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Tuesday, February 28, 2012

Like a referee with a whistle!

It's official, like a referee with a whistle!  Makayla and I will be heading to Ohio in just a month and a half, to see the very best doctor in, quite possibly, the world, for Nystagmus.

I had several conversations with our insurance company last week and they confirmed that all the services from Dr. Hertle, including the surgery (IF Dr. Hertle thinks surgery is the best treatment) will be covered under our plan.  Unfortunately, the travel expenses will not be reimbursed, but I knew that was probably too good to be true.

I notified Dr. Hertle's office right away, that our insurance gave us the thumbs up, and they called me yesterday to schedule her first appointment with Dr. Hertle.

She will meet the doctor on April 18th.

That's just barely a month and a half away!  That is half the time it took me to get in with ANY of our local specialists!

This visit will be four hours long and in addition to meeting with the doctor, will include several tests.  As I understand it, all of the following tests will be preformed in those four hours:

I'm excited beyond words.  I was nearly hyperventilating on the phone while making the appointment.  My tummy flips every time I think about how much getting Makayla this appointment means to me.


I have to admit, I'm a little worried about how well a 16 month old is going to tolerate so much testing.  I know that for me, as an adult, by the time I'm done at my regular optometrist's eye exam, I've looked through so many "one, one, or two" slides that I just start blurting out numbers to get it over with since everything looks the same at that point.

The reading material that Dr. Hertle's office sent me says to make sure that Makayla is well rested before the visit since it will be a long day for her, but since this will be her first time traveling, I'm concerned she won't get much sleep.

I'm worried how Makayla and Austin will do being separated for the first time.

I wonder how the heck I'm going to travel, by myself, with all that I will need to care for a child under two.

I'm so scared Dr. Hertle will say the surgery isn't for Makayla.

I'm scared to death he'll say she needs the surgery.

But mostly....

I'm excited to know as much about her Nystagmus as possible.

I'm hopeful that we'll finally get an answer as to what is causing her Nystagmus and why.

I'm hopeful that we'll find a treatment effective enough for her to live independently, and enable her drive some day.  And that it helps her enough that she needs no intervention in the classroom and that she's able to make friends easily.


  1. what an adorable little girl! I hope everything goes well. I am so glad it will be covered but will think of you. I never knew about this problem unti reading about it.

    all the best to your family!

  2. Oh she is beautiful! Your concerns are probably what any mother would be feeling if they were in your shoes. I wish you the best! I hope all goes well and that something can be found to help that sweet little angel and her mommy out!

  3. I'm happy about your good news. That's a lot of tests, I must say!


  4. Thanks Ladies! All the well wishes we keep getting are really helping to put me at ease and know that we are really doing the right thing, even if it all seems a little overwhelming right now.

  5. Sending you prayers and comfort. I hope everything works out for you all. Keep us posted

  6. I just watched the video on the hospital website regarding Nystagmus to hear Dr Hertle talk about it! It was so informative & I loved seeing all of the tests & the surgery too! He seems SO great & clearly has done SO much research! This is SO exciting Ash!

    PS I LOVE the new look of your blog by the way, it is SO great!

  7. Sounds so exciting. I had to look up Nystagmus to see what it is. Once I read the symptoms, I recognized it as something 2 friends of mine have. Just to let you know, they both are living fulfilling lives! Keep us informed on the testing! Traveling alone with a toddler is going to be a fun challenge! Maybe she'll sleep the entire trip...wish!

  8. Hi lady!  Good luck with your appointments this week!  Are you all heading to Cleveland?  I will be sending you prayers for strength and for answers.  xoxo Andrea

  9. Thank you! We'll actually be be in Akron. We are so excited and can't wait to see what all the tests reveal!