It's finally over. It's actually been over since March, but I never wrote a post about it. Since our life has been pretty quiet lately, I thought I would update y'all on those sweet little ears of Sadies'.
As everyone knows my quest for Sadie to hear has been off and on for her entire life. We excepted her hearing loss early on. It's a part of who she is. It's not a terrible thing, it's a just a different lifestyle that we were ready to embrace. We were ready to learn sign language, ready to adapt our life. All was good. But as Sadie started to show more about who she was and what she struggled with I started to rethink her hearing loss and started to consider a cochlear implant (CI).
We tried the hearing aids in the very beginning, but seemed to be get no where with them, even though occasionally we swore she heard us, it just wasn't consistent. And since the beginning of her life we had also tried signing with her, but we couldn't even get a wave out of her (at least not one that was consistent with hi or bye). She can't stand her hands touched, so to try to attempt forming her fingers in any type of sign language was impossible. I was frustrated and I felt terrible that Sadie may never have any form of communication with anyone other than us. That's when I really started to look into a CI. Who would have thought that journey was so long and complicated!
Fist we saw (or we were planning on seeing) a CI Dr here in our hometown. However, that Dr said, without even meeting Sadie and just reviewing her medical records, that he was not going to touch her and she was not a candidate for a CI. In a way, I appreciated this because it saved me some time and energy and I thought "OK, well I guess that's that". However, a few months later, I was not OK with this answer and got really sad again about the whole situation. He didn't even give her a chance. Od course you know what happened! I started to look again. Found another CI Dr about 2 hrs away. I pursued this Dr. After meeting with him and his crew about 3 times or so, he finally decided that nothing seemed concrete or consistent when it came to her hearing. He decided to do a test under general anesthesia called a promontory stimulation. It is test that they actually go in the ear and touch the actual auditory nerve with an electrical probe (or something like that) and then they watch the brain response to see if the part of the brain that is for auditory, lights up.
In February we had this test performed and then in March we got the final report and the Dr's final thought about her hearing. The test showed that after multiple attempts to stimulate the left auditory nerve, there was absolutely no response from that ear. Which is also consistent with the MRI findings, "no nerve was seen". But the right ear when stimulated would show a response. But it was extremely inconsistent. Sometimes the nerve would "spark", other times absolutely nothing. The Dr described it as "fatiguing quickly". This also was consistent with the MRI, as it showed a very thin nerve on the right. I found all that out the day of the test. The Dr then ended our conversation that day with "I'm not sure what to think, but I'll run it past all my colleagues in different states that work on difficult, not so simple, cases to get their opinion before we make a final decision". I knew in my heart the answer, but I still hung on to a string of hope.
Finally at the end of March, I got the word that it was over. Sadie was not a candidate for a CI. Even though I knew in my heart that this was the answer, even though I had been told this by another Dr, I was still super sad and shed a few tears. Not because she can't hear and never will, but because she has so many challenges in life, I just wanted to try to make one thing a little less challenging.
It took me awhile to get over it, but as always I did. Sadie is who she is, and I can't change it. I can only embrace her for who she is and go forward from here. Do I still think that she can hear us sometimes? Absolutely! Do I still talk to her like she can hear? Absolutely! Does she respond to us at the most perfect times? Absolutely! That one nerve sparks often, just not often enough for a CI to work.
This was taken after the testing was done and we were headed out of the hospital. I'm pretty sure I could read her talking in herself in her mind here and she was telling me "stop taking pics, I'm tired, put me in the car, I'm over all this testing"! LOL I love her!
*By the way, I have found another hearing option. It's called an auditory brainstem implant (ABI). But it's still in the beginning trials for children here in the US, but it's been successful in other country's. Soooo maybe in the future our hearing journey may begin again, but for now... we are content.