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.