Just to give a quick update...
We won't know the results of the MRI for a while, because I guess the radiologists in Lancaster are too inexperienced to read the MRI for what I'm looking for. It's been a long few days of many phone calls and frustrations, but I've realized that I will have to send the films to CHOP and have them read them there. Who knows how long that will take. The next appointment with the ENT at CHOP is August 20, so we might not even know until then. I really hope sooner though, as I am very, very anxious to hear.
On a different note, Lucas now has a speech-language pathologist (SLP) who has a lot of experience with HOH kids, and despite a very busy schedule, is willing to take on Lucas because she has a big heart for HOH kids. I have heard so many good things about her, and I really look forward to working with her.
Although we are signing with Lucas, it is no longer our first priority. It will be an excellent way to bridge the communication gap with our son (as it is with all babies), but our real goal is for him to listen and speak. I really figured that out when I sat down with the AV therapist at CHOP and we made up a dream sheet. She asked me where I wanted Lucas to be in a year, in 5 years, in 10 years. I realized that my goal is not for him to be fluent in sign language, but rather to be speaking and listening, period. Although we're not throwing signing out, AVT (auditory-verbal therapy) is our new priority. Some families with profoundly deaf children do not sign at all, so it's not impossible, it's just a different way of thinking. We're still doing Total Communication, but with a big AV emphasis.
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6 comments:
That is exactly where we are, too. Ben has started AVT and while we do a little bit of signing, our goal is to have learn to listen and speak - our first priority. In answer to the question you left on our blog - the other CI center we went to was University of Virginia. Everyone was very nice there, but they just do more CI surgeries at Johns Hopkins. Keep up the good work!
Kate
You're doing great mom. We didn't use sign at all and my children are profound and speak and hear well w/their cis. My son wouldn't sign, he just wouldn't and we did try. My daughter has shown a recent interest in it so we are teaching her some since she likes it but it's not really used for communication. He'll do fine and you're obviously doing the right thing, he seems very loved and happy. Sedations suck I know, my son had like....hmmm at age three I stopped counting and it was over 15 at the time.
Hi We are a little farther down the CI road. Our daughter, Allison is 5 and was implanted in Jan 2005 with her 1st and on April 21st of this year with her 2nd. She is totally oral, no sign language at all. She did know some, but stopped using it on her own once she began hearing with the CI. Allison will be heading to K in the fall in a totally mainstreamed class. She is doing great.
Welcome to the this wonderful journey. I am here if you need to speak to someone who has been there, done that.
We don't sign with Drew, although I'm trying to get him to learn "no" and "stop" with sign right now for when he is splashing in the bathtub! You might throw those ones in. They'll help down the road! :)
We're probably going to do a little bit of sign with Aiden, but our main focus is on hearing and speaking too. Our priority is his AVT and then we will work on some signs with his Teacher of the Deaf from ECI. I know what a waiting game this must seem like right now! We see the ENT tomorrow and I'm already anxious about it! Take care!
Tammy
Such a cute baby! I hope you'll consider adding your blog to the aggregator at Deaf Village (www.deafvillage.com) --we'd love to have you as part of our community!
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