This is Why They Pay Me the Big Bucks

By the time Charlie was three months old it was apparent that his vision was lacking in some areas. Even before the official assessments I had a gut feeling that things were wrong there. Usually, Charlie’s gaze was fixed to the left. On rare occasions he would look straight. I didn’t see any eye contact until he was four months old and even that was fleeting.

We had a vision therapist who came out to the house about once a month. We did not click. On her first visit, when Charlie was four months old, she brought a braille book. She also held up a piece of wax paper and asked me to look through it so I could imagine what Charlie’s world was like. Personally, I think I’m lucky I didn’t throw up on her. Talk about traumatic.

So, we “fired” the vision lady.

We went to this very fancy nuero-opthamologist–waited months to see her. She spun black and white drums and other oddities in Charlie’s face, pronounced that he was “trying” to see, and told us that she’d like an MRI. It was reminiscent of Willy Wonka and the Chocolate Factory. That, coupled with the fact that I had grown tired of having pictures taken of Charlie’s brain, led me to pick a new doctor.
So we settled on the doctor we see now. He’s on the faculty at Tulane Medical School, he’s been the head of the opthamology department, and he’s conservative in his approach to surgery. These are all things I like in a doctor. We first saw him when Charlie was six months old and I gave a full description of his medical history, but I purposely didn’t bring any films (for the un-initiated, “films” means pictures of your kid’s brain). I wasn’t trying to subvert the process–I just couldn’t take one more doctor gee whizzing over Charlie’s massive brain damage. It’s like they can’t help themselves; they take one look at those films and suddenly they can’t see anything else, so I removed them from the equation.
At six months, the doctor believed he could see and focus, but only on one side. Honestly, I was relieved. That sounded a whole lot better than blind and even made sense in terms of what I was seeing at home.
So here we are two years later. We paid another visit to the doctor and this time he was gee whizzing over how great Charlie looks. His vision field loss is no longer detectable. He does not use both eyes together, but he appears to be using both eyes equally so that means no glasses and no patching. He was thrilled with Charlie’s love of music and told me, “he’s going to be just fine.” He did tell me that Charlie would never fly a jet plane. I think I can live with that.
For me, this vision thing has involved a lot of going with my gut. I have stimulated Charlie’s vision at home using lights and black and white images. I was open to braille if that was the best option, but I never ruled out the possibility that Charlie would see. Finding the right team was key. “Doctor shopping” is apparently some tawdry thing that people use to get prescriptions, but in this case it felt exactly like shopping. I had to find someone who had the right mix of experience and optimism. Otherwise, I would have given up completely.
Today, after the appointment, the window on my car got stuck halfway down and I had to drive home for an hour in the rain like that. You know what? I still felt pretty good.

Please ignore my blatant disregard for fashion–the stripe explosion is hurting my eyes but he looks so cute I couldn’t resist post these pictures.

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Comments

  1. Nathan Charlan says:

    So they keep telling us that Zach is severely far sided but guess what for a child who they say cant see anything up close it sure is amazing how he will find a hair on the floor and play with it (looking at it too) for 30 mins or more. Last time I asked about this they said "I guess we can cut his prescription in half" and he has been doing great ever since. I wonder when they are really old enough for them to tell for sure. With out the communication piece it is so hard. Way to be a no nonsense Mom!!!

    Renee

  2. therextras says:

    Charlie IS cute AND fashionable. Looks like MckMomma dressed him:)

    Reading your journey through motherhood with Charlie feels good. You show the way for so many, encourage all, leave us wanting more after each post. Thanks, Katy.

    We couldn't possibly pay you what you are worth. Barbara

  3. Josephine says:

    I completely understand about finding the right doctor/therapist/etc. It's really important to feel like you and your medical professionals are on the same page. I'm so glad that Charlie is going to be able to avoid glasses and patching! Yay!
    And he is adorable in those pictures :)

  4. Way to go, Girl! We have gone thru very similar experiences..One dr wanted patching for 2 hrs and glasses for far sightedness all the time. For yrs, we tried but she hated them and kept loosing them. Now our new dr. says she doesn't need them at all, but she does need patching and possible eye muscle surgery. No wonder, she hated the glasses, if she didn't need them! It can be hard to find and figure out the right mix of dr/patient/parent stuff! Good for you, though, Katy! GOOD MOMMA!

  5. Small Town Girl says:

    I'm so glad that you found someone who could work WITH you and not around you. Always important when health is at stake!

    I always enjoy the Charlie pictures no matter what he's wearing.

  6. As always, you continue to amaze me. I feel like I can get some parenting confidence via osmosis through reading your blog 😉

    I love the stripes! I have similar pjs for Calum and I cannot get enough of those stripy pants.

  7. Every time that you talk about the progress you have made with Charlie and all the doctors/specialists, I know that you are doing fantastic! Keep up the great work, he is a great work in progress, and that smile of his is just infectious!

  8. Rural Felicity says:

    I adore the stripes! I'm very impressed with your figuring out things for Charlie. :)

  9. I'm a big believer in the "gut feeling." Good for you!

  10. I think it's great that you keep looking until you're satisfied with your son's care. And I love that you're not afraid to fire people! Honestly, the way you approach everything Charlie is truly inspirational.

  11. seemed like those guys just barrelled right in and put a big fat "done for" stamp on Charlie. I'm so glad you kept looking.

  12. Miss Burb says:

    so what kind of doc is he then? a neuro-opth? I had never heard of one of those till now. My son sees a regular opthamoologist and she doesn't give us any clear-cut answers regarding field loss.
    I like her pretty well and I think she's an excellent surgeon (not very personable) but I'm always looking to upgrade, lol.