Sunday, March 24, 2013

Happy 9th Casting

Shriners' Hospital is, and I suppose always will be, a place that evokes a multitude of emotions from me.  It is such a beautiful, happy, child-oriented place (in Greenville, SC).  It is also the place that is literally rescuing my precious son and placing him back safely in my arms.  Every time I am there, I am gripped with the reality that without Shriners' Mehta casting program ... Jackson's life would be either tragically short ... or painfully ridden with invasive surgeries and a childhood spent in the PICU.  I am eternally thankful for the creation and availability of Mehta casting for Jackson's Progressive Infantile Scoliosis.  I know it sounds dramatic, but any parent of a child with complex medical needs would agree:  sometimes, I feel like I could fall to my knees to thank Shriners' for saving my baby.  Since that would look ridiculous, I save those moments for God.

Then, there is another side of being a Shriners' family (or ANY other children's hospital).  It's the bear-it-all-honestly part that I must mention.  Every time I'm there, I have a least one "this is not how I pictured my life at 27" thought.  Let's be real people ... don't most of us picture our "young family life" happily married, in that cute little home with the picket fence, a few well-mannered children skipping through the front yard waving butterfly nets and laughing?  If you had asked me how I pictured marriage/motherhood when I was 15, or 18, or 23 ... although not 100% literally ... this is what I would have told you.  While I know not everyone's quintessential "young family life" is the same, I seriously doubt anyone pictures themselves spending many, many days in a children's hospital.  It takes its toll.

However, in the very same moments that I think "whoa, this is tough," I am countlessly reminded at Shriners' that no one asks/causes/deserves to frequent a children's hospital.  This is life.  And whether it's a special needs child, a personal journey with profound illness, a dependent spouse, or elderly disabled parents ... most of us eventually find ourself in this humble position.  No one expects it.  Few prepare for it.  But, this is life.  I never expected my son to spend more months of his babyhood/toddlerhood in a body cast than out of one ... and the sweet mom beside me in the surgical waiting room didn't expect her 3-year-old daughter to need a leg amputation ... and the handsome teenage boy coming toward us surely didn't picture requiring the assistance of a walker to ambulate before he earned a driver's permit.  It happened.  It is now.  And we make the best of it.

I'm not sharing these things with you in the spirit of pity.  Honestly, I just have a lot of time to think and reflect on these long trips ... and I'm sharing my heart.  By reading my blog, that is what you are asking me to do!

Okay ... enough with the heavy ... and onto some pictures from our trip to the Greenville Shriners to get Jackson's 9th Mehta cast for Progressive Infantile Scoliosis.

Jackson's pre-op exam on Wednesday went well.  As usual, we were there for a few HOURS.  However, we found ways to pass the time ... and eventually met up with Jackson's orthopedic surgeon, Dr. Stasikelis, who completed Jackson's mini-exam in the hallway in this red wagon.  :)  This time, we didn't take any x-rays in or out of the cast.

Jackson was scheduled for his casting at 10:30am, and we were to arrive back at the hospital at 8:30am on Thursday morning.

For the entire week prior to our travels, Jackson had been telling everyone about the "skateboard cast" he was going to get.  This excitement and eagerness continued at Shriners.  I'm telling you, Jackson is phenomenal.  The kid actually likes his casts ... and ... sometimes, I think ... likes getting casted.

Finally!!!  I snagged a photograph of Jackson with his doctor in the PACU.  Here is one of the kindest and most brilliant men in the world:  Dr. Peter Stasikelis!

We love him!

*   *   *

Fastforward a bit, and Jackson was wheeled back to his hospital room.  He was already awake and quite content.  The truth is, I think Jax is so USED to his casting surgeries ... he doesn't sweat it!

(here, you can see his plaster cast before any moleskin or duct tape is applied)

The nurses were singing his praises when they brought him to us.  They said he has the BEST disposition for a toddler undergoing these procedures.  They cannot believe that he willingly goes into the OR on the stretcher ... without pre-meds ... without us ... just chatting everyone up.  We are pretty amazed by this fact as well, but that's how Jackson has always been.  When they tell him it's time to go to the OR, he literally says "bye Mommy!  bye Daddy!" and lets them wheel him away.  Too bad it's not that easy on us!  How I'd love to be a fly on the wall for their conversations in the operating room with that stinker!

After about 45 minutes, we went down to the "cast room" for moleskin and duct tape application.  Soon, Jackson was clad in his "skateboard cast."  So cool!

(giving a thumbs up)

*   *   *

What news did we get this time from Dr. Stasikelis?

Well, he did not take any x-rays of Jackson's spine.  However, judging from inspection and palpation, he says "Jackson looks really good."  Therefore, he instructed us to return to Shriners' next time (in late May) WITHOUT REMOVING THIS CAST.  Dr. Stasikelis wants his technicians to remove this cast very precisely ... in case ... it is used to make Jackson's removable brace!!!  If Jackson's x-ray in May measures ZERO degrees or curves to the RIGHT (opposite his scoliosis curve), a plastic brace will be made from the "skateboard cast."  Jackson will still undergo a 10th casting in May to hold his spine straight while the brace is being made.  However, I absolutely MUST mention ... that if his x-ray does not measure ZERO or curve to the RIGHT ... Jackson will proceed with serial casting as we have been doing.  So, we are thrilled to have been given the first instructions that a brace MIGHT be in the near future.  Nevertheless, we are not overly hopeful.  It is VERY difficult to obtain a ZERO measurement on a toddler ... with or without a scoliosis diagnosis.  Therefore, we are certainly not getting our hopes up.  We can say this with a fair amount of confidence, however:  we are on the home stretch!!!

*   *   *

Now, we request each of you to pray, pray, pray for Jackson's healing spine.  Please PRAY that his x-ray measures ZERO so that he can enter the next phase of his treatment!  PRAY for God's will, for wise counsel, and for sound decision making on the part of the doctor and Justin and I.

Thank you!

*   *   *

I'll end with a few lighthearted pictures from our trip to South Carolina.  A live music festival downtown on the evening of Jackson's casting.  We had a lot of fun!  Enjoy.

(taking pictures like Mommy)

Happy 9th Casting, Jackson, our Hero!


Stephanie said...

Just wanted to thank you for sharing your story. Your blog is one of the first sources of information I came across when I started looking for information on progressive infantile scoliosis. Our daughter is fourteen months old and has PIS. Her MRI will be next Tuesday, and then we wait to be scheduled for casting. Reading your posts has been really helpful in preparing for what's to come.

JenHeath said...

I am so glad to hear that Stephanie! A lot of newly diagnosed families are finding my blog all over the country! Please don't hesitate to write me at with ANY and ALL questions you might have. Best wishes on Tuesday and all along your PIS journey!