Skip to main content

Evie the pirate...for 30 minutes


Evie's eye turn has been getting a bit more pronounced. Her eyes switch off to turn in towards her nose most of the time.  This is called intermittent alternating esotropia (if they turned out, it would be exotropia).  My initial post about eyes is here.


She also has huge epicanthal folds, which is basically the extra skin that covers the nasal corners of the eyes, and can make an eye turn, known as strabismus, look larger than it is. I was hoping she would grow out of it, but my observations were confirmed at her last ophthalmology visit.  The size of her eye turn had doubled in the last 8 months.   I could have brought prism bars home from work to measure them, but there's just something about doing an exam on your own kid--I am too biased and emotionally involved to do it myself.



Here is Evie with an eye patch!  We are doing it every 30 minutes on her right eye, because her left eye is the one that turns in more often. If we teach the left eye to be used more often, we can hopefully make both eyes more equal in use.  Both eyes have the same vision, which is a good thing. 

Evie doesn't like her eye patch, but she doesn't struggle against it as much as before (she gets to use the iPad or read books with Daddy as a reward).  You can get regular size patches or junior size patches.  The ophthalmologist gave us a tip that the junior size patches sometimes takes the baby's eyebrow hairs with it. She suggested cutting the regular size to a smaller margin around the edges, and also sticking the patch to our clothes a couple times before applying it to Evie's face, so it wouldn't stick as hard.  The winning combo was a bigger patch with the margins cut down, and not sticking it to our clothes. Evie seems to tolerate this well.  30 minutes seems like not too much, but it's eternity when the baby is cranky and trying to rub her patch off her face!


These are just plain fun:


Eventually, Evie will need corrective eye muscle surgery. Generally, they try to do surgery for large amounts of strabismus before age 2 to increase the chance that the baby's 3-D vision will develop at a basic level.  However, the ophthalmologist told us that even if this is done before age 2, the chances of developing good binocularity are low.  Given that Evie has Down Syndrome and it's a risk each time she's put under anesthesia, she wants to wait until after age 2 to consider surgery, and to combine it with any other procedures that may need to be done.  I'm ok with waiting and letting a full year pass from Evie's heart surgery to try another surgery!

In other news, Evie is near-sighted like Mommy and Daddy. Good strong myopic genes. :)


Comments

Popular posts from this blog

Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update:   Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents.  The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway. All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post! The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM.  Good luck! a Rafflecopter giveaway  ------------------------------------------------------------ Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket. Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up. But then she got bigger and craftier, and I...

Going public: Down Syndrome Awareness Day and what it means to us.

Starting this blog was a big deal for me. It's hard to throw out there in conversation that my baby girl has Down Syndrome, because that extra chromosome makes people view her differently. But because it is Down Syndrome Awareness Day on 3/21, I'm going public. Do you know why it's on the 21st?  Because of the 21st chromosome having an extra copy! So far, Evie has just been our beautiful baby girl who is learning to smile and reach for things. But as she grows older, I want our extended circle of friends to know, so that they can treat her as a typical little girl who may be a little delayed in her development, but will want to be included just like other kids.  I want the other kids to play with her and to learn that little girls with disabilities like to have fun too. Our story about our diagnosis is here .   Now that we've met Evie and know what we're dealing with, it's not SO scary as it was before.  Still overwhelming sometimes , but I wouldn'...

Why is Sophie the Giraffe so awesome?!

My husband and I had a discussion about why Sophie the Giraffe is so beloved and effective, yet so simple.  This rubber giraffe is $18-25, and Erick was just astounded that it is so expensive.  I told him that EVERYONE has this giraffe, and he asked why it was so special.  This post is dedicated to my dear husband. A rare photo without her oxygen cannula Evie LOVES Sophie.  So the question is why? 1. Who wouldn't love a toy with its own Wikipedia entry and Facebook page?  I knew Sophie was French, but had no idea she was so old.   2.  Why not a penguin, a duck, or an elephant?  It's the neck.  A giraffe has the perfectly sized neck for an infant to grab and practice motor skills.  Then why not an ostrich?  The neck is too skinny, and no ears for baby to suck on! (You can tell I am sleep deprived, because I am thinking of the ideal animal for a rubber toy.) 3. No batteries required.  Since Evie was born, our batt...