A lot has happened since my first post a few weeks back. Two weeks ago Isaac underwent surgery to have a feeding tube placed and a tracheostomy was done at the same time. He is recovering well, but because of the trach he will need home nursing care set up before he can leave the hospital. There is a huge home nurse shortage, and we have been warned it could take 6-9 months to find enough nurses for him to come home. He is on minimal vent support, and the doctors are hopeful he can be completely weaned off of it. In the mean time, we are working on PT and OT. We are also still in the midst of genetic testing to determine what syndrome he has. For now, its lots of trips back and forth to the cities for us! He is such a strong little boy!