SLIDER

Sad News

Wednesday, February 6, 2008

Yesterday afternoon, Caroline was unexpectedly diagnosed as legally blind. We knew that she had some problems with sight, but at her last eye appointment, her doctor wasn't sure about the extent of her sight problems - she thought that perhaps Caroline may need glasses and/or surgery to see better.

But, yesterday was the first time she used the term legally blind. She said unfortunately there's nothing to be done - no glasses, no surgery will help. The problem is in her optic nerve - optic nerve hypoplasia, plus a few other issues.

Her vision is at 20/600, which means she can see light, big objects, like faces or big stuffed animals or items with high color or shine, but no details. So, the doctor referred us to the Nevada Blind Children's Foundation and said she was sorry there isn't more we can actively do to help Caroline. I already have an appointment on the calendar to get a second opinion, but this doctor is very well respected and I have little reason to doubt the diagnosis.

We're sad and disheartened. We keep hoping that Caroline's abilities will start improving but we mainly have plateaus and setbacks. We don't really know where to go from here, other than to say that this is how she was born, this is what she knows, so it probably hurts us more than her. She's still our same, precious girl and all we can do is seek to understand the purpose of her life and our life with her.

10 comments:

  1. I am so sorry to hear this. It's hard getting one trial after another. She is lucky to have such wonderful loving parents that care so much about her. Our Prayers are with you.

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  2. Erica,
    I read your blog a lot, but don't often post.
    I couldn't not post today.
    You truly inspire me to be a better person and mother.
    Our prayers are with you three!

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  3. Hello Erica. First of all, I need to explain that if you believe this e-mail is intrusive or an invasion of your privacy, I sincerely apologize in advance.

    My name is Christopher Sabine, and I read your blog post concerning your daughter Caroline and her recent diagnosis of Optic Nerve Hypoplasia. I am an adult who also has ONH, and like your daughter Caroline, my vision is 20 /800. Glasses and other visual aides are not effective for me. I use a cane and other techniques of blindness in my daily life, such as Braille and other technologies that I'm sure you will become very familiar with as your daughter grows and hopefully thrives.

    I understand if all of this is very disheartening, confusing or even dscary for you, but I need to assure you that many, many children with ONH (and many blind children) grow up to lead happy, healthy and productive lives.

    I urge you to contact me or visit my Web site if you need any information on the potential of children with ONH or would like to reach me directly. My Web site is located at http://www.onhconsulting.com. You may also reach me by e-mail at info@onhconsulting.com or call me Toll-free at (800) 490-5529. You might also want to join FOCUS Families, which is the only international support group exclusively for families of children with Optic Nerve Hypoplasia and related conditions. There are also several adults including me who are active members of FOCUS Families. You can visit the FOCUS Families Web site and join the listserv on Googlegroups by visiting http://www.focusfamilies.org.

    I have a Master's degree in Social Work and have worked for five years as a case manager and service coordinator for children with chronic health conditions. I currently operate a small business that serves children with ONH exclusively. While I do have paid customers from my Web site, this is not a paid advertisement for my services and NOT a spam. If you don't feel comfortable reaching out to me right away, I will understand completely.

    I commend you for taking the first step and referring Caroline for services from the Nevada Department for the Blind. Early learning and intervention is extremely critical for all blind children to help them develop fully, but especially children with ONH.

    I wish you all the best in raising what is hopefully a beautiful, happy and healthy young lady.

    Sincerely,


    Christopher R. Sabine, MSW

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  4. My parents asked about you the other day. Just know we think about you guys. I can't imagine what things must be like for you but I know they must be very hard and I believe you will all be blessed now and in heaven for what you are doing. You guys are inspiring and such great people. I can tell that Caroline seems like such a sweet girl.

    And I wish we could come to Vegas and see that Beatles show!!!

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  5. Erica-
    These setbacks and plateaus must be so discouraging. I appreciate you being so open about your circumstances. Just from reading you blog I feel like I learn so much from you and Bryce on how to not just deal but live and love with adversity and trials. Also, I was glad to read the person Chris' comments on outreach programs available to you and your family. What an inspiring family you have...thanks for sharing.

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  6. I think it's too early to call you, Erica, but I probably will later today. I am very saddened by this news. I know you posted it a while ago, but Uncle Phil & I were out of town for a long weekend. We love you and think you are tremendous parents and loving people. I put Caroline's name in the temple this weekend. I do at least once a month, so I know there are lots of prayers ascending to heaven in her behalf. We love you and continue to pray for you all, Aunt Kris

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  7. I think I need to be more diligent about reading your blog. I just subscribed to it, so hopefully that won't happen again. I have been out of the country on my craziest recruiting trip yet. I did get your email about Bryce's new job though. That's really exciting. Congratulations. But I want to know how are things going with Caroline since you got this news? How are you doing?

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  8. Hi Erica.... This is Rachel Fernsten. I can't believe I haven't talked to you since we lived in the Elms a LONG time ago. I just came across your blog while I was looking for something else on the internet. I would love to see how you have been. How can I get in touch with you?

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  9. Hi Rachel,

    Sorry I haven't responded sooner - I didn't notice there were new comments on this post. Give me your email and we'll be in touch. Great to hear from you!! I miss those Elms days.

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