journeys with jax and oliver: Let It Be

"Let It Be" by The Beatles kept playing over and over in my head ... And I heard it everywhere too. It rang through the radio in Roanoke antique stores, and it played as the "on hold" track at a doctor's office I telephoned.

When I find myself in times of trouble, Mother Mary comes to me ...

Speaking words of wisdom, let it be ...

And in my hour of darkness she is standing right in front of me ...

Speaking words of wisdom, let it be ...

I hummed along.

Days after returning from another horrific experience at Shriner's Philadelphia, we loaded up our minivan for the 8 hour trip to Greenville, SC for Jackson's consult with his new orthopedic surgeon. We stopped in Roanoke and spent the first night there to break up the long road trip with the boys. It was a comforting place to be in such an uncomfortable time.

Neither Justin nor I knew what to expect when we arrived at the Shriner's Hospital in Greenville on Wednesday morning. It has been SUCH a long time since I have used the words "good" and "Shriner's" in the same sentence, so brace yourself: our total experience at Shriner's Greenville was good. Actually, we were blown away, and I was moved to tears several times.

First, Shriner's Greenville is in a nice town, not an inner-city slum. For the first time, we felt safe visiting the hospital. The Shriner's Greenville also looked like a REAL hospital rather than a third world country clinic. It was clean, child oriented, and the equipment looked current and organized. Most importantly, it was populated by kind professionals who made us feel welcome. We were greeted by volunteers who gave us a small tour, and spoke nicely to Jackson. And, being a Southerner, there was a healthy dose of "honeys, sweeties, and darlins" that made me feel relaxed and at home.

The lobby was complete with a small waterfall and wildlife display. And upon being escorted to his exam room, Jackson was given goldfish crackers, juice, and his choice of a DVD to watch as we waited for the doctor.

Here's the Shriner's Greenville, SC lobby:

A far cry from this exam room we were placed in in Philadelphia last week:

(yes, those are dirty linens on the stretcher)

Jackson got another X-ray of his spine, we told our story to a gentle PA who we really liked, and soon we met Jackson's new doctor: Peter Stasikelis. We were instantly pleased. Jackson's COBB was measured between 15-18 degrees and his RVAD (rib slant) was measured at 4 degrees. Dr. Pete told us that, although promises are never made, he thinks Jackson's Progressive Infantile Scoloiosis still shows a high potential to be CURED with a continuation of serial plaster Mehta casting. He did inform us, however, that he likes to continue casting until the spinal curvature measures 0 degrees. That translates to many more travels to SC for our family, and many more months of wearing a torso cast for Jax. However, it also translates to a doctor who is committed to preserving the integrity of Dr. Min Mehta's life work on curing PIS with slow and gentle early correction. It means I will no longer have to push Jackson's medical team to provide him with proper treatment. Hopefully, they will provide it naturally.

Dr. Stasikelis inspired us with a new wind of confidence. He used Dr. Mehta's name multiple times in his discussion with us about casting. He also ensured us that his casts will look somewhat different than Jackson's previous 5 casts because he more closely follows the true Mehta-style casting. I suspect Jackson may be soon facing another adjustment period in his next cast. He also instructed us on an exercise to do with Jackson that we have never before been shown. It stretches his curve. Dr. Stasikelis also mentioned God twice during Jackson's exam. That too was inspiring.

The only moment of dispair during this Shriner's visit came at time to schedule Jackson's next cast. The doctor was unable to squeeze Jax into his OR schedule for the following day because he was overbooked. The next available casting date was 9/20. I left this hospital feeling sick to my stomach about Jackson being out of his cast for a total of 6 weeks. I am so afraid of losing ground with Jackson's scoliosis correction. Being a "cast family" is difficult at times. Although Jackson has adapted so well to life in his cast, we still have to be extraordinarily careful about keeping the cast dry and keeping Jackson free of illnesses because he cannot fully expand his lungs.

However, the next morning while I was drying my hair in our hotel room, the telephone rang. There had been a cancellation for 8/28 and Jackson had been moved onto the OR schedule for next Tuesday.

So with joy and thankfulness in our hearts, we headed back to Roanoke to rest for the night before driving home just long enough to pack for our next trip to South Carolina.

***

Adding to our happiness was the fact that our road trip to Greenville take us close to Justin's dad who lives in Georgia. Our trips home also bring us past Justin's Mammaw's home in Chilhowie, Va. George drove up to Greenville to have dinner with us and to meet little Oliver for the first time.

Look at that b.e.a.u.t.i.f.u.l. Carolina countryside just outside the BBQ restaurant where we ate dinner.

Again, quite different from our view in Philly:

Then, we stopped by Mammaw's for some wonderful country cooking and visiting with family. I just love seeing lovely Mammaw with her great grandsons!

My heart is finally feeling a bit of rest. I am exhausted, but not heartsick for the very first time ever on this long journey with Progressive Infantile Scoliosis. I am working on forgetting our terrible experiences at Shriner's Philadelphia, and I am optimistic about our new team at Shriner's Greenville. I feel encouraged that we made the right decision to transfer Jackson's care, and I hope that he continues to experience healing there. Mostly, I am learning to "let it be."

Please keep us in your prayers.

***

Look who discovered his footsies on this little adventure: