journeys with jax and oliver: May 2013

Sunday, May 26, 2013

Divine Appointments

I have always believed in Divine Appointments: that most of our meetings aren't coincidence.

On Mother's Day 2013, I was down in Roanoke, Virginia for a double photo shoot. That morning, my first session of the day cancelled due to a conflict. I was bummed. Really bummed. Honestly, I moped around for a good hour ... complaining about losing time and money and having had to turn away another client earlier in the week. My mom and MIL convinced me to just enjoy having more time with the boys. Reluctantly, I agreed.

Around 11am (when I would still have been busy shooting), we went to Cheddars for lunch. When we walked in, we ran into a woman named Donna Robbins. This is going to sound like a "strange" connection ... but Mrs. Robbins in the mother of my cousin's ex-husband. She has always and continues to be very kind to our extended family. She greeted us with warm hugs and genuine conversation. Knowing that she is an incredibly faithful Christian woman, I asked her to pray for Jackson's healing.

She appeared utterly revived to do so! She told him that she was part of an intercessory prayer team at her church and that they often prayed for healing. She said that everyone they have petitioned the Lord for has received His blessing. She told me that she knew God wanted to and was going to heal Jackson's spine.

* * *

You know the rest of that story, right? We returned to Shriners Hospital on 5/22, and Jackson was deemed CURED of his Progressive Infantile Scoliosis. And ... remember that unexpected phone call I received from his surgeon on Monday? That's right. Even if Jackson was ZERO, I still expected a 10th casting. It never crossed my mind that he would be so blessed to stop casting after #9. Also, his cast, although broken in two places, was able to be used for brace construction.

Want to hear more?

Beginning THIS month, Shriners Hospital was going to begin charging co-pays for anesthesia. Jackson didn't require anesthesia because he wasn't casted again.

And more?

The timing is perfect. First, it is Summer. And ... if everything (prayers please) goes as expected ... Jackson should wear his brace this year (ages 3-4) ... then he will have x-rays every 8 weeks the following year (age 4-5) ... then IF HE IS STILL STRAIGHT he will only need follow-up every 6 months. That will line up precisely when he begins Kindergarten. I LOVE the thought of him not having to be pulled from school for medical travel! God is so good!

Still more?

There was another Divine Appointment in store for us in Greenville. Remember how I have mentioned that his blog has become an information source for newly diagnosed PIS families? Well, one of the families I have mentored the most had an appointment the same day as we did. They are from Georgia ... and we have spoken over the internet and telephone for months. Yet, I never dreamed we'd get to meet face-to-face. We did! Their little Camden is the youngest baby ever to be casted at Shriners Greenville. He is 9 months and just got his 2nd cast. Seeing them, I think we were able to provide a glimmer of hope for Camden's bright future! It also gave me the warm fuzzies to know that Jackson's journey is saving the lives of other children. I know God is going to heal Camden's spine as well.

(you can read his story at: http://camahedy.blogspot.com)

* * *

Today I am thankful. I am thankful for the Lord's grace. I am thankful for Divine Appointments. I am thankful for Donna Robbins. I am thankful for bath time ... for swimming pools ... and for the beach. I am thankful for being able to lift Jackson into my arms without a struggle. I am thankful to see Jackson sitting in his carseat with his knees drawn up to his chest. I am thankful to watch Jax sleep curled up in a ball. I am thankful for Heather Hyatt Montoya of ISOP. I am thankful for her daughter Liv who pioneered this treatment. I am thankful for Dr. Min Mehta, for her personal struggle with scoliosis and her determination to find a cure. I am thankful Shriners Hospitals. I am thankful for Dr. Peter Stasikelis (and even for Dr. Cahill who applied Jackson's first 5 casts). I am thankful for Duck Tape. I am thankful for being able to touch my son's skin. I am thankful for an ability to worry less about germs, and falls, and spills. I am thankful for straight spines. I am thankful that my son is alive and thriving.

Today I am thankful that God promises us this:

"Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them."

Matthew: 18:19-20

And he delivers!

Jackson's First Pool Day

There isn't much I take for granted anymore ... and pool days certainly aren't one of them.

For the first time in two years, my brave Jax was able to go swimming this week at our hotel in South Carolina. Although I had feared it, he certainly had NOT developed a fear of the water!

We all had a blast just watching the unbridled joy on his face ... and enjoyed a few laughs as he sang out the lyrics of a favorite Lorax song:

"I just went swimming, and now I glow!"

Saturday, May 25, 2013

Jackson = 1, Scoliosis = 0

As many of you know, this week was monumental for our family. We knew back in March that Jackson was supposed to wear his 9th Mehta cast back to Shriner's Greenville to be removed on-site for x-rays. We were told in March that if his x-rays were absolutely perfect during our May visit ... he would be casted for a 10th and final time on May 23rd, 2013.

However, this past Monday (5/19/2013) I received a highly unexpected phone call from Jackson's surgeon, Dr. Peter Stasikelis. I was caught very off guard when my cell phone rang that afternoon and I heard his voice on the line. He called to tell me that after reviewing Jackson's chart and previous x-rays, he wanted the brace maker, Dave, to see Jackson wearing his Mehta cast #9 before it was removed on Wednesday. He said that (although he could not promise me) ... he had a gut feeling that Jackson's back was going to be straight. He also told me that he had decided NOT to cast Jackson a 10th time if this was the case. However, so many things must line up perfectly ...

1. Jackson's cast must be appropriately sized to form his removable brace.

2. Jackson must cooperate for his x-rays.

3. Jackson's spine must measure 0 degrees.

4. Jackson's cast must be in good repair to be used to mold a brace.

We needed a lot of prayer!

These were some TALL orders ... but we serve a BIG God!

* * *

On Wednesday, Dave (the brace maker) decided that Jackson's cast looked appropriate for constructing a brace. We were ecstatic! Jackson 9th Metha cast was removed (the two cuts you see in the photograph) ... and although it was broken in TWO places (toddler boy standard) ... it was usable for brace construction! Praise God! We love you "skateboard cast"!

Jackson's back looked awesome to the naked eye ... but only quality x-rays would tell us the results. Unfortunately, Jackson REFUSED to cooperate for the x-rays. He wasn't "misbehaving;" however, he thought it was a game to slouch, jump, and twist when told to "stand up straight and tall." As you can imagine, we were upset. The x-ray technician took two x-ray films, one standing and one sitting. Neither appeared perfect.

Shortly after, Dr. Stasikelis asked us to step into his office. He showed us Jackson's x-rays. He could measure a 2.18 degree curve ... but there was a catch! Using his tools, Dr. Stasikelis drew lines through Jackson's vertebrae and showed us that the "apex" (most displaced, scoliotic vertebra) of Jackson's curve had moved from T-11 to T-4. Then, he explained to us that: "THAT DOESN'T HAPPEN." Translation: The true scoliotic area of Jackson's spine was at 0 degrees!!! The 2.18 degree "curve" was created by Jackson's lack of cooperation and tilted head (which could also be seen on the x-ray). Justin and I held our breath. Then, Dr. Stasiklis said the words we have been waiting to hear for almost 2 years:

"He needs to be closely monitored, but for the time being, Jackson is CURED."

Overwhelmed.

Shocked.

Dumbfounded.

Joyful.

Thankful.

Scared.

Awe-struck.

Immensely happy.

Every emotion I have experienced on this l.o.n.g. journey coursed through my body in a single instant.

Everyone went back into the exam room ... and while my mom and I cried happy tears ... Dr. Stasikelis went over brace instructions with our family.

A few moments later, Jackson was invited to choose his brace design in the prosthetics and orthotics area of the hospital. He choose a bright blue brace with soccer balls and cleats on it. He is quite excited about it.

* * *

We will return to Shriner's Greenville on June 7th to pick up Jackson's brace and learn about it's care. He will wear this plastic, removable brace for 12-18 months, until he outgrows it. However, he will now be able to bathe, swim, spill, and avoid general anesthesia every 6-8 weeks!

We still VERY MUCH need your PRAYERS! Please pray specifically that this is a PERMANENT CURE for Jackson's spine. Once in his brace, Jackson will be seen at Shriner's every 3 months for x-rays and a "brace check." As with any progressive disorder, Jackson will not be truly "out of the woods" until he stops growing, around age 21. There is always the scary possibility that Jackson will have to return to body casts or have spinal surgery in the future. However, when treated early with Mehta casting ... the cure is "usually" permanent. Let's live in the present and enjoy its blessings! Right now ... today ... Jackson is CURED of Progressive Infantile Scoliosis.

* * *

Please share this link with your pediatricians (and visit it yourself):

http://infantilescoliosis.org/ISOPScreeningGuide.pdf

Progressive Infantile Scoliosis (PIS) is a hugely under diagnosed childhood condition. The overwhelming majority of pediatricians are unfamiliar with its detection and its treatment. Most will delay a child's treatment and "observe" the curve until it's too late and the child requires a hugely premature spinal fusion. Although it is rare (1 in 10,000) ... I know from our journey that it AFFECTS MANY FAMILIES! If children are diagnosed EARLY and CORRECTLY ... they can be CURED on this awful deformity that was once (as recently as 2001) terminal. Mehta Casting is a gentle and non-invasive approach with truly phenomenal results. Spread The Word!

Here is a photo of non-treated PIS (very different than 'regular' scoliosis):

... And here are the photos of Jackson undergoing his successful treatment with Mehta Casting ...

At diagnosis, age 4 months (September 2010):

Prior to Mehta Cast #1 (September 2011):

Prior to Mehta Cast #2 (November 2011):

Prior to Mehta Cast #3 (January 2012):

Prior to Mehta Cast #4 (March 2012):

Prior to Mehta Cast #5 (June 2012):

Prior to Mehta Cast #6 (August 2012):

Prior to Mehta Cast #7 (November 2012):

Prior to Mehta Cast #8 (January 2013):

Prior to Mehta Cast #9 (March 2013):

Prior to BRACING at 0 degrees!!! (May 22, 2013)

Jackson = 1

Scoliosis = 0

Praise the Lord!

Wednesday, May 8, 2013

Jackson: Age 3

Jackson Scott Heath

... at age 3 ...

Today, I was a little heartbroken to realize that I hadn't done a 2-year update on my Jax. So, in the spirit of being "better late than never" ... I am giving you a 3-year update.

approximately (due to cast) 36.2 pounds (90%)

38.5 inches (75%)

20 inch head circumference

Favorite Movies:

Wreck It Ralph

The Lorax

Favorite Songs:

Thneedville

Big Block Sing Song (Through The Night)

Favorite Colors:

Red

Orange

Favorite Toys:

iPhone

anything with wheels

basketball hoop

push toys, which he calls "bicycles"

Favorite People:

NeNe

Mommy

Daddy

Best Friends:

Ben and Elizabeth Hershey

Favorite Foods:

chicken

chips

berries

Hates:

time-out

having his face washed

transitioning to a new task when he's having fun

Loves:

his cast

riding fast rides

trains

Future Career Aspirations:

doctor

firefighter

circus ringmaster

* * *

At 3 years old, Jackson amazes us daily ... and continues to inspire us more than most people can realize. He is so incredibly brave, charismatic, and resilient. He is the LIGHT of our lives.

Happy Third Birthday, Jax!

Lorax Party!

Thank you to everyone who has well-wished and celebrated Jackson and Oliver's birthdays with our family. On Sunday, May 5th, we threw an awesome "Lorax Party" for the boys at our favorite Mexican restaurant with close friends and family. It was a blast ... and Jackson is still singing "Happy Birthday" and telling everyone about his "Lorax cake"!

Here are some photos from the boys' special day ...