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Update on Ruby. :(

She's completely deaf. 

Her deaf ed teacher, H and I had suspected she had more than just the profound deafness in one ear for awhile, but her other tests had come back normal.  Her ENT blew us off and acted like we were totally overreacting, but we pushed for additional testing.  She had a "behavioral" hearing test today.  The goal/hope was to get her to look toward the noise.  Not only did she not do that, when they looked at her physical response (eyes widening, blinking, sucking faster or slower on her binky, startling, etc.), she didn't flinch at a single sound - not even the ones that had me wincing.  The only thing that caught her attention was the sound that vibrated the room -- she felt it.

The audiologist said it has to be neurological.  The next step is another sedated ABR just to see if there's something the first audiologist missed and an MRI.  We've been doing some signs with her already, but I'm taking an intensive class at the end of the month and we'll be trying to incorporate more and more signing with our conversations.

I had a minor meltdown, but I'm still in a bit of shock.  I mean, we suspected it, but knowing for sure that she hears nothing is a pretty big blow.  I don't really feel sorry for her or us...right now I just feel sort of overwhelmed and helpless.  I just want to know what to do next and to have a full signing vocabulary like yesterday.

I know she'll be just fine.  My sweet girl is one of the most charismatic people I've ever known and she steals hearts everywhere we go.  It's still heart-breaking to know she'll have an extra challenge growing up in such a cruel world.  She has a wonderful support system, though, so hopefully that counters all the idiots out there.

I did get good news today -- I got a scholarship for the week-long signing class.  I can't wait to get started!

Re: Update on Ruby. :(

  • jln14jln14 member

    awesome about the scholarship!!! you are doing everything you possibly can to help your lil girl and i will keep you in my thoughts/prayers :)

  • I'm sorry, J :( I'm sure it was really hard to get this news. You have been so amazing through all of this and I just know that with a mom like you she is going to have a wonderful life. ((hugs))
  • Oh, hon.  {hugs}

    Knowledge is power, and that signing class sounds like a fantastic step.  Congrats on getting that scholarship!  I always knew you were super smart. Big Smile

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  • I'm sure that was hard to hear, but you will be a great advocate for her.

    I noticed at DDs swim lessons at diventures that her teacher would sign with the kid who took lessons after her.  His name was TJ and he was great.  I know she is young now, but she may be ready in a year or more.

  • That's great about the scholarship! I think it will be really exciting to learn to sign and be able to teach her to communicate - very cool! I know she'll completely thrive with you guys as parents!

    Second - really weird and odd timing! One of my friends came over tonight. He went to our high school reunion last weekend and was giving me updates on everyone. One girl we were friends with in high school had a son who is completely deaf. I'm not sure if it was neurological or not (I don't even know the different types) - anyways, her son had cochlear implants. I have no clue on his age or if he's talking, but I do know he is able to hear some sounds. I have no clue on how they work or anything like that, but I'm sure you might think about that in the future. Just thought I'd share a half way good story that I heard about tonight (again, odd timing!).

  • I'm sorry again, J.  I know it probably is a lot to take in as far as the "finality" of the ultimate diagnosis and actually knowing it for real.  But you will be signing in no time (and we will do our best, too) and she will not want for a loving, supportive, signing gang of peeps!  Those big brothers will go to bat for her too, for sure :)
    Blythe, born 6/5/10, and Oscar the dog (not pictured), adopted 11/16/07
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  • if you need to practice with someone I would be happy to skype with you. 
  • Ruby is blessed to have such wonderful parents!!!  Props to you for being pro-active and being your daughter's best advocate:)
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  • :(  You are taking a very proactive approach, I'm sure it's heartbreaking to know, but she will be loved so much! 
  • Congrats on the scholarship! You, DH and your boys will be signing in no time at all. Miss Ruby will pick up on everything so quickly it will amaze you. I started signing with R as soon as he was alert to what was going on and he picked up signs so quickly. He would sign to me in the grocery store and people would come up to me amazed and ask if he was deaf and why I taught him sign since he wasn't....You are gonna be able to communicate with Ruby (and her with you) way earlier than you could with the boys which will be an awesome experience.

    I took sign classes in college and have some workbooks that you could have if you are interested (I never wrote in them obviously). They really help.

    TheHaganDirt
    Married: 07.02.05
    Rilyn: 10.19.05
    Xavier: 09.21.11
  • Big hugs!  Hearing that final diagnosis can be hard but now you have a game plan for Miss Ruby.  She's a beautiful, happy girl who will grow up supported and loved. 

    * DS1...allergic to dairy, peanuts, eggs and turkey *
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  • ugh, I'm sorry Jess. Thats never easy to hear.

    However, that being said, who KNOWS what technology will be like 5 years from now, she may get her hearing restored to some ability, some day....so all is not lost. You are doing everything you can do for her, taking the sign classes, ect.....

    I wonder when/if/age they can be candidates for cochlear implants or something like the sort?

    You are very proactive with her health care, I know you will be aggressive with getting her all the help she can get. Hugs!

  • imagetiff-n-nick:

    ugh, I'm sorry Jess. Thats never easy to hear.

    However, that being said, who KNOWS what technology will be like 5 years from now, she may get her hearing restored to some ability, some day....so all is not lost. You are doing everything you can do for her, taking the sign classes, ect.....

    I agree. Don't lose hope that one day she could hear even the slightest sounds. You never know what will come out of this. Good luck with the sign classes. That's great you are starting them early. Hope it all works out!

  • You just amaze me.  I love your spirit.  I have nothing more to say than what has already been said.  You just keep being so awesome and your little girl will have some wonderful footsteps to follow.
    image
  • Like PP's have said...Ruby has a great set of parents and a great support system - as hard as that news had to be, I admire your outlook and positive attitude!  Hope the signing class goes well-

  • imagemamarazzi:

    She has a wonderful support system, though, so hopefully that counters all the idiots out there.

    You got that right, mama!  That's great about the signing class, yay!  You'll do great and she's going to be just fine.  All of the resources and support she has already...way to go!

    Hang in there...I can only imagine how overwhelming it feels!

    GOOD LUCK!

    Stefanie
    Happily Married Since 11.29.02
    Brayden Kenneth born 3.27.06
    Blaire Kay born 7.10.10

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  • Aw Jess. She is so lucky to have such a strong mama who advocates for her. And you are right, she will be fine.

    Awesome about the signing class!

    Tied the knot: 6.19.04 Mommy to 3 awesome kids: Maren 3/06, Tommy 12/07 amd Kolbe 8/09
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