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. :)

How to sit like a big girl...and another milestone!

I took sitting for granted until Evie got occupational and physical therapy.  First I waited for her to sit up on her own, and then once she did, I learned there was the right way and the wrong way to sit. Sometimes I'm just so proud that she got to the next milestone, only to find out that there's another one that we are aiming for that she's not doing "correctly." For instance, while she sits up for long periods of time now, the way she sits is to stick one leg behind her to give her more stability.  Or she "tripods" and leans on her hands.   The right way is to "ring sit" so that she can strengthen her core, and ideally she doesn't need to prop herself up when she gets tired.
Sticking a leg out to balance herself
I must stick one leg out at all times and rest my hands on my knees. Sitting is hard work!
Ring sitting! But still leaning on my knees.

Not too shabby!  Sitting like a champ. 
But who needs to stay still?!

We were also told that it would take Evie a long time (months) to crawl, and she did take longer to do so, but ladies and gentlemen, we have a crawling girl in the house!  In the span of a week, she has decided that given the right motivation (Daddy or an iPhone), she will crawl across the room! This was one of our goals, so we are very happy!  Daddy gets a lot of credit for helping Evie to crawl.  He plays with her every night and gets her up and moving!

We capped off an exciting week of crawling with Evie's first trip to the zoo!  The animals were too far away for her to really be interested in them, but she had tons of fun being outdoors and giggling at the trees. 

First trip to the zoo! It's hard to see, but I'm smiling!
Happy 16 months, Evie!  Way to go!

Evie gets sprinkled, and a few cool products

Evie has had a busy month!  First she got the norovirus and gave it to Mommy, Daddy, our nanny, Yin-Yin, Ah-Gong, and Ah-Ma.  Then she started teething again and is getting in her 2 front teeth!

On Palm Sunday, Evie got sprinkled!  That is to say, Evie got baptized!  I've been waiting for this day for almost a year.

Evie gives Pastor Dave "the eye"
We would have done it sooner, but it's so much easier to baptize a baby when you don't have to lug an oxygen tank on the stage with you, and photos are so much nicer without oxygen tubes!  After Evie had her heart surgery at 5 months old, we got busy with my going back to work, and then we put it off for awhile.  So the day finally came!  Evie was a shining star, and didn't cry at all! We were happy to celebrate this day of acknowledging that Evie is our gift from God, and that she is a child of God.

Evie had quality time with both sets of grandparents this past year. We are grateful for all they have done, especially Evie's Yin-Yin, for helping us to get Evie stronger.  Now Mommy and Daddy are on their own with Evie (with the awesome nanny's help!)!

And now, time for Evie's Mommy's Product Recs!

This product has replaced the bulky ice packs in our freezer. I love their slim fit both in our freezer and in our cooler bag when we have to go out. It's also easier to put them in the freezer bag for her overnight feed with the g-tube. Oh, and I guess they are good for lunch bags too! Totally a life changer when you are carrying around a cooler bag and it suddenly gets lighter because the ice packs aren't as dense.
In her EI baby playgroup, I noticed that Evie was starting to show more interest in the bouncy horse. So I did some research and found Rody, which also can have a rocker base. Evie is enjoying Rody more and more!

In Evie feeding news, Evie has lost a bit of weight thanks to RSV and the norovirus, as well as being an active toddler.  We are trying to gain back the weight that she lost, so that we can be in a good place to start cutting her g-tube feeds and making her more hungry to eat by mouth.  Evie seems to still prefer the Siggi's whole fat yogurt brand, especially the Wild Berry flavor!  She is a girl after her mommy's heart.  However, if this helps anyone, I learned of 2 more brands that are rich in calories (~200!), but organic:
O My Yog! by Stonyfield Farms

Another lesson we've learned is that a child with low muscle tone should have a high chair with good support.  Evie has a Graco Duoliner LX highchair, graciously gifted to her by her Auntie Alanna.

I started wondering if she would do better if she was able to sit closer to the table with us, so then I got a Fisher Price Deluxe Booster Seat.

But turns out that the feeding therapist noticed that Evie didn't get enough trunk support with this seat, so we switched back to the Graco Duoliner.  Oh well, we save it for when Evie is even stronger!

Evie is saying Dadada and Lalalala quite freely  now, but still no Mama!  I've been told to enjoy this while it lasts...

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 mak...