The Good News and the Bad News (That's not actually so bad)

Hey Everyone!

I wanted to give an update on Natalie so far this week and give a few specific areas where your thoughts and prayers can be focused.

So far Natalie has been doing an amazing job here at the Hospital. Her Doctors, Nurses, Specialists, and other kids on the floor are having a good time getting to know her. Her pain levels are low and she's feeling comfortable for the first time in years. We're very thankful for how her back in particular is feeling and how low of an impact the pins (screws) from the halo are having on her. She is up to 15 pounds of weight and will be at the full 20 pounds by Monday morning. We've joked this week about how well she is literally "hanging in there". She is eating like the mini-queen she is and being pampered with all kinds of treats. I think if it were up to Natalie she'd just move in permanently. Which brings us to the specific areas of concern. I'll start with the "Bad (but not so bad) News".

The Bad: So far, even though her back is feeling great the traction therapy has done very little actual correction to her spine. Her neck is very straight now, which is wonderful, but her spine is still very contorted. What this means is that Dr. Stone has already said that she will more than likely be in the halo on the longer end of the spectrum. He said yesterday that the 3 month period will realistically be where we'll be able to tell how much it's working. So she'll wear the halo, be in her wheelchair, and use her walker for a while longer while she is stretched out. So that is the not so good news. There is a small correction so far...but it very insignificant.

The Good News: Since Natalie is doing so well with her pain management and is adjusting so well with her equipment then Dr. Stone is going to try to send her home as soon as is reasonably possible. He's even shooting for sometime next week! Rather than have her wait for the traction to work he has asked us if we'd be willing to take her home and see how she responds over the next several weeks and months. He'd have us come back every Friday for x-rays and other testing but other than that we'd be home in Elkin where we all ultimately want to be. Dr. Stone has never sent a Halo traction patient home before but since Joanna and I are the first ones at Chapel Hill to learn the system then he thinks we'll be able to take care of her at home just as well as she would be cared for in the hospital. So we'd once again be the guinea pigs (which we are used to). So be on the look out for coming home updates. I'll send word as soon as she's been sprung!

So that's the news, good and bad. With this comes a great deal of uncertainty and a significant amount of logistical maneuvering. Here are the areas that you can pray for in the upcoming days:

1. That Natalie will remain feeling great and will continue her therapy so Dr. Stone will remain confident that she is fit to come home.

2. That all of her pulmonary markers will be consistent with her progress so far. By that I mean that she is actually feeling and breathing as well as she seems from an objective standpoint. She'll have labs drawn to study oxygenation, etc. Pray that she hits her goals there.

3. That all of her equipment will be cleared to come home. Her walker and her wheelchair have already been assigned to come with us upon checkout but her bed has yet to be approved. The docs are fighting with the admin team on this one. I'm sure a resolution will be met but it will significantly effect our time-frame if her bed is not approved.

4. That we'll figure out how to transport all of her equipment. We have a plan to get everything home and set up BUT we never thought about what it looks like to actual take her places. Her chair and walker have a large crane-like system attached and it will be challenging to figure out how to get her to school, church, shopping etc. I'm certain we can figure it out but it may take a few of us "redneck engineers" to set up a system haha.

5. That once home, she'll be able to maintain her physical therapy regimen. It's easy at the hospital to go for long walks but it will be another story once we're home. So pray that we'll be able to figure out how all the pieces will fit together.

6. That Joanna and I will find peace about bringing her home. On one hand we really want to be home as a complete family. On the other hand there is quite a peace about being in the hospital and having someone watch over her with us. We think it's the best to bring her home but we would love to feel better about it. Consistently being the guinea pig sometimes takes a toll.

So that's all for now! Thank you once again for your love and care for Natalie and for us. We can't wait to see how well she does over the next few weeks and can't wait to see everyone in Elkin ASAP!

We love you all.

P.S. I put one of her old x-rays before the rod was taken out and one of after. You can start to see a difference if you squirt real hard :-)

Thursday 8/29 Natalie Update

Hey Folks,

Just wanted to give a update on Natalie! She has been a super busy little gal so far this week. She came through surgery like a champ and has hit the ground running. Dr. Stone did an amazing job with her procedure. He and his team were able to get it all done in 3 and a half hours versus the 6 hours that was anticipated. He got the growth rod and all of the hardware out safely and without a hitch. He was also able to place her halo securely. As expected, Natalie woke up angry but she was able to calm down when Joanna and I were allowed to go back to post-op. As soon as her procedure was done the doctors hooked her up to 5 lb. weights and gravity started to do it's job. Once we got up to the room the anesthesia started to wear off and she slept comfortably in her bed.

Tuesday morning she woke up and got to work. Her team came by one by one and started setting goals. She has an Ortho Team, a Physical Therapist, an Occupational Therapist, A Hospital School Teacher, 2 nurses per shift, and many other great folks and departments that check in on her throughout the day. Since she is the first kid at UNC to have this procedure Joanna and I are the "guinea pig parents". We get to teach the nursing staff how all of her equipment practically operates and we also get the opportunity to give input on how we can all make the process and equipment better for the next round of kids. The nursing staff and doctors have been given instructions on the concept of everything but none of them had ever seen the equipment or know how it works in person. It's kind of fun telling doctors and nurses how to do things haha. It's also a lot to take in and we are learning new things every day.

As far as Natalie goes, she is up and moving around all day every day. Her first day out of bed she stayed in her wheelchair (which his it's own weight system attached) for 5 hours. She also walked the short end of the hallway and back. The second day she walked around the entire floor several times with little to no hesitation and she stayed in her chair for several hours. Dr. Stone even came by her room and told her that she is able to go anywhere on the hospital campus while she is staying here whenever she wants to in 1 hour increments. She can go outside, we can wheel her around the hospital or she can walk as much as she is able. This is a huge deal for her because it helps give her a sense of normalcy and will allow her to not get in the "hospital funk" as quickly. Today she even went to a science class with a few of the other kids where she made a jellyfish puppet and got to learn to identify a lot of sea animals. Our biggest problem now is getting her to slow down and take breaks. She's a fireball of a patient. She has no quit and we love that about her.

From here on out, every other day Dr. Stone will be adding 2 pounds of weight to her halo system until they reach 20 pounds. Then they'll stop at 20 and let the weights start stretching her back out. As you can imagine adding 20 pounds to a girl that is only 33 pounds will be pretty extreme. Her bed, her wheelchair, and her walker have a weight system that essentially pulls her head upward whenever she is attached (which is all the time). We've entered the phase where Natalie will become frustrated. As the weights get heavier it will be harder for her to maneuver freely and the more constricted she'll become. So pray that she'll have the patience and stamina to stay positive and to fully understand that she has to keep these weights on indefinitely.

So that's been our week so far. We'll be here chasing Natalie around the hospital until the next step begins. We still don't know how long the process will take but at least it has started. We're so thankful for everyone here at the hospital and for everyone back in Elkin, Raleigh, Wilmington, Florida, and all over the country and world. Your thoughts and your prayers have truly been felt. All I can continually say is that your love for her has been overwhelming in the best sort of way. I'll send out plenty of pictures and updates as they come via Facebook and i'll update the blog too.

For those that have asked, Our Address here is:

101 Manning Drive
Room 7CH04
Chapel Hill, NC 27514

Big Day for Natalie 8/26/19

Photo by our dear friend Amaris (Amarisphoto.com)

Tomorrow is the “big day” for Natalie. I’ll be posting updates as she hits specific milestones or has clear needs coming up in recovery. This way everyone can know precisely what is going on and will know how to focus prayer, thoughts, and encouragement. So I’ll start tonight with a lengthier post about what she has coming up tomorrow and we’ll go from there!

Her procedure is scheduled for 2:00PM. We’ll arrive at UNC around 12:30 and wait as her operating team preps for all of the intricacies of the surgery. There is a chance they’ll move the time but we’ll update if needed. The procedure will happen in 3 stages. The stages are:

1) Removing the existing mobile part of the growth rod- This is the biggest part of the rod that runs the length of her back. It’s the part on her back that most people notice protruding from the top. That large “hump” at the top is actually a metal rod and not her back at all. There will be an entry point at the top of her back for its removal.

Pray that Dr. Stone and his team will work swiftly but precisely to get all of this hardware out without introducing any bacteria, virus, etc. This area in the past has been prone to infection because of the positioning of the incisions. Pray that infections, etc. can be avoided.

2) Removing the stationary hardware- This is the tricky part. The stationary hardware is what is actually connected to her spine and surrounding areas. As you can imagine there are plenty of areas in which the surgeon will need to have unimaginable steadiness to make sure he doesn’t damage anything while removing these parts.

Pray that the team can remove all of the hardware (screws, wire, etc.) safely without damaging any nerves or discs or bones. There will be an access point at the top and bottom of her back to remove these components.

3) Positioning and connecting her Halo- While still under the general anesthesia the team will affix 8 screws around her head into her skull. They are tight and will obviously be quite an adjustment for Natalie. She knows that it is screwed in but does not fully know what all this entails.

Pray that Natalie will understand that the pain associated with the halo will subside as she recovers and pray that she will understand and accept that she has to wear this device for the duration of her time at the hospital and potentially after she is released.

Natalie is a funny but ornery patient. During Pre-Op she is given a medication that makes her very “happy”. Typically she spends this time laughing at us, pointing at things that aren’t actually there, and talking to anyone that happens to walk by her room. She becomes “Social Natalie” and has a great time. However, in Post-Op, she ALWAYS wakes up angry and tries to get out of bed. Every. Single. Time. Although it’s pretty comical to see her get riled up it’s very important that she stays as calm as possible after the surgery. So if you will, please pray that her stubbornness will hold off until she at least gets to her room. Her strong will serves her well most of the time but tomorrow she’ll need to remain peaceful and still.

I think that about sums up tomorrow’s activities. It will take anywhere from 6 to 8 hours to get everything done in surgery but we will give an update as soon as possible after she wakes up. So be on the lookout! 

We've gone through surgeries with Natalie but nothing of this magnitude. This is new for us so we appreciate you all coming along with us. We are so thankful for everyone on this journey. Joanna and I truly can’t articulate how much it means. We love you all.  

Natalie's Update

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

6 months and counting

We finally have an update.

Natalie had her CT scan done today. As a reminder a few of Natalie's doctors were concerned that the front of her scull was closing faster than the back.  This would result in multiple surgeries.  Her doctor read the results and said that her scull and brain were growing normally and there was no need to look any further into surgery.  That alone was a great relief.  I'm thankful to say Lyle was able to take off of work and be there to celebrate with Natalie and me.

Secondly, we have made it 3 months without using Natalie's g-tube!  We met with a pediatric surgery nurse today to discuss having it taken out.  We came so close to having it taken out today but were not able to convince the nurse completely.  However, we have agreed to wait a few more weeks to prove Natalie truly does not need the tube any more.  Hopefully, come January 12th, 4 weeks from today, we will see her g-tube removed.  It was a great blessing having Lyle there for the conversation with the nurse today. We were able to tag team and really bring to light what life at home for Natalie looks like.

This coming Monday we have an appointment with Natalie's neurologist.  We will be getting results back from her last lab.  If it comes back positive there is a strong possibility that Natalie could take a medication that would allow her to catch up with her piers within 2 years.Assuming that comes back negative, we will work on a plan of where to go next.  Do we give up?  Do we take a brake from testing? Are there any new tests?  Do we start over? etc...

Thank you again for all of your prayers!

The results are in...

...and they're negative.  

Seven months ago I wrote a blog saying Natalie's results from the next generation DNA study should be coming in, within the next few weeks.  Five months later we did finally get her results.  This type of test covers what is referred to as mapping the human genome.  It covers approximately 80% of the genes that make up our bodies.  It helps explain why we think and move the specific ways we do as well as determines possible flaws in our DNA.  Our hope was to get a little closer to knowing what's wrong with Natalie and how we may help her as well has future babies in her position.  We went for a formal meeting where they told us that all of Natalie's results came back normal or in the medical terms, negative.  In fact the one test she had that came back with positive results when she was still in the NICU was redone and came back negative this time.  We find ourselves in the same position as always of just not knowing.  The doctor told us that they would not give up on looking for what is wrong with Natalie but they are lost as to where to go next.  He said that most likely anymore testing done will be the results from some different research project he finds and enters Natalie.

With all of that said, I want everyone to know that Natalie is doing great!  She is learning to walk.  The 2 curves in her back have stopped progressing which means her back brace is working.  She recently had surgery to correct her clubbed feet which has done a phenomenal job.  She's starting to get a little daring and letting go to try to stand on her own.  Her voice is getting louder and her vocabulary is growing.  

She still presents us with some challenges such as loosing her energy quicker than an average 23 month old.  She still cannot move any facial muscles above her bottom lip therefore she can't make sounds such as the m, p, and b sounds, smile, or blow.  She's still using a bottle 50% of the time.  She tires using a sippy cup and cannot close her mouth around a straw.  She understands that she is older and we can tell she's starting to get irritated that she can't do more.  She wants to get down and crawl next to Isaiah when we're playing outside or walking through a store.  She wants to eat everything that we eat but she doesn't have the stamina to eat tougher meats like beef.  

At the same time Natalie continues to astonish us with how she does things differently.  The average child when they start talking say only the beginning of words.  For instance, baby would be "bay" or Isaiah would be "Isay."  However, Natalie does it the other way.  Baby, is "aby" and Isaiah is "Saiah."  She also gets very vocal at the doctor's office.  The last time she was casted she told the doctor, "Go, Go, Go!" while pointing to the door.  The last time at the dentist she pulled her head away and said, "ALL DONE!"  Isaiah just told us the other night after taking a bath with her, "Momma, Did you know that Natalie can talk!"  She also is starting to mimic the tone in people's voices buy using inflections in her speech.  

We have a lot of fun with our family and are so thankful that we all have each other and all of you out there.  Thank you for loving my family and please never forget that we love you too!

My Baby's Growing Up

Here we are at the brink of Fall with a 15 month old.  Lyle and I have heard the oh so familiar phrase, "Can you believe it's been a year?"  We shake our heads and smile, but then we laugh with each other when they walk off.  Instead of the normal response parents should be giving Lyle and I just want to take a deep breath and say, "YES, we can believe it.  It's been the longest year of our life!"  haha  It's with great pleasure to be able to laugh and joke about where we've been, where we are, and where we're headed with our sweet Natalie.  We're full of relief, exhaustion, excitement, joy, and encouragement to be celebrating a year of Natalie's life.  A year and half a go Dr. Goodnight told us our little baby girl had a 50/50 chance of survival after birth.  Isn't truly wonderful to be celebrating on the 50% chance side of life!?!
With all of that said here's where we are as a family with Natalie's diagnosis and development so far.

Diagnosis - NONE
However, Natalie's neurologists entered her into a medical trial that is referred to as, Next Generation DNA testing.  It allows a lab to test 20x the amount of DNA than what's been done before.  This a 5 year long trial so Natalie's results will be reviewed for the next 5 years as the medical field changes and becomes more knowledgeable.  The only conclusion that has been made about Natalie is that wherever her genetic informality is a normal lab does not have the resources to find it.  We're hopeful to see some results in this medical trial.  Natalie's doctor called and said we should be receiving the results in the next few weeks.

• Back
• Natalie is now wearing a back brace.  Because her core has taken so long to strengthen she has developed scoliosis, an S curve in the spine, and kyphosis, a hunched back.  

• Feet
• Still in the process of correcting her clubbed fee.  We are casting, taping, and wearing special shoes depending on the week.

Development - A lot (currently 15 months old)

Natalie is continuing to develop and surprise her therapists on a monthly basis.  No one really knows what to expect because she continues to build her strength in the opposite direction of a normal child.  :)  What is expected during the infant - toddler development is for the child to first strengthen their core and work they're way out to their limbs and eventually fingers for the fine motor skills.  Natalie does the opposite.  She gained her strength starting with fine motor skills and is gradually working her way to her core.  Although she may not be able to walk she can spot and pick a cat's hair out of the carpet even if you did just vacuum twice.  lol  The problem this presents is that a baby's core strength is what signals the body to start maturing.  As you are probably familiar with babies are very flexible creatures.  As their core strengthens it sends out signals.  It tells the muscles and bones where to settle and stop being so flexible.  It tells their insides when to mature, whether the stomach can handle table foods or cows milk versus mom's milk or even whether swallowing something lumpy is ok.  With all of that said here's where Natalie is today...

• Eating her first table foods
• She has fallen a little behind on her feeding abilities but her feeding therapist says it's the lack of her core strength.  As her core strengthens her digestive track matures and her appetite will increase.  We would say she's right around a 12 month's old abilities in eating.
• Starting to put weight on her legs when you hold her in a standing position.
• Leg strength and lower abdomen are around 6 month's old
• Has full head control
• She was able to move to  forward facing car seat this past week.  She's on target with the exception of lifting her head more consistently while in a crawling position.  This has more to do with her back muscle versus her neck.
• Is starting to crawl!
• 8 months old
• Is a ahead in her cognitive
• She has more words in her vocabulary than normal.  She notices and reacts to people's mood changes.  16-17 months old

I'll have to say it's quite entertaining to have a baby that does so little but understands so much.  What perhaps makes us laugh the most about Natalie is the fact that she laughs the hardest when someone gets hurt.  If your remember the youtube video, "Ouch, Charlie that hurts,"  then you've seen a glance into Natalie's mind.  She laughs when you fall, if you cry, if you scream, or when her brother, Isaiah, is in trouble.  What catches people of guard is Natalie still can't make facial expressions.  When you hear a belly laugh coming from a straight faced baby it's a little confusing, but hilarious.  It goes perfect with the fact that she's typically laughing at someone getting hurt.

Isaiah is thrilled to have a mobile sister.  He told me just this past week that Natalie is older now so we need a another baby.  I knew it wasn't just me that finally feels like my baby is growing up.