We just got back from another doctor’s appointment. Buuuuuuut, we had to go all the way to Pittsburgh for this one. Seems crazy right? You may remember us making the trip back in March to see Dr. Roman, who is like the world’s greatest guru on Elena’s vision impairment. Well we just had our follow up appointment with her and I can’t wait to tell you about it.
First, a quick refresher. Elena suffers from a Cortical Vision Impairment. When we were in the hospital with her, the doctors kept telling us that she may be blinded from her injury. So, when her Ophthalmologist told us her eyes were perfectly healthy, we were so relieved she wouldn’t have any vision impairment. That’s when we learned that Elena’s vision impairment doesn’t actually have to do with her eyes. The disconnect is that her brain has trouble actually interpreting what she sees. You may remember, too, that CVI does get better with proper attention and therapy.
Enter Dr. Roman. I can’t even begin to describe how amazing this lady is. She oozes with knowledge and a passion for CVI. We were so amazed by the explanation and information she was able to again share with us. It really is fascinating. She is WELL worth the 12 hour round trip to Pittsburgh for a two hour doctor appointment!
She spent quite a long time with us talking about Elena then evaluating her. It’s so amazing to watch. She is able to get Elena to look at things so quickly and really break down how she is seeing it. I should video tape it because it never ceases to amaze me! Anyway, she has come up with a scoring system for children with CVI based upon what and how they see. I think I mentioned before, it’s very possible to for a child with CVI to go from basically being blind to able to functionally see, or even read, which is miraculous.
Dr. Roman was so thrilled with Elena’s progress. She even got teary at one point (another example of how passionate she is about her patients!) about what strides Elena had made in just six months. Elena moved up 1.25 points on the scale! This is HUGE for such a short time period. Praise God! Dr. Roman took a great deal of time to explain our next steps for Elena’s therapy and what our focus should be for the next several months. We feel very confident in our ability and her therapists to be able to integrate this into our routine to continue her improvement.
Again, we left there feeling empowered and acknowledged. As a parent who fights every day for their child to succeed, I can’t begin to tell you how important that is. There are many days that our efforts feel futile, but this just reinforces that Elena has SO much more to prove. She is so much more capable than even Chad or I give her credit for. We are so proud of how hard our girl works each and every day. We’ll just keep trucking along, pushing her harder and watch her achieve!
Elena got to go swimming with Daddy at the hotel!
She looks unsure, but she did pretty well in a queen size bed all to herself!
A silly selfie with Mommy!