Tuesday, March 11, 2014

Jackson's 9-mo. Brace Check

Yesterday was exciting!  Jackson had his 9-month brace check at Shriner's in Greenville, SC.  This was his second brace check since graduating from serial Mehta casting in late May 2013.  This appointment marked the longest our family had ever gone without a hospital visit ... 5.5 months!  And ... Except for Jackson's sudden "spilling" (puking) episode while riding down the interstate ... the trip was relatively crisis free.  But, kudos to Jax for his "spill" because, after all, every medical travel appointment needs at least ONE major anxiety-producing moment. ;-)  All was well with Jackson, so onward we pressed to Shriner's. 

The night before we left, Jackson saw me packing suitcases for the entire family (an unspoken job assignment as wife/mom).  He said "are we going on a trip?"  Reluctantly, I replied "yes ... We are going to see Dr. Pete to check on your back with xrays."  Cue the tears and protesting?  Nada chance!  Cue the jumping up and down, the clapping, the mile-wide grin, and peppering questions about the (above) video games and prizes Shriner's provides.  Two thoughts: either we have a really awesome preschooler ... or we desperately need to take better vacations. :-)

Jackson willingly stood by himself for his xray film, and Justin and I got the rare and wonderful opportunity (thanks to a stellar PA) to see and photograph Jackson's archived xrays for this blog!!!  The change is astounding to me.  Jackson's spinal curvature went from nearly 50 degrees to a BEAutiful 0 degrees because of serial Mehta casting and the guidance of the wonderful Heather Hyatt-Montoya and skilled mind/hands of Doctor Peter Stasikelis.  I can't even call those people "everyday heroes" because they are ONCE in a lifetime.  A few Sundays ago, our pastor talked about everyone needing "20 seconds of insane courage" to affect change in this world.  Sometimes I wonder if choosing Mehta casting for Jackson was my 20 seconds?  As a classically trained registered nurse, I trust western medicine.  I trust and oftentimes understand surgeries and invasive procedures. So, when metal growth rods, countless rod-lengthening surgeries, and a future spinal fusion was the recommended treatment plan for my then 4-month old ... it might seem crazy to read ... but I don't know why I didn't choose it?  That's what EVERYONE in the medical profession suggested to me. That's all that was offered to us locally or semi-locally.  But I found the Infantile Scoliosis Outreach Program (www.infantilescoliosis.org) ... And then I found that 20 seconds of insane courage.  I know now that God's grace was all over that decision ... as it is in almost anything courageous.  Let me show that to you here:

Jackson's pre-cast spine:

Jackson's spine yesterday:

No words, right?  Either that - or a thousand - because those pictures are worth it. To anyone in the valley of a Progressive Infantile Scoliosis diagnosis right now - there is SO much hope. Have courage!  Mehta casting when done properly and promptly can literally save lives. 

We waited a few minutes on Dr. Pete while the boys enjoyed one another in the exam room. 

And when he came in, he was equally pleased with Jackson's xray.  Zero degrees!  We'll take it!  We will return the Shriner's in late September 2014 for (fingers crossed) Jackson's last brace check.  He has already grown quite a bit over the last 9 months, so Dr. Pete didn't think Jackson could go longer than 6 months without brace adjustments or completely outgrowing his brace.  We ended this appointment with a visit to the prosthetics and orthotics department for some brace adjustments.  They replaced the straps on Jackson's brace and flared the brace around his chest (tear) because he is growing more broad chested (hence, growing up).  I feel like Jax has changed so much recently!  Then, seeing those xray films confirmed how much he has grown and changed ... looking at his chubby babyish form in the scoliotic film and his tall, narrow form in his current xray film. Bittersweet.  Bitter because he's growing up so fast. Sweet because it was his growth that straightened his spine with the guidance of his casts. More sweet. 

Definitely more sweet. 


Becca said...

So happy for your whole family! Praise God!

Brittney said...

Wow, amazing! I'm looking into this for my son. He is only 3 months old and was born with congenital scoliosis. He also has a missing left 4th rib and some other ribs that are abnormal on the left side, I'm unsure if he would be a candidate for the casting or not. We were told he may need a VEPTR, but if this would help, I would much rather do this. I will get to emailing places about this as well. How old was your little when when he got his first cast? Thank you for the post.

JenHeath said...

Hi Brittney! Thanks for reaching out. I have heard of the VEPTR through an "Early Onset Scoliosis and Mehta Casting" group on am part of on Facebook. I would HIGHLY suggest joining that group and getting in touch with the INCREDIBLE group moderator (and mother who brought Mehta casting to the USA and founded ISOP) ... she's amazing ... and a wealth of information. Her name is Heather Hyatt-Montoya. You'll find her easily in the group. Also, there will be other parents who might be better able to guide you through the congenital path than I can. Jackson was 16 months when he got his first cast - but his was "idiopathic progressive infantile scoliosis." Hope that helps! The group is amazing!