Big Month, Big Nerves

August 2, 2012

It’s going to be a big, big month.  We’re going to need lots of prayers!  I’m already anxious about all the appointments we have in August.  It really feels like the next couple of months will be very telling of Elena’s prognosis for her long term recovery.  As I mentioned before, it has seemed that things have been coming together.  We’ve had lots of different issues floating around, while Chad and I have been trying to wrangle them and get everything under control.  It finally appears that we’re on the right track and things are getting resolved.

Next week, the 9th, Elena will finally be getting her Botox injections.  We have VERY high hopes for this procedure.  Right now, Elena’s tone is really dictating her progress.  It’s been a vicious cycle of…she can’t do this…because she can’t do that…and because she can’t do that….she can’t do this….and so on.  It all comes back to getting her muscle tone under control.  We are praying the Botox can give her the edge she needs to overcome the nasty muscle tone that keeps her so rigid and uncomfortable.  Ideally, once her tone gets under control, she’ll have an easier time with her motility, hence making progress in just about every other area we’ve been working.  So, prayer request #1 (of many!) is that the injection process goes well (for Elena and Mommy who has to watch her baby get injected many times).  #2 is that we get the desired effects from the medication and we see some great progress.

Since we’re beginning the Botox treatment, we’re upping her physical therapy each week.  We have a Home Health company coming out next week to evaluate Elena and begin more therapy 1-2x more per week.  That means saying goodbye to more “free” time each week.  Elena will have PT 2-3x per week in addition to her Speech and OT.  Therapy 5x per week seems pretty daunting at the moment.  But…anything to give my girl an extra edge.  #3 pray that we can manage this increase in therapy and more importantly that Elena shows some good improvement.

We have a swallow study scheduled for the end of the month.  This is huge.  We’ve come a very long way since we began oral feeding in January.  We could barely manage a few squirts of an eyedropper then.  Now, we’re working on liquids, puffs and spoon feeding.  I’m very, very anxious about this test.  It will give us much more information on Elena’s swallowing abilities.  This test will dictate Elena’s feeding for the foreseeable future.  I just don’t think Chad and I can take any more setbacks at this point.  So #4 pray, pray, pray that Elena can give a good test and there won’t be any major issues revealed.  I’m already nervous just writing about this!

Lastly, Elena has two major doctor appointments this week.  The biggest of the two is her first appointment with a GI Specialist.  As you know, we’ve been fighting horrible, awful, raging reflux since getting her G-tube.  I can’t even explain to you how heartbreaking it is to see her struggle with this.  Nothing has helped.  She’s been on three different meds, special formula, sleeps on an incline and still fights it all day and all night.  #5 pray that the doctor will be helpful and offer up good solutions other than more surgery.  In all my research, I’m aware of the surgical options and I really, really, really don’t want to have Elena go through any more hospital trauma.

Her other appointment is with her Neurologist.  We don’t expect anything major, since she’s done great being off the Phenobarbital.  However, EVERY doctor appointment is anxiety-ridden and since she still hasn’t had any head growth, we don’t want to hear any more bad news.  #6 pray for her sweet, little head.  It’s heartbreaking every time they pull out that tape measure.

As you can see, I’m likely to be a ball of nerves all month long.  We so appreciate your prayers and notes.  Just this week, I received a card from a dear family that, even though I haven’t seen in probably 10 years, I think about very, very often.  You have no idea how much those mean to us.  So, thank you again from the bottom of our hearts for all of your love, support and encouragement.  It helps us stay positive and keep going.

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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