Can you hear me?

Normally, Emmi attends school at a regular elementary with a deaf ed program. I won't get into how amazingly awesome that school or program is right now. Let's just say it is. Over the summer, the deaf ed students have been merged together (there are two deaf ed programs in our district), and moved to a different campus. This makes total sense to move the deaf ed students to a school that does not specialize in deaf education. I mean, go ahead and have a school filled with sound booths and specially equipped sound field classrooms. Then let the kids who failed the TAKS test use that school, while the deaf ed kids get shipped off to another school with no specialized equipment or enclosed classrooms.

On top of that, I hate this new school. Parents have to be buzzed into the main door. I get that is some fancy security feature. But really, I don't like the feeling of you locking my child away from me. It just doesn't give me the lovey doveys. It gives me the creeps. And, it pisses me off because I am constantly having to wait to be let in when I drop Emmi off after therapy.

This morning, I rang the buzzer no less than five times. I could hear it buzzing away inside the office. Yet no one responded. I was getting pissy. Finally, a teacher walked by. I knocked on the door, and she kindly opened it for me although she explained she was technically breaking the rules. Apparently, I should have waited to be buzzed in.

"We have been waiting for about fifteen minutes," I said, now getting irritated. Rules my ass. It is fucking hot out there. And I have somewhere else to be.

"You should have rang the buzzer," she said motioning towards the intercom by the front door.

"I did."

Confused she says, "I wonder why they didn't hear it?" She disappeared inside the office to find the secretary so that I could sign Emmi in.

Instead of the usual secretary, a young man emerged. He looked at me, smiled, then signed "ID please."

Deaf. The man was deaf.

Which explains a lot.

Friends

Through out our lives our friendships will constantly change. There are times when I spend more time with one person than another. Certain moods draw me towards certain people. But one thing remains true about all of my friends, my true friends, we are all willing to drop everything for each other, be there for each other, and support each other when the time comes. It doesn't matter that we don't go to lunch everyday, or talk on the phone everyday. It matters that when the other person is in need, we are there for each other. This is my biggest definition of friendship. To me, friendship is not about how often we went shopping together last month or the last time we sat down for dinner together. We all have lives that interfere with how often we would like to talk or see each other. To me, what separates the acquaintances from the true friends is that ability to support each other.

Generally, I know exactly who these people I can count on are. Sometimes, I am shocked when a new person emerges. There are people that I truly did not expect to be standing by my side, and yet, there they were. And then, sometimes, I am blown away when I expect someone to be there and they are not. At. All. Like won't even answer the phone when I call. Won't call me. Sends me one, "Sorry your kid is having major surgery, but I was out shopping when you called," email.

I have listened to her every complaint. I have helped her when she was in need. I have tried to be a good friend, but I am over the one sided friendships.

On another note, super duper thanks to
Sheri who probably dreads my panicked phone calls lately, but takes them anyway!

and Anita for, among other things, watching Ems last night, so we could be at the hospital with the fam...that is a whole different story

and Stace for checking up on me all the time, even though she is sleep deprived (and maybe ready to pull her hair out!)

and all my other awesome friends....

That came out wrong.

Over the weekend, Kenny and I had a night to ourselves. Jill is at my parent's house, and Emmi's dad actually picked her. Afterall, he had a family gathering to go to, so he had to make it look like he is super involved in her life. In any case, it left Kenny and I all by ourselves Saturday night. We took the opportunity to go out to eat. Alone. To a non-kid friendly restaurant. The next day, we were deciding our plans until Emmi returned.

T: I don't want to go out to eat again. I have been trying to eat really good. I mean, other than last night, I haven't hardly eaten in days.

K: You are trying to eat good, so you haven't eaten in days?

T: Yes. Kenny. I want to look good in my wedding dress. That anorexic look is hot.

What I had meant to say, was I hadn't eaten crappy food in days.

Reading Between the Lines

Doctors never like to tell you what is going on. Not until they have an exact answer. So they do things like say, "Hmmm, there is an air bubble in her abdomen, so I can't get a clear picture. Let me get a look from this angle." When what they mean is, "Emmi's is kidney is badly deformed, but I don't want to tell you until I know exactly what it is and how I am going to treat it." After years of this, you learn to read between the lines. You learn to hear what they aren't saying, and you figure out when they are protecting me from the truth. The thing is? I handle the truth much better. Just get it out there. Let me deal. Don't make me guess and wonder and imagine the worse case scenario. Because sometimes I imagine even worse that what it ends up being. Which is why today, I am convinced there is something really wrong with Emmi.

When all of this implant failure hoopla began last week, a CT scan was ordered. Then, the doctor decided it was unnecessary. Surgery would happen either way. On Wednesday at the team meeting (which included Emmi's geneticist, neurologist, renal specialist, and craniofacial surgeon) they decided the CT scan would happen afterall. When I asked why, the answer I got was this, "Well it is needed for insurance documentation. But don't worry, regardless of what they find, the surgery will still happen." So I pressed more. "So if it isn't necessary for approval, then why do we need it for insurance?" The answer became more convoluted. "Well insurance doesn't need, they just need it in case insurance needs it. But is doesn't affect approval. We just need in case we need it for approval." Uh. Excuse me what?

The thing is, I already know that the ONLY other case of migration occurred due to a bony growth. I can only assume they are looking for some kind of growth or tumor. What I don't know is, are they looking for cancer? Do they suspect something benign? Does her geneticist suspect something? Was it the neurologist? I know it wasn't the ENT. He already directly told me he did NOT want to do the CT. So I know it was one of the other doctors that suggested it. But who? And why?

Now I am left to worry. And I would really just do better dealing with whatever I need to deal with.

PS I just got the call that we received final insurance approval for the surgery.

Potential Surgery Date

We met with the implant team this morning. We have potential surgery date of July 20th. It will perhaps be sooner. Definitely this month.

While other people spend the final month before their wedding worrying over the last minute details like tallying up the guest count and assembling programs, I will be by my kid's side as she goes through major surgery. Again. There will be post op appointments and implant activations and many trips back and forth to Texas Children's. I will be leaving my kid for a week to go on a honeymoon shortly after she has major surgery. I think that pretty much qualifies me for the Mother of the Year Award.

It's an awesome time around here right now. Just awesome.

Emmi Update

As of last night, the plan of action with Emmi was to skip the CT and keep her processor off. Basically the surgeon feels that a CT is unnecessary. Why put Emmi through yet another medical procedure that, yes will give us definite answer, but will lead us to the same conclusion he has already reached. The implant needs to come out. It has already shifted. This much we know from previous CT scans. There are constant changes in the function of the remaining electrodes with shorts appearing here and there. The belief is that there is possibly some kind of bony growth behind the implant (something he has seen in only ONE other case). For months we have been sitting, waiting for the time when Emmi noted a decrease in function or some other change occurred to remove the implant. Obviously some other change has occurred, so the time is now.

We will see the doctor and audiologist Monday morning. Last night the coordinator and I discussed some possible surgery dates. The will do an explant/implant at the same time. Emmi will have to go over a month without her left processor (time until surgery and then time until activation).

I am glad she finally has enough language to explain to her what is going on. Last night we talked about how it is hurting her so bad to wear it, so she should not wear it. She said she should get a new one. I told her that was the game plan. I also told her getting a new one was hard, because it was surgery. But we were able to talk about. Something that we could not do six months ago when this started. She even told me to turn the TV down to talk to her when she has just one processor on! She has so much understanding of how it all works now. I am grateful for that. For her, emotionally, the timing is better.

Physically, the timing sucks. The surgery date they are looking at will be three weeks before my wedding. Her head will be partially shaved in pictures. (Trivial, I know, but still. Luckily her hair is long, so it can be covered....Ashley take her pics from the right side, okay!) Her activation date will fall during my honeymoon, so my parents will have to take her. I already spent my morning researching a phone plan for Jamaica, so I can bring my cell phone this time. She will be four days into activation when she starts Kindergarten. She will miss two days of Kinder the first week. Then a day a week for the next two weeks. Then twice a month for the the next two months. After that, hopefully, she will move quickly through MAPing. I had planned on cutting back private speech therapy (which I pull her out of school for an hour a day) to once a week. With a new implant, I don't think that is the best idea. Luckily, academically, she is ahead. We will have to work hard to keep her there.

For me, I feel like this is all never ending. There is always something. A kidney infection that we are carefully watching, because of her kidney disorder. Or an implant failing. Or Emmi not eating for several days. Always something.

Opposite of Good

Today is not a good day. It might be the complete opposite from good day.

If you follow Emmi's story on her blog, then you know that her left cochlear implant has been giving us (okay, not really me, that thing is not in my head) some trouble for quite some time. The electrodes shifted. There has been a short between two other electrodes. We have been watching and waiting to see what needed to be done for a few months. Re-implantation had been discussed, but put off.

Last week, Emmi started complaining of pain in her ear. Then she stopped wearing her implant. Last night we were up all night with Emmi in so much pain that I finally relented and gave her codeine. Today, after several phone calls back and forth with her ENT and Audiologist and many other team members it was determined that a CT scan was needed now. Or, like, yesterday. There is some thought that the implant has shifted more. There could be infection around implant. Perhaps it will need to come out now. We don't really know what is going on, but the doctor is worried. Surgery was said a lot during the conversation.