April 10, 2013

I feel like I’ve been lacking on my posts of late.  It seems like there are always 14,382 things to do before I finally sit down for the evening and I keep putting a post off until the next day.  Whew, I’m tired!

I did want to share with everyone how Elena is progressing.  We’re in a bit of an upswing again.  See!  I told you….we continually have ups and downs, so don’t worry about us when we’re down.  We’re just waiting for the up to come around again.

Things have been going really well.  She seems to be interested in it all again.  In spite of her AWFUL acid reflux right now and the fact that we feel like we are constantly feeding her (either orally or via G-tube), she understands the routine and does what we ask of her.  Today in therapy she had her first “real” food.  Meaning, we blended up a banana, combined it with Pediasure and she loved it.  Mostly we’re feeding her baby yogurt, greek yogurt/Pediasure and lately regular applesauce.  She’s totally over baby food and refuses to eat it…it’s for babies…obviously our big girl knows that! 🙂  I continue to lobby (a throwback to my old career days!) her nutritionist to think about cutting some of her G-tube feeds.  She has assured me that if she starts to see more consistency, we can take a look at things.  So, if you could continue to pray for her interest to hold tight, the reflux to subside, we will hopefully be on the right track!!

We’re still feeling good about everything since our March visit to see Dr. Roman.  I feel like there’s much more of a focus on her vision and we’re really implementing it into her daily routine.  Each of her therapists are up to speed on what her needs are visually and are all on the same page.  After seeing Elena’s response to some of the apps Dr. Roman had on her Ipad, we splurged and got one for her.  We have been using it to facilitate reaching, touching and vision exercises not to mention playing many, MANY hours of Pandora Toddler radio.  It’s particularly great for her vision since she’s drawn to light (part of the CVI) anyway.  I’ve downloaded several great apps that have been wonderful for lots of different components of her therapy.  Just this morning we were playing one called “Baby Finger” that produces a sound and simple image when you touch the screen.  After some warming up, she began reaching to touch it when I would ask her.  So exciting to see her use her arms!

Physical Therapy:
Still making improvement every day!  We’ve been enjoying an unusual period of well-stretched, limber muscles the last few weeks.  This has been great in helping her sit, get on her hands and knees and roll.  Her head control is SO much better.  This week we’ve been focusing on strengthening her trunk.  It’s sort of the final piece to get her to sit on her own without tipping over.  So, continue to pray that her muscles stay loose and her trunk gets stronger.  I just know that any day now, our girl will be sitting up on her own…watching her Ipad of course 🙂

Overall, we have been enjoying a much more present Elena.  She is understanding more and more of what we say and what we ask of her.  She remains the sweetest, most content little gal ever.  Though, she is finding her voice (literally and figuratively) and let’s us know when she does NOT want to do something…terrible two’s anyone?!  We take it as a blessing.  I love hearing her squealing protest in therapy or the way she is inevitably grumpy when she gets woken up from a nap.  It affirms to us that she’s in there.  She knows.  She’s just like any other 21 month old with just a few more challenges.  And that makes me happy.

Thanks as always for your perpetual prayers.  It blesses us immensely to know that after all this time, Elena is still in the hearts and on the lips of so many.  She is one special girl!!

She sits!  (For about 10-15 seconds unassisted)

 Hands and knees in PT


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This is Elena. Our Light. You can see all the goodness and joy that shines from those deep blue eyes. She loves sneezes, yawns, industrial toilet flushes, automatic paper towel dispensers and The Star Spangled Banner. Music is her everything, specifically Moana, Frozen (really all Disney), Queen & Taylor Swift. Nothing makes her squeal quite like swimming, fast boat rides and her two brothers in trouble. In addition to her megawatt smile, Elena reminds us to cherish the smallest of victories, to live in the present, and to daily dwell in a posture of gratitude for every breath and every blessing.  

More About Our Story

I’m Emmalee, an ordinary gal born and raised in the Heartland. Wife to Chad, and Mom to Elena, Calvin & Turner, I spend most my days ridin’ dirty (literally so much trash) in my minivan carting kids to and fro. When I’m not being a Momager, I excel at self-care, cooking gourmet meals my kids won’t eat and deep-diving all the feelings. Most days, my attitude is gratitude, just taking life one step at a time.

Emmalee & Elena

Meet The Gals