Well I have now lost faith in Mayo too! They tested her hearing (although the audiologist wanted to test it after her ABR). It was just below normal again. What a surprise. Audiology is still concerned by what we are describing. Then we went to ENT. He was sure it was related to her CMTC (although he knows nothing about CMTC and her derm. already told us none of her other problems are related to CMTC). He wants her to go through genetic counseling (NOT HAPPENING!). He then told us that "If the ABR is normal then we probably will never be able to tell you what is causing the hearing problems and just hope that she grows out of it". This was all while he couldn't even stop picking his teeth long enough to finish a sentence. We then went to PM&R and got a great report. He dismissed her from services unless she would have some further complications. He feels that we need to find answers to the hearing/communication issue but he said he couldn't really help with it.
We will have the ABR in the morning but that is another mess. They told us on our schedule that our report time is 7:00 but then we had to call the automated system and it said to be there at 10:00. Three more hours until she will be able to eat. They told us today that they think it will be normal but "just to rule it out". I think I am wishing for it to be abnormal so we have an answer instead of "hope she grows out of it".