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.
Wednesday, May 13, 2009
Friday, May 8, 2009
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.).
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.).
Monday, April 6, 2009
Eck.
I have been following Seth's story, and he is all set to have his implant surgery this week! His mom posted about watching a video of the CI surgery. Eck. But she also explains pretty well what exactly happens during surgery, if anyone is interested.
http://www.profoundlyseth.com/2009/04/not-for-faint-of-heart.html
http://www.profoundlyseth.com/2009/04/not-for-faint-of-heart.html
Wednesday, April 1, 2009
Today's Appointment
Emmi's audiology appointment revealed two issues. One, her craniofacial doc is an idiot. Okay, actually, I already knew that. Idiot might not be the right word, he is apparently the best surgeon around, so perhaps ass is a better word? The second issue is the short circuit has reappeared in the left side.
A few months back, after Emmi complained for MANY months, it was discovered that 4 of the electrodes were no longer in the cochlea. One, the 9th electrode, was sitting right on the window, probably the cause of the uncomfortable sensations. All four were shut off. A review of the CT scan done prior to implantation of the right side showed this problem was present back in 2007, meaning it had more than likely shifted right after surgery. Not great news, but better than the alternative which was a random shift for no good reason. On top of that, Emmi has a short between electrodes 2 and 5. First, they shut off both, then they shut off only one, then the short disappeared. When the four extra-cochlea electrodes were shut off, the short was gone. We thought we were in the clear with eight electrode still functioning. However, today, the short is back. Meaning? At least one of the two has to be shut off. She is down to seven, putting us back in that "iffy what should we do" land. On paper, it looks bad. She should probably be re-implanted. Technically she should not be hearing well on the left side. Except, she tested at 20 decibels for speech in the sound booth today! Better than the right side, even. So we will wait and watch.
During the appointment, her audiologist inquired about her VPI and how the appointment with the craniofacial doctor went. I told him what we were told (Emmi was not a candidate due to low tone caused by her genetic condition). Her audiologist was confused. It was not what he had been told, so he pulled up the plastic surgeon's notes. Clear as day, it said Emmi was simply too small, that she was, in fact, eligible for the surgery, and we were due back in one year when her weight should be sufficient to perform the surgery. What?! Are you kidding?! Not at all what were we told. I spent the rest of the afternoon firing off several angry emails to both the plastic surgeon's office and the Speech and Language Pathologist (who I love, and who apparently has been right all along, so she didn't get and angry one...just an email.). Hopefully, I will get the real story soon. So Emmi may still be a candidate for the surgery. I honestly don't know how I feel about this, but I will wait until we hear back.
Aside from that, I was reading over the audiologist's shoulder and noticed it said "severe VPI." I mean, I know she has a VPI. I know it causes problems. But there is just something about seeing "severe VPI" written by the doctor of all craniofacial doctors that makes it seem even worse.
A few months back, after Emmi complained for MANY months, it was discovered that 4 of the electrodes were no longer in the cochlea. One, the 9th electrode, was sitting right on the window, probably the cause of the uncomfortable sensations. All four were shut off. A review of the CT scan done prior to implantation of the right side showed this problem was present back in 2007, meaning it had more than likely shifted right after surgery. Not great news, but better than the alternative which was a random shift for no good reason. On top of that, Emmi has a short between electrodes 2 and 5. First, they shut off both, then they shut off only one, then the short disappeared. When the four extra-cochlea electrodes were shut off, the short was gone. We thought we were in the clear with eight electrode still functioning. However, today, the short is back. Meaning? At least one of the two has to be shut off. She is down to seven, putting us back in that "iffy what should we do" land. On paper, it looks bad. She should probably be re-implanted. Technically she should not be hearing well on the left side. Except, she tested at 20 decibels for speech in the sound booth today! Better than the right side, even. So we will wait and watch.
During the appointment, her audiologist inquired about her VPI and how the appointment with the craniofacial doctor went. I told him what we were told (Emmi was not a candidate due to low tone caused by her genetic condition). Her audiologist was confused. It was not what he had been told, so he pulled up the plastic surgeon's notes. Clear as day, it said Emmi was simply too small, that she was, in fact, eligible for the surgery, and we were due back in one year when her weight should be sufficient to perform the surgery. What?! Are you kidding?! Not at all what were we told. I spent the rest of the afternoon firing off several angry emails to both the plastic surgeon's office and the Speech and Language Pathologist (who I love, and who apparently has been right all along, so she didn't get and angry one...just an email.). Hopefully, I will get the real story soon. So Emmi may still be a candidate for the surgery. I honestly don't know how I feel about this, but I will wait until we hear back.
Aside from that, I was reading over the audiologist's shoulder and noticed it said "severe VPI." I mean, I know she has a VPI. I know it causes problems. But there is just something about seeing "severe VPI" written by the doctor of all craniofacial doctors that makes it seem even worse.
Tuesday, March 31, 2009
Her favorite pose.
Spend more than a minute with Emmi, and you are bound to see her break out into a dance. Ending, of course, in this pose.
If....because.
Emmi's therapist gives us homework each week. It used to be that we would work on the same thing for weeks before we noticed any progress. Now, Emmi is mastering each task within days. It is amazing the sudden jump in progress she is having. I know it goes in phases, and we will probably hit a slow down soon. Until then, I am ecstatic every time she gets something new.
Last week, we started working on more complex sentence structure. Thursday we were given the task of using "if" and "because" in speech as much as possible. Today in ST, she actually used "because." A month ago, she was capable of five word sentences, but mostly using three. Today, she said, "She cleaned her room, because it was dirty." Wow!
Last week, we started working on more complex sentence structure. Thursday we were given the task of using "if" and "because" in speech as much as possible. Today in ST, she actually used "because." A month ago, she was capable of five word sentences, but mostly using three. Today, she said, "She cleaned her room, because it was dirty." Wow!
Monday, March 30, 2009
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