We are still getting help. We have her next meeting when we return from Mayo. I think she will be dimissed from PT but we will continue with speech. She has not made any new progress on speech for a couple of months and she has lost some sounds that she was making. It is like they have just disappeared. We are hoping that if we can get to the bottom of the hearing issues we can get her speech services increased. Right now they see her once a week but we are hopeful that if she has a hearing diagnosis that they will understand that this isn't going away and will maybe increase her service time.
I know that I had posted yesterday but I am just so excited that I had to post. Today I was put in contact with a Deaf Consultant from the South Dakota School for the Deaf. She is amazing! I am so excited to finally feel like I am talking to someone how "gets it" for an educational need perspective. She agreed that it is time to get a diagnosis and to move on. She also mentioned having an MRI. I have no experience with MRIs so I am not sure why this would be ordered. I am waiting for some more info. on this. She also said that after we get some more answers she would come out and meet with us and give us suggestions for Becca. I couldn't believe it. There is actually someone out there that wants to help (and they aren't even going to charge us-even better!). Great, Great, GREAT NEWS!!!
We leave on Monday for yet another trip to Mayo. I am frustrated and don't really want to even go. I am losing confidence that anyone is going to get to the bottom of Becca's hearing issues (or worse yet-tell us we are imagining it). I have heard so many people say to me "she must just be ignoring you". Come on-as a mother you know the difference. She will be listening and responding like most of today then we took her to the bathtub and she didn't respond to me, my husband, or her sisters. Later on she was again responding just fine. The other thing is that if she was ignoring us her speech should still me progressing and she really isn't making progress (no new sounds since this spring!). I may hurt someone if they tell us to come back in another six weeks. Anybody else ever feel like you are getting the runaround with doctors?
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".
ABR turned out completely normal. They told us there is nothing more they can do and that now we are just on our own to figure it out. Treated us like we are crazy. I am crying as a type this because she is still "not hearing" even though they say she can hear this moring. They told us they were going to lightly sedate her and then they actually put her under general anesthesia IV and all yesterday. Our speech teacher doesn't want to increase speech because it isn't a hearing issue and Mayo says she needs much more help on speech. I don't know where to go from here!
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