It's been several years since this blog has been updated. I'm not sure why we ever slowed down with updates but I suppose it's like most everything else, life gets busy. We've mainly given "Natalie updates" via Facebook over the past few years but I feel that what she is facing in this next season of her life requires a more detailed post.
If you're familiar with this blog then you'll already be fairly acclimated with Natalie. Since before birth Natalie has kept us on our toes and she isn't slowing down now. If you're not familiar with this blog then I encourage you to read some of the earlier posts. The first couple posts will be most helpful to understand Natalie as we know her. It's wild how her early diagnoses or lack there of are still the same 8 years later. Her abilities and disabilities have mostly remained the same while others have gotten worse over time. This post will deal mostly with a few of her issues that have gotten worse and ways that we (and her medical team) are hoping to relieve the symptoms of her "conditions".
Basic overview of Natalie up to this point:
Natalie is disabled. I realize the word disabled is loaded and may not be the correct way of speaking in some situations and applications. However, Natalie in my opinion, is the physical embodiment of the word. Being disabled does not mean that a person cannot do something but rather it means that a person with a disability goes about their day doing things differently. Natalie was born with very low muscle tone all over and inside her body. What this basically means is that ALL of her muscles are much weaker than an average person. Her leg muscles, her arm muscles, her feet, her hands, her tongue, her eyelids...everything is weak. It's amazing she can eat or talk or walk or function semi-normally in general. But she does. Even though she is keenly aware that she has these disabilities it's almost like she doesn't even acknowledge them. She has developed completely different ways of doing everything. For example, when she realized her lips were unable to move taking away her ability to make labial sounds (d, b, etc.) she developed a way to maneuver her tongue and use it as a type of pseudo-lip instead. Or when she realized she couldn't use her lips to give kisses she somehow came up with a way to make a kiss sound and gives kisses the way any other little girl gives her Daddy and family kisses. When Natalie kisses your cheek, it's special. The best way to understand how Natalie's mouth works is to buy the game "Watch Ya Mouth" https://www.target.com/p/watch-ya-mouth-game/-/A-51812560. It's a mouthpiece game that makes it impossible for a person to close their mouth or lips. That's how Natalie is 24/7 but she finds a way to do normal tasks.
Another way that her low tone disability affects her is in the most obvious of ways. Because her muscles are weak it's hard for her to remain upright. Because of this she has developed scoliosis (major curvature of the low and mid spine) and Kyphosis (major curvature of the upper spine and neck, or a "hunch back"). So her body is practically collapsing on itself. The spine curves are bad but are mostly cosmetic however, because of the severity of the curve it causes her weight to compress her lungs and heart. Without correction, to put it bluntly, she would stop breathing and her heart would stop. That's why we decided, with the direction of her medical team, to put in an experimental magnetic growth rod in hopes of slowing this progression of scoliosis and kyphosis. Over the years we now know that the growth rod placed in her back is not working. Her curvature (especially in the upper back and neck) is becoming worse and is so severe that it's almost pointing downward instead of up like it's supposed to. The rod is now pushing it down instead of correcting it.
Since the rod is no longer working and has been failing over the last few years we are now able/forced to try something new. Her former Orthopaedic Surgeon retired this year and he never quite had a solution. He was fantastic to her and cared for her well but just didn't have the resources at UNC to figure out a comprehensive plan to fix her back and neck. After his retirement he was replaced with a relatively young Ortho specialist named Dr. Stone. Dr. Stone came in "guns blazin'" with a plan and a technique that he routinely performed at his former hospital in Atlanta and that is used by several hospitals across the US. The first time he met her he said, "We have to do something about this" and that something is what we're gonna do. On August 26th Natalie at the University of Chapel Hill will have surgery to remove her old growth rod and will begin a new process with a whole new method and technology in hopes of keeping her healthy. The hope is to also correct the scoliosis and kyphosis. The new technology and method is called "Halo Traction Therapy". It's an epic procedure but it's a fairly simple process to understand. She will be the first patient at UNC to have the procedure.
Here's how it works:
- While under anesthesia, the old magnetic rod will be removed and her team will place 8 screws into her skull starting above her eye brows and around her entire head. Then a metal "halo" will be attached to the screws.
- Once out of surgery, slowly over weeks, weights of up to 1/3 her body weight will be added/attached to the halo contraption above her and behind her. She'll wear the halo and weights 24 hours a day. When she's walking, when she's sitting, and when she's sleeping. It does not come off until the end. Over time, with the help of the halo, weights, and gravity it will hypothetically lift and straighten her spine. As mentioned above, this will take the weight off of her heart and lungs allowing her to continue breathing.
- While the pressure is off of her lungs, heart, and spine the docs will take the time to try to fatten her up as much as possible to give her the energy to heal and to grow in ways that she needs to. She'll more than likely be given some form of feeding tube to supplement her usual eating. We don't know if will be a mic-key button or the usual "through the nose" type tube yet.
- Once she is stretched and fattened, the medical team (ortho, cardio, pulmonary, etc.) will decide the next steps. Everything after the surgery is unknown. No one knows how her body will react to the halo or how the docs will proceed from there. There could be a new plan for rods, or a new plan of bracing, or fusing, or any other thing that's out there to fix backs. But, we don't know what strategy yet.
- She'll be at UNC for a minimum of 6 weeks. There is no speculation as to how long after the 6 weeks she'll be there. The docs have told us to plan for "months" of stay.
With this in mind, Joanna and I felt that we should let those who are interested know what we'll be up to over the next few weeks and months. Like everything with Natalie we'll be playing it by ear. We've begun to schedule out staying with Natalie and staying with Isaiah and traveling back and forth from home to the hospital. Between the hospital, school, working, and all that fun stuff it'll be a big adjustment for all of us and a logistical challenge but we're working it out. Our hope is to make both Natalie and Isaiah's lives as normal as possible during this process. Isaiah starts 4th grade on the 7th and Natalie will start 2nd grade then as well. They are going to be in the public school here in Elkin and Natalie's assignments will be done at the hospital.
We're both nervous and excited to be taking another step with Natalie. We always want what's best for her and we know that this surgery is necessary for her livelihood. The straightening success rate for most kids that have this procedure done is overall very positive but since Natalie is the only person of her kind (as her doctors refer to her) we are hoping for the best. We know that it won't completely straighten her out but we're hoping for enough correction that her lungs and heart are no longer in danger. She is aware of the surgery and is looking forward to something being done. She's been in a lot of pain and is excited to have the rod removed.
Once we get settled into a room i'll let everyone know what room we're in and all those details. Visitors, and letters or cards, or any support for her will make Natalie's days in the hospital a bit easier. So feel free to stop by. You don't even need to call in advance...just come on up. She also LOVES looking at facebook and would love to read comments of encouragement. Feel free to share her story and this blog with anyone that may be interested. The more people that are praying, thinking, or overall sending good vibes the better. We'll be posting blog updates while we're in hospital so please bookmark this blog if interested and stay up to date with our Natalie :-).
Thanks for your support!
Lyle, Joanna, Isaiah, and Natalie Sacco
