TrachKids.org

Hello TK family...It's been a while since my las post.  Alaya has finally had her tonsil and adenoids removed on April 15th,2011.  We have a visit with Pulmonary in July to determine if we should try decannulation.  I am soooo hoping that we can go forth and at the very least try.  The concern is due to Alaya undiagnosed muscle disorder, which by the way seems to only now exist from the neck up.  My daughter has never closed her mouth since birth and she does not eat anything by mouth.  She can move her jaw up and down, and say da da, and na na. She does not smile and when she laughs it sounds weak due to the open mouth posture.  Often times she will put her tounge in between her teeth and gently bite down. I assume it's to rest her jaw muscle.  Is anyone familiar with this? and what it may be?  She on the other hand is very very strong from the neck down, she walks, runs, jumps, climbs. We just can't figure out what's going on with her facial muscles.  I wonder if it's anything to do wiht the part of the brain that controls muscle in the face? Well, I'll keep you all posted after we visit Pulmonary on July 12th. Take care everyone and God Bless our little ones.