Cade Update

Cade continues to be nonverbal. He still has a short soft palate which effects his speech and his swallowing. We still use his feeding tube for liquids only which he continues to break or lose. He can still only say the word "Mama" and "moo" like a cow. But Cade has found other ways to communicate with us. He signs less than 5 signs (progress...) and he has a growing understanding vocabulary and can follow simple commands. Thus far, various doctors have been puzzled as to what to do with Cade's mouth/palate. There may or may not be surgical options and everyone has been very hesitant to do anything because this is so rare and because of his age. I was growing frustrated with my pediatricians who were less than helpful. I recently found him a new pediatrician. She is amazing and I cannot say enough good things about her. She has found us new specialists and we have a new plan for Cade.
Yes that is a huge goose egg on his head from falling out of the RV this morning. Everyone said "what happened?" and I would say "he fell" and everyone would look at me like "sure, I bet that's what happened."
The doctor's office had this really cool chair that of course Cade liked to play with.
Today we went to Austin to meet Cade's new geneticist. She was very helpful in coordinating Cade's care and doctors. She set us up with a cranial facial/cleft palate team in Austin who will hopefully be helpful with Cade's palate. She also updated some blood work on Cade and had us meet with a social worker. They recommended a behavioral specialist based on Cade's horrible behavior in the office. We are in the process of getting Medicaid and respite care for him. With medicaid, I can get Cade access to more programs and more importantly, more therapy.
And this is what Cade does when you make him wait...
The office was a huge mess when we got done. My little tornado will hopefully slow down soon.