternity leave. Then, the nurse was a flippant jerk. Bo had to be put to sleep and nobody could get a vein. They actually told us we could just come back and try again another day-um, no! They finally got the MRI done. Thank God, the MRI results came back normal. The only concern is a "possible slight thinning of the corpus callosum." Again, that might mean nothing or it might be a problem. We have no idea.

Right now, we are in the process of working with Babynet to get Bo started with OT, PT, and a vision therapist.  When they did an evaluation he showed developmental delays in all areas. We are trying to figure out if all of his delays are due to his visual impairment or due to other neurological problems. Things are looking a lot better in the past week or so. Bo has started to make eye contact more, he has just recently started turning his head to a voice, and is appearing to recognize and respond to us when we walk into a room. He is smiling some, but still not laughing. His gross motor skills are improving and he is starting to hold his toys and bring them to his mouth. These are all things he "should" have been doing weeks to months ago. He is making progress but is still behind.

We went back to the ophthalmologist on January 7th. He literally shined a flashlight in Bo's eyes and said "He seems more visually attentive. Come back in 3 months." That was it. He then proceeded to avoid all of our questions and concerns and tell us that we need to see a neurologist. He said that we will have no way of knowing how well Bo can see until he is able to tell us. He estimates that will be around 4 years old. Then, he wrote a letter to our pediatrician and copied us. The letter stated that he estimates Bo's current vision to be 20/200 which is legally blind. I have no idea why he wouldn't tell us that but then wrote it in a letter. Clearly, we will be finding a new ophthalmologist.

We  can tell that Bo can see some and we will be able to know more the older he gets.

We are planning to see a neuro ophthalmologist soon to try to get more answers. There doesn't seem to be a pediatric one in South Carolina, so that is a bit of a pain in the ass  an obstacle.

We finally had blood work done last week to check all of Bo's hormones, electrolytes etc. Again, it all came back normal. That and the MRI being normal are both very encouraging, but we still just don't know much.

I'll try to get back to doing regular monthly updates. In the meantime, here are his monthly pictures.

2 months. Bless his heart, I just could not get a good picture this day!

3 Months

4 Months 

5 Months 

As you can see, Bo is a growing boy. He is gaining weight and growing just like he should and he even had two teeth pop through out of nowhere last week. I'll post updates as we have them.