Rough patch

This is a rather tedious post. But I can’t help it. Understanding Stella’s visual issues involves a level detail that hurts my head. I have to give each individual brain cell a pep talk before attempting to absorb anything.

Tomorrow, we will attend Stella’s first session of vision therapy. I am nervous, excited and hopeful. At the same time, I’m confused and scared, because I suspect Stella’s eyes are getting worse. She’s been taking off her glasses and rubbing her eyes a lot more lately. It’s harder and harder to get her to wear the patch (Magic Tape over her glasses’ right lens, so as to make her weaker left eye work harder and get stronger). I think her eyes crossed today while I was changing her diaper–and her glasses were on. Not good. I wonder if her prescription needs to go up. A very optimistic part of me that rarely sees the light of day (for good reason, probably) wonders if the prescription might need to go down, but that makes little to no sense. I wonder if patching is somehow making things worse, namely by weakening her strong eye. Something is OFF right now. I can just tell. I don’t feel so sure that we’re on the right track anymore. I thought I had this pretty much figured out, but not anymore. I’m terrible at dealing with uncertainty. But nothing is ever certain, is it? Sucks to be me.

The specifics about Stella’s vision issues are still annoyingly hazy to me, which I can barely stand. I’ve been trying to read studies but have a hard time making sense of them nevermind applying them to Stella’s unique visual situation (which again, I don’t fully understand, so how to know what research applies to her?). I’ve emailed her doctor, only to get brief, confusing replies that include attempts at reassurance without any real clarity. It’s frustrating as hell. There are conflicts between what different doctors have told us and I’ve never been able to fully reconcile it all. I have so many nagging questions–some are specific with answers that exist but are currently just out of reach, and some are broad and probably unanswerable:

If her good eye is being covered for three hours a day, could its vision be suffering? She’s been rubbing it.

If her weak eye is improving due to patching, shouldn’t her glasses prescription adjust sooner rather than months later at her foll0w-up appointment?

Since she is not wearing her glasses or patch as well and seems to be having more trouble with her eyes, do we need to schedule another exam?

How do her conditions of farsightedness, strabismus (accommodative esotropia in her case) and anisometropia (unequal refractive power) play off each other or cause each other? I want to understand the relationship between all these terms, and why her brain is tuning out one eye. I don’t quite get it.

Does Stella have full-on ambylopia or is she just headed toward it?

Why, after she started wearing specs, did Stella’s brain start to favor her strong eye if the glasses supposedly accounted for and corrected her vision in both eyes, with extra correction for the weak eye? Shouldn’t glasses have prevented this?

Why didn’t Seattle Children’s Hospital even mention vision therapy?

How did the ophthalmologist at Children’s Hospital know that her weaker eye was “starting to be tuned out by her brain”? All they had Stella do, in order to determine this, was look at giant gray cards with teeny, tiny holes in them. They did her strong eye first, several times with several cards, then her weak eye. What if by the end of this boring exercise, she just stopped paying attention, being not quite two years old at that time? They said there was a “one card difference” between her eyes. What on earth does this actually mean?

Does Stella have 3D vision or not (one office seemed to think so, another didn’t)?

If much of binocular vision is established by age two, though it can be corrected later, shouldn’t she have pretty good vision since her issues didn’t start until around 18 months and the crossing has been very rare (“intermittent”)?

Or, are her eyes crossing slightly all the time and I just don’t notice it? Current doctor says yes, her eyes probably are crossing and I just don’t notice. This made me sad and almost drove me insane. I didn’t think this was true, based on what the doctor at Seattle Children’s told me.

Relatedly, why the F is she wearing glasses if they’re not preventing crossing and her weak eye is getting worse anyway?

What exactly will vision therapy fix?

Are my hopes too high (for vision therapy)? They are very, very high. I can’t help it. (For those that have been following Stella’s journey for a while now: Vision therapy is the new Graz.)

Are my worries too big (again)? They are growing all the time.

It just never ends, does it?

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About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in Frustration Station, Stella's eyes, toddler, vision therapy and tagged , , , , , , , , . Bookmark the permalink.

6 Responses to Rough patch

  1. olga says:

    oh mama. all your questions are valid, intelligent, and desrving of answers from people who are, technically, able to answer such questions.

    but it seems like you are once again left to figure out really complex medical issues on your own, since there — once again! — appears to be little objective truth to hang your hat on.

    my two cents: your logic is likely better than the doctor’s logic. as the buddha is to have said, question everything, even if i have said it, unless it matches your own experience.

    my other two cents: ask your questions. write down their answers. insist they fill the gaps in reasoning. don’t expect clarity *at this time*.

    and hang in there.

    • amberhj says:

      Oh Olga, you’re a rock solid sister. Thank you–it is very complex and with very little clarity (in all senses of the word apparently, oy) and you know what’s that’s like as well as anyone! Thanks for having my back! I need to organize my thoughts a bit and politely but insistently fire away at both doctors with question-filled phone calls. I’ll let you know how it goes. Thanks again. Let’s talk soon!

  2. kathleen says:

    Oh dear. It’s so hard to deal with the anxiety that comes with parenthood, especially when things aren’t going well or feel out of your control. I feel for you. I hope you can get some answers and some peace of mind soon.

    • amberhj says:

      Thanks for the good energy, Kathleen! Your support really does help and I appreciate it! Thanks for relating–the anxiety can get out of control so fast, we have to take care of ourselves and find balance, somehow! Have you figured that out yet because I haven’t! Ha.

  3. Cindy says:

    YES!!!! I feel the same way! Too much information, conflicting information, and not enough information- and somehow we’re supposed to be able to figure it all out and do what’s best for our kids. Sigh. We get Evie’s glasses Friday. If I see her eyes cross with the glasses on…oooohhh I’ll go crazy! Have they mentioned surgery to you? Our PO at Emory said the “s-word”, as I call it, at her FIRST appointment! Before trying anything! I guess they were just trying to let me know what the worst case scenario is. Believe me, PO, I KNOW!

    • amberhj says:

      Cindy! I’m so sorry you are dealing with this level of craziness as well but it makes me feel less insane to know that you feel the same way! Thinking of you and Evie today! I remember the day we picked up Stella’s glasses and I was NERVOUS and emotional at times. How did you two do today? Hope it was a positive day for you both and that Evie comes around as well as Stella did over the coming weeks!

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