It has been a few days since our second opinion. We have cried, talked, cried some more, talked to family, and cried again.
Saturday morning at our local deli/bakery, Randy ran into a man with a cochlear implant. He approached the man, P., and asked if he could talk to him about his cochlear implant. They had a nice conversation, discussed the experience, the risks, and his results. This man had normal hearing and lost it suddenly overnight. The cochlear implant restored 90-95% of his hearing. He and his friends basically said, "How could you not give her a chance to hear?" Then they asked to put Audrena on their prayer list. ABSOLUTELY! Keep 'em coming!
We keep coming back to that question, "How could we not give her a chance to hear?" We have come to the conclusion that even some hearing would be a benefit. If Dr. L. was still comfortable doing the surgery, then things can't be that bad. Then the meningitis risk can't be that high. We vaccinate on time. Ok, so we do still need to know, and I did call his nurse this morning to ask about it, as well as to make sure Audrena's auditory nerve was really normal as the neurologist said. She was out today, so I will probably have an answer tomorrow.
Over the past few months, we have considered Total Communication (sign language as well as hearing, speaking, and lip reading), and we've decided that we will prefer to use Auditory Verbal or Auditory Oral Communication. The parent of an adult deaf man said to me, "Face it. It's a hearing world." She would have gotten an implant for her son, had they been available at the time. I know that there is a wonderful Deaf culture out there. Deaf people are very successful in life and have great careers. But I also know that I want to give my daughter the chance to hear. I want her to marvel at those chirping birds. Randy wants her to hear him say, "I love you." We want to hear her little voice. The studies I have read find that a small child (the younger the better) who receives cochlear implants and Auditory Verbal or Auditory Oral rehabilitation will do so much better with the implants. With the proper therapies, it's possible to have the child mainstreamed in Kindergarten, and really maybe even before. 30,000 words per day. I think I can. I think I can. I think I can.
I called our Birth to 3 coordinator today to tell her about Dr. L.'s recommendation for physical therapy. Audrena had not previously qualified because she showed fine in that area of the evaluation, although she's not yet walking. So Audrena will now receive physical therapy and speech therapy. The coordinator had also arranged for an outreach worker with the South Dakota School for the Deaf to be involved in Audrena's care. Wonderful! I had planned to contact them, but now I don't need to.
I received a call today from the genetics team. They meet once a month, and they only take 3 patients each time. It could take us 6 months or longer to see them. That should give me plenty of time to get insurance on board with the testing. I'm more worried about getting insurance to approve both implant surgeries. They've been good so far, so let's just keep praying. Time is of the essence for these surgeries.
As for Audrena's abnormal vestibular system, I really wonder if I have the same defect. I have kind of bad balance, especially at night. If I can't see, I have to steady myself with a wall, or else I fall all over the place. My mom's balance was not good, either. So maybe it is genetic. And maybe it's not going to be as bad as Dr. L. warned us it could be. I rode a bike. I walked a balance beam in gym class. Audrena seems pretty steady after her ear tube surgery. Maybe she's already compensating well. I think with some physical therapy, she'll do great. I bet she will ride a bike.
I'm a little afraid that the counselors on the cochlear implant team will think I'm really too unstable to take this on. They will want to discuss reasonable expectations for the results of the implantation. Reasonable expectations. I'm well aware that my expectations are probably completely unreasonable. I want as much therapy as possible for Audrena. WE are dedicated to getting her caught up to her peers in speech/vocabulary before Kindergarten. We want her to be mainstreamed. I envision her playing sports and participating in extracurricular activities. I see her becoming something hugely important, like the first deaf woman president. Small but mighty.
Will I need to adjust my expectations? Maybe. Will I be completely devastated if she doesn't have a fantastic outcome with the cochlear implants? Probably. But then I will pick myself up and move on. If she has some learning disabilities in the process and is not mainstreamed as we hope, we'll do our best. If cochlear implants do not work well for her and she needs sign language, then we'll change our focus. Because she is our child, we will make sure she has everything she needs to pave her path to success, whatever that success entails. But as of right now, I see no reason to adjust my expectations. Randy and I are dedicated parents. Besides, Dr. C. has proven over the years that she is rarely wrong. Small but mighty. I see a bright future ahead.
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