Lucas and his fancy Hearing Aids!


Saturday, August 14, 2010

Goodbye Head and Neck Surgical!

This post would have come sooner, but I was busy lying to my sister about some "appointments" we had so that she would "babysit". I then called her and told her those "appointments" were cancelled, and she went with her boyfriend to a "video shoot" and got proposed to! :D Congrats Crystal and Josh! Needless to say, I couldn't post what was really going until after that happened in case she read it, had to keep my cover going!

So anyway. Our last ABR with Lucas was on June 28th. At that time we were told they would be contacting Mass Eye and Ear and we would go from there. I got a call a few days later saying that the doctor down there was out until July 12th, but once they heard from her, they'd give me a call and let me know the next step. I got a call around the 15th saying the doctor down there wanted us to do the CT scan and genetic testing up here first, and that the ENT's medical assistant would be giving me a call to schedule it. I waited until the last week of July, and still no call. Norman was going on the road soon and I called and left a message with the medical assistant telling her that (as he needs to be present in order for his blood to be drawn!) and asked her to call me back so we could schedule an appointment. That was on Monday July 26th. Friday the 30th came along and I hadn't heard anything. I was getting annoyed by this point, it had been over a month since his last appointment, and nothing else had been done.

I decided to call and leave a message for the audiologist instead, as she was the one that had called me in the first place. I explained the situation, and asked her to give me a call back. She called me back on Monday and said that they were waiting on the CT scan because he needed to be sedated. OK. Then she said she was waiting for insurance to approve the genetic testing because it is $700. I asked if they had sent for approval yet, and she said they had. Then I asked when we were going to go down to Mass Eye and Ear, and she said we didn't need to go down for at least three months. I asked what we were doing about hearing aids and she said she didn't think he needed them. She said she would ask Mass Eye and Ear if they wanted to do a trial and let me know. I was upset by her answer because it's important that he get hearing aids for many reasons. We need to see if they will help, they keep the auditory nerve stimulated, they get him used to wearing something on his ears, and most importantly, most insurance agencies REQUIRE a 6 month hearing aid trial before allowing a cochlear Implant.

Since I was unhappy with the lack of communication with the office, and the information I got from the audiologist I called my Pedi Dr. Miller to see what we could do. He agreed that they didn't sound like the right fit for us, and sent us for a 2nd opinion to Dr. Damion. We went there this past week and he was really nice. I told him what was going on and he immediately said we should go straight to Boston Children's and get the testing done down there instead. I was really happy with that answer!

There's a lot more that is going on, but it's hard to find time to sit down and write it all out. More updates coming soon- we are finally moving in the right direction!!