Laney Lately

I don't feel like I've given an update in awhile on how/what Elena has been up to.  I've been busy in the last couple weeks getting organized for summer schedules.  Oh, schedules.  I always have a laugh when people say to me, "just wait until your kid is in sports, dance, etc".  I think to myself, ummmm...we've been running all over this town nearly every week day for 3.5 years, little league schedules have nothing on the Hinton family.  I always anticipate things to slow up a bit for Elena in the summer, but that's obviously crazy because her schedule this summer is busier than ever.

Elena will be going to the Jackson Center two FULL days this summer.  She'll get a half day of therapy and a half day of education (preschool) class.  I'm so excited for her to have this opportunity.  Consistency is key for her and spending all day with her friends, working hard in therapy and school is going to be good for her.  Plus, they'll do weekly field trips with the whole Jackson Center crew.  She's going to love it (and be totally exhausted!).  This is also more convenient for Cal and me, as I won't have to chase a toddler around in a confined and toy limited space for three hours.  Hooray for all!

In addition to the JC, Elena will continue to receive therapy services a few hours a week from her school.  She will get to do swim therapy with her amazing PT and OT once a week, and have weekly visits from her speech therapist, vision teacher and preschool teacher.  Then somehow we will manage to sneak in an hour of OT in clinic and Speech Therapy in clinic.  I mean it's exhausting typing all of that.  I can't wait to see how many miles I'm going to log shuttling her everywhere!

Schedules aside, we're super encouraged about the progress we've seen in Elena the last few months.  She's moving in an awesome direction and it's giving us new hope on a daily basis.  She is working so hard in all of her therapies, which is nothing new, but it's nice to get good feedback from her.  We've really begun to see how much Elena is really "in there" and just bursting to get out.  She's easily the most admired kid in her class at school.  Her teacher is always telling us hilarious stories of what her peers say and try to do for her.  At the JC, it's the same.  She "talks" the whole time to her friends Ben, Kutter and Lilliana.  She has so much personality just bursting to get out!

We've really begun to focus on helping her get that sweet personality out.  She's going to be seeing an adaptive communication device specialist over the summer to help us hone in on what is going to be Elena's best form of communication.  We're so excited at the thought of Elena being able to communicate with us.  It's obvious she has so much in there that her poor broken body holds her back from. As of now, we're pretty uncertain which form will be the easiest for Elena to communicate, so we're praying that this therapist can help us determine that.  I will keep you posted as we know more!

As I've mentioned before, with kids like Elena, the future is an often scary place for our minds to go, but lately my heart has been bursting with so much hope for our girl.  I'm certainly realistic about her prognosis, but as I watch her in therapy, as I have every day for 3.5 years, I just see so much inside her.  I'm encouraged about what she may achieve in the next few years.  It's definitely not easy, for her or for us.  And it most definitely isn't always rosy.  But hope and encouragement are EVERYTHING in our situation and it's a really big blessing when they're not hard to grasp.  If there's one thing that is a constant in all this it is that God doesn't necessarily always answer the exact prayer that WE want, but gosh, if you don't see the work He has done in our family, in our Elena, you're missing something really beautiful.

1st Birthday!

I'm struggling to believe that my little baby boy is turning ONE today!  It's hard to remember that a year ago today, I was enormous carrying a 9lb. 7oz. Calvin.  What a special day that was.  We knew our lives would be changed, but how this boy has blessed our lives this past year, we never could have imagined.

Calvin has been the best kid from day one.  Sure, we've had our moments, but overall he's been a dream baby.  He's a great sleeper, a good eater, and the most easy-going little guy.  He has happily gone EVERYWHERE possible with us this past year.  He's tagged along to every doctor appointment, therapy session, equipment fitting and errand never having a meltdown or protest.  It hasn't always been easy, but he's made the transition to two kiddos the easiest he could have.  I'm SO thankful for his personality.

Even though we had to work overtime to get him to smile initially, he loves to smile, giggle and ham it up at every chance.  He's a busy boy who loves to play and move.  He pushes his elephant all over this house, maneuvering around every piece of furniture with ease.  Just like his sister, he thinks most silly noises are hilarious.  And fittingly, we've officially determined that his first word is "achoo".  If you know our family well, then you'd know that sneezes are a a big deal around here.  Elena giggles uncontrollably any time anyone sneezes, so appropriately Cal now says "Achoo" and laughs, proving this sweet little guy is a perfect piece to our family!

What a special boy you are, Calvin Merrick!  We love you so!!

Our Cal-boy had a Cowboy theme party

His new wheels

Walking for Dreams

You may remember this post from last year.....we were able to raise over $2000!!

We are thrilled to be participating again this year in Walking for Dreams to benefit The Jackson Center for Conductive Education, a place where Elena has continued to thrive.  As many of you know, Elena has been part of this rigorous therapy program for nearly two years.  The Jackson Center has become so much more to us than just a place for Elena to achieve.  From the very beginning, we have been amazed at the progress Elena has made and managed to find a community of families to be part of.  They understand our struggles, our joys, our hopes and our dreams for our children.  

The Jackson Center has given us the confidence to believe that Elena is more than a child with special needs.  We believe she is capable of far more than even we, her parents, give her credit for.  One example is potty training.  From Elena’s very first day, they began potty training her, something we had never even given thought to.  Now, two years later, Elena has started going on the potty, giving us the hope that she can achieve this area of independence for herself.  The Jackson Center introduced us to the wonderful doctor who operated on Elena’s hip.  Without this doctor, we would have been forced to proceed with an unthinkable operation that would have severely limited Elena’s future mobility.  It is because of the hope the Jackson Center has given our family, and many others, that our family is asking your help to raise money through Walking for Dreams.  

Walking for Dreams is an annual family walk that benefits both the Jackson Center and Elena directly.  Every cent of your donation will be put towards Elena’s therapy regimen and help her continue to make great strides.  If you would like to support the Jackson Center and Elena, you may donate to our team via the following: 

• Donate online at www.walkingfordreams.org.  Click on "Donate," Select "Individual Walker," then choose "Hinton, Elena.”

• You may mail a check to the Jackson Center  – Walking for Dreams. 

Please be sure to include Elena's name in the memo line if you mail a check. 

(802 Samuel Moore Pkwy., Mooresville, IN 46158)

  

Your gift, no matter what the amount, will help us achieve our goal.  More than that, it will give Elena and all of her friends at the Jackson Center a greater chance at independence.  Most importantly, we are so thankful for your continued love, support and prayers.  It is because of those things that we are able to get through every day!   

Love, Chad, Emmalee Elena & Calvin Hinton 

Stepping Through the Struggle

Cal is getting pretty close to walking.  Like most parents, this immediately fills me with excitement and nervousness.  But unlike most parents, my nervousness is for a different reason.  I'm not afraid of what he'll get into or stressing about having to chase him around.  I'm afraid of what I will feel.

The other day, I was holding Cal's hands and walking him around the room.  I burst into tears at the ease my 11 month old was taking steps with his Mom helping him.  I can't help but ache for the effort, concentration, coordination and difficulty my almost four year old has at this very same task. I encountered this heartache back when Cal was around four months, but I'm finding it all resurfacing again.

Not only is it heartbreaking to watch one child surpass the other in ability, but it makes me so angry to finally understand what it is that we missed sharing with Elena.  Before Cal, we would watch other kids Elena's age grow and change but it seemed so distant from our reality that we couldn't understand how much we were truly missing.  But now with Cal, it is so real.  I'm furious that the first year of her life was misery.  For all of us.  We were dealing with so much stress, grief and fear.  We still loved her immensely but we all missed out on the happiness of that first year of life.  When I compare the pictures taken of Elena's first year and Cal's first year, the difference is undeniably sad.

I'm so thankful for how far we've come and the progress Elena has made.  I have been there for every inch of progress, cheering her on in my annoying Mom voice.  We have giggled, cried, clapped, smiled and played with her just as we have Cal but, oh, it is so different.  You realize the deep human connection eye contact gives you. You realize how your heart bursts when your child reaches for you. You realize how sweet it is to see your child look and smile at you when you walk in the room. You see how miraculous it is to watch your child develop on his own without hours upon hours of difficult therapy. You realize how silly it is to sweat over a fever when you've seen your child on life support.  So many things have changed our perspective since Cal came into our lives.  I can't help but feel blessed and robbed all at the same time.

I volunteered in the Kindergarten class yesterday at church and my heart shattered into a million pieces when I got home.  Just seeing all the little girls in their Easter dresses twirling around was more than my heart could bear.  I can't begin to describe the hurt that opens up when I'm reminded what my sweet Elena will never be able to do.  Some days more than others I realize just how different our life is from everyone else, the struggle we carry, the strength we must have, the heartache that consumes our soul.

I've come a long way since Elena's first year of life, but I would be faking it if I said my head and my heart weren't still processing everything every single day.  There isn't a day that goes by that I wish November 3rd, 2011 never happened.  I'm so proud of Elena's resiliency and how far she has come but man, it still hurts.  I knew these feelings would happen and I know they'll come and go.  But I know watching Cal take that first step will be so bittersweet.

11 Months!

11 months down, 1 to go!  How can this be?  Our little guy is definitely acting more and more like a toddler.  I can't believe how fast he's grown, especially these last few months.  Cal, he is such our little entertainer.

This month he has been ON THE MOVE.  He pushes his little elephant walker everywhere all.day.long.  He has figured out how to change directions with it in the last couple weeks.  Before, he would push it until he ran into a wall, then cry until we would flip it around.  Thankfully, now he will just walk around the side and take off again.  Yesterday, I swear he did this all morning until he napped, then all afternoon until he napped again.  Toys are useless to him right now unless he can use them to walk across the room!  It's the best to watch him giggle as he and the blue elephant chase me.  Though the elephant is his favorite "mover", he doesn't discriminate.  He pushes our counter stools, Elena's wheelchair, dining room chairs, ottomans, Elena's therapy equipment.  If he can push it, he will.  The Jackson Center is his little slice of heaven because there are approximately 10 walkers of varying sizes all lined up just waiting for him to take advantage of.  You can see him in action in the video below.  What a little wild man.

He has really developed a love for Pete lately, though I don't think it is quite reciprocated yet.  Cal loves to climb into Pete's dog bed, stare out the patio door with Pete, climb on him, pull his ears, poke his nose, jingle his dog tags and chew Pete's toys.  His favorite, well both their favorites, is meal time.  Cal often does a "one for me, one for Pete" routine with his finger foods.  The food barely hits the floor.  Just this week Cal started a less-hygienic way of feeding Pete by holding food in his hand and simply holding it out for Pete to eat out of his hand.  Then of course, this Pete slobbered hand goes right back into Cal's mouth...totally disgusting.  The other favorite thing Cal loves to do with his food is rub it into his hair.  The worst is avocado.  Green everywhere.  I guess this is probably only the beginnings of dealing with a messy boy.  Yay?

We've loved being entertained by our busy little boy.  Elena loves every noise he makes and often rolls with laughter at him.  He is often curious about her, especially her g-tube, which gives me nightmares about him getting hold of it...ahh!

I can't believe an entire year has almost passed with our little guy.  It has been so amazing to watch him grow and change.  I love watching his personality emerge.  He's brought us 11 months of pure joy and what a celebration next month will bring!

This picture perfectly describes their relationship at the moment (mealtime excluded).

His official 11 month photo, drool and all!

Cal's favorite thing to do at the Jackson Center

Hello Spring!

Today is the first official day of spring...hooray!  We have definitely been enjoying warmer temperatures here and are relishing in our ability to get outside without being bundled up from head to toe.  It's certainly been a LONG winter!

I've really been lagging with my writing lately.  To be quite honest, I'm not sure why.  The first three months of this year, and technically the last of 2014, have been really tough.  There have been lots of changes, adjustments and drama, quite frankly.  I'm not sure what to make of it yet so perhaps that's what is contributing to my lack of enthusiasm.  We'll see.  I'm holding out hope that spring will bring with it some sunshine in all ways possible.

One bright spot was that we were the honored guests of a breakfast yesterday at the Ronald McDonald House.  I've often mentioned how much we cherish this organization and all that it has done to help our family and thousands of others.  If you remember, we were the "feature family" this year for their big annual gala and participated in a beautiful video that documented Elena's story.  Well, yesterday was their annual breakfast with their board members, large corporate sponsors and some potential new ones.  We were, again, brought to tears by the video.  No matter how many times I've seen it, I still can't keep it together.  Chad was asked to say a few brief words.  I asked him on our way down what he was going to say and he said he would wing it....spoken like a true salesman.  Well, let's just say he brought the whole room to tears.  Us included.  Men and women in suit and ties were all choking up and dabbing their eyes.  It was pretty great to see.  We have been so grateful for our experience at the RMH and consider our ability to share our story such a huge blessing.  It never fails to humble us to see the way it touches others.

On the way home, I mentioned how strange it seems that this happened 3.5 years ago.  Sometimes it still feels so raw but other times I find myself forgetting there was ever a "before".  Having watched Calvin grow, develop and change this last year has been a constant prickle on our hearts.  Our love for our children is immeasurable but seeing the differences in Elena and Cal has been tough to swallow at times.  It has made me often wonder what Elena would be like had this never happened.  For a moment, I can almost picture her running around the room, playing with her brother.  But, mostly that image is too painful and I have to snap back to the present.

That will likely never go away.  I just have to remind myself of the different joy that Elena and Cal will bring us.  And the continued inspiration and softened hearts she will bring to whomever hears her story.  God willing, we will be able to share her light for many, many years to come.


Image from the RMH Healing Heroes Breakfast

10 Months!

So February is gone, we're looking forward to March and what happens?  A foot of snow welcoming us today.  We're snowed in, no church and a little cabin fever is on the agenda for this snowy Sunday.   Cal has been generous with his snotty nose, so we're anxiously awaiting to see who falls next.  The bright side?  The new season of House of Cards couldn't have been released at better time!

Snow and snot aside, our Cal-boy is 10 months old!  Um, I'm pretty much going to be spending the next two months on Pinterest trying to plan his birthday.  Ah!  How can this be?

Cal is busier than ever.  He started taking steps behind his elephant walker this month.  Though, his real favorite is using the kids' walkers at the Jackson Center.  His favorite toys continue to be wheelchairs, standers, walkers and Elena's orthotics.  This has resulted in many a goose-egg on his forehead.  He is definitely getting more confident on his feet but still prefers his "turbo crawl".  By this I mean, he can crawl the length of our house (which is quite a long stretch) in under a minute.  Good thing he has chubby knees to give him some padding on our wood floors!

Cal still loves babbling, eating, random screaming and making his sister laugh.  He has discovered clapping his hands and can wave pretty sweetly.  His favorite show is Wheel of Fortune.  He will sit still for the entire 30 minutes staring at the TV, though like most of us, grows impatient at the commercials.  We took him sledding for the first time and found him to be quite unimpressed.  He maintained the same expression from top of the hill to the bottom.  Sledding and snow aren't too exciting for him.

He is growing much too quickly.  Chad and I say nearly every day that we wish he would stay this little and cute forever.  It's such an adventure to watch him change and explore.  That, and watching him interact with Elena has been a joy.  She LOVES him and hardly ever minds when he pulls her hair, sticks his finger up her nose, pokes her eyes or crawls on top of her.  Everything he does is funny to her.  It's pretty great.

Speaking of Elena, she's doing really well.  The results of her hip surgery have been awesome.  She is still gaining strength but her balance, posture and movements have all improved.  The three months of surgery and recovery were certainly a challenge, but she is SO much better off.  Elena also got to go sledding this month.  We rigged up a sled for her to be able to go by herself, and she loved it!  It's so special when she can do things independently.  I see many more years of sledding ahead of us!  We also started her on a new formula, hoping it will improve her reflux.  So far, we have had good results and are praying this may be the answer for her frequent vomiting.  It's required a few more less convenient steps for us, but if it saves me from cleaning up projectile barf every other day, it will be well worth it!

I'll leave you with some pictures and a couple videos of our two crazies.  Life is still proving to be a bit hectic and stressful around our house with all we've had going on this year.  Chad's Mom has improved, so thank you to all of you who have included her in your prayers.  We just try and take things a day at a time, and relish in our little joys.

 Our sledding crew:  Brennley, Cal, Elena, Amelia & Huddy

 Me & my mini man-version

 Exciting trip to Target

 Discovered the dish washer

 No caption needed

 Beach Day at school with 3in of snow and negative degree temps....

Cal's 10 month picture sans his sticker which has been lost!

Elena sledding!