Sunday, March 31, 2013

Huntin' Eggs

Happy Easter, everyone!

May today always be a reminder that we serve a RISEN Lord ... something no other religion can claim ... victory over the grave!  Hallelujah!

With little ones, we also found a few ways to celebrate some of the fun holiday traditions as well.  This morning, the Easter Bunny came to visit!  Much like at Christmas, this was the first year Jackson actually "got it."  He was so excited to catch that first glimpse of his Easter basket!

And ... on Friday, I took the boys to an adorable Easter egg hunt with our mom's group!

(I'm the goof ball sitting down with the kids ... ha!)

Ever since Friday, Jackson hasn't stopped talking about "huntin' eggs" and "choclat."  It is so cute watching little ones discover fun aspects of the holidays and begin to look forward to them as they grow.  And, after watching his big brother enjoy all of the surprises inside the Easter eggs, Oliver got his first tooth today.  Our little Easter miracle.

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!

Friday, March 15, 2013

The Flower and the Bee ... Goodbye Cast #8

I know every parent thinks their child is brilliant.  However, Jackson truly is!  (Haha)

Regardless of whether he can actually be classified as brilliant, Jackson is the most brave and kind hearted child I have ever meet.  He has a true Hero's character.

Today marked the removal of Jackson's 8th Mehta cast.  At this time, Jackson has been being casted for Progressive Infantile Scoliosis for 18 months, longer than the first 16 months of his life before he wore a cast!  And in true Jackson spirit, he marched into the hospital today ... making conversation with the ladies on the elevator, announcing "this place is so cool" when we walked into the orthopaedics office, never shedding a tear during the removal of his cast, and saying "thank you" to his doctor.  

"He's a really neat kid," she exclaimed at his remark.

We agree.

This time, Jackson also told us about a new analogy he has imagined.  We think it's pretty amazing.  Just before he doctor turned on the LOUD cast saw, Jackson said:

"I am the flower, and that (the saw) is the bee!  Buzzzzz!"

I am so proud of my baby.  He has overcome so much ... and instead of responding with fear, he usually responds with gratitude ... and now, with creativity!  I love that he imagines the saw is a loud buzzing bee instead of something to be afraid of.  He's just the best!

Here's his regular pre-removal photograph with Daddy this morning.

Smiling for Mommy as the doctor removed his duct tape covering.

Telling everyone about the flower and the buzzing bee.

Finally!  A couple of photographs WITH Mommy!

Removal time!

RESULTS BELOW ... after the comparison, as usual.


At diagnosis:

Prior to Cast #1:

Prior to Cast #2:

Prior to Cast #3:

Prior to Cast #4:

Prior to Cast #5:

Prior to Cast #6:

Prior to Cast #7:

Prior to Cast #8:

Prior to Cast #9 (TODAY!):

Here's to hoping we are STRAIGHT and continuing on the HOME STRETCH!

Oliver Being Oliver

Oliver being Oliver:

forever fussy, and best soothed by food ...


It's hilarious!

The Circus

On Monday night, Justin and I took the boys to a tiny Circus.  We had three coupons ... so our entire family went for $15.  Even at THAT price, we were skeptical at first.  When we walked into the Sportsplex to find that the entire Circus occupied only half an ice rink ... we were a bit concerned.  However, we had already told Jackson and Oliver that they were going to see the Circus, so we stayed.

I'm soooo glad we did!!!

We have been to three Circuses over the last few years ... and this one was, hands down, the BEST!  I would have never thought that this tiny traveling show would have topped Ringling Brothers Barnum & Bailey ... but it did.

It was small, but high quality.  Every act they did, they did well.  Also, we got to sit close enough to see everything ... even the performers faces.  It was just the perfect little Circus for kids!

And ... when asked:

"What was your favorite act?"

We couldn't beat Jackson's response:

"When the camel went peepee potty!"

Leave it to a two-year-old to love that part!

Saturday, March 2, 2013

Oliver Is Ten Months Old!

Oliver is TEN MONTHS OLD!!! (eek ... double digits)

22 pounds, 10 ounces (65%)
31 inches (> 95%)
17.5 inch head circumference (25%)

(quality photograph with Oliver looking at the camera and smiling = impossible)

At ten months, Oliver:

is enormously long and has difficulty fitting into clothes ... requires 18-24mo. due to length
wears size 4 Huggies
eats every meal like it's his last (5 bottles, three baby foods, AND a bowl of cereal with prunes, AND Gerber snacks, AND any table food he is allowed)
still doesn't have signs of a first tooth
loves Wookie
can crawl, but prefers to "freestyle" maneuver ... a combo of crawling, scooting, and rolling to move as fast as possible across the room ... and he's fast
can, unfortunately, climb up the stairs
is pulling to standing and cruising on furniture
waves "hello" and "bye bye"
mimics Mommy saying "ehh, ehh" (no!) to him ... which makes me laugh
has a silly habit of putting one finger in his mouth after each bite of food ... which is also a very messy habit
perpetually looks like "Pigpen" from Charlie Brown (I swear I bathe him!)
arches his back and stiffens up at approximately 4 ft. away from his carseat in anticipation
continues to have an odd fascination with electrical cords and hang upside-down
enjoys playing with (and occasionally eating) dog kibble 
had his first haircut this month
earned his first certificate (for swimming lessons) this month
says "MaMa," DaDa," "NeNe," "Hi," and "Ehh, Ehh!"
had already learned to scream "NeNe" (grandma) when he doesn't want to obey Mommy
fusses incessantly IMMEDIATELY upon the arrival of food at the dinner table
is a carb-o-holic ... and can (seriously) gum down 2-3 dinner rolls at a sitting
requires near constant stimulation to keep him content
thoroughly lives up to his "Billy Goat" nickname
is best described as "scrappy"

... and, as you can probably tell from the above list, keeps EVERYONE on their toes 24/7 ...

... yet fits perfectly into our family!

Happy Ten Months, Baby Boy!

Check out Mommy's ill-fated attempts at catching a snapshot of "Billy Goat" ... ahem

"Your camera ... MY CAMERA!!!"

"Oh ... you wanted to measure me with this tape measure???"

"Let's see how long I can ignore you ..."

"Check out the tongue, Ma!"

I'm telling you ... scrappy!


But ... seeing that the attention was on Oliver, I did get a "Hey Mommy, take a pitsher!" from someone else I know.

Forever the charmer.

Goodnight ... I'm exhausted!