The ENT appt. was good. I think we will cancel the surgery with Children's Plano. We liked this doc much better. He has worked with a couple of other kids that have arthrogryposis so that was cool. He said that sometimes arthrogryposis can affect the synovial joints in the ear bones causing hearing loss. He is not saying that is what is going on as it does appear that fluid is in the ears but wanted us to be aware that that could be a possible scenario even after the fluid is cleared. He gave us some nasanex spray and says he has had success on that clearing the fluid out of a few kids ears but not to expect it to work. Since we are going on vacation anyway we said we'd go ahead and try it and then see where we were at when we got back. If that doesn't work, he will do tubes. He said hearing is not crucial to speech development until 6 mo. so waiting a bit is not going to hurt her in that respect. So if fluid is still on the ears after using the nasanex we will do tubes with him and then after tubes they will do another ABR to check her hearing. They will have to use sedation for than now that she is older. They do not do it at his office so we will be referred out for that test somewhere. Anyway we felt much better about going with this doctor because he actually gave us the options and talked with us as well as answered questions. Plus I really like that he actually knows what arthrogryposis is.
Life at 8200
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