Emmi Art

Emmi loves to draw. Long before she should have been able to make anything beyond a scribble, I was saying, "Is that a face? Did she draw a heart?" It was like when Jill started saying "hungry" at six months old, and I wasn't quite sure it wasn't just a grunt. Until several months later, she was not only clearly saying hungry, but several other words. Emmi's first drawings seemed to be flukes, until consistently, she was making drawing well beyond what she should be for her age. Four-year-olds typically draw things like this. What she lacks in physical and verbal skills, she must make up for in drawing (and handwriting....Jill, my sweet girl, your sister puts you to shame!).

And so I present, Turtle with Balloon.

What cracks me up the most about this one? I have no clue when she saw a turtle last. And? This took about three minutes.

The results are in.

The good news is we finally have the full attention of Emmi's doctor. It is a large practice. It takes months to get appointments. Not so for Emmi. She gets squeezed in, in a matter of days. Complete with a full team from Med-El.

The bad news is the news is not good. Emmi's CT scan revealed that the electrode array has migrated out of the cochlea. She currently has four electrodes out. There was a slight moment of panic as they wanted her processor off her head NOW, until they confirmed the four electrodes currently shut off were, indeed, the ones that have migrated out. I have been given instructions to watch Emmi carefully for signs of change and to take the processor off when that happens. I laughed a bit at that one. I noticed the change before it physically manifested. Or really Emmi noticed it, and I observed her behavior. I was telling them there was something really wrong months ago.

It feels a bit real now. In a matter of days, Emmi will no longer fully be bilateral. It will be useless soon. That thing is on the move. Escaping. Looking for a way out. I worried that Emmi would reject this whole process. Instead she has embraced hearing. Funny thing is, hearing seems to be rejecting her right now.

I know she will not go long before surgery. It looks like mid-December to late December as a surgery date. I just hate that she has to go through this at all. I hate that there has to be any down time. And? I also hate that I am no terrified that this will happen again. Yet another thing for me to worry about in the middle of the night.

I constantly write posts, and then don't actually post them. I am sure this goes back to the days of doing my homework and then never turning it in. Analyze that one. I get to the last line, and decide it isn't profound enough for what Emmi is about to go through. Or I get too wordy, and decide I am giving it all too much weight. I try to handle the surgeries and procedures and therapies with no emotion. I do my best to remove myself from the situation. There is no thought about how I will feel about it all or even how Emmi will feel about it all. If I stop to think about it, I will, no doubt, get overwhelmed. So I remain on a clinical level with it all. It is what I have to do. I long ago quit thinking about what this will do to us emotionally. The consequence of this behavior is that when things do calm down, the emotions catch up with me. One minute I am fine, and the next it slams into me. I can feel it physically, and I can't be weighed down when I need to be in action. There is so much to be done now.

Emmi's implant situation worsens by the day. She looses comprehension almost everytime I test her. New sounds disturb her constantly. I turn it down almost everyday. Two weeks ago we were at 75% on the left side. Today, we are closer to 60%. It is only days until the CT scan. I am looking for answers. How? Why? When? Really just the when. When will they take this decrepit implant out, and pop a brand spankin' new one in? It should be weeks, if everything moves smoothly. I never count on anything to move smoothly. I give it more like two months. Which will be torture for Emmi with the ever worsening implant.

While we wait for Emmi's surgery, Emmi will be put through a battery of other tests. Evaluations over the past few weeks have revealed that I can no longer put off the soft palate issues. I hoped that Emmi would get away without surgery for this one. However, if there is ever a hope of Emmi truly speaking or drinking from a cup or eating easily, then we have to move forward with the surgery. The implant thing? That doesn't scare me. I am fine with it. This surgery? It scares the hell out of me. I have resisted it as long as I can. It will be horrendous. I will have to watch her suffer, and she will not know why I am doing this to her. It should be my job to protect her, and instead I get to be the one to sign off on something that will put her through hell before it helps.

What we already knew.

Emmi had an audiology appointment. It confirmed what we have known for months. The implant on the left side is continuing to fail. I didn't need a sound booth test to tell you that between appointments (less than four weeks) she has lost ground. I didn't need to have her hooked up to any fancy equipment to tell you that more electrodes were running high. All you have to do is wacth her for a moment. She lip reads more than she used to. She signs a lot more. She says, "huh" often. She complains that random sounds are "too loud."

The CT scan is scheduled for the 20th of this month. Unless there are some major surprises on it, we can schedule surgery soon after that. Hopefully, by mid-December she will be having surgery. My hope is that before Feburary she will be activated with her new implant.

Humpty Dumpty

Humpty Dumpty, as interpreted by Emmi.

Apparently, Humpty jumped to his death.

Sick Kiddo

Emmi is sick again with bronchitis. She gets bronchitis and pneumonia often. Since she does not cough well due to her tone, she often needs breathing treatments during these times. She was given a new prescription today. The first time did not go well. She vomited. It gave her a sore throat. I should have given her half a dose, but I just didn't think about it beforehand. She will now eat or drink nothing besides "coffee milk." Yep, that's right. My kid is demanding coffee. Or really, milk with a splash of coffee.

To make matters worse, I had just given her the antibiotic. She now thinks that is why she threw up. She runs from me when I try to give her any. It is going to make for a fun next five days.

Progress

I should have taken pictures, but I didn't get a chance. Today Emmi wore her processors up on her ears to school for the first time. She was fitted for earmolds a few weeks ago, and they came in yesterday. She was really excited. I think because all of her classmates wear theirs that way. She wanted to be like them. She kept pointing at her ears saying, "It bettah!"

This week we had parent/teacher conferences. Wow, what a difference a year makes. Last year, we were unsure Emmi would ever mainstream. We definitely did not think she would head to kindergarten on time. This year, her teacher is quite positive that she will not only join a mainstream class, but she will also go to kinder next year. Right on time! She is doing well. She can count, she can sort, she has developed pre-reading skills, and she is writing her name and several other words. Her PPCD class is actually following the kinder curriculum, so she may actually have an advantage come next year. While her class next year will be a mainstream class, she will still have the other girls she is currently in PPCD with in her class. So she will never be the only deaf student. Plus this school is the magnet school for deaf students. There are many deaf students even in the mainstream classes. Even the kiddos that remain in the deaf ed grade school program, join the mainstream classes for large group. I have noticed that many students throughout the school sign. I have worried about her feeling odd or alone, but I don't think this will be the case at this school. The problem will be if they try to move her to her home school in the coming years. But that will only happen if she is no longer dependant on speech or audiology during the day. Not that I want her to be dependant on therapies, but I really don't want her to move to the home school. I really love Emmi' school, and I really dislike Jill's (which is our home school). But that is a battle for later years. For now, we are really happy with Emmi's progress. I promise to video tape her talking, so you can see how she is doing. And I may actually get around to posting that video, too!