System Failure....

I keep imagining the sound you hear when your little guy dies on Mario Brothers (the original Nintendo, of course, because that is the last time I played a video game). Is that what it is like in Emmi's head?

We have been watching Emmi's left implant. After months of problems, a CT scan revealed a migration in the left electrode array. Emmi was still comprehending and responding even with only six electrodes. No one (me included) felt putting her through surgery under those conditions was the best idea.

However, over the past few weeks, there was a definite turn for the worst. Emmi's discrimination plummeted, her speech suddenly sounded "slurry," and then the pain kicked in. She could not wear the processor at all.

With all of these symptoms there is no other conclusion to draw other than the implant has shifted more. The surgeon decided a CT scan was unnecessary. We don't need that to tell us it isn't working. He will just move forward with surgery.

We met with the implant team this morning. Instead of the regular electrode array, they will re-implant with a medium array, a more compact array. It will still have 12 electrodes, they will just be closer together making the overall length of the electrode array shorter. Hopefully this will prevent future migration.

At this point in time, we are looking at July 20th. However, they are trying to get her in sooner. Insurance approval is done. Med-El approval is done. We just need OR time.

Hey Lisa!

I love how Emmi first calls for either Mommy or Daddy, then when we don't answer quick enough, she yells for us by our first names. If we still don't respond quickly enough for her, she starts yelling her teacher's name.

As I am currently ignoring her (because I already told her she needs to come to me, and not yell across the house!), she has been yelling for her teacher for the better part of the past half hour.

You kicked my kangaroo.

Emmi ran over to where I sat on the couch.

"Mommy, you liar!"

"Ems do you know what liar means?" Obviously, I wasn't a liar. I hadn't even talked to her in the last twenty minutes. Unless there was some past discretion she was coming to set straight.

She look at me for a moment before answering, "Pink!"

Um. Sure.

"Emmi, a liar is someone who does not tell the truth. Like this. The dog is blue. Emmi pinched me. Emmi hit me. That is my purse...." I list various lies for her. Some silly, some I have heard both her and Jill use.

"Okay, Ems. Your turn. Can you think of a lie?"

She pauses, thinking. "You kicked my kangaroo!"

Obviously, she has mastered lying.

Unsure

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.

First Day of Summer School

Emmi started the summer school program today. She was beyond excited to get to see her teacher again. Two whole weeks without her! It has been like torture. But today was the day!

We are making some changes to her therapy schedule now, since the summer school program is shorter than a regular school day. Emmi usually attends private speech therapy twice a week in addition to the four - five (depending on the week) private sessions per week she receives at school. I didn't think missing several hours two days a week of the summer program would be a good idea. However, I did have to weigh in how missing therapy for several weeks would affect her overall progress. Emmi has made incredible gains. She is farther than she should be without surgical intervention. Quite frankly, everyone is a little baffled at how she produces some of the sounds she does with her soft palate cleft (VPI). Yet, everyday, her speech gets a little clearer. I don't want to backslide in one area at the sake of another. Yes, I want her as best prepared as possible for kindergarten, but I don't want all this time, effort and energy we have put in so far to go to waste. It was hard to decide what was best to do.

For now, we are dropping down to one day a week in the afternoon (maybe! We will find out tomorrow if we have the time slot). This will potentially be her new school schedule, too, if it works out without and backslide.

Curing Emmi's Illnesses

After eating an entire cupcake (which Emmi insisted was "breakfast" despite being 4:30pm), Emmi attempted to hand me the cupcake wrapper.

"Put it in the trash, Ems," I said.

She put her hand to her head. In a pathetic voice she says, "I'm too sick," while holding the cupcake wrapper out to me.

"Hmmm," I said. "I guess you can't go swimming."

Her eyes lit up. "Swimming! I not sick!"

The wrapper is in the trash, and I still have not moved from the couch.

And then there were six...

Emmi's Audiology appointment went about like I expected it to on Wednesday. Okay, maybe not quite like I expected it to. I didn't expect all of the swine flu notices and posters and hand sanitizers and separate parking. Emmi, however, loved the hand sanitizers. We had to stop at all (nine) stations on the way (ten whole feet) to the elevator bank. One mother with her small child eyed Emmi suspiciously as Emmi sanitized her hands for the fourteenth time. When the elevator arrived, the mom looked around nervously before finally stepping onto the elevator and squeezing herself into the back corner. I know she thought Emmi must be contagious with some strange illness with all that hand washing. In reality, she just loves the stuff. For fun, and perhaps the only fun I had all day, I fake coughed all the way to the fifth floor. I am pretty sure that woman is now convinced she has the swine flu. Lady, unless you can suddenly catch protein metabolism disorders (or cuteness) you aren't getting anything from her. Although, Jill did have strep throat this week... But Emmi and I? Nothing. Well not nothing. Emmi is having more trouble with her implant.

The short that has come and gone on the left side is persistently back now. Emmi showed signs the passed month of disturbance from the short in the two electrodes. Certain sounds seemed almost painful. There was a lot of intermittence. Some days she could discriminate wonderfully, others she could not. At other times, she outright refused to wear the left processor. With this information and the presence of the short between electrodes 2 and 5, the decision was made to switch them off for good. All efforts have been exhausted with those electrodes. The have tried turning them both off for a period. They have tried turning just one off. They tried them both back on. Now, they have concluded they must stay off. On top of that, this is the side that migrated out of the cochlea. Electrodes 9-12 are no longer in the cochlea, leaving Emmi with only six working electrodes. What does all this mean? Well, it means it is time to seriously consider re-implantation (hmm..seems like I said that four months ago. But what do I know, I am just her mom who is with her everyday observing her all the time.).