geneticist information

We got to talk to the geneticist. He did an assessment of baby Ryker, but he didn't give us much information. It is so rare there really isn't much information about his disorder. All we got from him was how the chromosome made a copy and how much of the chromosome Ryker has. Because all children with this syndrome are so different, the geneticist doesn't know how severe the disorder will be. He didn't give us any idea of how it will affect my son. I feel at a loss, but my dear sweet husband keeps telling me that everything will be just fine. Ryker is going to be special in his own way.
The doctors are impressed with his breathing. They moved him off of all breathing machines. My little boy is just receiving light oxygen using an oxygen tank. He has three goals left before baby gets to come home. He needs to learn to eat without the tube and gain weight, regulate his own body temperature, and get off oxygen completely. He is my little rockstar that's for sure.   
The nurse told me that they are going to take out his feeding tube tonight. They want me to start coming in for breast feedings during the day starting tomorrow. It might be a slow process, but hopefully he can get the hang of it. Yea for little man!!