Dr. Roman in Pittsburgh

The rollercoaster ride gets better. The best for last... we drove to Pittsburgh to West Penn Hospital for our appointment with Dr. Christine Roman, the CVI (cortical vision impairment) specialist. It was awesome... she was so sweet and personable, we both instantly liked her. The two hour appointment was with her and one of the NICU neonatologists (who also happens to be her husband). We went over his history and all of his medical records with them, while she started to watch Lucas' behavior. Then we went into a room where she gave him several visual exercises. Dr. Roman is famous for her CVI scale... she does a series of tests specific to aspects of the CVI condition, then rates them on a scale from 1-10 (1 being very little vision, and 8-10 have visual impairment, but are usually functional and not as obvious to the untrained person). Once she designates where they are on the scale, she can give very specific exercises and advice on how to utilize the strengths he has to help improve neural connections... and also advice on what things to stay away from. The ultimate goal is to move him up the scale as the brain recovers from the injury and makes new connections that will improve vision.

Some of the tests included assessing his responsiveness to different lights, what colors bring a better response, how he responds when sound is combined with vision, how he finds items when they are backlit, and what happens to his vision when he is trying to find an item in a busy background. He did really good, it was cute watching him find this little red ball... she'd put it on a black blanket and he'd grab it right away, then she'd put in on a fabric with a pattern - and he'd grab it right away... she'd introduce a more busy pattern - and he'd find it again. Every time he'd get it, he'd look at her with a big grin, like "that was easy, give me something else!" Finally she got to a fabric that was too busy for him to find the ball.

She scored him a 5 on her CVI scale, and said he was a 10 on her cuteness scale! Ha. It was really sweet, he was his charming little self, giving lots of smiles and warming up to both of them immediately. She'd be in the middle of a test watching his eyes, and she'd stop and put the light down and start laughing. She'd say to her husband, "Al, he's killing me over here, he's so darn cute!" Of course, Bran and I were sitting there beaming as the proud parents.

Five is better than I expected we'd start with, so we left there very optimistic. The things she pointed out (which we already knew most of them), was that he doesn't seem to see as well in the right visual field, that sound and vision are too much for him together (he loves music, but as soon as it starts, he looks away...he can't process the two of them together), that giving him the assistance of light behind the item helps him find small items (which we will start to use more of to work on fine motor skills), various things he is more responsive to than others, and to pay more attention to the background when playing (blankets or too many toys at once that could inhibit him from seeing). There were many things that came out of the assessment, but that's just a few. She is sending us a written report, and we will start working on helping him with two dimensional items in books, which are especially challenging for children with CVI.

One last important thing came out of our appointment that day... both her and the neonatologist went on and on about the level of his receptive language. They were surprised at how much comprehension he has at this age (and for his injury, of course). In the field they are in, dealing with vision issues as a result of neurological insults, I'm sure they see the full spectrum. Several times they stopped to say to Bran and I... "you guys, this is SO GOOD, it means so much that he is showing such understanding, and that he is starting to repeat back to you." She kept saying that receptive language is directly correlated to intelligence, his development in this area is a very good indication of his ability to learn. I'm not sitting here saying that "oh, he's so smart"... I am saying that due to his injury, everything in his development is a wildcard, and we are just waiting to see how this will all unfold.

The most impactful part of this is that we have a lot of hope, and there are people on our "team" that believe in his potential and possibilities, and alternative methods to reach them. The brain is amazing, and it can recover and make new connections. We've watched it happen in front of our very eyes. I left that appointment feeling very emotional, so proud of him, and also very thankful for the network of moms that I have connected with that have helped guide me to the options that are out there. I feel so lucky to live in DC during this journey, to have so many great resources close by. I had a conversation with a mother at Children's last week while waiting for the CT, and she said "this is an awful place to be, but such a wonderful place too." She reminded me how people come from all over the US just to get to the specialists at Children's National Medical Center, and we are very fortunate to live here in the same city. And now meeting Dr. Roman, along with recently finding our new ABM therapist makes me feel that we are really doing the right things for him. I told Bran last week that I feel like I'm putting together an "all-star" team... with only the best people. And only the most positive people are allowed on our team. No one is allowed to focus on what he's not doing, or his challenges... we will only be playing with the ones that see the potential.