Sunday, March 13, 2011

Cochlear Implants for our Little Girl


Most of you know our little girl is deaf.


She wasn't born deaf.


We think around age 16 months, she began to develop a progressive loss that occurred over an unknown period of time.


In April of 2009 she was diagnosed with Enlarged Vestibular Aqueduct Syndrome.


This caused a severe to profound loss in her right ear and a moderate to severe loss in her left ear.


She's been wearing very powerful, digital hearing aids since her diagnosis.


And to date, this hearing loss has remained stable.


Most kids with EVAS eventually lose all hearing and we expect this will happen with Ashlyn.


She turns 4 next month.


And honestly, we've hit a crossroads.


Due to the nature of her hearing loss, treatment has been tricky.  Always borderline.


We did not want to rush to any decisions.


We know that once she's implanted, she loses ALL of what little natural residual hearing that she has.


We also realize that with speech and language development, time is of the essence.


And we've prayerfully considered each step in her education and treatment.


We recognize that in the deaf community, this is a HUGE deal.


There is great controversy.


It is a very emotional issue.  Understandably.


We want to be sensitive.  And struggle with what could be viewed as us selfishly removing her from that community.


Or ever making her feel like there was something "wrong" with her that we had to correct.


On the other hand, we struggle with withholding amazing technology that will likely make life easier for her.


We're not trying to "fix" a problem.  We do not think there is anything "wrong" with her.


We think God made her beautiful and perfect and the way He intended her to be.


And just like I wear glasses and contacts to help my eyesight,


Ashlyn will wear Cochlear Implants to replicate hearing better than her current hearing aids can amplify it.


She has her initial screening at U.C. San Francisco at the end of this month.


Please be in prayer for us during this process.


We are excited and anxious.  And confident that this is what's best for our daughter and our family.


And you'll probably be "hearing" lots about it... ;)

10 comments:

  1. Prayer for you little girl AND for you and your husband as you take this journey with her. i understand that it's a controversial decision, but as parents I like to believe we always do what we feel is best for our children. Which is what you are doing.

    ReplyDelete
  2. LOVE this girl. LOVE.

    I think you should probably hurry up and do it so she can be blessed with hearing more of my beautiful voice.

    I mean, Kayla has already told me how awesome it is. I hate for Ashy to be deprived of the same joys. ;)

    <3

    ReplyDelete
  3. i will keep her in my prayers! i love dear ashy. lots of changes for the johnsons.

    ReplyDelete
  4. Praying for you guys! The Lord can do exciting things through Ashlyn and you guys either way you decide!

    ReplyDelete
  5. Will pray for you. Tough decisions. Can't wait to meet you in a few weeks!

    ReplyDelete
  6. Oh my heart is heavy for ya'll, I could feel it in your words. Thank you for sharing your journey to such a big decision, praying with you!

    ReplyDelete
  7. prayers for you and your sweet family, my friend!

    ReplyDelete
  8. Jennifer ChristgauMarch 16, 2011 at 7:53 AM

    Hi there, I know she'll do great. She's got a wonderful family and that's half the battle. From my experience with kids with the implants they do thrive and learn to accept the hearing loss and function exceptionally well. I wish you the best of luck!!!

    ReplyDelete
  9. praying for your sweet girl and your entire darling family!

    (love your blog!)

    ReplyDelete
  10. praying for your precious little girl right now.
    i can't imagine how hard this must be on your mothers heart.
    love and hugs to you.

    ReplyDelete