A strange thing started happening the past few days with Emmi. She started flinching and covering her left ear when I talk close to her. Also, over the past week, there were several word mixups. At first, I didn't think much of it, but yesterday, I had to repeat MANY things. This is not usual for Emmi. I am thinking we are losing the left side altogether now. The thing is this is how she behaved when she was losing her hearing originally. She would cry at certain voices and flinch. At the time, we had no idea she was losing her hearing. In fact, they told us she was Autistic. Obviously, having never watched someone go through that process, I had no idea what I was seeing. Now, I am suddenly zapped back in time years ago. I didn't even remember some of this, until I watched her do it yesterday. Then, whoosh, it was like I was seeing her at nine months old all over again. The way she would arch and flinch. The look on her face. I just kept thinking, this is the same thing.
Emmi was down to six functioning electrodes in a twelve electrode array. A CT scan back in December(ish?) revealed that sometime over the past three years, the array had migrated partially out of the cochlea. Three electrodes sat completely out of the cochlea with one other perched right on the window, making a total of four electrodes permanently useless. A pesky short between two other electrodes also reappeared, proving that it would not stay away. In February, the decision was made to permanently shut down two more electrodes, leaving us at six. Six. Which put Emmi solidly in re-implantation zone. Except. She still had great comprehension, discrimination, and was solidly scored at 5 decibels better than the right side! In fact, she scores better than many implant users, even with the six out. So why put her through surgery, when it appeared to be working?
Except now, I am not so sure. I really think there is something going on now. So far, I have not been wrong. However, I really hope I am this time.
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Emmi's Story
Emmi was born with normal hearing and a genetic condition that later caused her hearing loss. At eighteen months, she was diagnosed with hearing loss. By one month later, it had progressed from severe to profound. She received her first cochlear implant on her left side shortly after her second birthday. A year and a half later, she received her second implant on the right side. Within months of the second implant, Emmi's language skills exploded. She still has trouble with announciation due to a malformation of her soft palate, but she continues to work with private speech therapists, as well as the school district.
7 comments:
I hope you're wrong this time too! I'll keep sweet Emmi in my prayers!
I hope you are wrong, but have to say that my Mommy gut has been right >99% of the time even when I don't let myself listen to the gut because I just don't want to hear what it has to say!
Let's hope the responsiveness from the company is much better at the next audi apt! And, let's hope it is just a one or two day phenomenon and she goes back to normal by the weekend.
Kristina
Oh, I hope you don't have to go through a reimplantation! But thank goodness you are listening to your "mom-sense" because mom's intuition and experience is worth a lot!
I hadn't remembered Emmi behaving that way, either. I just remembered the growing knowledge that sometimes she was responding to sound and sometimes she wasn't. I can well remember the neurologist telling us that her brain was just so compromised that, although she was hearing, sometimes it could process sound and sometimes it couldn't. How wrong that was.
I know this is something you have so dreaded, as have we all. I'm sorry, and, I, too, hope it's temporary.
Mom
Trust that gut, it's never wrong is it? I find it incredibly interesting that they thought she was autistic when she was losing hearing. That's bizarre. I'm keeping my fingers crossed for you guys that she doesn't have to go through another surgery.
Man... I am sorry this seems to just keep getting worse. Keep me posted. (((HUGS)))
The Autistic diagnosis came about because of several behaviors. For example, she used to hand flap (A LOT) and she would cry and rock at men's voices (We now know this was probably because she had lost all other hearing, and it scared her to hear some voices). There were some other behaviors, too. What didn't make sense was how engaged she was. She finally had a physical therapist who said she thought that was crap. She thought Emmi couldn't hear, and she set about teaching Emmi sign language. It was during this time that my mom had noticed some things, too. So long story short, the physical therapist ended up being right and the neurologist was wrong!
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