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.
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7 comments:
Tricia,
I'm glad they figured out that the four electrodes that have migrated have indeed already been shut off, as that hadn't been confirmed when I talked to you yesterday afternoon.
Whatever happens now, Emmi has already benefited immensely from this process. She will always understand more about language than she ever would have without this process, and it's given her a boost in her social development that's enormous. Her cousin Corinne is most appreciative that Emmi uses language to get her way rather than those pinches she previously used to express her displeasure! She's moved from being on the outside in groups of children to being right in the middle. This process has allowed people to better test her intelligence and to see what we've always seen: that she's a very intelligent little girl. She's going to be so excited when she's reimplanted and activated again. She'll think it's worth it, all this she's going through.
Mom
What your mom said above was perfect, I can't really add anything to that except to say that we'll be thinking of you guys and hope it all gets resolved soon. xoxo
Tricia,
I'm sorry about the implant and everything your family is going through. Emma just had her first CI surgery on 11/21 and will be activated 12/10. I'm really excited about the possibility that she will love hearing.
As excited as I am about the future with the CI, I'm cautious about a future tied to electronic equipment that can break. That just stinks as you have learned first hand! I guess we have to take the good with the bad and hope the bad is brief. I hope you have a definite surgery date soon and that it is in early December so that Emmi will be live again before the new year. We will keep Emmi and the whole family in our prayers.
Kristina, mom to Emma in Delaware
Kristina! I am glad she finally had her surgery! Call me when you get a chance, I want to hear all about how it went.
Sending prayers and good thoughts to all of you!!
Tricia-
Thinking of you! Thank you so much for your support through Casen's therapy! I only hope I can be as much of a support and encouragement to you during all of this with Emmi. Way to follow your mommy-instinct and push until the doctors figured out what was going on!
HUGS
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