Stunned......
Today was our long awaited appointment with Lily's neuro ophthalmologist, Dr. Liu. Upon arrival we were told that he doesn't stick to his appointment times and he was running 90 minutes behind schedule. Normally this would be a simple nuisance, however Peter needed to catch a flight at 6pm so at 4:30 he had to leave for the airport. About 10 minutes after Peter left, we were called back to the exam room and I certainly wasn't prepared for the 5 minute conversaton that followed.
Apparently, according to Dr. Liu, Lily's brain m.r.i. showed a moderate amount of brain damage in the cerebellum as well as other areas of the brain. He did not refer to it as p.v.l., but said that it was simply brain damage. The damage is likely due to her severe prematurity, as well as loss of oxygen at some point.
He would not give me a prognosis, however he did say that she "looks better than her m.r.i. shows". Her nystagmus is due to her brain damage. Depending on how the brain regenerates it is possible for her vision to get better over the next few years, but perhaps not.
He mentioned possible balance issues which could result in her inability to walk, however he would not comment on possible cerebral palsy. He suggested vision therapy, which i have questioned several times in the past year, and have always been told that she is too young for vision therapy. When I asked him if she would have pervasive cognitive delays, he was unwilling to commit. He did say that I should establish a relationship with the Overbrook School for the Blind in Philadelphia and suggested that I look into the preschool program there.
He said that we should have whatever eye surgeries that Lily's ophthalmologist suggests. He thinks she can see 1 to 2 feet from her face, however I have seen her hold toys right up to her nose in order to see them. he also said that we did not need to see him again in the future. Our follow up appointments should be with her ophthalmologist, Dr. Binenbaum.
I was simply stunned at this information as it was so radically different than what the Maryland neurologist told us when he read the films and report as well as several other doctors who we asked to interpret the m.r.i. report. Because there seems to be a discrepency, we will try to find another pediatric neuro ophthalmologist for a second opinion. This will likely take us out of the area, since Dr. Liu is the only specialist in this area. Needless to say.....we are very upset with this new information.
Please keep Lily and Adam in your prayers as Adam is now beginning to show signs of "petit mal" seizures which are staring or "day dreaming"episodes lasting 1 to 3 seconds where his eyes remain upward and to the left. He has about 10 to 15 seizures per day and the perdiatrician is ordering an e.e.g. and a neurology consult. It is likely that he will not need seizure meds due to the fact that the seizures only last 1 to 3 seconds. However if they become more frequent or last longer, than he may need medicaton in the future.
The rollercoaster ride continues......
