Zac has always been very thin, small for his age yet healthy overall. When Zac was 13 we found his chest was starting to turn inwards. We started seeing a noticeable concavity, pressing in deeply towards his heart and lungs. His spine also started developing a very severe S-curve. His pediatrician sent us to Children's Hospital to be genetically tested for something called Marfan's Syndrome, a genetic disorder that affects the connective tissue throughout the entire body, causing the tissue to stretch and fall apart. Thankfully, those tests concluded he has none of the genetic markers for Marfans, though he does still exhibit many of its symptoms which led to the preliminary diagnosis. His thinness, overly large heart, concave chest, and scoliosis.
The fantastic Doctors at Children's Hospital have been keeping an eye on Zac since last year, monitoring the progression of his spinal curvature & everything else. They initially tried bracing to prevent the progression of his scoliosis. Despite the braces, his curve continued to progress rapidly. In April of 2016 they decided a surgical correction of his Spine is needed to halt the scoliosis.
The first immediate step to fix Zac's problems is extensive Spinal Surgery. They plan to operate on every vertebrae in his spine, connecting and fusing all except those in his neck, and his pelvis. They will be removing bone from both sides of each vertebrae, inserting screws to hold long metal rods to straighten his near 60deg curve. They expect him to be 3-6" taller immediately after the surgery. (So I guess we will soon be buying him new pants ;p )
Potential major concerns for Zac's Spinal Surgery would be spinal cord damage, which is why we are grateful for God guiding the Doctor's hands during the lengthy operation. And also due to Zac's thinness, they are concerned about the metal stabilizing rods potentially protruding from his skin. They say they have had cases where it tears thru the skin in other children who are unaturally thin.
To address this, we had a Nutritionist exam him, including taking blood samples. The results are that he is absolutely perfectly healthy from a nutritional standpoint. He is just genetically really, really thin. So with the Surgery imminent, they prescribed an appetite enhancer and told him to eat as much fatty foods as possible before and after the surgery, in addition to his usual diet.
Not your usual advice from the Doctor, but it has a purpose. The plan here is to literally fatten him up as much as possible in a few short weeks. Zac has no noticeable fat layer on his body, every bit of padding we can put on him will help prevent problems from potential weight loss after the surgery, as well as helping to keep the rods from protruding as much as possible.
Don't worry health nuts, Zac usually chooses to eat a very lean diet, which contributes to his naturally genetic tendency towards a thin frame. These additional calories are just temporary to put on a little weight buffer. Trust me, he's already sick of milkshakes. I don't think we are helping him form any lifelong bad habits here.
After Zac eventually recovers from the first Spinal Fusion Surgery, they will begin monitoring the progression of the inward curvature of his chest. The concavity is severe, and could soon begin pressing on his heart and lungs. They hope that without the added stress of his scoliosis putting a literal twist on his skeletal structure, the deep chest concavity may halt its progression at some point and not present an imminent medical threat. Until that time, they are planning a second surgery to push his chest out away from his heart and lungs.
This Fund exists for the primary purpose of helping to offset some of the many Medical expenses related to Zac's ongoing Health Care. From the endless Copays, to the many X-Rays, MRI's, back braces, as well as all of the tests, bills and expenses from & related to the actual Surgeries. We pay almost $1000/mo for Family Care medical insurance. Despite this, we get a bill for every procedure done every time we take Zac to the Doctor. These bills are simply "things Insurance doesn't cover", or doesn't cover completely. A problem which is occuring more and more often lately. It all adds up, very quickly as we found out.
We were extremely hesitant to setup this Fund, simply because we have never asked for help from anyone before, why should we now? Even when things get tight, we have always been able to get by. Despite always feeling like we are living month to month. We are a family that prefers to help others, in word and deed. Teaching our children to live the same way. Well, now that our family actually needs help, accepting assistance is not something we do lightly, or easily. The truth is, Zac will get the medical care he needs regardless. The only issue is whether or not those bills get paid afterwards. At this point, just before his first Spinal Surgery, those bills are not getting paid. They are piling up faster than we can pay them, quickly turning into a mountain of medical debt.
That is why we are taking the suggestion of friends & family to setup this Fund. We would not have done so without the love and support of everyone continuing to suggest this. After the 10th person asked me why I hadn't setup a GoFundMe page, I knew it was time to swallow my pride and let people help if they wished to do so.
So Thank You! Thank you for your well wishes, your ongoing prayers for Zac's Health and recovery. Thank you for the many texts and phone conversations asking how Zac is doing, and for your many offers of assistance. We Love You All, and can not thank you enough for wanting to help us get through this. We will keep you posted over time as to how Zac is recovering from his Surgeries.
Post Spinal Surgery Update
These pictures show what was done to Zac, inside and out. If you have ever had any surgery yourself, you can imagine what this must feel like, in terms of recovery.
Every muscle, tendon and nerve that used to be in one place, is now in another position altogether. The top half of his spine was tilted, his shoulders were tilted, his neck was tilted. The curves in the lower half of his spine were bad enough, then once they got inside, they realized his lower spine was not just bent, but also twisted around. You can really see this by looking at the screws.
At the top, the screws are straight in. At the bottom, they are at an angle. No, the screws are not in wrong, or in sideways. This shows the remaining twist in his lower spine. I say remaining, because this is after they "untwisted" his spine as far as they could. Obviously it still has a significant twisted rotation to it.
Because his spine is now completely fused, from top to bottom, he is as tall now as he will ever be. They will watch to see how his bottom vertebrae works to line up to his pelvis over time. It was severely offset at a high angle. Now it sits more normally, almost flat to his pelvis.
*Zac's surgeon, while brilliant in the OR, was self-admitedly NOT proficient with their new computer system. The nurses openly joked with him about it. For some reason when he showed us the post surgical images, he could only find and pull up the very old films from January, so we didn't get to compare the most recent extreme changes from his growth this year to the post surgical films. But we can still see the difference, and more importantly, see how deeply the screws invade Zac's small thin frame. He is a very thin small boy, even at 14, and these steel screwes and rods invade very deeply into his body.
*Zac's spinal surgery scar
*Zac recovering at home in his nest of pillows. Edie, his sister Emma's cat, is very concerened about him. Edie sits by his side, and when Zac falls asleep, Edie climbs up and sniffs his face to make sure he's still OK. It's adorable.
About Ryan Zacariah Jones (Zac)
Zac is a very happy, life-loving kid with many interests. He is very smart, emotionally very stable, and takes everything as it comes, not letting things bother him at all. Once he knew he needed the surgeries, he accepted the facts and moved on with life. I have something to learn from him in this regard.
*Zac & Alyssa
Specifically, like almost everyone else in his immediate family, Zac enjoys reading and is quite happy to wander thru 2nd & Charles in search of his next big literary adventure. One of his other interests, also found in abundance at 2nd & Chas, is Legos. He enthusiastically enjoys building lego sets....though they are (supposedly) NOT to be played with after building. That's just not how it's done ;p No, once the building phase is completed, each set is on display in his Lego cabinet which takes up most of one wall in his room....as well as being found on many other surfaces in the house. They tend to travel.
*Book shopping with Bilbo Baggins
Along with books, Legos, video games, Comics, and all movies, cartoons & TV shows either Star Wars or Superhero related, Zac also truly loves spending time with his family, specifically his cousins & siblings. His family means more to Zac than anything else, and he has no greater pleasure than simply being around those he loves.
*Their Aunt Kay takes all the kids to the beach every year, every niece & nephew. No parents allowed. She's a brave soul. Or maybe just a little crazy. Could be either. Possibly both.
His cousing Hannah is his best friend, they love spending time together. There have been many Light Saber battles when they are around one another.
Zac has always looked up to his brother Austin, the original source of all comic-book related knowledge. At least until Zac memorized the voluminous tomes of the DC & Marvel Encyclopedias. No seriously, he did. Just ask him about someone you have never heard of, like the Scarlet Avenger.
He also loves animals of all shapes and sizes, including dogs, cats, cows and Beluga Whales. We lovingly refer to him as the Animal Whisperer, often joking that Zac could tame a mountain lion if he ever encountered one in the wilderness. Animals always love Zac and go to him first, acting upon first contact as though he is their best friend, which I suppose he is. He has yet to test this ability on Beluga Whales, though preliminary obvservation at the Atlanta Aquarium suggests they rub against the glass directly in front of him more often than for other kids ;p
He really does love him some Beluga Whales. And his sisters. His sisters, Alyssa & Emma Lauren, provide Zac with all of the aggravations a boy needs when growing up, without knowing he needed them. He loves both of his sisters and has a unique bond with each of them in equal yet distinct ways. They have both been incredible helpers to us during this Medical adventure. Keeping Zac's spirits lifted during every doctor visit & procedure and making him smile at the most unexpected times.
We love our wonderful family. Our children are very, very important to us, and we thank you for helping to take care of Zac by providing the vital Surgery and Medical Care needed to give him a chance at a long, healthy, joy filled life.
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