Inspiration

Lately, I've been praying incessantly for calm.  Calm in Elena's life, in my life and in the lives of those I love.  It sometimes feels like I'm stuck in a whirling tornado of heartache, sadness and frustration.  Not just for me, but for my friends and family that are facing tough life challenges.  I'm ready for a break in all the action, ready to float the lazy river instead of racing down the water slide out of control.  

It's no coincidence that I stumbled upon a new blog in the last couple weeks.  It's written by a mom who has faced more turmoil in her life than one could ever imagine.  But she always, always finds the calm.  She calls it "Chasing Rainbows".  She blogs every day about her life suffering from infertility issues, losing a sweet daughter and most recently, her adorable son Gavin.  I've been so drawn to her writing because Gavin's challenges remind me of Elena.  Her perspective has been such an inspiration to me.  Most the time it's easy to maintain our positive outlook but every now and then life gets rough and I fall into a funk (cue life is currently rough).  She has reminded me to keep looking in our lives for the blessings that arise out of the hurt.    It's easy to forget the unexpected miracles we have experienced in the last year and half when faced with our current challenges and an uncertain future.  Underneath all this life stress, my calm is there waiting for me to grasp it.  Sometimes it just takes a little inspiration, a little reminder to dig it out.  

I encourage you to read her eulogy.  Maybe her words will touch you like they did me.  Maybe they will inspire you to take a moment to breathe, find your calm and "chase rainbows" in your life.  

Quote

Chad has always been inspired by quotes.  I find them inspiring too, but I can never remember them well enough to use them!  He can rattle off at least 15 of his favorite quotes at any given moment and uses them to motivate him in most everything he does.  Through our journey with Elena we have both used quotes and scripture to keep us going and give us a new perspective on any given situation that we are facing.  He sent me this quote yesterday and it was a goodie.  

"Achievement is largely the product of steadily raising one's levels of aspiration and expectation."

   -Jack Nicklaus

Chad asked me yesterday if I still get sad sometimes.  Of course I do.  I told him I would think it strange if we didn't get sad at times.  We laughed that it's good though that we don't still lose it 20 times throughout the day like we used to.  Just because the wound isn't still fresh doesn't mean it doesn't still hurt and won't leave a permanent scar.  We are adjusting to our new reality.  However, this quote struck a chord with me.  Even though we are growing accustomed to Elena's challenges, we can NEVER stop raising our expectations and aspirations for her.  She will continue to achieve as long as we keep pushing her.  

Thanks for the motivation yesterday, Jack. 

 

Lately

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.

Eating:
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!!

Vision:
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

Cheese!

Happy Easter

We had a lovely day yesterday.  Spring has sprung here in Indy.  We had a beautiful day yesterday to celebrate Easter.

Our day began at church, where we had a great message (and very fitting!) from our minister.  All day yesterday I was repeating to myself, "Because of the Resurrection, we have HOPE.....and because God raised His Son from the dead, anything, absolutely anything IS possible with God.  What a great promise that is and a great reminder for us every day.  We fully claim that!  

Later, we enjoyed lunch with my family at my parents.  It was so great to spend time with our family.  We enjoyed many laughs and had fun watching my cousin's two girls hunt Easter eggs in the backyard.  

Of course, Elena was a doll in her Easter dress!  The Easter Bunny brought her a basket full of toys (visual objects) and a few Reese's eggs for Mom and Dad.  Uncle Aaron and Aunt Amber got her a basket of goodies too!  The best present was a bouncy horse that the Easter Bunny left at our house to open when we got home.  She L-O-V-E-D it!  It was pretty great to see her to just have fun with a toy and it not necessarily be "therapy" related.  I told Laney that maybe the Easter bunny will bring her a real pony some day.  I'm not sure if Chad appreciated that or not! :)

Hope you all had a great holiday weekend!!

Half of Gramma & Laney

Cousin Maggie & Elena

 Laney LOVED sitting on Great-Granny's lap!

 Going for a ride!