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

It's Official! The Polka-Dotted Penguin book has launched!

It's official! My new children's book, "The Polka-Dotted Penguin" has launched today!  How fitting that my labor of love launches on Labor Day. The writing of the book and putting all the parts together took about a year. It was definitely a pandemic-worthy project.  I wrote this book because I wanted more books available for sharing with Evie's class for World Down Syndrome Day on 3-21 and for Down Syndrome Awareness Month in October. I'm happy to release my new book just in time for October! My hope is that this book will be used as a tool to start conversations with children about how to treat others who may look or act differently than they do. It's all about inclusion and celebrating differences.  This book is perfect for ages 4-9, or any ages who love penguins, or really anyone who loves Evie! Here's how to order: Barnes and Noble (Hardcover): https://www.barnesandnoble.com/.../the-polka.../1140115530 Amazon (Hardcover, Paperback, Kindle) :

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline.   And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever. 

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 needed to fin