Madison in Action

Here's a video of Madison enjoying her swing!



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Surgery in T-Minus 5 Weeks

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I’m not exactly sure what it is about me, but I just have not been able to bring myself to write this update.  It’s almost like a subconscious rebellion…  We’ve known this day would come since we were in the NICU in Ohio…  We thought it would come last year… And yet, the fact that it is finally time for the MOST major surgery/medical procedure in a series of major medical procedures is just a bit surreal.   As of this moment, May 7th is Go Day.   Just a dude and his dog :) This post will be pretty factual as I am still processing a lot of my own emotions.  At the same time, I am humbled and thankful to my core for the army of people who have and continue to love and pray for Nathan and our family.  There is only one path ahead for my son, for my heart, for our family.   In light of that, we want to share and ask for your prayers. On May 7th, Nay will have a RED device installed into/onto his face.  RED stands for Rigid External Dist...
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4 Down 3 to Go

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Today is officially four weeks post-op for Nay, and the growth is quite remarkable!  He turned the device on average 3 times a day for 3 weeks, which ultimately advanced his mid-face just over one inch.  The kid’s pain tolerance must be super high because he never said he was above a pain level 3 or 4.  For perspective, here are two pictures from May 6th, the day before the R.E.D. device went on, followed by two pictures from yesterday, June 3rd. In many ways, it feels like we have lived a lifetime in these four weeks and the range of experiences and emotions have been vast.  Like everyone living under the sun, we have found ourselves holding significant pain, sorrow and difficulty alongside deep joy, exhilarating moments and even laughter.   There have been gut wrenching moments as we watch Nathan suffer pain, struggle to do the simplest thing or miss out on so much.  There have been beautiful moments where he has been embraced by friends, stepped int...
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RED-Y to Recover at Home!

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This was one of those weeks where time was elusive as it simultaneously crept along and caught us up in a whirled.   The Timeline Monday morning, May 6th, I awakened early and read a devotional entitled, “Do the Next Thing.”  It perfectly resonated with my paradoxical emotions.  I dreaded the 7th, I wanted to hurry up and get to the 7th, most of all, I desperately wanted to be on the other side of the 7th with my son in my arms.  May 7th was so intense. In God’s mercy, Nathan was as cool as a cucumber, and the four of us had a small posse with us in the waiting room along with a swarm of texts, pictures, etc. of friends in red, bible verses, prayers and well wishes.  To say we were being upheld is an understatement.    The surgery was supposed to be about 5.5 hours, and we got the typical text updates the first few hours.  When Jonny’s phone rang with a call from the O.R. after just over 3 hours, the conversations around me faded to the margi...
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