The Latest

September 11, 2012

Oh my goodness.  What a whirlwind the last couple weeks have been.  We rounded out August with a lousy test result.  September began with a flurry of doctor visits and more tests.

We opened last week with a visit from Elena’s Nutritionist.  She continues to be very pleased with Elena’s weight.  For awhile there, we were really pushing the scales!  Thankfully, we’ve been able to find the right caloric balance for E and allowed her height to catch up with her weight!  She’s still maintaining the 22lb + mark, which still keeps her in the 70th percentile but is nearly 31 inches also in the 70th-ish percentile range. We are so grateful to have found a formula that really seems to be working well for Elena.

Last Wednesday, Elena had an endoscopy.  Basically, they take a camera and go down her throat into the beginning of her small intestines looking for clues as to why her reflux has been so brutal.  They had to give her anesthesia for this procedure, but thankfully Chad and I were able to be in the operating room for the entire procedure.  It was a serious refresher course in anatomy!  She had some major irritation in the back of her throat and the beginning of her small intestines.  They took blood and tissue samples and we should hope to have those results and more information at the follow up appointment this week.  We are praying for some kind of answer that has a medical resolution and not just something that Elena will have to continue to endure.

On Thursday we had a follow-up appointment with Elena’s Physiatrist (her rehab doctor).  She was so, so happy with the Botox results!  Elena went from being able to move her leg (out to the side) to a 30 degree angle to over a 70 degree angle.  That’s pretty much the best result that we could have asked for.  She was really pleased with Elena’s continued progress, awareness and mobility.  She has started us on a weaning schedule of Elena’s Valium, which we are thrilled about.  We have wanted to start coming off that for some time now.  We’re hoping that we see more awareness, and less fog as she weans.  We just pray that there’s not an increase in irritability…it is a pretty hardcore, dependent drug!

Even though we didn’t get the result that we were looking for on her swallow study, we have had really great encouragement from her other doctors and therapists.  We are beginning a huge push in working on Elena’s head/trunk control, oral work and visual processing.  These really are three very critical pieces that we MUST have improvement on.  We had a new PT start yesterday and I’m already excited to have her on Elena’s team.  She came in very encouraged by Elena’s muscle tone and ready push Elena to work even harder.  We’re so lucky to have the team of therapists that we do.  They all are vested in Elena’s recovery and mean so much more to us than just a therapist who comes once a week.  They are our cheerleaders, our encouragement.  This journey would be so much harder without them!

Please continue to pray for Elena’s head/trunk control.  This is such a critical piece that so much of her recovery depends on.  I would welcome a few prayers myself.  With our new therapy schedule and new therapy goals, it all can be a bit overwhelming.  Our days revolve around therapy and me ensuring she gets a good nap so that she can make the most of each session.  That can make for VERY long days!  We’ll make it work, we might just need a little patience along the way!

As always, thanks for all your love and support!

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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

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