Today we started our meetings with the Sutter Craniofacial Panel. We met with a pediatric speech-language pathologist, a pediatric nurse, a pediatric nutritionist, a social worker, and a geneticist. We will eventually go back and meet with a panel of doctors who will then get together and discuss Coopers case.
The meetings went really well…the speech pathologist was pleased with Coopers development, the nutritionist was impressed that we had given him breast milk this long, and the geneticist helped give us a clear diagnosis for Cooper. The speech pathologist also said that the troubles he had with nursing were most likely directly related to his condition. He does have moderate Microtia and mild Hemifacial Microsomia and she classified his conditions as Ocular-Auricular-Vertebral Spectrum (OAVS). He does not have most of the conditions related to OAVS but she said that his conditions would still fall under this classification. The cause of OAVS is not known, but the geneticist assured us that it should not be a concern for us for our future children; there is less that a 2% chance that we would have another child with these conditions. We feel like we finally know what we are dealing with and can begin to move forward.
We will monitor his development closely to make sure that the hearing loss in his right ear does not have a negative impact. His kidneys are functioning well and we will have a follow up ultrasound in 1 year. We are waiting for a 3rd opinion on his skin tags, but hopefully those can be removed in the next 4-6 months.