Spinning the topic wheel for the first time...

Round and round it goes, tick, tick, tick, tick, the topics whirl around, tick, tick, tick, tick (I'm building anticipation and excitement so that the reader will want to see how this turns out. Its a literary tool.) And our topic today is..."Doctor My Eyes". Awesome, I've got alot to say about Jackson Browne, been wanting to blog about him for years.

Jackson Browne, who's first name is actually Clyde, was born October 9, 1948. He is an American rock singer-songwriter and musician. His political interest and personal angst have been central to his career, resulting in popular songs such as "Somebody's Baby", "These Days", "The Pretender" and "Running On Empty". In 2004, Browne was inducted into the Rock and Roll Hall of Fame by fellow American musical artist and good friend, Bruce Springsteen. During the same year, Browne received an honorary Doctorate of Music from Los Angeles' Occidental College for "a remarkable musical career that has successfully combined an intensely personal artistry with a broader vision of social change and justice"....

Wait, no, I was going somewhere else with that topic. I apologize for all of the confusion. What I actually wanted to talk about was Thomas' eyes. I know, I know, another blog entry about Thomas, I'm in a rut. I'll revisit Jackson Browne in the future. Anyway, Thomas' eyes have been a constant source of angst and concern in the Elliot household. Let me catch you up on what has progressed.

I think even before Thomas decided to enter this world early, he wasn't playing with a full deck in the eye sight gene pool. Rebecca is legally blind (yup, that's how I got her) and everyone in both of our families has some form of 4 eyes syndrome. I'm the lone anomaly. I laugh at eye charts and read the manufacturer at the bottom just to show off. Thomas' time in the NICU and on ventilation led us to the tough decision about ROP surgery, which I documented here. Just as a refresher, preemies that spend a significant amount of time on ventilation grow an overabundance of blood vessels in their eyes due to the oxygen. This leads to a significant risk of retinal detachment. ROP surgery takes care of those blood vessels, but can have its own side effects, including limited peripheral vision and vision loss. I also documented our follow up visit to see how the surgery went and that we got an A-OK, but that particular doctor was only judging mechanics and we would need to go to a second eye doctor to see what Thomas could see. All along the way, there were mixed signals about how is eyes were. Many nurses and therapists commented on how well his eyes were tracking (following objects). On the other hand, we could never get Thomas to look at us when we were holding him. I felt like one of Donald Trump’s servants, completely invisible. So, time came to go to the Ophthalmologist, which is different than an optometrist in a way that Rebecca could tell you for hours on end, but it’s not really germane to our story so I won’t bog.

So the set up was another examining room, the doctor had Rebecca sit in the examining chair with Thomas sitting in her lap. The lights go out, the doctor sits on a stool in front of Thomas and the assistant or nurse stands behind him. I sit in a chair against the wall, observing. The lights go out and goofiness begins. So Rebecca is holding him, the doctor is leaning in looking through one of those things that shine a light in your eye and the nurse is holding one of those multi-colored lighted pinwheels they sell at the circus. So for the next 15 minutes, the doctor would hold up different combinations of lenses to each of Thomas' eyes while the nurse spun the pinwheel and attempted to get Thomas' attention. Seemed really goofy to me, but I didn't go to school for this stuff. In the end, the doctor gave his assessment.

He believed that based on him looking through lenses into Thomas' eyes that Thomas is extremely near sighted, to the tune of -7 in one eye and - 9 in the other. Rebecca's eyes were -10 before she got lasered just to give you the blindness reference point. Basically, he believed that Thomas could see about a foot in front of him, everything else would be a blur. This took Rebecca and I completely by surprise. My immediate thought was, how can you possibly tell that by looking through lenses at a baby who certainly isn't capable of reading an eye chart or telling us what he can see. The doctor assured us that he's usually pretty good at this (cocky) and that the logical next step would be glasses. Not in a few years, but right away. He then shared with us a pamphlet with pictures of babies and little children wearing the most god-awful glasses I've ever seen. They were all round, pastel and just plain not cool. Apparently for babies, the glasses need to be flexible, which I'm ok with and ugly, which escapes logic with me.

Much like the multitude of other times that a medical professional shared with us difficult information, we took it in with a bit of numbness and tried to be as factual as possible in our questioning. The important thing is to get his eyes help sooner than later so that Thomas' development isn't stumped. Laser surgery is not an option until the growth in his eyes stops growing, which is typically in a child's teens. The doctor also saw a slight nystagmus, which is an involuntary movement of the eyes, kind of like they dance back and forth. I believe this is related to weak eye muscles which would also be helped by glasses.

Not wanting to believe what was probably true, we chose to wait til after our impending visit to the Retina Foundation. Because Thomas is a preemie, this was another "perk" that he gets. We weren't exactly sure what this was about, but looked at it as a possible second opinion on the condition of Thomas' eyes. It was a couple weeks after the appointment, so we spent most of that time staring at Thomas' eyes, wondering if he could see us. It was very disheartening and frustrating. After all we had gone through, we had thought that we'd cleared all of the hurdles and were home free. Thomas seemed blissfully unaware and happy.

The Retina Foundation can be found in a non-descript office building. Much of the furniture seemed semi-mismatched, possibly donated. It did not have the same feel of success that the offices of all of the other specialists we had visited had. We started out with the requisite paperwork that comes with each new visit. Rebecca is in charge of this, while Thomas and I find ways to be entertained. From there, we were led into another waiting room. This is where we learned a little about the Retina Foundation. Basically, its a study, government funded I assume, around vision in babies. Most of the doctors participating in the study were actually PHDs rather than MDs. The test was fairly odd. Rebecca and Thomas sat at a table and a very clinically focused lady sat across from her. Although the study is focused on babies, she clearly didn't have alot of experience with or interest in babies as anything other than test subjects. In front of the lady were a stack of hard backed posters. On each poster, there were 2 squares, one of which would have vertical lines on it. Depending on the poster, the lines were either very broad decreasing down to so narrow it was difficult for me to discern. The whole concept was that a baby's eyes would be attracted to the vertical lines and they were testing Thomas' ability to track to those vertical lines. To make things more interesting, they put a patch over one eye, and tested each eye separately. So the lady would flash a card, Thomas would look at the poster and when she saw that he looked at the right area, she would say good, tell her assistant some code and go to the next card. To keep Thomas looking the general direction of the cards, she had a little device that would play music very loudly, over and over.

I found the whole thing kind of silly. Mostly because Thomas looks all around naturally, eventually he's going to look one way or the other. They repeated cards to minimize blind luck (no pun intended), but it still seemed circumstantial and anecdotal at best. After pushing Thomas' patience, we were thanked for our time. In relation to the tests, Thomas did extremely well and tested in the top percentiles within the study. The results go to the Opthamologist, but basically it was not really the second opinion we hoped for. So we're back to where we started and have resigned ourselves to getting Thomas glasses, but I intend to make them very cool, skull and crossbones cool! We go back to the doctor in October to get Thomas sized up. Rebecca has also reached out to her colleagues in the optometry world who have given her reassurance that technology is progressing really well and that Thomas should be able to see and function just like anyone else.

Its still rough. We spend alot of time worrying about Thomas' eyes. I want him to have every opportunity, just like any parent would and it feels like a real possibility that Thomas will struggle learning or not be able to participate in a sport or something. It weighs on both of us and the unknown is scary. Thomas is just darn near perfect and we really don't want to see him go through anything else. I think he's had enough.

Until next time I spin the wheel...