It's MAGEC

It seems like an eternity since I have written in this space.
Hunter's story unraveled here and started to fill this space when he was 17 months old. These pages have been a way to communicate with trusted friends and family, as well as provide an outlet for my mama heart. One day, hopefully, Hunter can read back through these pages and understand the steps to his journey and the story that God has written for his purpose.

"Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9

If you are just tuning in, here is a brief recount:
Hunter was diagnosed with a tethered spinal cord and progressive infantile scoliosis at 13 months old. He was hospitalized at age 15 months, just after he started really walking, in order to have spinal cord release surgery. At 17 months old, we made our way over to Scottish Rite in Dallas to begin scoliosis treatment. After numerous Mehta serial cast placements, he was measured for a TLSO torso brace. He has worn a brace for 20 hours a day for the last three years.

Now that we are all caught up, on to the rest of the story, as Paul Harvey would have said...
In July, Hunter had a regular progress check here at Scottish Rite, which includes x-rays, a clinic visit with his doctor, and a visit with the orthotist to complete an assessment of his brace. The x-rays showed that his curve measured about 55 degrees.
He has been on a roller coaster of varying degrees. His curve at 17 months old measured about 67 degrees, which is a good sized curve for those that aren't familiar.
(The ideal position is to be 10 degrees or less.)
Throughout the years, the lowest degree that he experienced was close to 20 degrees and it has slowly crept back up. As we have continued to see the curve increase, we have talked about further options for treatment, but they always seemed to be in the distant future-or so we thought. We were anticipating him potentially having surgery somewhere between ages 9 to 11. In July, the tone of the conversation changed. With the curve continuing to increase, his doctor gave us a couple of options with the suggested recommendation being MAGEC rod surgery.  Hunter turned 7 years old this past Saturday, so this recommendation seemed somewhat disheartening at first. After some research and conversations with his doctor and nurses, we decided that this was the best decision for his health and care. The difference between early onset scoliosis and scoliosis detected in the teenage years, is that there is a higher risk of progression and that progression inhibits growth of vital organs and affects lung capacity. James and I said from the beginning that we would pull the trigger if there was continued regression that could affect his breathing and development, so here we are.

While this sounds like a hard decision with a somewhat negative undertone, the MAGEC rod surgery at this age is a good decision in his scenario. The goal was to hold off on a spinal fusion as long as possible to let him grow and develop. Had we chosen not to proceed with MAGEC rod surgery now, we could have been looking at a situation where he could have developed a deformed chest cavity, insufficient growth of his lungs, and poor lung capacity, which could have, in turn, led to an early spinal fusion and that is a far more scary scenario.

So what are MAGEC rods? MAGEC rods are a system of magnetic adjustable growing rods that are implanted and lengthened as the child grows. Hunter has a rod placed on either side of his spine that will telescope out and adjust for growth. The rods are actually screwed into the spinal column. As he grows, his doctor will adjust the rods during a regular office visit by using a magnetic device in order to extend the rod and allow for that growth. MAGEC or magic ;) Hunter will potentially have two MAGEC rod surgeries before having a spinal fusion when he finishes growing.

We had been preparing Hunter over the last month by including him in the conversation and decisions, explaining the process, etc. We met with the child-life specialists on staff at Scottish Rite to help him better understand and allow him to ask questions. Back in August, we took a little vacation trip to the Dallas area and visited with child-life during the trip. He was able to see the critical care floor at the hospital and touch an actual MAGEC rod to see how it would extend. If you know Hunter, you know that he is very science and math minded and wants to see how everything works. This visit was perfect preparation for him.

We arrived here on Monday morning for pre-op. At Scottish Rite, the level of care for patients and families is far beyond any other facility I have ever set foot in, not to mention the incredibly friendly and caring atmosphere. Hunter had two X-rays, had blood drawn and pictures taken, met with a pulmonologist, nurses, child-life specialists, and his orthopedic surgeon. I was so proud of our guy as he sat for a blood draw and watched the whole process very stoically without the slightest flinch. We arrived here yesterday morning at 5:00 a.m. as he was the first case of the day. The nurses prepared him to go down to the surgery floor at about 6:45. Before leaving, a chaplain came in and talked to Hunter and we all held hands with she and his nurse. I know that many of you who are reading joined us in prayer on Monday morning and we are so grateful for your thoughts and prayers as they continue to bless our family.

Hunter's surgery was successful. Surgery started around 8:30 a.m. and we got a call every hour or so with an update. Surgery was completed by 11:30 a.m. and then we were able to go back and visit him after he woke up. He was under a considerable amount of pain, which is to be expected. He tried to roll, push up, and even stand at one point. They immediately got him into a safe position and worked to get his medication under control so that he was comfortable. I am told that those that ask to sit up and are a bit feisty are those that are more successful when they start to move, that colorful, determined attitude may come in handy.

His curve went from 60 degrees to around 20 degrees with the rods in place.

He had a good restful night last night and was able to sit up in a chair and begin to walk today. His sisters have been so wonderful loving on him, so far. We expect to be here until probably Friday and then will make our way home. Hunter will be out of school receiving homebound education for about 6 weeks. He won't be able to do anything really physical like baseball for about 6 months. I am honestly looking forward to some time at home with him and getting to dive back into my teaching roots working with him while he's at home.

Thank you all for the continued prayers, love, and support. We're so thankful for our community of family and friends!



(You can also find other pieces that I have written that highlight Hunter's story via
The Mighty website: https://themighty.com/topic/infantile-scoliosis/
Infantile Scoliosis Outreach Program website. )

Dirty Laundry

 There is a lot of monotony with motherhood, especially in certain ages and stages of life. Monotony fills the day, while the exciting and definitive moments stand out. Changing diapers, cooking meals, and doing laundry; these things seem never-ending, but tears, smiles, and laughter make memories.
  Last night, I was talking on the phone to my grandmother.  The kids started out in the room with me and then disappeared. The quiet should have clued me in that they were up to something, but I kept talking until I heard James' voice sternly, yet comically, telling the kids to "Get out of there!". I walked into the kitchen to find James helping both kids out of the rabbit hutch and all were laughing.

Dirty laundry is one of my least favorite chores. I don't mind the washing and drying, but I never can seem to get the laundry folded and put away. I used to make the excuse that we were just going to wear it again, so there wasn't a great need to put it all away. 

Piles of laundry frequently adorn our furniture and when I do manage to get it folded, the little people that live with me throw laundry parties and toss it into the air while playfully laughing with excitement. Most recently, I've been rationalizing that laundry will wait and the little moments to remember are fleeting.

 Laundry is a lot like life. There are some things that we let pile up, while other things find their way to the front of the line-up as they hold greater importance or pleasure. 

However, there are a few things we can learn from dirty laundry. 

Laundry is a constant; something that we know will always be waiting. Some of you may have things in your lives that you keep in the background until they are necessary-chores, people, etc.  However, many times I go through the day to day and don't concentrate on the need until the pile is staring me in the face. If I would address the laundry of life every day, then the pile would not seem as intimidating. Build relationships, take time to make someone a meal, and don't wait until that small pile becomes a daunting mountain to spend some quiet time reflecting on thankfulness and praying for needs.  

Secondly, life's laundry is a glass half empty/half full situation. We can look at the pile with fear or frustration, or we can look at the positives of the load. A dear friend and mentor told our small group that she prays for each member of her family as she folds and puts away that laundry. Monotonous turned purposeful!

  The last eight months, we've been on autopilot going through our day to day. Hayden is talking, walking, and sharing her totally fearless personality with the world. Hunter is holding steady and hopefully growing straight in his brace. He's a like a little engineer in training, as he watches and models his Daddy's every move and interest. They are both loving the water and we are enjoying family swim time in this June heat.
  June is Scoliosis Awareness Month. During this time, I like to think about our laundry pile of life and be thankful for the journey. Our days have been marked by routine, and while routine is wonderful, sometimes we forget to be grateful in the practice of life not just the highlight film.

Remember that while things seem monotonous, the time that you spend every day with those you love is deeply important. Everything doesn't have to be perfect all the time and laundry may pile up on occasion, or for some of us, on a more regular basis ;). Be purposeful, pray for those that dirtied those clothes and make time to dance in the sprinkler when you have a chance.

Super Hero Status

 Happy Fall Y'all!

   The weather is gorgeous, football season is in full gear, and pumpkin spice is calling the names of people everywhere. Some people long for the change of the seasons. In Texas, we obviously don't really have the opportunity to experience much seasonal change, since shorts can be worn well into November. Let's face it, when the temperature dips into the 70's, people start to break out boots and fall clothes just to embrace the idea of fall. That crisp air is a change that many long for after a hot Texas summer.
  However, change isn't always met with complete excitement.
Many of you may remember the show, "Friends". There is an episode where Monica Gellar and Chandler Bing are about to get married. Throughout their engagement, Monica is expecting Chandler to go all "Chandler" and panic. Chandler was actually completely happy and confident until he heard their new answering machine message, which emphatically asked callers to leave a message for, "The Bings"! The thought of their married name brought some immediate apprehension.

  Change can be a welcome transformation or a challenging adjustment. Many times, we find a norm that is comfortable and resist transition. We continually want to be in control of the situation. The truth is, life brings change and it's not the change that we should focus on, but how we choose adapt to that change.

 Hunter was fitted in his first TLSO brace this week. Essentially, a TLSO brace is a custom brace made specific to his body. It is used to hold his torso in place and prevent further regression. Prior to our appointment, we talked with Hunter about getting a brace and what it would look like. He seemed open to the idea, but the day came and he was very upset. The appointment was lengthy and he had to try on the brace multiple times in order to get the correct fit. By the last fitting of the day, he was kicking and screaming to get it off. The orthotist was very understanding, but Hunter had reached his limit.  Apparently, most children going from cast to brace, actually receive the brace the same day that their cast is removed. Obviously that would have been a lot easier.
Hunter's doctors didn't expect the amount of regression he experienced during the cast break he had in July, and therefore weren't expecting him to immediately need a brace.
Hunter will have to wear the brace 20 hrs. a day, which includes sleep. We were instructed to begin with one hour of bracing that night and add an additional hour every day until we reach that 20 hr. period. Right now, we are anticipating long-term bracing with potential casting again, until he will need surgery in his teens.
  Honestly, I was dreading putting Hunter back in the brace after the rough morning and a long, napless car ride home. We left the hospital and I began to question what I could do to make this an easier process for Hunter.  A good friend reminded me to make the experience fun and make him feel as though he's a super hero. I decided to sketch a picture of Hunter in his brace with Hayden by his side. When we got home, I held him in my lap and we looked at the sketch. We talked about his brace and I told him that it would help him to grow and become strong and mighty. He willingly put on the brace that first night and wore it without being upset. We're hoping the trend continues! We have offered him opportunities for distraction while bracing. I'm obviously not above bribery and at this point and will do whatever I can to help him adjust. :)

  Yesterday afternoon, during brace time, I sat on the floor and watched my son play with his new train set. The train is battery operated and creeks up a track suspended in the air only to spiral down through a cave onto the track below. The track is laid out and is constructed so the train can complete  the drop without any problems. Hunter kept watching the train climb to the top of the track's peak and then would hold the train to control the drop, rather than letting the train follow the prepared track. As I watched him, I thought about how often we try to control situations and their outcomes and how often we resist the plan that is set out for us. I didn't envision Hunter growing up with a cast/brace and battling this condition, just as you may not envision yourself experiencing job changes, disappointment, divorce, or the loss of a loved one. I love this quote from Karen Ehman's "Let.It.Go." study, as she says, "Learn to let God turn your predicament to purpose." 
  It is hard to watch children experience these battles, and as adults, we want to control the outcome. There is a purpose and plan already laid out for Hunter and all who experience challenges or suffering. Maybe one of those purposes is to teach us to let God take control.

  Hunterman is going to continue to grow strong and mighty, whether in cast or brace. We are going to try our best to find the purpose in his predicament and help him develop into the super hero that God intended him to be.

  
  I want to thank all of you who continue to keep Hunter and our family in your prayers. He has a wonderful cheering section and we are so blessed and honored to have people who genuinely care for him. A special thank you to my friends in my bible study group (MYC). These special ladies have brought care packages, given encouragement, shared ideas to make the transition easier, shared our hurts, and rejoiced in our triumphs.

Please continue to share Hunter's story so that we can help others who may be in a similar situation. Your continued prayers are much appreciated and we'll continue to keep all of you in our thoughts and prayers, as well. Blessings from Hunterman and the Ladybug!
Stay Tuned!

A Hero's Strength & Happy Birthday Hunterman!

    Superheroes are chosen for their strength and ability to fight for the greater good. There is always a villain that tries to creep in and put a wrinkle in the plan, but good always overcomes.

Our superhero has been without his cast for almost two months. He's been using his super powers to splash in the water and using his imagination to pretend he's on a pirate ship, singing, "Yo ho mateys away, there'll be treasure and adventure today..." While our superhero has been cheering and searching for adventure, his scoliosis villain has been scheming. Hunterman's curve translated from 18 degrees in his last cast to 36 degrees out of cast. Since his last x-ray in July, it has increased to 44 degrees. Our superhero is going to keep fighting and will be getting a new disguise at the end of September, as he will be adorning a brace specifically made and molded for his body.

 It's not the cape that makes the hero, but the strength and heart of the hero that defines him.

   Please continue to pray for our little superhero and share his story. We know that God has a plan for him and will give him strength to overcome.

 



Happy Birthday Hunterman!

  You are 3 years old today! We are so thankful that God chose us to be your parents. You are such a kind-hearted, affectionate, and outgoing little man.  Your laugh is contagious and your spirit is one to be reckoned with. I love that you have a love for music, singing along to your favorite tunes, making drums out of anything that makes noise, and dancing with a twinkle in your eyes. You are a daily reminder that we need to embrace life, don't take things too seriously, and enjoy every minute.
   You have your daddy's engineering mind and like to take things apart and see how things work. You can spot a train, bus, trash truck, tractor, and fire engine from a mile away. You are as stubborn as the day is long, but I know that your strong-willed character will, one day, make you a devoted leader.
   My prayer for you this day, is that you continue to face trials with strength, be loyal, love fiercely, and continue to dance like no one is watching. In the words of Sally Clarkson, "God has given you the capacity and ability to grow strong inside, to live courageously, to have great faith, and to become a person of considerable influence in your lifetime; God has made you with such wonderful potential."

We love you BIG and you are our favorite Hunterman! Happy 3rd Birthday!

Cast Free!

One week.
One week without the weight of a plaster cast after having spent 17 months carrying that burden.
One week without suspenders rubbing the back of his boyish neck.
One week without the feeling of his skin itching around his torso.
One week of bubble baths and splashing in the pool with his sister and cousins.
One week of "squishy" hugs and affection.
One week of being cast free!

Hunterman!

(Posing before cast removal with all of his previous casts except for the very first one.)

Handsome Hero!

X-Ray, Weight Check, and Sitting with sister after cast removal.

Relaxing pool side

  Our Hunterman went into cast as a sweet 17 month old baby, and one week ago, he emerged as a handsome little boy. After some persuasion and good old fashioned bribery, we were able to get him into the bath tub and the swimming pool. Now it's hard to tear him away. It did this mama's heart good to bathe both of her babies in the bath for the first time. It's the little things that make such a difference!
  Hunter is doing great. He was able to adapt fairly quickly after the cast removal. He falls occasionally, but his balance is improving every day. He LOVES the water and threw the worst temper tantrum I have ever seen when I pulled him out of the pool to take a nap. That's a story for another day.
  He is very affectionate and wants to hug and cuddle us numerous times a day. I think he really missed the feeling of physical touch. We're enjoying all of the sweet hugs we can get.
  We are scheduled to meet with the doctor at the end of August to determine a health plan. At this point, we aren't sure if that will entail continued freedom, bracing, or future surgery at some point down the road. Right now, we're just enjoying watching him adjust to freedom.

I love my little models. Blessed to have happy children to photograph!

Dear Blue Bell,

If you read my last post titled "Under Construction", you learned that Hunter has recently lost weight. We are trying to help him pack on the lbs. so that hopefully he can get the most improvement out of this last cast as possible. Lord knows I have more than enough to donate, but unfortunately it doesn't work that way. ;) 

  When a picky toddler finds something he likes, you stick with it. Blue Bell was his favorite treat and  nothing else quite compares. Praying for the day Blue Bell will restock the shelves, so Hunterman can have a full belly again! God bless Texas and Blue Bell!

Dear Blue Bell Family,

  Growing up Texan meant saying “No, Sir” and “Yes, ma’am”, having faith in God, being kind to your neighbor, giving a firm handshake, loving your family, and eating Blue Bell Homemade Vanilla on the back porch. It’s natural that we pass along these Southern institutions to our children, because of course, we are proud to be Texan, and that’s the way we should raise them.

  Our little man had his first taste of homemade vanilla heaven when he turned a year old and he has begged for it every day since then. Our son is almost three years old now and here’s his toddler speak about the Blue Bell he loves and misses:

“It’s baseball ice cream!”

“Yummy, yummy in the tummy!”

“It’s cold and sweet and tastes like a cupcake.”

“It’s Tasty Good!”

From the mouths of babes!

Blue Bell, we miss you so!    

~Hunter Sitton (2) and the Sitton Family

 (Our son has a condition called Progressive Infantile Scoliosis. He is undergoing treatment for his scoliosis called Mehta casting, which uses the child’s growth, paired with gentle growth guidance casting, to correct the severity of the curve. Weight gain and linear growth are essential for the treatment to be successful. Our little man has trouble gaining weight and Blue Bell was his favorite treat and some “Tasty Good” medicine”. Please hurry and bring back Blue Bell for our baby!)

Under Construction

  Under Construction...

 The gold and black mystery that lures inquisitive little boys everywhere. There is something about a hard hat and a digger that immediately peaks the curiosity of those mischievous little people who are always covered in dirt and are filled with infectious belly laughs.

The obsession seems to be innately wired into the interests of many little boys. 

(As a side note-I was looking for some descriptive words/phrases referring to little boys. I typed in "Little Boy" and the first thing that came up was that it was an actual code name for an atomic bomb. Boy moms, that pretty much sums it up! It's always easy to see where our little tasmanian devils have been. Ha!)

   I have been anxiously awaiting a time when I could chat with you all and tell you that our remodel is FINALLY finished. Unfortunately, the padlock is still on the door and we are desperately waiting for a few little things to be completed. Longest remodel ever!! James keeps referring to it as "The Money Pit" with Tom Hanks, because of its never-ending nature. 

  I had a conversation with a friend recently about our contractors, as I had recommended them to her back in March. I admittedly confessed that things have taken much, much longer than we could have ever anticipated, and while we are very happy with the overall results, we are just ready for them to be finished. 

  That conversation made me think about construction, the anticipation, the monotony, and the eventual finished product. Construction always seems to take longer than promised and inevitably hiccups come up along the way, but the finished product is what keeps construction bearable.

   June is scoliosis awareness month and the last few weeks have been a bittersweet time of reflection for me. I am determined to use Hunter's experience to teach others and have recently started a pursuit with two childhood friends who are forging a similar journey with their nuggets. 

  We are so blessed to have been able to find the appropriate treatment and a community of support for our Hunterman. He's been "under construction" of sorts for the last 16 months. We've had great progress and success, but we have also recently had some moments where we seem to be at a stand still. May was one of those months. Hunter has had two casts now with no improvement and seems to be stagnant at 18 degrees. The months that were marked by little to no progress, seem to be directly correlated with weight loss spurred by colds, allergies, and ear infections. My family and my sweet husband continually remind me how far he has come on his venture to grow straight, but as his momma, I keep looking at the next step and what that means. 

  His doctor has decided that since he has had little progress recently, that he wants to take him out of the cast.  This will allow Hunter to have some summertime water fun and will enable the progression of growth of his chest cavity. His cast off date is set for July 13th, which will be followed by an x-ray and the development of a health plan. We don't know if this is permanent or temporary, or whether he will need a brace or future surgeries at this point.  I am excitedly cautious...Excited for Hunter to be a kid splashing in the water, but cautious in hopes that he won't have regression. Hunter is only 2.5, but I feel like I can relate to the emotions of some of you who have college age kids as you excitedly await the unknown. When his cast comes off in July, he will have been in cast for 17 months. His first cast was ironically placed at 17 months old. He will have had half of his life out of cast and half of his life in cast at that point. 

2 Corinthians 4:7-9But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed. 

  Right now I am trying to daily remind myself of his infectious laugh and how much fun he will have splashing with his friends in the water. I am encouraged by 2 Corinthians 4:7-9. His spine is bent, not broken. The curve he sports, is a curve marked by character and strength. While he is still "under construction, I am excited to see the finished product and how God will use our little man in the lives of others.

Cousin Time! Boys will be boys.

Tupperware makes the best hats :)

Thanks for reading. Please continue to pray for our little man and share his story with others. Scoliosis awareness for littles is essential and sharing just may save another life and help another little spine to grow straight.

As always, God bless from our little part of the world to yours. Stay Tuned!