Big Changes!

July 19, 2012

It has been such a great week at the Hinton house.  For once, it feels like a few of the lingering issues are beginning to be resolved.  

I have officially given Elena her last dose of the yucky Phenobarb!  God is GOOD!  We made it through a 12 week wean without any seizures.  I can’t tell you how big that is.

We’ll have to continue to be very cautious, as Elena will be at a very high risk for seizure likely for the rest of her life, but we are so pumped to be off one more med.  It feel so good to us, so I can’t imagine how much better Elena feels without feeling the effects of that drug.

Botox is coming.  I swear.  After hours of hounding the insurance company, following up with the doctor, claims denied, claims appealed, more hounding the insurance and more following up with the doctor, we’re approved (until next year….).  It’s only been since mid-April that we’ve been waiting for this to happen.  We’re hoping to get the injections in the next two weeks.

We’re oh-so-close to moving forward with the Swallow Study.  Our therapist has wanted Elena to be fully prepared for this.  The last couple weeks, Elena has really started to show improvement with her ability to eat (still very, very small amounts).  Once we have the study, we can see how she’s eating internally, if that makes sense, and will be able to increase the amounts and kinds of food/drink we can work with.  Please send up some major prayers for continued improvement so we can take on this major hurdle!

Elena began rockin’ some killer boots this week too.  They’re called “AFOs” and they’re used to keep her feet flat.  Her toes are always curled under (as a result of the muscle tone) and she stands on the balls of her feet.  These boots will prevent shortening of the calf muscle, keep her feet flat and provide good support for when she begins to weight bear on her legs, and eventually…hopefully stand and walk.  Just to make Daddy proud, I ordered the boots not with Dora the Explorer, not with Barbie, not hot pink but…….

HOOSIER BOOTS!  Chad is already pumped to get Elena tailgating this fall in her boots 🙂

Lastly, Elena helped me celebrate my 28th birthday this week.  We celebrated with stretching, some vision exercises, a nutrition appointment, occupational therapy and a quick trip to the mall (thanks Chad!).  My how my birthday celebrations have changed!

While it often seems like we have so many forces fighting against us, Chad and I felt like we scored some victories this week.  It feels good to check off those unresolved issues off the list.  We thank God for every victory, big or small, doing our best to take each day at a time.    

The next few months we will be facing some big challenges in her recovery.  We so appreciate your continued prayers and support.  They’re not only comforting to Chad and me, but we know God hears every single one.  We love you!

All dressed up for Mommy’s birthday**Thank you Great-Aunt Ginger for the adorable outfit!
P.S. Chad mentioned to me this week that he misses reading your comments on our CaringBridge so feel free to leave one in the comments section below this post…..he’s so high maintenance 🙂 jk!

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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