4 Down 3 to Go

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 into his own recovery and even FaceTime a fellow kiddo with Apert Syndrome and offer some encouragement/advice before he undergoes his own Mid-Face Advancement this week.  

Maddie and Bryce have been outstanding.  Don’t get me wrong.  Siblings are siblings and kids are kids, so it’s not all Pollyanna and Clever Family living over here.  But overall, they have accepted and even embraced that this is a different season for our family.  From being engaging playmates, to turning the R.E.D. device, to snuggling with screws, their selflessness and awareness as siblings has been beautiful for Jonny and me to witness.

Our community has been ah-mazing.  If I sound like a broken record, forgive me, but it is overwhelming and humbling to be loved the way we’ve been loved.  Meals, texts, snail mail, games, prayers, cross-country visits, gift cards, money to help with incidentals and all the bills, treat deliveries, riddles, butterflies, puzzles, finding the perfect pillow for Nay to get comfortable, sending Amazon packages, grocery drops, cleaning our house… and the list could go on!  The hardest moments have been made bearable and we've been allowed to savor the sweet ones because of how well our needs are being met by so many.  Thank you. 

There are lots of emotions to sort and sift through in the days and weeks to come.  But for now, we are thankful for a safe distraction process and are praying for the new bone to grow safely and strongly over the next few weeks.  Now that he is no longer pulling his face out, there is a notable difference in his demeanor!  He’s smiling more, much more bold and active (thank goodness he is allowed to swim!), and is eating more and more solid foods.  He looks different, but his perseverance, sweet nature and silly side are all coming back.  The kid amazes us with his steady confidence, and his love for people is so evident through his desire to be with friends, be at church and willingness to keep getting out and getting on with life!

Because Nathan is doing so well, we are super thankful to be able to travel to see Jonny’s side of the family and both of my grandmothers in a few weeks.  We are leaving vacation early though, because… 

The R.E.D. device is coming OFF on Monday, June 24th!  Surgery #19 will be a pretty quick (2hr), outpatient procedure.  He won’t feel great for a few days, but it's ultimately much less invasive and safer. Woohoo!  

Since Nay’s Trip of a Lifetime to Disney in April, he’s been pretty obsessed with Star Wars and we’ve watched several episodes as a family during his recovery.  I’m not saying his rendition below is 100% accurate… but he picked it out on his own and I’m gonna call it Pretty Good for a kid who doesn’t read music, was born with no fingers and has 10 screws in his head. <3 

Thank you for your continued prayers for his safety and our wisdom, endurance and unity in how we navigate him feeling great and still have three weeks to go…   In the words of Braveheart… “ HOLD!!!!”