It has been awhile since I have updated. I am horrible about it, I know. I guess for some people it is therapeutic to write down everything going on with their child. Not me. I try not to focus on, so keeping up a blog about it is hard. But this blog isn't supposed to be about me.....
We finally met with the plastic surgeon, after much delay. In his usual rude manner (I REALLY dislike this guy), he quickly let us know that Emmi is not now nor will she ever be a candidate for this surgery. He expected me to be upset. To cry or beg or kick and scream. I was just relieved. This never felt right. I could never wrap my head around it. I just felt forced, like I was a bad mom if I didn't move forward with it. I never actually wanted to, though. The implants were completely elective, and I never felt this way about those surgeries. So that told me that something was off. In any case, she isn't a candidate because of her low tone. That isn't something that will ever change. I know it is hard to understand. PT and OT can make her stronger, however, that won't change her tone. That is never going to improve. It is neurological. Permanent. She must have good tone for this surgery. All the lung infections she gets are because of the low tone and lack of coughing. The choking is also due to the tone, not even the VPI. So this surgery would actually make the choking and lung infections worse. It would limit her food intake more, not improve it. I was so glad this was no longer an option, although this means there is now no easy answer. There is no solution, and this isn't going away. But, it is no longer something I will have to make a choice about. This is choice is made for me. All of these decisions weigh on me.
For now, we are focusing on speech therapy. We will continue her private therapy, and she will continue to receive speech therapy through the school. She will remain at the deaf ed school, although in a mainstream classroom, for as long as she needs speech services, which looks to be a lot longer. She will never talk clearly. She will never be a singer even though she has a really soft, sweet voice and loves to sing. It may limit her, but I really hope not.
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3 comments:
Hello!
Your daughter is SO cute. Really beautiful. I have a cochlear implant myself, and I found you through profoundly seth. Your decision to keep your daughter in deaf ed school but mainstream... is excellent. I wish more parents would do that for their deaf kids. I feel lucky that I was mainstreamed myself because my language and grammar skills would not be like it is if I wasn't mainstreamed. ALL my friends who were mainstreamed with me have good communication skills. I just wanted to shout out hey!
Please contact me if you have questions about life as a deaf girl or about the CI and the future or anything like that.
You can also find me at www.auntof14.blogspot.com.
A warm hug going your way. Yes, from a stranger, I know, but that doesn't make it any less warm! :)
Well, the way Emmi sounds certainly makes up a part of her character. We all love her just as she is. :)
I guess this is a good lesson on listening and trusting your gut. I am thankful she will not have another surgery to go through with this.
I think we're all relieved this surgery isn't going forward, while remaining sad that Emmi's speech may remain compromised. When I think of how much Emmi has gained in recent years--the ability to communicate her wants and needs, to befriend a fully hearing child, sing a Hannah Monamonamontana (in Emmi-speak) song in full karaoke mode, to hear and understand us when we warn her of danger--I can feel only joy, however. I am relieved that this decision that you dreaded so much and agonized over for so long was made for you as I know you feared that it would cause terrible complications.
And isn't it wonderful to have people such as "Aunt of 14" sign on and offer feedback?
Mom
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