It's a brave new world...

On Monday, April 4th, Teenie Bird and I made the much anticipated trip to the opthamologist to learn more about her vision. The eye clinic, which was so vast it seemed to be the size of a small hospital, is located about an hour from our home.

I was very nervous about making the trip by myself because I don't like driving somewhere I've never been, especially with Teenie Bird in the backseat. Thankfully, I was able to borrow a friend's GPS system and after much fooling around with it (added with the directions I printed off from Google, to be double-safe) we managed to make it there safe and sound. And we were only 5 minutes late! I just pretended I forgot that we were actually supposed to be there 15 minutes before our appointment time to fill out yet more paperwork....but the lady at the front desk was very nice, regardless!

After a short wait in the toy room, the first nurse led us back to an examination room and took a look at Teenie Bird's eyes. I waited anxiously for what we would learn...Can Teenie Bird see? Could she have Cortical Visual Impairment (essentially inconsistent blindness)? What will I do if she does?

Though we had previously been to an optometrist in our small town, I simply wasn't satisfied with that doctor's findings. After two visits with him, he insisted Teenie Bird's vision was fine, any glasses prescription would be very minor, and said surgery would not help her lazy eye, to which he attributed to her hypotonia and it would resolve itself as her muscles got stronger.

I disagreed. It was essentially a "wait-and-see" approach to her care, and sorry doctor, I'm not a "wait-and-see" kind of mother. It was unacceptable. Our last visit with him was in September, 2010. At the time, my husband said: "I'm just curious how many specialists it's going to take for you to believe she's fine?"

I knew there was a good likelihood I was crazy, but I also felt with conviction that we were Teenie Bird's advocates, and since she couldn't speak for herself, I intended to speak for her until someone would listen.

Nearly 8 months later I'm still pursuing this issue, and we've since seen a geneticist, neurologist, had an EEG done with an MRI to follow in a few weeks, and are still planning on seeing an endocrinologist. We've learned a lot in the past several months, and I feel significantly better my gut instinct was more on target than I could have realized. Of course, I would much rather nothing be wrong with my child, but when you know there is, all you want is answers.

The nurse at the opthamologist's office told me they would dilate Teenie Bird's eyes, and would look into the back of her eyes to determine what exactly she sees and how much she can see. They would also take various measurements of her eyes.

The nurse was very kind and patient and used a few different tactics to get Teenie Bird to follow where she pointed and to look through the lenses she indicated. I was very proud of Teenie Bird, as she was amazingly calm and cooperative the entire time.

"For her age, she's doing remarkably well," the nurse said.

"Yeah, her sitting still for examinations is an upside to seeing so many doctors!" I said.

A smiley button nose!

At one point, the nurse used a smiley face sticker and put it on her own nose to get Teenie Bird to look directly at her. Of course, Teenie Bird's first instinct, when she had control over the sticker, was to do the very same thing. So, she did. After awhile the nurse gave her a second sticker, and we each played with putting it on each other's noses. At one point, the nurse got up to check when the doctor would be available. I stood up to rifle through our bag to grab the camera and take a picture of Teenie Bird and her cute button nose...but I forgot I still had the sticker on my own nose.

Of course, the nurse took this opportunity to walk back in, as I'm standing in the middle of the room holding my camera, and both Teenie Bird and I have stickers on our noses.

"Oh, that's so funny," the nurse said and laughed. Oops! I shrugged and smiled rather sheepishly. It was too cute to pass up!

Being silly...

It turned out to be a very lengthy appointment as we were led from room to room. We sat in the first examination room for 10 to 15 minutes, before being led down a long, winding hallway to a second one where the doctor would visit with us. The female doctor came in and was very friendly and reviewed her file with us. I handed over multiple reports for their file, including the vision therapist's analysis of her eyes, from October 2010, the geneticist's report, and the latest physical therapy report.

They dilated Teenie Bird's eyes, waited five minutes and added yet more solution. The poor kid, she handled it like a trooper! After being led back to the waiting room for 20 minutes, we were brought back to the same examination room, and again waited for the doctor to come in.

Waiting for the doctor

I was happy when she concurred with the optometrist's initial finding, that Teenie Bird CAN see, and in fact, the strength of her vision is very good. For the time being she does not need glasses. I was also relieved to learn, after mentioning, somewhat shyly, the condition Cortical Visual Impairment (I told her I know doctors just love it when mothers come in having already diagnosed their children) that her symptoms do not match up with it whatsoever. What a relief!

From there, though, the diagnoses from the optometrist and the opthamologist differed. She informed me that what Teenie Bird has is a strabismus, also known as a lazy eye, a visual defect in which the eyes are misaligned and point in different directions. Interestingly, strabismus is a common condition among children and in fact, about 4 percent of all children in the U.S. have strabismus.

The form of strabismus Teenie Bird has is Exotropia, or an outward-turning eye, which occurs most often when the child is focusing on distant objects. According to the brochure she provided me on Teenie Bird's condition, the Exotropia may occur only from time to time, particularly when a child is daydreaming, ill or tired. Uh-oh! It appears a daydreamer begot a daydreamer. I should have known!

Though glasses, patching, or exercises may reduce or help control the outward turning of the eye, surgery is often required, which is what she recommended might be needed in the future to help Teenie Bird's depth perception.

She first wanted us to solve several remaining puzzles before she would ever attempt surgery on Teenie Bird's eye including: whether there are any neurological issues causing Teenie Bird's condition, which should be answered with her April 20th MRI of her brain, and whether or not Teenie Bird has Malignant Hypothermia, which would significantly affect their use of certain anesthetics for the operation.

"You know she looks a lot better than I expected her to look," the doctor said to me, which sounds sort of crude, but I understood her meaning. "After reading about her on paper in all the reports, I was expecting a child with a lot more difficulties. But she's managing quite well for everything she's been through."

I was relieved she noticed! Teenie Bird has made a lot of progress and she has overcome so many difficulties!

We walked out of there feeling very good about ourselves. The nurses loved her and Teenie Bird behaved and got a sticker for her efforts. We both passed the eye doctor visit stress test! Whew! We are to return to the opthamologist June 8th for another measurement of Teenie Bird's eyes to determine if the Exotropia is continuing to get worse or is remaining steady, the results of which will influence if and when they do the surgery.

To reward ourselves I happily punched in the address in the GPS to my favorite restaurant: Olive Garden! Yes! I considered ordering something else, something healthier...but, really you only live once, right?

Hm-mmm! Yum!

Fettuccine Alfredo

Oh, it was so worth the $9 AND the calories.

And, since I promised Teenie Bird ice cream (which she's only had about 5 times in her life) for her good behavior, we went all out! This kid deserves something really great for her patience, her understanding, her politeness, and her sweetness. She thinks every kid goes to the doctor as much as she does and she asks me nearly every day if she has to go to the doctor again. I don't know what breaks my heart more: her naivete or thinking going to the doctor is exciting. There's so many exciting and beautiful things in this world this kid has yet to see.

Oh boy! Whipped cream, hot fudge, and ice cream! Yes, yes, yes!

She told me it was so worth the money and the calories...

Until next time, friends!