I write of my frustrations with her hearing loss, because it seems like the topic of cochlear implant has be thrust into the light again and possible her future. Cochlear implants are where they surgically put a small electronically devise in on the nerve in the skull that stimulates the brain when sounds are heard through the processor. The processor attaches to the skull by a magnet and is warn over the ear, much like a hearing aid but there is nothing that actually goes into the ear.
It is not going to make someone deaf hearing, just give them the input to the brain they need to learn what it means. It takes month and possible years of therapy and work to train the brain to understand the stimulation to the nerve as words. Some deaf people love it, others really dislike it.
Before the age of three years and weeks after we got her first hearing aids we went to UCLA to get test done to see if she was a candidate for cochlear implants. Her hearing had not changed in two months time, so that was a blessing she was not going completely deaf. They measured her brain waves reaction to sounds through a test called an ABR. They also gave her a CT stan while she was there to make sure no parts of her ear or the bones of her head were missing. She has all her parts, they believe it is hairs in the cochlear that are damaged which is causing her hearing loss. They cannot see the hairs because they are so small they just have pieced that together by other test. There are studies being done to regrow the little hairs in the ears. They will not be ready to try on humans in our life time, but maybe her childrens life time.
Because her hearing was the same, they suggested we get her hearing tested every three to four month and see. If it stays the same she would be okay with hearing aids.
In spring of 2013 I went down to House Ear Institute in LA with lovely Lillian, I asked the doctor whom I had meet and talked with at the John Tracy Clinic if Lillian was a candidate for the cochlear implants. I was concerned because her ears kept filling with fluid and when full she really is unable to hear.
Lillian answered all of his questions in the quite room on spot. She doesn't need them he replied. What about the cochlear implant where they can save the natural hearing, a new development as of these past two years. Why risk it? He said, it not 100% certain that they will be able to keep what is left of their natural hearing.
Lillian has not cooperated during her past three hearing test. She cries and falls apart when we try to test her hearing with out her hearing aids in. 'I cannot hear' she cries. I will never be upset with her. She cannot hear and know she need her hearing aids to hear. She has also had fluid and negative pressure in her ears the past two visits. Her hearing aids are not helping her hear when her middle ear is full of fluid. We see the ENT, the fluid drains on its own, he said come back if you notice a problem. We go back, and back again. Come back in three months we are now told. I need answers not more appointments
Fast forward to this past week. We have Lillian's parent teacher conference. Lillian has had a challenging year in school. She has gone from one of two student to one of ten. Change is not Lillian's friend. She is grossly delayed in fine motor skills. She hated coloring because her hands were not strong enough, so she hated worksheets at school. She began to have issues with behavior and sensory issues also. I was ready for a lecture on having more disabling at home, I was not ready for what came out of her teachers mouth.
"Lillian needs to be reevaluated for cochlear implants. I have connections at USC, Do you mind if I see if they can see her?" I about fell off the little preschool chair I was sitting on. Really? Her new speech therapist agreed. She is not hearing the softer sounds of speech with her hearing aids that are turned up about as loud as they can go. What she cannot hear she will not be able to say. While our insurance will deny us coverage for this, because she has some hearing. We can pay privately and will have help from family members who support Lillian though everything.
I began envisioning my mom having to quit her job and Elliott and Jackson moving in with her while I spent a year getting Lillian through her post op therapies in LA. I also panicked what if she did not like them and refused to wear it?
Honestly, even a half an hour earlier I was thinking about cochlear implants as I went to her school I thought, Lillian can make that choice when she is older and we will support her as always.
We got to speak with a woman who was in her final year at UCLA undergrad when she finally got her Cochlear implant because she had lost all her hearing in one ear. She said it took a lot of work and tons of therapy to learn how to listen with it. She had taken a year off of college to get used to it. She enjoyed her implant and could tell what people were saying much clearer. She could not however tell where the sounds were coming from. Which I thought was interesting, For that reason she wanted to keep her hearing aid in the other ear. With her hearing aid she could tell which directions the noises were coming from. She was applying to medical schools this summer.
She talked with a slight lisp as did many of the young adults we talked to while at the John Tracy Clinic. It was the first time Steven had heard the way that people with hearing loss in childhood talk. It's a hard thing to come to terms with as of course you want your child to feel as comfortable as they can when they talk. You also want other people to be able to understand them and not to notice a huge speech issue.
The younger children who were deaf who spoke spoke beautifully. All of them had Cochlear implants most of them had gotten them at a very early age. There are studied and even some hospitals that will not implant children after the age of three because so much of the brain ability to adapt to new things happens in the window of 0-4 years old. After that some do but say the benefit is not as great. Clearly we missed that window with Lillian, We thought she was making so much progress, and I understand her, with tons of therapy we hoped everyone could also.
Our friend in India who have a daughter with a similar hearing loss as Lillian, had their daughter implanted on one side this past fall. She seems to be making good progress.
I feel frustrated because I feel like we have tried this road before and it wasn't right for Lillian at the time. Did we mess up? Should we have pushed more? She is deaf, she has that challenge in this life. There is a surgery that can help, but not fix it. It's risky and a huge huge life choice. It would cause me to put my life and our families lives on hold for a year. Lillian, I hope someday you read this and know how much we tried to the right thing for you. You have been our joy to help. We love that you are sandwiched between your two brothers. I love that we all understand you. I love watching the lights go on inside your head as you learn a new concept or discover something new. You are bright and beautiful. Please always surround yourself with people that lift you and support you with kindness
PS I wrote this over two months ago. I have since discovered our audiologist is closing working with the USC team to program the hearing aid/ CI impant hybrids. Also Lillian had fluid in her year over new years and could not hear a word I said with her aids on. It was so frustrating on both our sides and heartbreaking on mine. Her ears are now clear and life is returning to normal. I plan on making many several appointments with USC. I will keep all ya'll updated
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