Thursday, July 2, 2009

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.


Kristina said...

Yes, it does seem like there is always something. I find that it's hard for others to relate to, which I think is great for them but sometimes makes going through it for us that much harder.

I'm sorry to hear about the upcoming surgery and the timing. I'm not sure if it's a consolation at all, but maybe the fact that it happened over the summer is better than in the middle of the school year. It is great that Emmi can understand what is going on so she might not be as scared about what is happening. I hope this is the last in a string of never ending events for a long, long time!


Sheri said...

I am telling you, Tricia, we will hit the creepy pageant store for a hair peice. We could even get crazy with it and have her hair down to her butt.

No, seriously...I am sorry you are all going through this again. The timing sucks, but it is clearly worth it given how well Emmi is doing. I told you last week how blown away I am with how clearly she speaks. It is amazing to see her develop so much.

Hang in there. I am here for you just like you always are for me.

I am Trish Marie said...

Sheri, I will go with you to the creepy pageant store if we can get some of those fake teeth. I mean, I ca't have Jill looking like a eight year old who *gasp* lost her tooth.

Kristina, It is hard for others to relate to. And? I don't know how moms do it who have more on their plate. I am barely holding it together with what I have, and I know there are others going through more!

Aimee' said...

I'm sorry to hear that it has ended up in surgery...but at least you guys can get it over with and hopefully this will be it for awhile. =/

I am Trish Marie said...

It better be it for awhile! My stomach can't handle anymore. I am going to end up with the world's largest ulcer.

Allie said...

I'm so sorry, this sucks. You guys have a lot on your plate right now and with the wedding coming up, I know you don't need anymore stress. I hope everything goes as smooth as possible.