We finally heard back from the ENT who had ordered the sedated MRI for Chapel. We had expected a one to three day response and it was nearly 2 weeks.
The ENT gave us so much information and it’s difficult to explain it all, honestly. But in a nutshell, it is not probable that Chapel can have a cochlear implant on her right side (the side with the facial paralysis). The nerves have several abnormalities besides being incredibly tiny in comparison with what is considered normal. On the left side, it also does not look promising- but it is not out of the question yet.
The auditory and facial nerves on the left side are also incredibly tiny. So tiny that they aren’t convinced that the auditory nerve will be robust enough to carry auditory input to the brain. They do not want to put her through this surgery for no reason. Unless they are fully convinced that a cochlear implant will be successful on that side, they will not perform the surgery. There also is a greater risk that the ENT is concerned about. Because of the abnormal location and size of her facial and auditory nerves, there poses a risk of damaging the facial nerve while trying to perform the surgery. This would be pretty detrimental for Chapel who has partial facial paralysis on the other side, and to lose muscle control on the opposite side would be tragic for her.
The ENT is consulting with the cochlear implant company who has a team of surgeons who assess specific cases like Chapel’s to determine if a cochlear implant will be successful or not. They also can perform a test, which would be surgical because of Chapel having microtia, where they can physically go in and try to stimulate the nerve that runs from the cochlea to the brain to determine if it is adequate for the job.
The ENT also mentioned the brain stem implant option again, but reiterated that she didn’t want us to get our hopes up about it. A brain stem implant is only approved by the FDA for one specific condition, and while the surgery is legally performed in a few places in the country, it not being FDA approved most likely means it would not be covered by insurance. Brain surgery may not be the cheapest surgery out there to pay for out of pocket.
I am discouraged and encouraged all in the same breath. I told Danny last week that I felt like God was preparing me for the call that would say Chapel was not a candidate for cochlear implants. And while that isn’t the call I received…I still pray I’m wrong about that. But then I’m also encouraged too. Adopting children with special needs, who speak other languages, who are aging out of systems; etc…it has changed me. My expectations for life are far different than they used to be. I used to see special needs from such a narrow, scary and even condescending view- if I’m very transparent. It was always such a foreign thing to me as a child and even in my limited interactions with peers with special needs. While I never would formally speak down to anyone, the way I ignored the issue…the way I distanced myself from people with special needs- spoke for itself. It breaks my heart to think about that because it’s so very far from the heart of God to live in that way. And so I’m completely encouraged in the FACT that I have the most beautiful, resilient, creative and diverse kids on the planet (in my very unbiased view) and I know I am right where I am supposed to be as their mama- appointed in this time and place for this purpose.
It’s daily apparent more and more that Chapel understands all of my fumbling and feeble attempts to communicate with her with my hands. She knows when we have to turn around in our driveway and go back to the store when mama forgets something and she gets downright mad about it because she likes to be at home. She knows what each object I grab in the kitchen is for and she dances, waves and jumps when she knows that what I am doing is for her. She knows when I move my hands off of the spoon while she chews so I can multi-task and she doesn’t like that either. She wants that spoon loaded and mama only focused on that job. She knows her family members and delights in them. She understands most of the sign language I’ve practiced with her. It’s more than obvious that she’s capable of mastering ASL and living a full and wonderful life, simply communicating in a not-so-common way.
But it is scary for me. Not because I fear that she would miss out on anything. I don’t believe that for a minute. I just doubt myself and I know I have so, so much to learn. And not only me, but our entire family. While we all can sign some, if Chapel is completely dependent on ASL to communicate then anyone who desires to be more than a very basal part of her life- would require knowing how to sign. I am confident and know our kids are up for that task. I believe they’d want nothing more than mastering ASL for Chapel.
So I’m just here, dragging my feet a bit. Still holding onto the hope that Chapel will in fact be able to hear and feeling like I know so very little in the ASL world and have far to go. I have not lost faith- it was not fear or doubt inside of me that prepared me for that phone call yesterday. I know it was the Lord. I don’t know why. I just know now. And I trust the weaver of all things beautiful and adventurous and wise and perfect will weave Chapel’s story exactly the way he intended it to be woven.
Chapel did not weep about the call yesterday. She’s more giggly and vibrant than ever. Her life has made a complete 180 in the last six months and it’s pretty clear that she’s loving everything about her days. She sits in the floor at this moment crawling in the beams of sunlight that fall through the windows onto the floor and is smiling at each little treasure she finds to pick up. She doesn’t know that she’s missing sound…she just knows that she’s gained love, family, joy and nourishment. Everything else is just details right now.
So now we wait to find out when/if this test will be performed for our Chapel and if a cochlear implant is still on the table. In the meantime I am striving to set some ASL goals to help me progress, I’m trying to motivate myself to master this language.
Next week Chapel has surgery on her hand. I’d greatly appreciate prayer for her during the surgery and recovery. Thank you so much for your prayers for our girl!