We're Moving!

I feel like my little blog here has been suffering from some neglect.  For good reason...things have been CRAZY with the Hinton family!  We've been arranging summer schedules, vacations, therapies and....oh, we bought a house!

I can't even begin to describe what a HUGE answer to prayer this was.  Like huge, the way it all worked out.  

About this time last year, I began doing some research on schools.  In Indiana, Elena receives early intervention (ie therapy) through a state program called First Steps.  When she turns three, they send Elena to a developmental preschool through her local public school for preschool and all therapies.  I knew that her third birthday would creep up on us if we weren't careful and we would find ourselves in a panic.  We weren't completely comfortable with the setup of the current school district we live in, not to mention we were quickly realizing our house wasn't going meet Elena's needs for very much longer.  So, after lots of phone calls, research and discussions with Chad, we decided it was time to move to the 'burbs.  We settled on Zionsville, an adorable little town just Northwest of Indy.  It made sense for lots of reasons and we loved the small town feel it has.  

We looked and looked and looked some more, for about five months.  All the while, I was fretting about finding a house to suit our family AND all of Elena's needs AND stay in our budget AND timing the selling of our house AND where we'd go if we couldn't find a house AND where would we continue Elena's therapies AND where would we put all her stuff.  Navigating this process with a child who needs a lot of daily proved to be very stressful.  I spent a lot of time trying to pray away all my stress and trust that God would find us the perfect house to meet ALL of our needs.  

And boy, did He deliver.  One day while stalking the real estate website for new listings, I saw a nicely structured house with a 1970's interior in one of our favorite neighborhoods.  I didn't think too much about it but decided to send it to our realtor (who promptly thought I had really lost it and become totally desperate) to just check out.  We pulled up on a rainy day to a house overgrown with 5-foot tall weeds, but nestled on a great lot in an idyllic cul-de-sac.  I immediately loved it.  Within the first 2 minutes in the house, I knew it was ours.  

After about twenty minutes, we got in the car and Chad asked me what I thought and I burst into tears and said, "that's our house!".  The house was an obvious fixer-upper, having been vacated by an elderly couple two years before.  But it was a sprawling ranch with endless potential.  A RANCH!  On a CUL-DE-SAC!  In our favorite NEIGHBORHOOD!  A blank canvas to MAKE OUR OWN!  I mean, it was perfect.  Long story short, after a few intense hours of submitting an offer, it was ours! 

It is such a huge answer to my prayers.  Every one of the details I was stressed about took care of themselves.  It was such a reminder to me that stress and worry can be so unnecessary.  It isn't possible for me to be in control  and plan everything.  What is necessary, is trusting that God will work out all the detail, the ones that are out of my control.  And He did.  

As we begin to enter into the "stressful" time of remodeling an entire home, I haven't felt an ounce of stress because I know everything will work out.  It has thus far and I'm certain this is where we are supposed to be.  

And if you know anyone who is looking for an adorable Cape Cod this fall...... :)

How Much Is Too Much?

The last three weeks have been CRAZY busy.  Elena has had four appointments in addition to her normal five therapies this week and it's been about the same the two weeks before that.  Today, I'm finally catching my breath.

One of the appointments this week was an evaluation at a place here in Indy called The Jackson Center for Conductive Education.  Honestly, I've done quite a bit of reading on Conductive Education, but am still not quite sure of how it all works.  What I do know is that it is an alternative therapy for children with Cerebral Palsy, which is by definition what Elena has.  One of Elena's therapists recommended that we look into it, when I had mentioned that we were beginning to seek out other non-medically based therapies for Elena to try.  The Jackson Center was pretty amazing and we feel very fortunate that we have one so close considering there are only 35 in the whole country.

From what I understand of the therapy, I'm certain Elena would do really well.  Here's the dilemma, it's an extra six hours a week (not including the hour round-trip travel time) commitment.  That's in addition to the already five hours a week she gets of traditional therapy.

It's a no brainer, we're going to do it.  But what I'm struggling with is when is it too much?  While most parents of two year olds are trying to balance trips to the zoo, the park and to the pool this summer, I'm going to be running around from therapy to therapy.  As a parent of a special needs child, when do I get to just let her be a kid?  There's this constant weight on me as I try to balance this delicate issue.  On one hand, as her Mommy I will do ANYTHING to aid in her rehabilitation, anything to help my baby get better.  But, how much of her childhood do I have to be willing to sacrifice?  If When we begin this therapy, Elena will no longer get to see her friends at her Mother's Day Out Program, no more free Tuesday mornings to snuggle with Mommy, no more therapy-free days, no time to go to the pool or the zoo, no time really for anything during the day but therapy and naps.

It's heartbreaking.  It's hard on me to accomplish it all.  I can't imagine what it's like as a two year old.   I never expected to have to make these decisions for her, and they're becoming much more frequent as we understand more about what she needs and what resources are available.   I feel guilty whether I choose to put her through more therapy or whether I don't.  As her little personality has begun to emerge, she definitely lets me know when she is up for something or not.  I'm afraid she's going to think all Mommy does is put her through therapy.  We are constantly trying to determine which is better for her, therapy of all kinds at all times or more time for typical toddler activities.

It's hard.  Really hard.  I just love this girl so much.  I want everything for her.  I want to give her every opportunity available.  But I also don't want her to feel different than everyone else.  I'm not sure when it's too much, when we're pushing her too hard.  There's too much to even process.  I'm just trying to put one foot in front of the other and praying we're making the right calls.

Even though we're a year and a half into this journey, I'm still learning and understanding every day.  There's so much to balance, so many decisions to make for our Elena.  I'm reminding myself daily that I'm doing the very best that I can.  There is no manual on how to go through this, though I wish there was!  And even though there always seems to be a slew of new issues just when one is resolved, I'm constantly reminded that I'm not in control.  God is shaping this path for us. I remain certain that even in the midst of difficult times, there is a plan and we'll get by.  

And through it all, this girl is pretty darn happy.

Happy Mother's Day!

All that I am, or hope to be, I owe to my angel Mother.

Abraham Lincoln

For my Mom's present this year, I had our good friend Sam take pictures of our four generations.  The pictures turned out great and I know we'll cherish these shots forever.  These two special women have set the best possible example for me of what a Mother should be.

My Mamaw is quick to make you laugh with her ornery personality, but covers her family in prayer every day of her life.  She raised triplets and my Mom, who was born 14 months later, all while working hard every day on the farm.  She was the epitome of a working mom.  How she did it without disposable diapers, bouncy chairs and Sesame Street, I'll never understand!

My Mom is the happiest person I know.  She has a servant's heart, and is always doing something for someone else.  She raised us three kids to be happy people, with tender hearts and a love of God and family.  She has always been there for us when we've needed her and is always our biggest cheerleader.  I'm so thankful for her!  

Happy Mother's Day!

Bowling for Brain Injury

A couple months ago our dear friend Lisa emailed Chad and me about participating in the Brain Injury Association of Indiana's fundraiser, Bowling for Brain Injury.  We were so glad she stumbled upon this and immediately signed up a team.

We knew we would have no problem raising the suggested $500 for our team, Laney's Lanes.  However, we were so excited that we actually raised $1,775!  We raised just $100 shy of the #1 team.  Once again, our amazing support network stepped up and showed us just how special our Elena is!  The money we raised supports local outreach, programs and support for the Brain Injury Association of Indiana.  It was all for a great cause.

We had a blast!  I started off on a roll (pun intended!) by bowling a strike on my first turn and was sure to rub it in to my competitive husband!  All in all, it was fun to be with our friends and family supporting a great cause...not to mention brushing up on our bowling skills.

Thanks again to the following people for contributing to Laney's Lanes!
Rich Pentz
Molly Paschal
Allen & Jayme Buchanan
John & Allyson Olsen
Lisa Eichengreen
John & Barbara Hickey
Ron & Brenda Rittenhouse
Eric & Lyndsey Furry
Gregg Boehning
Chris & Brittany Dyer
Steve Furry
Nicole Temples
Joe & Dee Grecu
Matt & Lisa Rittenhouse
Christos & Erin Agelakopoulos
Ken & Amy Suprenant
Joel Gray
Evan Frey
Blake & Natalie Koriath
Kevin & Jenny Clutter
Joel & Jo Meek
Bill & Susie Koriath
Keith & Laura Jackson
Chris & Sam Julka
Kelli & Jeff Waggoner
Kelly Norton
Rande & Ginnie Clevenger
Leah & Joe Matis
Rachel Moorhead
Carrie & Jason Farrow

We are so thankful for all of you!!

 Elena was the real champ considering we were bowling all through her nap time!

Laney's Lanes!

Aaron Frey, Chad, me, Elena, Evan Frey, Lisa Rittenhouse & Matt Rittenhouse

And thanks to Amber Frey for coming out to bowl with us too!

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!