The latest and greatest of our adventures!

   I am at a very frustrated point in all of this. Ky had a procedure last Monday to try and figure out why she has regressed so much in her swallowing, choking, and eating. Her surgeons said they couldn't find any explanation and decided to double her therapy in hopes that would "fix" the problems she is having. So today I took her to meet with a new therapist today who agreed there are some things that are not right. She mentioned tongue thrust as well as a problem with her adams apple not working correctly. She said the motion of her swallowing is something she has never seen  before which of course adds to my frustration knowing something is wrong and getting that confirmed but no answers as to how to help her. We are continuing therapy twice weekly as well as what I am working on with her at home. She has started eating again but she struggles and it aggravates her reflux when she does. I have a lot of mixed emotions about where we are. Her doctors took the fundoplication off the table but I'm wondering if that is the right decision and a lot of other people are feeling the same. I have such a hard time with my mother instincts versus what the doctors say because they continue to say she is not text book and they continue to hope she is just going to improve but I am not ready to accept that this is going to be our "normal". I want so much more for her and I'm going to keep fighting for her until she is better. I have learned so much through this experience over the last 8 months. I am her voice and advocate and I know with all the love and support we have as well as her amazing disposition we are going to overcome this.