Geneticist Appointment

Yesterday was Phoenix’s appointment with the geneticist and she was diagnosed with Aperts syndrome. Apert syndrome is a genetic disease in which the seams between the skull bones close earlier than normal. This affects the shape of the head and face. It also caused the webbing in her hands and feet. We are now facing more appointments and surgeries. Phoenix is doing great! She had a long day yesterday, she saw two doctors (her geneticist and hand and foot surgeon) and had some blood drawn. We will be seeing a crainofacial surgeon next week to talk about tests and surgery to prevent the skull from fusing together. There are a lot of concerns with Aperts syndrome, one of the biggest is that her skull will fuse early and cause her to become mentally challenged. She can develop sleep apnea, hearing loss, vision loss, intestinal malrotation among other things. This is a very rare disease affecting only a small number born in the US each year. Your continued prayer will be very appreciated.