Wednesday, September 5, 2007

Pediatric Ophthalmologist - 2nd Visit

Last week, we took Emerson for his pediatric ophthalmologist appointment to check on his strabismus (eyes turning in). It was his first appointment since his diagnosis, but I went in thinking I was much more emotionally and logistically prepared this time. For instance, I carried in his full Early Intervention packet, a list of questions and paper to write notes on. I knew from the last time that waiting time could be several hours, so I also stocked up on plenty of toys to keep Emerson busy! Sure enough, we rolled in at four and finally went back at around 5 or 5:30 so they could give him dilation drops. I don’t know why they don’t just do this from this beginning because after entertaining a squirming baby for over an hour in a small waiting room, we then had to entertain him for another hour in the even smaller patient room.

I’m not sure which was worse, though – trying to keep the baby happy and awake, or trying to keep Robbie from touching every button and pulling open every drawer he shouldn’t be opening. Have you ever stopped to look at all the crap in an eye doctor’s room? Well, let me tell you, it’s an ADD nightmare…especially when you’re talking about an engineer who has to figure out how everything works. Since the office is for mainly small children, they had rigged up some of those cheap electronic dogs (the kind you buy in dingy mall toy stores that bark and move their legs back and forth). They had small red lights to replace their noses in an attempt to get children’s attention on a fixed spot. Robbie quickly figured out that pedals installed in the floor operated these dogs, so I cringed as he filled the office with manic barking and wondered if anyone had ever been kicked out a doctor’s office for something like this.

Finally, the doctor came in and attempted to exam a now-exhausted and increasingly ancy baby. The good news, he told us, was that his refraction was still fine – meaning he didn’t need glasses. And the crossing eyes were not bad enough for patching or surgery. The bad news was that glasses are the only option left to help them stay straight – meaning he did need glasses.

My heart sank. Throughout this journey, I keep saying to myself “He has this, but at least he doesn’t have this (fill in the blank) yet.” Now almost all those blanks have been filled. I tried to ask the doctor about contact lenses instead since it’s my goal to get them someday to add color to his eyes and help with light sensitivity. He brushed this off as unnecessary – which I suppose is true from a medical standpoint, but not from a cosmetic/social standpoint. He isn’t the one who has to track down infant frames (not easy we’re discovering) and then try to keep them on an infant who spends his days rolling around on the floor and chewing everything in sight. And he doesn’t have to be in Emerson’s shoes as he faces the world when he gets older. I suppose I am resigned to the inevitable for now, but I will not let Emerson start school in 5 years without contacts even if I have to go to a hundred different doctors. Kids are just too cruel.

The doctor told us to come back in four months to evaluate how the glasses were working, so I decided to ask as many questions as I could think of while we were there. He didn’t know what kind of albinism Emerson has because he’s too young to test, although the other parents on the NOAH website seem to know for their babies. He also didn’t believe in doing nystagmus-dampening surgery, even though many parents have said it changed their children’s lives. I walked out feeling more frustrated than ever. He’s an eye doctor, but not an albinism expert, so who do I believe – the people who are experiencing it with their kids or the medical professional? I think that’s one of the most frustrating things about dealing with such a rare condition…the treatments and theories range so widely that it’s hard to get consistent care and feel like you have all the information.

Like the other things we’ve been through so far, I am slowly working my way through the stages of grief toward acceptance while Robbie skips straight to acceptance. I am glad for his sake and later for Emerson’s sake that he’s so upbeat about it all, but it also makes me feel a little lonely at times. Thank goodness for close friends and family who will have a good cry with me!

So anyway, we’re now on to the great glasses hunt and will post pics as soon as we can get them purchased and on his face. Unfortunately, most baby frames come in bright colors (why not make them with blinking lights to get people’s attention?), are huge on their tiny faces, and are mostly round…which would make him look like Harry Potter with albinism. We have found two (count ‘em two) frames online that look somewhat decent, so now we have to cross our fingers and hope whichever one we order works. And that he doesn’t eat, crush or otherwise abuse these $200 investments on the first day. Oi vay.


  1. From what you've said, it seems that YOU are the person most upset about your sons ablinism. :) You are afraid that kids will be mean, you don't want people to look at him strange because of the glasses and you're sad about the fact that he is albino.

    If YOU see him differently and treat him differently out of fear of what society will say, then HE will always feel diffrent. However, if you treat it like it's not a big deal and show him that there is nothing wrong with being albino, then he will grow up knowing that he's just a normal kid :)

    Society and kids can be cruel, even to "normal" children. And, honestly, being albino is great! It's unique and exciting. It's something you should enjoy and not fear and be sad about :) Follow Robbie's example and be happy :)

    And yes, eye doctors tend to be oblivious about albinism. From one doctor to the next, you always get a different answer or diagnosis :(

  2. Cassi, you are doing great!! Trust me, kids aren't going to be as cruel as you think. Most of the kids will be envious of Emerson because he gets to wear glasses and has cool looking eyes. Ricky saw a boy wearing eyeglasses and he was begging me to get him a pair. Plus kids at that age only see a kid to play with, not the differences or the limitations. Once the friendship has started it will remain throughout the years.

    A mother will always worry about their child even when they are married and have kids of their own. The main thing a mother wants for their child is happiness. Just remember if they never experienced sadness, they will take happiness for granted and it will have no meaning.

    I believe Emerson isn't going to allow anyone to push him around. He's got you and pretty much everyone wrapped around his little chubby fingers.

    Seek second opinions, even third. If I was diagnosed with cancer from a doctor and they told me I only had one year to live...I would be going to several different doctors until I found one that said they would cure me.

    We love you! Emerson is doing great!