Our little Levi’s next surgery is officially on the calendar for August 28th. We will be making the trip back to Cincinnati for several pre-op specialist appointments followed by surgery that Friday.

This is surgery number 26 for Levi and will go very much like the previous ones. When we sign waivers in the pre-op room we check all the boxes for possible interventions. There are actually two parts to each surgery- a microlaryngoscopy and a bronchoscopy. During the microlaryngoscopy portion sometimes they need to trim his epiglottis, sometimes they do a balloon dilation in his airway to break up scar tissue, sometimes they do nothing but look and evaluate. But in addition to those interventions a pulmonologist cleans Levi’s lungs during the bronchoscopy and sends the fluid from them off to see if there are food or drink particles making their way into his lungs.

We don’t expect to be admitted overnight and will likely try to make the drive straight home from the hospital that day if he is stable and doing well. Sometimes I have to run him on oxygen for a few hours so I keep him hooked to a hospital grade pulse ox for the 6 hour drive home to Tennessee. He typically runs a fever for a day or so after, which is an expected result of the bronchoscopy portion of the surgery. When we spoke with the surgeons last year the next expected major step for enlarging his airway would be removing the tonsils and adenoids but that wouldn’t happen this go around and would be scheduled for a later date if they decide it is truly needed.

Obviously the BEST news we could receive is that his vocal cords are no longer paralyzed and that God has healed him! Unfortunately all of the clinical signs point to that not being the case and we fully expect them to say that things are the same as the last surgery. As long as we continue to avoid the trach route we are happy!

In order to find out if the cords are still paralyzed they have to send a camera down his nose when he is fully awake, which is a traumatic experience for both of us as I have to do the bear hug to keep him still.

Because of COVID precautions Malachi will not be permitted in the hospital, and truthfully we wouldn’t want him in there anyway! It looks like Levi and I will be making the trip solo and Malachi and Jake will stay in Tennessee. Levi will also be given a COVID test pre-op.

And things could likely change between now and then based on the spikes happening all over the country! But for now this is the plan we are going with. It will require Jake taking a few days off of work to sit home with Malachi since we aren’t sending him to school this year.

Speaking of the pandemic…

Our area is starting to get a little more saturated with cases. Many of the stores we used to frequent are now requiring masks nationwide and we are thrilled! I was able to run into one this week for a few minutes to pick out some fresh produce; we have been doing grocery pick up but there is something about inspecting and picking out your own produce. I was able able to snag some fresh salmon from the seafood counter which was a real treat. And side note- still no bears this week! When we cook salmon we typically get a bear visit but not this week and we are loving it.

Malachi has been doing SO GREAT this week! His seizures have calmed down tremendously from last week and he even slept for 7 whole hours straight one night. What a blessing!

 

All three of the Carroll boys got haircuts this week and now looking sharp! We have a friend that comes out to the house to cut hair for us.

 

We took a few weeks off from horseback therapy and Levi hasn’t adjusted too well to going back to the barn each week. For the last two weeks we have dealt with a lot of tears, but hopefully with the routine back in place he will be able to adjust back to his normal, happy self. I was able to snap some cute pictures once we got him calmed down. We think the therapists masked face had something the do with the meltdown so we gave her permission to remove it for his session.

Malachi is a rockstar cowboy each week. His favorite part is trotting on his horse, Farley. He has to sign to the horse when he wants him to go by tapping the horse gently on the neck.

It wouldn’t be a Carroll week without a goofy story. You likely don’t know this about me, but I am not a fan of squirrels. When I was in 8th grade I went to Washington DC with a friend and we had heard that the squirrels were so used to people they would eat out of your hand. Of course, we decided we needed to experience this phenomenon and spotted a squirrel to approach. We squatted down and called it over with a handful of chips and when it turned to walk towards us there was clearly something wrong with it. As it ran towards us it couldn’t support the weight of his own head so it flopped to the side, banging on the ground as it ran frantically at us. His eyes were dilated and he was foaming at the mouth. It was the stuff nightmares were made of!!

We got up and sprinted away from the freaky beast and since then I haven’t trusted squirrels. I see them all as tree rats, one step away from the foaming mouth.

This week I was home with the kids and looked outside at the treehouse and spotted a squirrel. The deck part is 12 feet off the ground and we have never had a furry friend make it up there before. But here he was, perched by the window eyeing our bird feeder. Since Jake was gone I decided to sneak over and take a picture of it to show him later. As I crept over he disappeared out of sight, and when I approached the window he lunged and flew across the window…I have no idea what he is thinking because at that point it was at least a 14 foot drop to the ground and there is no window ledge.

Somehow he used his freaky fingers to cling to the ledge of the siding and got himself back over to the deck. But as you can imagine I wasn’t expecting him to fly by my face. Oddly enough I caught in on video, but I am too embarrassed by my horror scream to show it to you haha. Instead I will share a still shot from the video and you can use your imagination on the rest.

Levi witnessed his mother’s craziness and now loves to re-enact the whole scene. He has also been re-enacting mom sneaking out and looking for the bears from the treehouse. He claims to see several and when I ask him what the bears are doing he says “not much”. Goofball.

Oh and two words to sum up the bit of chaos we have had this week: potty training. Game on.

This coming week is our final week with Jake home all day. I am selfishly mourning the loss of extra hands throughout the day. It has been such a big blessing for our family to have him home for the last four months. We could really use your prayers for health as he plunges back into a germy environment.

As I reflect back on these weeks at home as a family I can’t help but think of the beginning verses in Psalm 23:

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name’s sake.

Over the last four months God has used a pandemic to give our family a much needed break…one I don’t think even we recognized we needed. Initially we feared the impact that stopping therapies would have on our boys, but being able to swim in the therapy pool, play as a family, and spend our time at the house has turned out to be better than any therapy we could chase for the boys. They have both made significant gains and we have connected as a family.

I love the wording of the verses above. That second line: “He makes me lie down in green pastures…” that one makes me laugh a bit. Sometimes we get so sucked up in the busyness of the world that we don’t even recognize the green pastures surrounding us. And like a shepherd makes his sheep lay down and rest, the Lord does the very same thing for us! Just like little Levi needs his quiet time each afternoon so he can rest, God too recognizes when that rest is needed in our lives.

This week I am thankful for the Shepherd. I am thankful that He knows the route to all the green pastures, still waters, and right paths. And I am thankful that He knows me well enough to see when I am weary and gives me the opportunity to lie in those pastures. I am thankful for a God that knows me better than I know myself.

Please start joining us in prayer for Levi’s upcoming surgery. It is not a risky one in of itself but the idea of him traveling and entering the hospital for any length of time during this pandemic is not ideal. Pray protection over Jake as schools are about to open in our town. Pray for wisdom for me to process how to handle the transition back to being a solo stay at home mom.

May you allow the Shepherd to lead you this week.

Leah

 

We are continuing to prep our lives for Jake returning back to work. We have rearranged one of the spare bedrooms for Malachi, Levi, and I to sleep in which will give Jake full access to the master bathroom and closet in the mornings to get ready for work. He has just two weeks left of summer!

We set up a new big boy bed for Levi with the hopes that we can successfully carry him over to it each evening. Bedtime is a little wonky for our family, which is okay with two parents helping but very difficult for just one of us to accomplish.

Levi falls asleep around 11 each night and by 11:30 we hook him up to his nighttime g-tube feeds. The pump runs from 11:30p-7a but the biggest issue is that he moves SO MUCH while he sleeps. You have to constantly wake up and check the tubing, making sure it hasn’t accidentally gotten tangled on blankets. The crib was working well but now transferring him in and out of it has become too much of a challenge. The other big issue is that he regularly rolls or sleepwalks off the bed at night, and the pump bag stays on the bed, leaving very little tube length before ripping his g-tube out of his tummy. You have to have eyes and hands near him the entire time he is asleep.

But our sweet Malachi doesn’t go to bed until around 1am. And getting him to bed is a challenge, as that is one of the most seizure friendly times of day for him. So Levi will be unsupervised for a bit after he is hooked up and I am still in the living room getting Malachi calm enough to sleep. We were able to get a bed for him that has very high sides, which we are hoping will prevent him from rolling out and dislodging the tube. I also have a baby monitor we will keep on him at all times.

Right now both of the boys sleep in separate rooms, each with an adult. At one point several years ago Malachi was sleeping in his own bedroom, but with his positional struggles and nighttime seizures I just feel more comfortable having him close to me. I am constantly waking up and moving his position to make him more comfortable when he starts to stir. I think about being stuck in the same position all night and how uncomfortable that must be for him, and I do my best to switch him up as much as possible.

My fear in putting them in the same room is that one will keep/wake the other up and my very limited sleep will become even more limited. But I am sure we can figure out something that will eventually work. Hopefully haha.

We are trying hard to not think about the potential germs Jake will be bringing in each day and are continuing to focus on faith over fear. Without Jake teaching we wouldn’t have the insurance that the boys both rely on. And obviously the loss of income isn’t manageable for our family, so we just have to continue praying and believing that God will protect our family.

Malachi is losing all of his baby looks at turning into a big seven year old! He is cutting some big molars and we suspect his front teeth will be coming in soon. He only has one real baby tooth, the rest are all capped, so getting new teeth is a pretty big deal. His seizures have amped up a bit, and we are assuming pain from the new teeth has something to do with it.

We had some wonderful friends from church offer to sit with the boys this week, and Jake and I got the chance to go out on a date! Aside from last week’s outing, we haven’t been in a real restaurant since March and we still don’t feel comfortable being inside public places right now. We found a restaurant with a large patio area and snagged a table in the corner away from everyone else. The waitress stayed masked and we felt safe with the setup.

Whenever we get to leave the house without the boys it just feels so unnatural. Even the movement of getting out of the car and walking directly into a place without a 5 minute unloading process is a real treat. And eating a meal without toddler demands and seizures is refreshing.

After dinner we drove over to our alma mater and walked around the campus. We reminisced as we passed each of the buildings, remembering friends, professors, and silly stories. Jake and I both worked on campus during our four years there and know the place inside and out! I was responsible for paying for my years at school and consistently worked 40 hours each week in several different roles…the computer department, campus safety dispatch, a special needs program at a local church. Between Jake and I we have enough stories to last a lifetime at that place! Here is a photo from the college days.

We went into the gym to check out the famous broken bat from when Jake and his fraternity broke a world record, playing 101 straight hours of softball. If you ever want to hear some hilarious stories from those four days just ask. Jake ended up in the hospital at one point and had temporary amnesia around day 3 from sleep deprivation. He didn’t even remember how to swing a baseball bat even though he had already been playing for three whole days!

But one of my favorite memories was from a random park bench in the middle of campus. During our freshman year we both stayed on campus and picked that specific park bench to meet in the evenings to do a Bible study together.

We took a few minutes to sit at the bench this past Friday night and it flooded back the memories. The bench was much more worn than it used to be, weak and flexing under the pressure of the many years it has been in the elements. But it was bolted to the same concrete square that was there many years ago…the same strong foundation.

I couldn’t help but smile thinking back to that young, careless couple that used to sit on that bench all those years ago. And just like the bench, the elements have changed us. This challenging life has made us almost unrecognizable, yet we still remain firmly secured to that same foundation that God placed under our feet all those years ago.

Our marriage has been through storms that few others have to experience. But God has so graciously carried us through each one, allowing our relationship to remain firmly connected and rooted in Him. I think about the months and months we have had to be apart due to one child being in the hospital. I think about the hidden challenges that come with raising a special needs child- the jealousy of a “normal” life that Jake gets to escape to each day when he is working. Or the resentment that breeds when one parent gets more sleep than the other.

Even now, having to make long term plans to sleep in separate rooms to protect the health of the boys. Our marriage tends to fall secondary to our responsibilities as caregivers, not parents. Our primary goal is simply to keep these boys healthy and alive. But right now that is the calling God has placed on both of us, and we choose to focus on contentment in this unique calling instead of focusing on the things we are missing out on.

I have been personally struggling this week with a few big emotions. These past few months have been wonderful for our family. We haven’t had a medical emergency since January, thus breaking all previous records. As I drive around this beautiful town God has placed us in, and as I look out the back deck of my comfortable home at the vast mountain my mind keeps reminding me that our tragedies aren’t over. At some point these mountains and sunsets will again be replaced with hospital walls and windows that don’t open.

I am struggling between soaking in the calm moments, but also sensing that I still have yet to experience the “worst day of my life” and that it could come at any moment. We have experienced so much pain and tragedy, yet I realize that we haven’t been through the biggest storm yet…the loss of a child.

When you are raising a medically fragile child you can never fully relax. The harsh reality is that we attempt to live a normal looking life in between medical emergencies, knowing that one of those very emergencies will eventually take his life. It will make you crazy if you dwell on it too much. I guess this week I can’t seem to shake that dark cloud.

It is in weeks like this one that I have to turn to God’s word and seek His peace.

Philippians 4:6-8 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable- if anything is excellent or praiseworthy- think about such things.”

This week I am praying that God continues to cover me with His peace and guard my heart and my mind when my earthly emotions trump my faith in His plan.

God bless,

Leah

 

Life is picking back up for our family, but we are still cautiously keeping the boys tucked at home as much as possible. We take turns fulfilling all of our obligations but the boys are going a little stir crazy at the house all the time. Right now between Jake and I we are leading 6 Bible studies in the evenings throughout the week and running two soccer practices! We run some of the studies in our basement and have the teens enter through the basement entrance so they don’t share air with our medical marvels.

On Saturday we went to check out a new BBQ place by the river; we saw online that they had an outdoor seating section that was isolated enough for us to feel comfortable taking the boys for an escape. We arrived right when they opened and no one was there but us, so we sat in the corner of the restaurant and enjoyed our food in the air conditioning. The boys were both pretty pumped about the adventure. It was a brief moment of normal.

 

Jake will head back to work at the beginning of August and we will adjust to a new normal. With him being in such a germ susceptible setting we will have to function at home a bit differently. He will come in from school through the basement and shower downstairs, tossing his clothing straight into the washer each day. He will also be sleeping in a different bedroom by himself to keep him from breathing on the kids all night just in case he contracts something.

In previous years if Jake started to come down with something contagious we would book a hotel and he would move out for a bit to protect the kids. But one of our quarantine projects was finishing a bedroom in the basement so he has a place to stay, which will save us some money!

Either way, it will be a big adjustment for our family as we go from 24/7 family time to Jake being exposed to the virus daily by hundreds of kids. We are still trying hard to keep our faith bigger than our fear!

We have obviously decided that Malachi will not be going to school this year, as the risks outweigh the benefits. We are still trying to make a decision about therapies for both boys.

This week Malachi and I took a day trip to Vanderbilt to meet with the spine and hip surgeons. Jake graciously made sure I had enough naps in the days leading up to the road trip so I could be alert on the road. It is only 3 hours there and 3 hours back, but when you run on fumes all the time even those short distances can get dangerous. I downloaded some new songs on my phone and turned the drive into a karaoke party, much to Malachi’s enjoyment haha.

Malachi’s spine is still at a 43 degree curve, which is only one degree more from where it was at last summer. For now it isn’t severe enough to require surgery, praise the Lord. The spine surgeon worries that a growth spurt may affect him in the negative direction but for now we are still prolonging that massive surgery.

Malachi’s x-rays are so unique. The tubing that runs down his neck and piles into his belly is his brain shunt- it takes spinal fluid out of his brain since his brain bleeds clogged the original path of the spinal fluid. It is extra long so it can grow with him as he gets taller, thus avoiding an unnecessary brain surgery to replace tubing. You can also spot a very small bright circle next to his heart. That is the metal coil we placed in his heart procedure several years ago to close his PDA.

Malachi’s hips are still dislocated and are literally as bad as they could possibly get. The tops of his femur bone have not only migrated out of their sockets but are now up above the hip entirely. You can actually feel them through his booty. Getting them back into socket is not even a reasonable option, and right now them do not seem to be causing him pain. If they start causing pain we will have to do a major operation to saw off the head of the bones but obviously that is a last resort. For now we continue to wait and watch annually with both surgeons.

I did talk with the orthopedic surgeon about Malachi’s legs turning colors when he sits in certain positions, but he said we shouldn’t worry too much about that as long as it remains positional. Malachi will also be getting new AFOs this week which will help cut down on the pressure sores he has been getting on his ankles.

Malachi absolutely loved being able to go on a trip with just mommy and no Levi. He especially liked when Levi started crying because he wasn’t allowed to go.

They sure do love each other, even though sometimes there is some serious jealousy between them. Levi has been asking to “hold” Malachi while they watch TV together.

Malachi has been swimming like a pro lately with his primary goal being to get to Levi. We have been so impressed with his swimming skills this week; I took a brief video for you:

Malachi is such an exceptional kid! I wish you all could spend a day with him- it would change your perspective so much on children with disabilities.

And little Levi sure has been a firecracker this week.

He mimics whatever he sees his daddy doing and I came out to find him settled on the couch reading daddy’s Bible and “taking notes”.

There is a verse in the Bible that God loves to bring to my mind often, and usually in a very convicting manner haha! But oh the wonderful challenge that it is for me!

Philippians 2:3-4 “Do nothing out of selfish ambition or vain conceit. Rather in humility value others above yourselves, not looking to your own interests but each of you to the interests of others.”

This verse challenges me to strive for the humility of Jesus Christ…a humility that isn’t natural or easy to do. Humility is something that I think many Christians have lost sight of in the last several months. We have morphed into an every man for himself mentality and forgotten the challenge to be DIFFERENT than the world, putting others above ourselves.

I have read so many social media posts about masks, social distancing, newly enacted rules. Arguments flare up, each side adamantly arguing their stance both unwilling to budge on their beliefs.

As Christians we have been given a perfect opportunity to live out Philippians 2 the way Christ would have. Yet for some reason we are allowing our egos override our humility. Humility does not equal weakness, nor does it make you an ignorant pushover. Instead it speaks to a self-centered world that like Christ, we are going to regard them as more valuable than ourselves. It speaks to others that we are living for God rather than our own selfish desires.

What is more important to us as Christians…living the way we want or being a mirror image of Christ, living the way He did?

Don’t let the chaos of this world change the standards God has set out for us. Instead see them as opportunities to live out the word and desires of God.

This week let’s all try to find those selfish moments in our day and replace them with the humility of Christ.

God bless,

Leah

Last Sunday afternoon we loaded up and headed out on a retreat with our youth group! There were definitely some noteworthy things during the retreat that I would like to share with you in no particular order.

#1 Malachi and Levi absolutely loved it. They have been locked in the house for so long that the interaction with others was extra special. They were exhausted by the time bedtime rolled around. We brought a king sized mattress from our house for me and the kids to crash on and set up a makeshift bedroom in a living room area of the main house. No medical emergencies or concerns the entire time we were there for the Carroll boys.

I had some wonderful, godly friends take time off of work to come and help with the boys. This was the first time I have been able to sit in the worship services with the youth at camp, and what a blessing that was to me on so many levels.

We also had a four month old baby along for the adventure, and Levi in particular was pretty smitten with him.

Interestingly enough, when Malachi got to hold the baby for the first time Levi grew very jealous and possessive of big brother Malachi.

#2 The logistics of the camp worked out wonderfully! We had one snake bite from a teenage boy that tried to capture one but other than that we were injury free. With a total of 52 people there one injury isn’t so bad!

There were a few new things to navigate along the way, like how to feed a group that large on the road in a pandemic. We ended up finding a local park and creating a makeshift Chick-Fil-A buffet using the wheelchair ramp.

#3 GOD SHOWED UP! Within the first hour of chapel the Holy Spirit moved. We watched as these kids tasted the spirit of God, some of them for the first time ever, and it was a beautiful scene.

We immediately recognized that God had some big things in store for the week, and of the eight years Jake and I have been serving as youth ministers, this camp hands down was the most life changing. Our final service lasted over 4 hours with the kids sharing testimony after testimony about the things God was revealing to them. What a faith strengthening scene to watch.

We are still winding down from camp and processing where to go from here. The kids tasted the Lord and now crave that feeling again. Jake and I have the wonderful responsibility to cultivate that within each of them and guide them as much as we can. I am sure I will be sharing that journey with you often in the coming weeks and months.

We came home on Wednesday afternoon and before we pulled into the driveway we already had youth calling to see if they could come over to talk more about God! What a blessing! We would love to open our home again for Bible studies and dinner for the kids each week but are going to spend some time in prayer and see if that is the direction God wants us to go right now.

On Thursday Jake’s family came into town to celebrate the fourth of July together. We have had a weekend full of cousin time swimming in the pool, splashing in the river, and other fun adventures full of laughter.

And more babies!

We attempted some sparklers and Malachi was a big fan.

And then we attempted some fireworks and those didn’t go over too well.

And I know I have shared a similar video with you before, but each time I see Levi helping Malachi without being prompted it warms my heart. I pulled out my camera in time to catch him helping Malachi play a game with him; the look on Malachi’s face is so sweet:

This week I will be headed west with Malachi and taking him to Vanderbilt to see both the hip and spine surgeons. I am becoming anxious about this appointment. For children like Malachi, surgeries in both of these locations are common and extremely painful. These surgeries are BIG ones with months of recovery and regression of skills. We are praying that we can ward them off just a bit longer, but then part of me wonders if it would be logistically better to tackle them while he is still small in stature.

I will be making the trip solo with Malachi, and usually we go up the night before and spend the night. But with the COVID-19 being so prominent in that area of Tennessee I will be attempting to make the trip there and back in one very long day. I am in a constant state of sleep derivation and I always worry about being able to safely drive when I am running low on fumes. Please put my alertness on your prayer list!

While it was such a joy watching the teens at camp, it was also refreshing for my soul. Being able to worship with something other than the radio blessed my heart so much. I am one of those that connects strongly with God through worship so not being able to attend church every Sunday has left me craving that opportunity again.

Lately I have been really thinking about my purpose here on earth and what it is that God is calling our family to do next. I think about the day I stand before God- what will that conversation be like?

In Matthew 25 we find the parable of the talents. A talent is a measure of weight, like a talent of gold that held a high value. A man is going away on a journey and he entrusts three of his servants with different numbers of talents while he is gone. Here is a breakdown of what each of the servants did.

Servant #1: received 5 talents and immediately went and traded them to earn 5 more.

Servant #2: received 2 talents and gained 2 more.

Servant #3: received 1 talent and went into the yard and buried it to keep it safe.

The master comes back after his long journey and calls the servants to him to account for his talents. The first two servants presented their original talents plus their newly acquired ones. The master says to them “Well done, good and faithful servant. You were faithful with a few things, I will put you in charge of many things; enter into the joy of your master.”

But when he comes to the third servant the conversation is a very different one. He hands him back his original talent and explains that he was afraid and hid it to keep it safe. He says to the master: “See, you have what is yours.”

But the master is very upset that the talent hasn’t experienced growth while he was away. So unhappy, in fact, that he takes the talent from the servant and gives it to the one who has ten.

As I read the parable I can’t help but think about what I am doing with my talents. Am I taking the measure of faith God has given me and using it to produce more Christians, that is, to share the gospel with others and watch God’s kingdom multiply? Or am I keeping my faith buried…mine and only mine to have and to hold and wave in the air when the master returns?

Are you ready to stand before the Master and explain what you did with the talents He trusted you with?

I think about those first two servants and the excitement they must have experienced when their portions doubled, knowing that they would have something exciting to discuss when the master returned. Likewise, are we excited and anticipating that conversation in the same manner?

Or is our faith in that deep hole in the yard? Something WE know is there, but remaining in that safe, unfruitful spot so we have something to hand back to him when we come face to face.

Our faith is meant to be contagious. It is meant to experience growth…to multiply and to explode, impacting all of those around us in a mighty way.

This morning  7 of the youth stood in front of the church and shared specific things God is placing on their hearts. While they spoke, there was a radiance on each of their faces, the radiance that the Bible mentions adorned Moses’ face after he met with God on the mountain.

I think about the words in Psalm 34 that say “They looked to Him and were radiant, and their faces will never be ashamed…O taste and see that the Lord is good.”

On the faces of those teens I saw a new boldness, a new resoluteness that I have never seen before. They tasted the Lord this weekend and oh how sweet a taste they received. My prayer for each of them is that they realize the strength and power of the talents God has handed them. And that they recognize that we are called to grow those talents, not tuck them away to hand safely to God when we meet Him face to face.

And I will continue to pray over my talents, watching and waiting for an opportunity to watch them grow.

Much love,

Leah