open thread: how’s it going?

I try to follow all the comments in different threads, and I know that some people have appointments coming up for their kids or are dealing with getting new glasses or other things.  Mostly I’m just curious about how everyone is doing.

So, what’s up with you?

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12 responses to “open thread: how’s it going?

  1. I’ll start, since I asked. Not much is going on with us, I obsessively pore over every picture of Zoe trying to see if her eyes are showing any sign of crossing, but so far, so good. Another 3 months until the next eye appointment. Zoe seems to have settled on her blue glasses as favorites. They’re my favorites, too, so I’m happy. Chris thinks they look like librarian glasses, I tell him that’s why I love them.

    There’s a new forum for parents of kids in glasses at Children’s Eye Foundation – http://forum.childrenseyefoundation.org/ – I plan on writing up something more about that, hopefully tonight.

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  2. Nora, doesn’t have glasses (yet), but she and her mom have strep throat. I just thought I’d mention it. 🙂

    I’ll check out the new forum and mention it on BrightEyesNews.

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  3. Just experienced another case of boy-meets-bookcase. nosepad/frame left a jagged tear across the bridge of the nose….6 stitches and post ER visit we’re right as rain…albeit the worse for wear. aaah..for a pair of glasses made of foam.

    On the bright side, recently connected with another parent of a child with simple ectpia lentis..and exchanged stories. Our first such contact.

    Otherwise steady as she goes…next PO in about a month. All’s status quo on the vision front..

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    • “boy meets bookcase” made me laugh. Poor guy. That’s very cool that you connected with another parent – I have to admit, I’d never before (or since) heard of simple ectpia lentis.

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  4. Not much new here as well. Aubrie doesn’t have an eye exam until July. She however just started noticing other people not wearing glasses & it is starting to bother her. She keeps saying she doesn’t like her glasses now, but she does still wear them faithfully. Your new amazon store came in handy with Princess Peepers! She loves that book! Everett’s eye exam went well & he won’t need another one unless we notice anything. He now faithfully wears sunglasses in the car since he isn’t fond of the sun…which also irritates Aubrie because she wants sunglasses! It never ends!

    Our struggle right now is a rampant case of the stomach flu! The Dr. said this strain is lasting 5-7 days long. It’s been brutal for Mom & Dad!

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    • Oh the sunglasses! Zoe recently found her sunglasses that we bought for her 2 summers ago. They still fit, and she’ll occasionally take off her glasses and put on the sunglasses and then run into things. Or better, she’ll try to put the sunglasses on over her glasses, or just set them on top of her head.

      I’m glad that all went well with Everett’s eye exam. I hope the stomach flu is over for you soon, we dealt with that over Christmas.

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  5. Sophie’s doing really great with her glasses(or as she calls them her eyes).
    She had her appt. yesterday where she had her EUA to check with the glaucoma issue and that went good (16 in one eye and 17 in the other)
    they did schedule a follow up to make sure pressure isn’t increasing.
    We also go in 2 months to check on her amblyopia and follow up with her glasses.
    Sophie did so awesome with the whole EUA thing, we were told no food or milk after midnight on monday and no juice 3 hrs prior to her 11:30am appt. and she wasn’t put under until 2pm.
    There wasn’t any fussing or crying about her wanting to eat(of course we didn’t eat or drink in her presense either).
    Thank you Little Four Eyes(and Ann), I’m on here everyday.

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    • Jeana, I think it’s just too cute that Sophie calls her glasses her “eyes.” What a trooper she was with her EUA, too. I’m glad her pressure looks good.

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  6. I just wanted to give everyone an updated on Mia, she went in for an EUA (exam under anesthesia) on Thursday. Her PO told us that her glaucoma valve shifted even further and is pressing against her cornea which has caused scaring. The scaring is not obstructing her vision so we have a few options that we will be discussing with her glaucoma specialist from Mass Eye & Ear. She might need to have corneal replacement surgery, at which point she will receive a donor cornea from a cadaver. I have read that many babies reject the donor tissue and I do not want Mia on anti-rejection medication at such a young age. I have read articles about a relatively new procedure were they use an artificial cornea called Keratoprosthesis, I also read that there is a very low rejection rate. I will be speaking to her glaucoma specialist about this new procedure, I am hoping that this is an option, Boston Children’s and Mass Eye & Ear are very advanced in technology so I hope this will be a possibility. Another option is we can remove the valve and hope her high intraocular pressure (glaucoma) does not return. Or we could do nothing and see if the valve shifts further causing the scar tissue to obstruct her vision. Either way she will end up needing another surgery. She was also sized for a regular contact lens that we will hopefully receive within the next 2 weeks. Other than the shifted valve and news of another surgery, she is doing extremely well and her procedure under anesthesia went really great, she was starved when she woke up.

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    • Hi Danielle,
      Thanks for the update, what a scary thing to think about getting a donor
      cornea and having Mia on anti-rejection medication so early on. I’m always
      amazed when I read your posts at how much research you’ve done to be a good
      advocate for Mia.

      Would you mind if I published this as a post? I want it to be more findable
      if other people come to the site looking for information about glaucoma.

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  7. At our last PO appointment in early April we learned that Nicky’s left lens had shifted temporally and is now a -18. The right eye remains stable at -7.5. Now, with about 3 weeks total under our belts with the new lens in, we’re doing great. There is some signifcant concern with the disparity in strengths…with such an enormous swing in diopters..as to what N is seeing and how the brain is adapting to/merging the images. As far as he’s concerned, business as usual, still patching (with increased objection) and still managing well. While we thought a -18 would be some doozie of a lens (it is pretty thick), it is all together not bad looking.

    Another appointment this week for an evaluation to see if the Rx is on target and no more shifting.

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