This past Sunday Justin and I drove to Ohio to take Avery to see Dr. Hertle.  I think we always kind of knew at some point that was in her plan, but it always seemed so far away and it is hard to believe that the appointment has already come and gone. We left on Sunday right after lunch…just me, Justin, and Avery…so sort of like a vacation in a sense being that we only had one kid…lol!  The drive to Ohio was only 5 ½ hours…for some reason I had thought it was much longer than that.  The drive was absolutely beautiful, especially the first 3 hours. I had actually never driven those roads before so I was probably expecting normal highway conditions but for the most part it was a two lane not heavily traveled road through mountains and picturesque scenery that looked like it came straight out of a book. We could not have picked a better day of the year or a time to do the drive.  I truly mean that as even the drive back was not nearly as gorgeous as the drive there as MANY of the trees had already begun to lose their leaves.  The fall foliage coupled with the natural scenery was just breathtaking.  Justin was driving and I know he wanted nothing more than to be able to take pictures of it ALL!  Sadly, we didn’t take a picture of anything.

We started talking to Avery about the appointment a few days prior and she understood that she was going to see Dr. Ellis’s friend Dr. Hertle and he was going to look at her eyes.  (It is just so crazy how much kids understand from an early age especially when it comes to a medical condition.)  The appointment itself went well.  We were there for about 3 ½ hours.  We first met with a nurse, and then Dr. Hertle for the initial consultation.  Avery then had three types of testing done.  The first was done by the nurse and Avery was presented with white cardboard slides that had zebra stripes on them with increasing degree of difficulty in identifying the striped zebra lines. They did the test three times…once with both eyes open, and once with each eye patched.  It was determined that with contacts and using both eyes, Avery’s vision is actually not that much worse than the average child her age.  When utilizing one eye at a time, her vision further decreased, but that is typical for any child when one eye is covered. The second test was an Eye Movement Recording (EMR).  This was interesting as Avery was supposed to sit still for this as she looked at images on a screen (Elmo, Big Bird, Ernie, etc.)  While she cooperated, she was a 2 year old cooperating and kept moving her head, but the doctor said he got what he needed…hopefully he really did.  The third test was a Visual Evoked Response (VER) which electrodes were attached to Avery’s head as she watched a red dot on the screen. The red dot was covered by spiders on a stick that Justin had to use to entertain Avery to keep her eyes focused on the red dot. We made up every story we could think of with the spiders…they went to the park, to the grocery store, to the park again…it was quite comical…it kept Avery’s attention though and that was all that matters.  Even when we got back home, Avery was still talking about the test and the button (electrode) and the spiders (red dot cover up).

After those tests were performed, Avery’s eyes were dilated and she was further examined by Dr. Hertle.  Dr. Hertle basically confirmed a lot of what we already knew but we probably needed to hear again by him.  With regards to her diagnosis, he feels that the small eyes alone were enough to cause the nystagmus as the first few months of a child’s life are crucial in visual development and with a lot of the components of her eyes just being a little smaller (optic nerve, cornea, retina, pupils, etc.) she didn’t have the “camera” that she needed to develop normal eyesight.  He further said she would have likely developed the nystagmus even without the cataracts just as a result of the small eyes. He said that her eyes basically stopped developing at 6/7 months in the womb.  He felt that her care to date has been great and that she has been seen by some of the top doctors in the country.  He said that her eye sight will continue to improve even into her teens and her nystagmus will become less noticeable and the physical appearance of her eyes will likely get a little bigger as well.  With regards to the next step, he does feel that she will benefit from surgery; surgery to correct the strabismus, but also the nystagmus and the null point (those would be improved…not necessarily corrected.) Previous doctors have also told us that the nystagmus surgery can be done as part of the strabismus surgery by cutting additional muscles.  Dr. Hertle has been the first person to suggest that Avery does have a null point.  He feels that her constant head down, lid down position is in part due to light sensitivity but more so due to the fact that when her head is in that position her eyes move less in that position….thus her null point.  Dr. Hertle suggests operating on the null point as well although he was up front that the measurements for the null point portion of the surgery are small, medium, and large and because it isn’t exact as well as the fact that children’s null points can change during child hood, he said 20% of children will require a second surgery.  (Personally I think the statistics are even higher than that based on the persons that Justin met at the ANN Conference this summer). Dr. Hertle said the important piece was getting Avery to see him to have the tests run so he can determine the type of nystagmus.  He said he would happily do the surgery, but also happily work with another doctor who could perform the surgery.  He would just want a follow up again at his office at some point so he could redo the tests to determine the results of the procedures. Dr. Hertle also said that he would suggest surgery sooner than later but sooner could be anytime within the next 9 months.

Avery was very well behaved not only at the appointment but all weekend.  She did great in the car and each way slept for 2-3 hours and the remaining time was content to hold her blankie, her baby, her paci (yes, I know I need to take that away soon), sing, and talk to Mommy and Daddy. She was constantly on the move in the hotel room and we had to keep reminding her to stop dragging her blankie on the floor.  We let her jump on the bed as part of the hotel experience (she only fell off once and to be precise she wasn’t jumping at that time).  She even went to bed without any pushback despite the fact that she was in a pack n play and Justin and I were right there in the room.  The second night we even rewarded her with ice cream for being so well behaved at the doctor appointment.

The visit to Dr. Hertle was well worth it.  I think we are leaning towards Dr. Repka doing the surgery and probably sometime this spring.  We need to get some things squared away at home first and think more about the surgery and further questions to make sure we are fully prepared and educated. But I don’t think we feel too rushed to do that and I also don’t feel overwhelmed about the outcome of the appointment.  It was further validation that Avery’s condition is random and not genetic in the sense that Justin and I passed it down to here.  Furthermore, Dr. Hertle said Avery’s chances of passing it along to her children are even less…for example 1 in 25,000.  And the truth is we don’t need any doctor to tell us Avery is going to be okay.  A lot has changed since Avery was 3 months…at 3 months we were wondering if the cataract surgery was truly successful….at 6 months we were wondering if Avery could see….and at 2 years and 3 months, Avery has proven that not only can she see, but also that she is independent, smart, competent, loving, and quite the comedian.