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Thursday, April 21, 2011

Blind Babies

In the beginning of March, we noticed that Makayla's eyes and vision development was significantly different than her brother's.  We took her to the pediatrician right away who referred us to an ophthalmologist and diagnosed Makayla with Nystagmus.

Nystagmus means a lot of different things, and it seems to be different in every person.  We are still waiting for Makayla to get to see a neurologist which will hopefully give us a lot more information about her Nystagmus, but for right now what we know about Makayla's Nystagmus is that it's "scanning" Nystagmus, so her eyes pan back and forth from side to side, they also occasionally jerk or shake.   Here is a video of Makayla's eyes panning back and forth while she plays on her back.

  video

We also know that Nystagmus almost always come with significant vision loss.  When Makayla was first diagnosed, we were devastated.  I remember coming home from the doctor and trying to figure out if she could see at all, and being convinced that she was completely blind.  But, over the past month, Joey and I have noticed that she does seem to catch things in her gaze from time to time and works really hard to focus on it.  

Recently, our pediatrician referred us to an organization called Blind Babies, a local non-profit organization who works with families of blind or visually impaired children to make sure they have all the resources they need to raise happy, healthy, normal children.  In the weeks leading up to our in home visit with Blind Babies, I have been anxious, to say the least.  I feel like being in contact with an organization called Blind Babies means I'm giving up hope that she can see, like I'm failing her.  I also have felt like they were going to get to our home and show us everything we were doing wrong for her.

Yesterday afternoon, we finally got to meet our "Vision Impairment Specialist" from Blind Babies.  She was very pregnant, and calm and quiet.  She was kind, but I sat there nervously and she jotted down notes and stared thoughtfully at Makayla without saying a word.  Finally, after was was probably ten minutes, but felt like forever, she started to bring out some toys she brought and played with Makayla.  She brought out a bright red, sparkly pom-pom and moved it slowly in front of Makayla line of vision and back and forth.  Makayla followed it, moving her whole head back and forth to keep it in her sights and finally grabbing hold of it once it brushed against her hand.  

My eyes filled up with tears!  She SEES! My baby girl sees! *huge sigh of relief*  I don't know how well she sees, or if she'll see well enough to drive a car someday, but I know that she will know when mom and dad smile at her, and beam with pride and joy.  

The visit was so encouraging and helpful.  The specialist left us the amazing pom-pom and some other useful toys, like a mirror, and some bells for Makayla to shake.  She also brought a very neat quilt that is solid black on one side, making it easy for Makayla to identify any toys that may be lying on it, and on the other side are unique textured for Makayla (and Ausin too, probably) to feel and play with during tummy time.
The tools and toys we received from Blind Babies
The specialist also told us that our dark walls and hard wood floors, make a great home for a baby with visual impairments!  Another relief! As parents we worry so much about weather we are doing enough or doing things right.  It's so nice to have such an important resource available and know that Makayla is getting everything she needs to do well and succeed in this world!

12 comments:

  1. I'm so happy that you are relieved and feel better! Only time will tell what happens next and I KNOW that the LOVE little M has in her life will ensure she is always, always happy.

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  2. darling ashleigh, you and Joey have so much love to give each other and those babies. You have access to all these resources and smart enough to use them wisely. Just remember we are here for you and Joey and the babies. But you know that. And we love you - and you know that too.
    deanna and grandpa

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  3. Wow. I'm going to have to read a recent post to see how everything is going. Nice to meet you. I'm visiting from Voiceboks HodgePodge.

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  4. @Kenya - Thanks for stopping by and checking us out. Recently, there have been lots of exciting updates and developments on Makayla. This should be an exciting year for us!

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  5. Ashleigh I remember having such a hard time anytime we did or joined anything that mentioned a developmental delay, which is what our daughter has. It seemed like I was "giving up" throwing in the towel, admitting there was no hope. Like you found out with Blind Babies, these groups can be so helpful and actually give parents hope. I also found so many resources from the different groups and schools we found. I think it's wonderful how you both are giving your children all they need. Sending so many prayers and good thoughts that you get the best possible outcome and that you have all the support you need!

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  6. I have lazy eye where I am "blind" in one eye and the other is perfect. I am so glad that you have the support around you that you have. I am blessed that none of my kids have lazy eye, but they go to the eye doctor about once a year to make sure everything is developing fine.

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  7. This is a great post. It reminds me of a book I read written by a New York Times journalist who was suffering from vision problems, he was gradually losing his sight. He also received visits from a similar organization. Although he felt resentful of them at first for rearranging his life, he eventually realized what a gift they were. Your daughter is lucky in so many ways, not the least of which of the parents she was born to.

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  8. How adorable. I just want to pinch those cheeks. So happy to hear your good news and things are moving in a positive way for you all. Sounds like Makayla is a fighter. Prayers to you and your family.

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  9. Thank you all for your meaningful comments. This past year has been an emotional journey for us, and we are excited to have some new options to explore for Makayla. Thanks again, everyone!

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  10. Hi, I just found your blog and am a new follower! I have two daughters who deal with nystagmus and who are legally blind. I look forward to reading more of your blog!

    Casey
    http://yestheyrallmine.com

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  11. Hi Casey! I'm glad you found my blog! Excited to connect with another Nystagmus mommy! Looking forward to checking out your blog too!

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  12. Ohhhhhhhhh she's SO cute I just wanna squeeze her!
    How old are the twins? I have a baby who is 4 ms old. (Just coming into his extreme cuteness!)

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