In today’s post you will see several Malachi photos, some with oxygen and some without. I am thrilled to report that we were finally able to successfully wean him off this week!

When Malachi is on oxygen there are a lot of extra moving parts. Insurance only allows 3 portable tanks of oxygen at a time that we use for car rides, saving the charge on the portable oxygen concentrator for our destination. These tanks empty pretty quickly so making sure to always have refills on hand is a priority.

The portable oxygen concentrator was a purchase we made with some grant money when Levi was young and still on oxygen 24/7. It has proven to be such a blessing! When he is running on 1 liter of oxygen the charge will last about 2.5 hours so we end up doing a lot of math in our head to make certain he won’t run out.

We need to monitor his oxygen saturations to adjust the oxygen liters as needed, so he is hooked to a hospital grade pulse-ox machine. This machine also holds a charge but dwindles quickly. We also have a respiratory protocol with his nebulizer, cough assist, and shaky vest every four hours when he is sick.

As you can imagine, staying at home is ideal! However, we have had such a busy few weeks that required us to be on the go. We made it work, but the mental exhaustion of keeping track of everything on top of regular medications and routines is thick.

Last Saturday was a perfect example!

The high school boy’s tournament soccer game was unfortunately scheduled on one of our busiest Saturdays so Jake was committed to attending that.

While he was at the game, I was with Levi and Malachi at the wedding of a friend whom we call “Big Levi”. My Levi was the ring bearer and did such a great job! I tried to plan out Malachi’s oxygen needs but definitely failed and had to head to the car early to get him on a larger tank. We don’t have a wheelchair accessory that holds the tanks and they are huge.

Jake and I met up after each of those events and hopped straight back into the car to go to Knoxville to speak at a Make-A-Wish fundraising banquet. The hotel that held the event had generously donated an overnight stay in one of their rooms to our family and we decided to make an adventure out of it!

On a total side note, you would have gotten a good laugh watching us Carrolls try to be cultured for the night. It was Kentucky Derby themed and we spent most of the evening trying to figure out which silverware to use for each food item presented. Levi has become quite the eater and will try just about anything. He knocked out a plate of Russian food at the wedding for lunch and a Kentucky Hot Brown with grits for dinner. But his eagerness to try new foods had him sticking his finger in the pimento cheese and taking a big lick from the appetizer our table of ten was supposed to share. Thankfully the other guests were very gracious and kind.

Both of the boys were giddy with excitement to be in a hotel. We watched a family movie and then two out of the four of us crashed after our long day. Malachi’s supersonic hearing and being in the hotel was a bad combo and he couldn’t calm down enough to sleep.

We have spent all week trying to catch up on some energy! The weather has been beautiful and the playground has been our happy place. One of my favorite things about this time of year is watching the freckles pop out on the cheeks of both of my boys.

We also got a chance to see the northern lights from our front yard! It was such a fun surprise!

School is about to come to an end and we are eagerly awaiting the family time that summer will bring. June will be a medical month for us, catching up on the boys 6 month specialist visits and Levi’s Cincinnati surgery. But we have a free and clear July to look forward to!

About a week and a half ago I took Malachi to a new therapy center in a neighboring town for an evaluation for services. He only does hippotherapy right now and the more he is growing the more tight his muscles are becoming. Now that we have insurance stabilized I would love to get some extra stretching sessions in for his growing body and to get some extra eyes on him to find other ways we can increase his quality of life.

He was still on oxygen at the time of the appointment and was having an uncomfortable day, but we had waited on this appointment for a long time and they have a very strict cancelation policy so I figured we would just try to charge through.

As soon as we entered the building I felt my nerves start to stir and anxiety took over. We sat down to fill out paperwork and Malachi went into a large seizure in the tiny waiting room and I felt this innate desire to protect him from being watched in his seizure but not knowing the building to be able to figure out where to take him. I usually cover his shaking eyes with one hand as I wheel him somewhere mid-seizure but when I have the oxygen concentrator I don’t have an extra hand to do that with. I was overcome with a feeling of helplessness and cringed as the eyes of all of the employees behind the desk and the other waiting room moms fell on Malachi’s contorted body. He ends his seizures with a deep, aggressive coughing session and even more eyes drifted our way.

The therapist came shortly after and wheeled us back to an eval area and I could feel the tears brimming in the bottoms of my eyes. My inner voice was harsh, “Why are you being so ridiculous??” As I desperately tried to get my emotions in check. She had me lay him down on the exam table for measurements and within 30 seconds Malachi threw up everywhere. We don’t lay him down flat on his back for fear of aspiration, and I watched as he choked on his vomit and started panicking, unable to breathe. I scooped him up and tried to get his airway clear and he finally took a deep, wet breath.

By the time we left my emotional reserve was gone and I felt a mourning creeping into my heart. It wasn’t the events of that hour specifically that triggered me but rather it was the memories that flooded in from the early days in those waiting rooms.

When Malachi was little I entered those waiting rooms with such incredible hope for healing. I dreamed of Malachi taking those first steps. I dreamed of audible words exiting his mouth. I craved signs of progress towards “normal”. It was a place where we could work towards the miracle I was sure was coming.

Today my goals in that waiting room have changed a bit. Instead of signs of progress I crave comfort and relief for him from his tight muscles. Instead of those huge jumps in abilities I just hope that we can do something that will enrich his life even if it is ever so slightly. We haven’t given up on the miracle….but I have learned that the miracles for Malachi aren’t just in the big things that take our breath away. Every day, every smile, every tiny step of progress is our miracle.

As I drove home last week with tears in my eyes I realized that my heart had just felt these words from Proverbs in a profound way.

Proverbs 19:21 “Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.”

The Lord’s purpose.

The Lord’s purpose for Malachi’s life is so much bigger than my plans. What a fool I am to think that my plans are greater than His.

And today I am thankful for the hope that brews in my heart.

Much love,

Leah

It has been an up and down few weeks from my last post. Levi’s airway is continuing to struggle with allergies and a now a head cold. He gets around 24 ounces of high calorie formula through his g-tube at night to supplement the extra calories he burns during the day and we are on might 6 of him not being able to keep the nighttime feed down.

In addition to him not getting those needed calories at night he has also not eaten well during the daytime clearly feeling a bit off, dehydrated, and crummy. He has lost a noticeable amount of weight over the last two weeks and I am struggling trying to get food into him. He has also been too weak to send to school most days this week and just seems so pitiful.

In the chaos of vomit catching at night I have accidentally forgotten to turn his feeding pump off at night when I am frantically unhooking him. As a result, I pumped about 20 ounces of formula into our carpet/pad underneath. Whew our house smells a little rough right now!

Levi had an eye appointment on Thursday and he was able to do a test that he has never been still enough to complete in the past. This test allowed them to get in depth imaging of his optic nerve; these nerves have been on the radar for the doc since birth.

Prior to this imaging they had told us that his left optic nerve was deteriorating due to brain damage caused by oxygen deprivation in his first few weeks of life (a diagnosis called Hypoxic ischemic encephalopathy). They had warned us before that it looks as though he is losing vision in his left eye due to this nerve damage. This week’s tests revealed that the damage exists in BOTH optic nerves and he is on the edge of the line for requiring accommodations for vision impairment (enlarged print materials, etc). They have ordered more testing to check the tissue beside the optic nerves to see if the damage has spread to those areas as well.

This is obviously really disheartening news. Especially since there is nothing that can be done to reverse the damage. I suspect that some of his limitations in school can be attributed to his inability to see well and process what he is seeing.

I have been up and down on the medical mom roller coaster. There is a part of me that is just so discouraged for him, recognizing how many ways he is set up to fail in our society. Then there is the faith part of me that recognizes that God’s story for Levi’s life is still being written and to simply be still and see what God will do.

Malachi has had a rough week as well, also catching a head cold. For a typical child the recovery from a cold is a simple 3 day process. For Malachi it is a pretty intense life-changer, often taking 7-14 days to completely overcome. Right now he is on oxygen and cycling through our respiratory protocol every few hours to help keep his airway clear and open. We use a nebulizer and albuterol to open his airway, cough assist machine to send air deep into his lungs, and his shaky vest to break apart any stubborn lung gunk.

I am so so so thankful for the many supplies we have at the house to avoid hospital stays! This would have been a hospital stay had we not had the equipment on hand to keep him safe and comfortable.

Malachi is also gulping air more than normal and his seizures have increased and he requires lots and lots of venting (releasing the air in his belly through his g-tube). We are camping out in the living room this week to keep us close to equipment.

Prior to all this chaos we did have some fun family time!

The boys had a visit from our farm friends, who recently got a second sloth! This sweet baby girl is just four months old and as cute as can be.

The boys also got to do a little fishing.

Malachi genuinely loves fishing (despite his photo)! We cast out the line and then hand over hand help him reel it in. Malachi will “jig” the line as we reel it in to tempt the fish and is so focused and proud when he catches one.

I have been feeling so many emotions lately. If I had to pick just one it would be “weary”. There are times within this calling that a weariness creeps into my bones and discouragement comes. And this has been a season of weariness. Anyone else feeling that today???

I look to my left and right (admittedly dangerous step #1) and see others that are seemingly able to balance their lives, priorities, marriages, and friendships.

When I look within a 24 hour chunk of our day I am spending a large majority of that in my caretaker role of addressing seizures, managing feeds and medications, and trying to sneak in some normal parenting moments and normal marriage moments. I am incredibly thankful to have a husband that loves the Lord, is filled with grace, and is willing to run this race alongside of me. The scraps that I have left to offer friends are not enough to do friendship “right” or well.

In a world where I am not, and will never be, good enough at any of these roles, I am thankful that HE is enough. I cannot look at a 24 hours chunk and not see the many ways He was come alongside me and strengthened me. I am thankful for a God who sees me and shares His grace with me…even though I will forever be undeserving.

This season of weariness is not hidden from God and I believe it serves a Kingdom purpose, even if I can’t directly see it.

I read something this week that reminded me of how thankful I am for God and His plans. I didn’t write this and I have not been able to find the author, but I really needed this reminder.

In the Bible, it rained for 40 days and 40 nights. Day 41 came and the rain stopped.

Moses committed murder and hid in the desert for 40 years. Year 41 came, and God called him to help rescue Israel.

Moses went up on the mountain for 40 days. On day 41, he received the Ten Commandments.

The Israelites wandered in the wilderness for 40 years. Year 41, they walked into the Promised Land.

Goliath taunted Israel for 40 days. Day 41 came, and David slew him.

Jonah preached a message of repentance to Nineveh for 40 days. On day 41, God stopped His plan to destroy them.

Jesus fasted and was tempted for 40 days. Day 41, and the devil fled.

After His resurrection, Jesus appeared to the disciples for 40 days. On day 41, He ascended into Heaven.

Don’t give up at 40, because 41 is coming.

While it is fun to think about the day/year 41 when we get to see victory, it is also important to cherish and value the work that God does within us for the first 40, preparing our hearts for what He is about to do.

“Why do you complain, Jacob? Why do you say, Israel, ‘My way is hidden from the Lord; my cause is disregarded by my God’? Do you now know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:27-31

Sincerely,

Leah

Our spring break getaway spoiled us tremendously and getting back into the real world has been difficult for all of us.

Overall we are all healthy and well. So here are some rambling updates…

Malachi has been so funny lately. We plan on taking him to a small private school for a few hours each day starting in the fall- he is entering the 6th grade, which blows my mind! He is a sponge these days and is finishing at least one novel a week on his audiobook reader. He is such a fun kid and craving some peer interaction. With him starting school with new-to-him kids I was telling him we were going to start working on his response time when asked a question. I explained that I can be patient with him and wait for him to respond but that the kids his age just aren’t that patient. He took our conversation to heart and when we sat down to dinner 15 minutes later he continually punched Jake to get his attention and ask for things….a sip of his drink, a taste of blackberry jam, etc. And did it all with a big smile on his face.

Malachi is so used to not being “heard” by strangers that it has slowly become his expectation. We simply have to teach others to listen to him and encourage him to keep trying.

Side note on that thought trail. When we are in public we are met with several different reactions, conversations, and experiences. The majority of the people we meet are very kind and mean well with their comments. But so many of them assume that Malachi cannot understand what they are saying which is just not true.

This week in the grocery store parking lot we were stopped by a woman who was expressing her condolences on how hard my life was and how she would be praying for me as well as my son’s healing. Her intentions were so pure, but as I got in the car I thought about those comments through Malachi’s eyes and they just made me feel so sad for him. I never want him to feel that he is a burden to me or that there is something wrong with him.

These opportunities allow me to practice showing the grace of Christ to others, and they also allow me to have affirming conversations with my Malachi about how he is God’s handiwork.

This week Levi asked me if Malachi had Jesus in his heart. I contemplated how to answer him, so instead of answering I told him to ask Malachi. And when Levi asked Malachi he immediately signed YES YES YES with so much enthusiasm he nearly threw himself off the changing table. What a precious reaction!

Levi has been growing and changing so much. These last few days he has been struggling a bit with his breathing. We were worried he was getting sick but are now pretty confident he is dealing with allergies. They have also been doing controlled burns in the national forest beside our house and the smoke has been significantly impacting his breathing.

Because of Levi’s tight airway, any swelling causes labored breathing for him. It also causes him to gag and then vomit often. So it brings about dehydration and weight loss as he isn’t retaining the same amount of calories his labored breathing is burning. Usually by April we are getting close to needing another Cincinnati surgery and this year is no exception. He can run around and be active for just a few minutes before he is gasping for air and pale.

The only issue is that we are running out of surgical options to help his breathing. We discussed removing his lingual tonsils when we spoke with his surgeons post op last summer when we removed his tonsils and adenoids. But really that was the only “small” repair option that we had on the radar. They did mention the possibility of doing another single stage laryngotracheal reconstruction (where they put the piece of rib in his vocal cords to prop them open) but we REALLY want to avoid that surgery if at all possible. We would limit his activity, particularly the ones that cause the struggled breathing, before we schedule something of that magnitude.

They open up the summer surgery schedule in April so we are working to get his dates established with his specialists and the operating room for this summer.

Here is a photo from career day at his school; he wants to be a match teacher like his daddy. He is very into matching daddy these days.

Next topic- and a difficult one. I owe you each an apology.

This blog started as a way for me to share my faith with others through the testimony of Malachi’s life. And while I have tried to stay true to that intention I have allowed insecurities to distract me from that purpose over the last six months.

I can’t count how many times I typed out a devotional thought only to delete the entire thing, worrying about my word choices or searching for hidden tones that people might find within what I wrote. I overthought each entry, feeling inadequate and not Christian enough to hear clearly from the Lord and be used as His mouthpiece.

I let the words of man replace the voice and promptings of the Lord, and the conviction I have felt over this is overwhelming. And embarrassing. In the Bible we see God speaking through a burning bush, a donkey, and lots of insignificant people. Time and time again in God’s Word we see Him choose wretched sinners like me to share His truths.

2 Corinthians 4:7 “But we have this treasure in earthen containers, so that the extraordinary greatness of the power will be of God and not from ourselves;”

We are simply earthen vessels. We don’t have to worry about the presentation or interpretation, but rather allow God to move through our obedience to Him. My accountability is to God and God alone. So I am going to do my very best to write what I feel like He is laying on my heart and trust that His Word will not return void (Isaiah 55:11).

I apologize for my disobedience, and I am repenting to the Lord for it. I didn’t share so many things I felt called to share, and I am so sorry that I allowed myself to be distracted.

Galatians 1:10 “For am I now seeking the favor of people, or of God? Or am I striving to please people? If I were still trying to please people, I would not be a bond-servant of Christ.”

So here we go…writing and walking in obedience.

Over the last month I have had the tiniest chunk of scripture playing in my head over and over again. In fact, last week it was mentioned in a Bible study, which is wild because it is such an obscure piece of scripture.

Context: Shadrach, Meshach, and Abednego refused to bow down to the king’s graven image and were cast into a fiery furnace. The furnace had been turned up so much that the men who led them to the furnace entrance died from the heat. The three friends were tied up and thrown into the furnace but the Lord sustained their lives. Oh how I love this chapter SO MUCH!

Daniel 3:26-27 “Nebuchadnezzar then approached the opening of the blazing furnace and shouted, “Shadrach, Meshach and Abednego, servants of the Most High God, come out! Come here!” So Shadrach, Meshach and Abednego came out of the fire, and the satraps, prefects, governors and royal advisers crowded around them they saw that the fire had not harmed their bodies, nor was a hair of their heads singed; their robes were not scorched, and there was no smell of fire on them.”

I grew up in southern Ohio in a very old farmhouse that didn’t have heat or A/C, our main source of heat coming from a fireplace in the living room on the first floor. Being the youngest and having two older brothers, I was rarely responsible for stoking the fire. But the smell of smoke often lingered on our clothing and in our hair and served as a reminder of that fire.

But these men were literally IN the fire and there was no smell of smoke on them. They were unaffected by the seemingly uncontrollable circumstances around them. We see miracle upon miracle in this story.

In many ways our medical world for the last decade has been a fiery furnace. It has been a place that we never expected to find ourselves in and something we were not fully prepared for. And from this fiery furnace we have been given the chance to watch miracle upon miracle.

But this month I have found myself wondering if I smell a little like smoke. Do I carry around the evidence of the fire that we are in? Or do I carry around the evidence of God’s protection within it?

This week I am challenging myself to look for God not just in the big, evident miraculous moments but even in the smallest details. Those precious moments where He is still very much working, even in the absence of visible evidence. The absence of that smell was as big of a miracle as was their preservation of life.

1 Peter 1:6-9 “In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, obtaining as the outcome of your faith the salvation of your souls.”

May our time in the furnace, whatever those may be for you, result in praise and glory and honor at the revelation of Jesus Christs.

Much love,

Leah

We ended the month of March with much needed family getaway! The break allowed us to feel “normal” for a week, free from medical appointments, insurance battles, and phone calls. It was a needed moment to breathe for all of us.

We used Malachi’s Make-a-Wish passport and packed our days with adventures. I will include a few photos, but this video does a pretty decent job summarizing our adventures:

Malachi chose most of our activities and we learned quickly that he wouldn’t be allowed to do all the things he had put on his list. Many of the places we contacted had liability worries about him participating so we had to navigate that delicately to avoid major disappointments. He wanted to ice skate but the facility wouldn’t let his wheelchair on the ice. He wanted to ride rides but they required the ability to sit independently. There were a surprising amount of “no”s this trip.

But there were also an incredible amount of surprise blessings. So we chose to focus on those!

There is also something else we have been really trying to consider…should we be giving Levi experiences that his brother can’t participate in? Navigating this one was delicate this trip. But sweet little Levi was very aware of his brother missing out and brought tears to my eyes one afternoon. We had received wristbands for “the Island”, an outdoor area with several rides that we could do for free. We passed a trampoline jumping area and I asked Levi “Would you like to do this? It looks like fun and there is no line!”

Levi: “Can Malachi do this one?”

Me: “He isn’t able to do this one but I think you would really enjoy it!”

Levi: “That’s okay, I don’t want Malachi to feel sad.”

Finding the most appropriate way to parent in our world is very hard and situational. And I am confident we don’t always get it right. But watching Levi’s character grow is so special.

So focusing on the “yes”s….

We did alllllll the shows (Stampede, Hatfileds/McCoys, Magic, Comedy Barn). We swam in the wave pool and lazy river. We went to the Titanic Museum, WonderWorks, Magiquests, and so many other fun stops. We flew in a helicopter, rode go-cats, and battled in bumper cars on and off of the ice.

We had lots of medical moments in the mix, but we charged through. The very first night Levi’s feeding pump tube came out of his extension and we “fed the bed”, meaning the 26 ounces of formula that was meant to go into Levi’s tummy went into the hotel bed/mattress instead. Thankfully the hotel had waterproof pads on their beds and we had a washer and dryer in the unit that was the MVP of the morning.

Navigating Malachi’s seizures in public is always a bit tricky and brings about some anxiety. When we enter a place we mentally mark a safe space for us to run to when he has a seizure. But we also try very hard to preserve his dignity in those moments and not make a spectacle of it; many times that means we have to wait for the seizure to end before we take him to a different location to vent him, as walking him by crowds mid-seizure wouldn’t be respectful to him. But there were many places this week that didn’t have a place to run to that was free from the crowds and that situation always elevates our stress levels a bit.

But oh how the trip was worth it!! Seeing the joy on both of their faces was so special. And these medical moments were just drops here and there on a relatively normal week! Malachi loved the opportunity to have choices and make decisions for the family. And we were able to do so many things that we would not have been able to afford to do.

We are so thankful to Make-A-Wish for these special “extras” and also thankful for friends that were generous enough to offer us a week in a condo.

I found myself being extremely sentimental this week. March is the month of many surgeries for Malachi over the last 11 years…his first brain surgery, his g-tube getting placed, and so many others.

Six years ago in March we underwent some life changing and desperate surgeries with Levi. And March also marks the month we got to bring Levi home after 5 long months in the NICU.

March the following year was when we took our first every family trip, and interestingly enough it was to Pigeon Forge. I remember having to do the math to make sure we had packed enough oxygen tanks, tube supplies, and medical EVERYTHING to keep us functioning safely.

And here we are…many March’s later. Things are still complicated, things are still messy, there is still a lot of math involved, but WOW what a testimony God has written in our family.

Psalm 37:24-26 “The Lord makes firm the steps of the one who delights in Him; though he may stumble, he will not fall, for the Lord upholds him with His right hand. I was young and now I am old, yet I have never seen the righteous forsaken or their children begging bread. They are always generous and lend freely; their children will be a blessing.”

Oftentimes my memories can be really difficult things to reflect on. But this week I find myself thinking back on some really hard seasons for our family and being able to see the very present hand of the Lord through every season.

He has never forsaken us. And He has been Jehovah-Jireh (the Lord will provide) through every leg of our journey. He has been the fourth man in the furnace with us and continues to guide us through terrains we aren’t equipped to navigate apart from Him.

This week I am increasingly grateful for the testimony He is writing through our family. Some weeks that is a hard sentence to say. But this week I am overwhelmed by God’s providence. And I am thankful for special weeks like this one that help me forget the cloudier days.

Much love,

Leah

I am going to informally nickname this month as “Medical Mode March”. We are navigating a few significant things:

1. Malachi’s new Katie Beckett part A waiver program; this is a wonderful program for our family and comes with secondary insurance. We have been navigating through the new enrollment meetings and paperwork over the last two weeks.
2. Malachi’s lapse in secondary insurance coverage; for about a month and a half Malachi was without secondary coverage. The bills have started to pour in and the amounts would absolutely shock you. All of the machines that we require for his health (cough assist, oxygen concentrator, shaky vest, etc) are rented monthly. Just for a frame of reference, the state waiver program ran their calculations and have determined with their fancy formulas that Malachi’s level of care AFTER primary insurance pays is $189,375 per year. Thankfully we were on a different waiver with Katie Beckett (part B) for the 1.5 months without secondary insurance so I *think* we will be able to get reimbursed for many of these bills from the lapse, but the process for those is a bit complex to navigate.
3. Just to add to the fun, the state changed Levi’s secondary insurance to a different company. That means we have to update all therapists, medical suppliers, specialists, and pharmacies with the change and then they all need to get new prior authorizations to refill medications and supplies. We also have to do with for all of Malachi’s too. I know that sounds complicated, so let me present our current scenario. Levi uses one feeding pump bag a night for his high calorie formula. These are not able to be re-used and since it is a prescription for these feeding supplies we can only refill our 30-day supply about a week in advance. Because they switched his insurance the company can’t send the refill until the new insurance approves it (a multiple day process) and then ship it out (another multiple day process). So we now have the stress of trying to figure out how to manage the days without the necessary supplies to feed him.

Each day is spent on the phone and computer trying to navigate all of these changes and get the boys the things they need to get through another 24 hours. This is a world that I never knew existed, and frankly it is a very polluted and discouraging system.

In addition to the behind the scenes paperwork troubles above, Malachi’s seizures have been relentless lately. We met with his epileptologist last week to try to work on some medication changes. We have made some pretty drastic changes which affect his mood and disposition. We usually have to give him a few weeks to settle into medication adjustments before we can determine if the personality changes we see are long lasting and we need to go back to the starting spot and try different changes. We want Malachi to have a quality life; if we overmedicate to reduce seizures that is not quality. But if we under-medicate and he seizes all day that is not quality of life either.

In many of the photos that I post today you will probably notice the mood changes on his sweet little face. But Malachi is doing an exceptional job communicating these days and letting us know when things are bothering him. We just aren’t getting as many smiles as we are used to from him.

I am trying (and often failing) and trying to not get cynical and bitter towards the medical world right now.

A few months ago we were gifted a very generous one-week stay in a Wyndham resort by some dear friends. We rarely take family vacations so we have been contemplating where and when to use the free week. But then it hit us! When Malachi received his Make-A-Wish to Give Kids the World Village it came with something called a passport that gives our family free admission into several places all over the country for one year out from the wish. We looked at the list and noticed that Pigeon Forge/Gatlinburg has several places that will give all four of us free tickets. Malachi’s passport expires in May so we decided to take a family trip over spring break and hopefully get a much needed break away from the stress we have been navigating.

I have been letting Malachi choose the activities during our late night talks and oh boy, is he pumped! It has been a really good distraction for us!

Side note- after all of the hoops we have been trying to leap through lately the unexpected generosity of these organizations to our family has made me emotional. The gesture of trying to help our family is overwhelming.

In other news…

Our kids indoor soccer league ended yesterday and what a fun season it was for all, including my crew!

The boys both love the busyness of the season and Jake and I love getting to coach a different demographic of players. High school players are great, but teaching young children the sport is so different and fun. And having the freedom to speak openly with them about God was such a blessing for all of us. Now that the season has ended we will focus fully on the high school boys season.

The boys and I had a day of medical appointments in Chattanooga last week so we took the in-between time to visit the aquarium! We have been several times with Malachi but the last time we tried to take Levi he was too young and disinterested to justify doing it again anytime soon. But this year he was wild eyed with excitement and jumping up and down. His energy was so sweet.

We did get a few smiles this week from Malachi!

And plenty of smiles from little Levi. We have been encouraging him to dress himself, so ignore the backwards and the mismatched haha.

Levi has been dealing with some pretty big emotions lately and has been having some anxiety surrounding Malachi. This is one of the underbelly sides of parenting medically complex children- trying (and often failing) at masking worry and stress from the kids. Malachi’s seizure changes have caused me to be a little concerned and that seems to be flowing toward Levi accidentally.

When I get up on weekday mornings to get Levi ready for school Malachi is usually past his nighttime seizures and into a deep REM sleep so I will leave him in the bed for a few minutes while I pack Levi’s lunch. It is the only three minutes in our day that Malachi is left somewhere out of my sight! So Levi will often sneak into the bedroom to lay next to Malachi and say good morning. This week he came running out of the bedroom to tell me that “Malachi was sleeping more quietly than normal and he might have stopped breathing.” Hearing those words come from my 6 year old’s mouth was hard, but seeing the panic on his face was even harder. I ran in there to find Malachi still sleeping soundly. But the anxiety that Levi developed in that moment was a much needed reminder to me that I need to do a better job helping him with big emotions, particularly worry and fear.

Their relationship is so sweet, especially as Levi gets older. When I ask Malachi a question about what HE would like to do when we are voting on a family decision Levi will run over and grab Malachi’s hand to make him sign yes to the option Levi wants. In Levi’s eyes he is very good at being sneaky. And Malachi loves the banter, oftentimes signing yes with a sly grin to the opposite of what Levi wants to do just to mess with him. They are such a funny duo.

Psalm 90:17 “May the favor of the Lord our God rest on us; establish the work of our hands for us- yes, establish the work of our hands.”

There are so many areas in my life right now that this verse can be prayed over.

• Parenting
• Navigating medical decisions
• Ministry opportunities that we are called to come alongside
• Personal relationships and our marriage
• So. Many. Decisions.

My prayer this month has been for God to establish our steps as a family. That we wouldn’t have to guess if we are walking within His plan for us, but rather we would feel His guidance every step of the way.

Sincerely,

Leah

I have been trying to pinpoint my favorite moment from the last two weeks and I finally settled on it…

This photo was taken shortly after we went and picked up his new Ankle Foot Orthotics (AFOs). These are customized braces that Malachi wears during the daytime and they help keep his feet properly in place. Without the braces his hypertonic CP causes his muscles to contract and pull his feet up towards his shins. When I was in Cincinnati during Levi’s NICU stay he outgrew his braces and we weren’t able to get new ones for several months. The time without the braces affected him so much that he required double foot surgery with pins and tendon cutting to release some of the tension that had built up.

Malachi gets a new pair of these each time he outgrows the old ones and he gets to pick the print for the new set. After the measuring process it takes about 2 months to get them made. When we went to pick them up Malachi was very serious and when they brought out the new shoes he started his sheepish grin, genuinely excited to get new shoes.

Later that day when we picked Levi up at school Malachi just kept grinning, waiting for him to notice. And Levi didn’t disappoint, gushing over how cool Malachi’s new shoes were.

Watching Malachi’s face fill with pride brought tears to my eyes. And having such a “normal” moment…a moment where an 11 year old boy can’t wait to show off his new shoes…that is something that I cherish. Those moments are rare and cause some big emotions when they do come.

We have been trying to be very intentional lately with family time and making sure Malachi has a voice. He has been choosing to play games, this shark game being the top choice.

We also visited his favorite restaurant, a hibachi style restaurant that cooks in front of you. I love sitting next to him when we go so I can watch his excitement at all of the noises.

Our family got hit with a pretty mean stomach bug that kept us home for a week. It was a good opportunity for a reset in many ways.

On the week that we weren’t sick we managed to have a whole lot of fun! Swimming, fishing, soccer, and puppies!

Malachi has been devouring audio books lately on his Yoto player, a portable audiobook device. The narrators for most of the cards add in a lot of zest and fun voices. He is working through the classics, like Treasure Island and the Secret Garden. And he has finished some of the Boxcar Children but didn’t enjoy those as much as I expected him to.

I am very pleased to report that Malachi officially has secondary insurance again! This is a huge answer to our prayers and we are overjoyed to be able to close that chapter of chaos. We meet with the state on Thursday to finalize all of the details.

Now that he has insurance again we are considering increasing his therapy sessions while Levi is in school. We had decreased them down to one per week because he loves hippotherapy (horse therapy) so much but feel like he could benefit from more frequent sessions in other areas as well.

I know I have shared this with you recently, but I find myself in an odd season of life. We have had so many big changes happen in a short amount of time and adjusting to those has been difficult in many minor and major ways.

One of the biggest blessings of youth ministry was being able to host the teens a few times a month for Bible studies and dinner. And while there may be an opportunity for that in the future, or something similar, right now we are trying extra hard to be supportive while giving appropriate room for the new leaders to establish their ministry.

For the last several years Jake has organized a men’s Bible study most Saturday nights in our basement. Recently the church asked about opening this up to be a co-ed Bible study and relocate it to the church to open it up to a wider demographic, which happened to coincide with the youth change.

So we went from easy hospitality moments to nothing very quickly. We are praying about this and trusting that God will guide us towards ways we can continue to open our home but I want those to be God driven, not Leah driven to fill a void.

Having opportunities for others to enter “our world” made ministry feel so…well…natural and organic. We had proper seating for Malachi and we were prepared should there be a medical emergency. It just felt safe.

Now that I am re-entering the world of adult Bible studies I find myself experiencing anxieties that I have been able to avoid for the last several years. Some of those come from a sinful and fleshly place and some of them come from medical mom dilemmas, like navigating a very seizure prone Malachi into a room full of women that don’t know us.

Back in January I started doing a weekly morning Bible study through 1 Peter at a local church, and I had to laugh as we read through chapter 2 when it referenced “aliens and strangers”. I know Peter meant that in a spiritual sense in regards to this fallen world but my mind went straight to this photo:

I have always had trouble “fitting in” but when you work with teenagers you just chalk it up to an age difference. Now that I am back into the adult world those insecurities are flaring.

But back to scripture…

1 Peter 3:3-4 “Your adornment must not be merely external-braiding of the hair, and wearing gold jewelry, or putting on dresses; but let it be the hidden person of the heart, with the imperishable quality of a gentle and quiet spirit, which is precious in the sight of God.”

Gentle. Quiet.

There are a lot of things in my world I cannot control. And there are many things I just don’t have the energy to try to control. But one thing I can focus on is asking God to cultivate a more gentle and quiet spirit in me that can reflect Him to others.

I love that we can honor God in such wordless ways!

Thank you for taking the time to check in on our family. We are thankful to have such a tribe of people that care about us.

Much love,

Leah

What a busy few weeks we have had!

Levi loves school and never hesitates to get up and go. He likes the routine and structure it provides and it has turned him into a social butterfly.

Levi repeated preschool this year, a decision that we didn’t take lightly. He is such an intelligent kid! Levi has cerebral palsy and his muscles don’t always cooperate, particularly with his fine motor skills. This year we added in some extra classes and therapies to address these needs and he has been making huge gains!

I check him out of school early on Mondays to take both boys to horse therapy, one of their favorite parts of the week. Levi rides solo with the therapist helping him from the ground. Malachi rides with the therapist holding him and works on his stretches and strength building. He loves trotting the most!

Our soccer league launched two weeks ago and all four of us have been having such a fun time getting to know the players. Coach Malachi helpthe practices with a button whistle we bought for him, and Levi gets to practice with all age groups (coach’s son perks). By the end of the practice days Levi is asking to go to sleep, which is very rare haha!

Last year Levi wasn’t very interested in actually playing soccer but loved the social aspect. This season we are seeing an excitement in his little eyes.

The league is run as a ministry and most of the profits we get from concessions and registration fees ($20 for the season) go toward sending the teens that volunteer to youth camp in the summertime. This year I am “paying” (contributing towards camp fees) a teen to photograph the games and she caught this gem of a photo.

I asked Levi what he was doing and he explained that he was pulling up his sleeve to show off his muscles and said that the big kids (teenagers) do it all the time.

Stepping down from youth ministry has been a hard transition for our family. The teens were an extension of our family and opening our home to them was something we looked forward so much. Thankfully discipleship doesn’t end with a title change and those relationships are still very real and present. They have grown up alongside my boys and are a big part of their lives!

It has been invigorating getting to do small Bible lessons with the soccer kids! We are sharing the gospel piece by piece each week and they have been so attentive. This is the primary reason we do the league, and the ministry opportunity there has taken away some of the uselessness I have been feeling lately.

Tonight our little Levi was asked to be a ring bearer in the wedding of some sweet friends. He immediately got anxious and told them no, but obviously changed his mind rather quickly- overcome with excitement!

Malachi has had some ups and downs with his health over the last week, requiring oxygen for several days. The bigger he gets it seems the longer the recovery. But we were able to wean him off of the extra support yesterday.

The insurance issue continues to loom over our heads. Too many details to try to type and explain, but it has been a continued battle. I *think* we made some progress last week towards a resolution but today (the 19th) marks the deadline for a final determination.

The special needs mom community is a special one. We all “get” each other. We understand the potential chaos that each hour holds and we understand that sometimes it is the most mundane and mild thing that can set us into a tunnel of grief. Phone calls and texts often go unanswered and the grace we have for one another is such a gift, recognizing that priorities have to trump social time for mom.

But when those phone calls and texts do happen it is such a gift. The reminder that there are others traveling a similar, complicated road helps me feel less alone.

When Malachi’s Chick-Fil-a post went viral several years ago God gave me the gift of a online community of friends with medically complex children. And sometimes they write things that bring tears to my eyes as I see such a reflection of myself in their words. In a world of feeling unseen, through these moms I feel seen.

One of these moms, Kara Dedert, posted something last week that has been playing in my mind. After she and her husband counseled with an ethicist about the care of their medically fragile son the man told them “We are always called to prolong life, but not to prolong death.”

There are so many gray areas in our world. And there are an incredible amount of differing opinions on what is moral, ethical, and right.

In the medical world we are asked to make decisions that mimic the role of God. “Would you like for us to continue lifesaving care for your son?”Had we nodded no in that room 11 years ago the doctors would have allowed inevitable death for Malachi.

And that is why I am so thankful for a sovereign God.

When I look back over the last 11 years with my Malachi I never view it as me prolonging his death. And truthfully I don’t see it as me prolonging his life. I am not that powerful or equipped. Yes, we have met his needs, in the same way that any mother meets the unique needs of her child, but Malachi is here because God chooses for Him to be.

John 10:10 “The thief comes only to steal, kill, and destroy. I came that they may have life and have it abundantly.”

The Greek word “abundant” is perisson, meaning “exceedingly, very highly, beyond measure, more, superfluous, a quantity so abundant as to be considered more than what one would expect or anticipate.”

Malachi has life, and he has it abundantly. Not because of anything I have done, or prolonged, but because of the plans of God for Malachi’s life.

And in turn, I have been given an abundant life in having the honor of being Malachi’s mother.

I have been given overwhelming moments of grief that have led me to overwhelming moments of comfort from God. I have been powerless and have seen firsthand the need for God’s mighty power and trusting in Him. I have been given moments of great sadness and now more easily recognize moments of indescribable joy. I have been given the opportunity to fight against my selfish nature and practice sacrificial love every minute of every day.

Yes, Malachi has life! But I am so incredibly grateful that God has gifted Him with an abundant life, a life that points others to Him.

Much love,

Leah

Let’s start with a few snapshots from our week that are pretty self explanatory!

Our season of calm has ended and this week kicks off the go-go-go! Three years ago I received a calling from God to start a Christ-centered children’s soccer league in our small town. Our first year was complete chaos, like trying to herd cats, but was so much fun. Last year was also a refining year as we tried to find out the best balance for each age group.

The league starts up again this week and we have 99 players registered. We have the opportunity to do a Bible lesson with them during the halftime of each practice and game in our six week season, and I have been prayerfully seeking the Lord on what to share with them this year.

Truthfully, I am incredibly excited about this season. It brings back memories of my teaching days, getting to meet all the new children and trying to learn their names quickly. There is always such a buzz of excitement in the air, and the chance to share the gospel is just the cherry on top.

We also have an adult league that began after the new year that will be wrapping up tomorrow with a championship game. And on the same thread, our outdoor high school boys season is about to begin. So throughout the week we end up spending most of our evenings and Saturday mornings coaching soccer. But it is still something we enjoy doing as a family and the kids love tagging along to all of the practices and games.

Today our Malachi is 11 years old. Malachi’s birthday not only marks the celebration of the day he was born, but stands for God’s graciousness in victory over death.

Most of you have been reading for awhile, but just in case you are new…here is a 90 second video of our sweet warrior!

Malachi was born at just 24 weeks gestation due to a placental abruption. I internally bled for a few days, forming a giant blood clot that went undetected and by the time we went to the hospital we were already past emergency status.

They transferred me to a hospital with a higher level NICU and within 20 minutes of arriving Malachi’s heart stopped in my womb. We raced to the operating room and Malachi was born without a heartbeat. They started CPR and continued for 15 minutes before getting a pulse (20 minutes is the protocol limit). He was 1 pound, 12 ounces and had bilateral grade 4 brain bleeds due to his traumatic birth, and the doctors warned us that the prognosis wasn’t good.

But here we are, 11 whole years later, and I am overwhelmed with gratefulness to God for the journey we have been on. My 1 pound 12 ounce fragile son is now looking more and more like a teenager!

Malachi is an amazing boy. He has double portions of so many admirable qualities and he has taught me so much in the last 11 years. In so many ways he has become a role model to me, reflecting so many Jesus qualities.

I read a quote this week and smiled as I thought about it in context of my Malachi. “May my suffering help make Jesus famous.” -Pastor K. Moran

Malachi’s life shows proof of a Creator. You can’t look at his life and not find a God story.

I often say that we are uniquely blessed. Yes, our life is extremely challenging and looks very different than most. But we also get the opportunity to practice serving others on a hourly basis and to experience what pure, unconditional love truly looks like.

I have had a whole lot of experience with conditional love in my life. Rejection when standards aren’t met, and removal of love when it isn’t easy. But Malachi’s love is so unconditional and pure and such an example to me of grace upon grace.

This weekend we celebrated Malachi BIG TIME! On Friday night we made the drive to Atlanta to surprise him with a trip to his favorite Medieval Times castle/show. This was the one he was knighted at last year and when we pulled in and told him where we were he squealed with joy!

He even got a personalized birthday card on a scroll from the queen! His joy that night was genuinely contagious!

This morning was a rough one for Malachi, and it is highly probable that him having some special treats at Medieval Times (lemonade and some chocolate dessert) had something to do with his seizure increases today. He had 4 pretty large seizures before the end of church, wiping out his energy.

After service we went to our favorite local restaurant and when we walked in they all had birthday hats on their head. They had prepared a surprise party for Malachi, complete with Spider-Man decorations, presents for both boys from all of the staff, and so many sweet surprises.

When I saw the efforts they put into the surprise I was overcome with emotion and had to fight back tears. I thought back to those hard conversations that first week of his life, and to see the ripples he has created in this world and the amount of people he has impacted brings me to tears.

We spent the afternoon resting and trying to build Malachi’s energy back up from the hard seizure morning. Then we had a small celebration of our own with a few fun presents for him to open.

It was really difficult to assist Malachi with the whipped cream game and get a photo, but he also took one to the face and loved it. Lately I have been trying to prioritize being “present” for quality moments with Malachi instead of trying to document them.

We ended the night with Crumbl cookies and a movie rental and Malachi still has that sweet smile on his face.

The day that Malachi was born I felt my faith in God grow legs and start running. The words that I had memorized began to connect with very real moments in very real ways. The “knowledge” that I had about God began to truly be seen and known firsthand rather than secondhand.

It was the day that I realized that I am not enough. And I will never be enough. But faith is believing that HE is enough.

We can’t know the mysterious ways of God, and it would be incredibly arrogant to try to figure it out. But as I sit here tonight next to Malachi there a few verses and thoughts that keep popping into my heart.

Ephesians 2:10 For we are God’s handiwork, created in Christ Jesus to do good works that God prepared in advance for us to do.

God has not only created Malachi, but He has created Him with a purpose in mind. And I believe that God is using Malachi as His mouthpiece. “Works” don’t have to look the same from person to person and often the works that God requires of us are immeasurable.

Exodus 4:11-12 The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord? Now go; I will help you speak and will teach you what to say.”

Abilities are not a pre-requisite to do the work of the Lord. Willingness and obedience are. God knows your limitations and will display His glory and power through them. Sometimes we are called to tasks we can’t physically achieve apart from His help, and God does that for a very specific reason!

John 9:3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”

Sometimes we have to stop chasing the “why” and accept simply being a vessel, a piece of pottery for the light of Christ to rest in to be put on display. And that is exactly what my Malachi is. I see the light of God shine through Him.

Oh how beautiful are the mysterious ways of the Lord.

Thank you, God, for another year with Malachi. And thank you for the many lessons you continue to teach me through his life and testimony.

Much love,L

Leah

I had every intention of posting this update on Sunday evening per my routine, but life definitely didn’t allow me to finish the post. The meme above seemed appropriate as I definitely feel “understaffed” and unqualified most days!

Now on to the update: Truthfully this update is so boring that it has me considering whether or not I need to go to monthly updates instead of twice a month. Life has slowed down so beautifully for us and a lack of medical updates is such a sincere blessing. Something I will be praying about!

We are still seeing all of the specialists, running to and from therapies, and dealing with the never-ending phone calls and refills. But that has become so routine that it almost feels normal. I am continuing to try to establish a rhythm for our life but that is hard to do with epilepsy. Each day is unpredictably its own.

Malachi officially lost his secondary insurance coverage. We are in limbo trying to get him onto the Katie Beckett waiver Part A program through the state but we are currently without. Right before we were booted we were able to tap into some waiver funding and purchase a batch of much needed items for him, including a new bath chair.

After seeing him in the new one I couldn’t believe that we were still safely functioning in the old one. Insurance likes to deny bath chairs by saying they are “not medically necessary” and “a comfort item” so being able to use waiver funding to get the $4,500 bath chair was huge!

Malachi will be 11 in just a few weeks and with the change in age comes a change in hormones and a change in routines. He is starting to develop acne and needs showers more often, so the timing of the chair was perfect. We were able to order it and receive it within 3 weeks. Had we had to work through insurance red tape, and had we gotten the approval, it would have taken at least 4 months to get.

We have had some very cold weather here in Tennessee so the four of us have been enjoying staying in and spending time as a family. We have played all kinds of games, created science experiments, and enjoyed the extended break from school.

Last week a very sweet family member passed away and the kids and I went to Ohio for the funeral and to spend time with family.

We tried to time the drive in between snow storms and the bitter cold of Ohio was hard on Malachi. Levi, on the other hand, was surprised by the opportunity to play in legitimate snow.

The temperatures were bitterly cold and I didn’t feel like it was wise to take Malachi outside more than necessary. The sudden cold from getting out of the van to go into a building was setting off his seizures and I was afraid if his body temperature lowered too much we would struggle to get it back. Whenever we are far from our home equipment I am a little more conservative with my choices.

These moments are hard for him and hard for me. I want so badly to give him the same experiences as other children his age, but often we run into things aren’t inclusive, accessible, or in his best interest. He gets his feelings hurt and no amount of explaining helps ease that pain. My heart hurts with his when he is missing out. But Malachi did enjoy spending time with family.

When we travel with Malachi he does pretty decent for a few days, then starts to decline due to routine changes. For example, he rides in the car for longer spells than normal and it is hard to help vent his stomach to release any pressure. If that air stays inside of him he has some pretty major seizures, and his wheelchair isn’t the best seat for helping with this issue. So usually by day 3 of traveling we see an increase in seizure activity and general tolerance and this trip was no exception.

We cause quite the ruckus when we visit my grandmother in the nursing home!

We drove back to Tennessee late Monday evening and are working to settle back into our routines.

Personally speaking, I am experiencing a bit of an identity shift in life. We have experienced some pretty significant losses of our “normal”. We are trying to figure out what church looks like outside of the youth group and where we fit into that. Each week I would read my Bible with eyes to see and ears to hear things that God may want me to share with the teens that week. Now when I read I am seeing so many things I am excited about and don’t have others to share it with. I have been struggling with feeling isolated as I try to figure out how to hang around adult people successfully and build biblical Christian community.

But even though change is hard, I trust that my discomfort can lead to some great dependency opportunities for God and I.

At the start of the new year I jumped on board with the Bible Recap, a chronological study of the Bible that tackles the entire Bible in one calendar year. Each day I read a few chapters of God’s Word and there is a podcast that goes with the free Bible reading plan, but truthfully the scriptures alone can do all the talking!

I have so many amazing things that God has shown me through the first three weeks of this study! If you aren’t already reading God’s Word daily I encourage you to jump on the bandwagon with me, following the scripture reading guide.

I have been praying about which one to share with you and here is what God is laying on my heart:

Genesis 17:1 “When Abram was ninety-nine years old, the Lord appeared to him and said, ‘I am God Almighty; walk before me faithfully and be blameless.’”

I have thought about the two adjectives in this verse a whole lot.

Walk before me faithfully. Walk with steadfastness and loyalty. I would venture to say that most people have similar but not exact definitions of what walking faithfully really looks like. Faithful is going to look a little bit different for each walker, and the personal calls and convictions of God to each will be slightly different.

Be blameless. This one scares me a bit, as I know I fail often at this command. There are so many times I break God’s heart with my sinful nature and choices. So why would God call Abram to do something He knew Abram wouldn’t be able to do?

God’s desire and standard for each of us is perfection and blamelessness. In Matthew 5 Jesus says “Be perfect, therefore, as your Heavenly Father is perfect.”

But perfection just isn’t possible. Sin wages war against our soul. As one author puts it, there are sins of commission (doing things we shouldn’t do) and sins of omission (not doing things that we should). We can avoid sinful decisions and actions but that root still continually exists deep within our hearts.

God knows this, and offers His grace to His undeserving children. But He desires a relationship with each of us where we are continually reflecting Him and striving to avoid an accusation of wrongdoing.

As you read through Genesis you see evidence over and over again that Abram/Abraham did not live a blameless life. In fact, he struggled often with very poor choices, like lying about his wife. But then there are these moments of beautiful faith, like Genesis 15 where is says “Abram believed the Lord, and he credited to him as righteousness.”

Just like Abram, I am a work in progress. Too often I make concessions for my sin, even comparing it to the sins of others and quantifying it as “not that bad”. But God’s desire for me, His daughter, is a blameless life.

And because of my deep love for the Father I will happily take on that challenge. His expectation for perfection isn’t a punishment, but rather a call to a deeper relationship as we lean on Him in our inadequacies.

Please continue to pray for my boys and for us as their parents. Navigating parenting is proving to be a greater task than I imagined when I was younger! And pray peace over our hearts.

Much love, L

Leah

Christmas Day came and we thoroughly enjoyed spending it together in the comfort of our home!

Levi woke up with a head cold and was feeling off most of the day; when Levi gets sick we know it is just a matter of time before the germs hit Malachi. Sure enough by Thursday it had also hit Malachi and he tanked pretty quickly, requiring supplemental oxygen right away. We also started his respiratory regiment (nebulizer, cough assist machine, and CPT shaky vest) to try to prevent a trip to the doctor or hospital. We always run the risk of him picking up something worse on visits to the doctor.

After 12 long days, today was Malachi’s first day being able to sustain a whole day off oxygen!

Levi bounced back pretty quickly and we were able to sneak away from the house and do some fun things close by with family!

Truthfully, this Christmas break has been one of the most carefree ones we have ever had! Yes, both boys were sick but we were able to stay home and just spend time together as a family. And the simplicity was such a gift.

Having Jake home was also a huge blessing, allowing me to catch up on paperwork and phone calls with our insurance battle. Still no final resolution but we are close.

One of the programs we are trying to get as a replacement for the insurance he is losing has some pretty high qualifications to get approved. You have to be able to meet “institutional level care”, meaning that Malachi has to qualify for care that requires skilled nursing services in a hospital or residential institution. This qualification is actually really hard to get, even for a child that shares many of his diagnoses.

This program is our “Hail Mary” play, one final desperate attempt to get secondary coverage for Malachi to cover the things that his primary does not. We have had several zoom meetings, and met with a third party evaluator and we finally received a letter that he qualifies for institutional level care. Jake and I read the letter and high-fived each other, overjoyed for this small victory.

But when I finally sat down to really process it stung a little bit and didn’t feel like much of a win. We focus on what Malachi CAN do, so these last few months of focusing on all of his deficits have been mentally and emotionally challenging.

We still have several papers to complete to make it to the next step but it seems our backup plans may be fruitful.

Changing gears to share a cool story…

Last week I had an appointment with a new ENT and in our conversation the topic of Levi’s airway came up. The doctors eyes lit up and he shared that he did his residency at Vanderbilt and asked if Levi was a patient there. I told him that we transferred him to Cincinnati for an experimental procedure called the Anterior Posterior Cricoid Split (the first experimental surgery we tried on Levi). He excitedly told me that he had done several of those on children at Vanderbilt with the same condition as Levi (bilateral vocal cord paralysis).

I smiled and said “I bet it was after January 2018!” He thought about it and said “Yes, it was later that year that we started doing those!”

Back in December 2017 we were desperate for solutions for Levi’s condition that didn’t involve a trach. In our intense research we found an article about this new procedure that Cincinnati Children’s Hospital was doing for kids like Levi and talked with the surgeons there who were very excited to take on Levi’s case. At this point they had done 19 of these surgeries.

Our secondary insurance said that they would only cover the transport and surgery if it wasn’t one available anywhere in the state of Tennessee. So the phone calls began to prove that no one in the state was offering this surgical option. We had to call all of the big hospitals in the state.

Our Chattanooga pulmonologist called Vanderbilt and asked about the procedure. The Vanderbilt doctor was intrigued and read the article we had found. He replied “No, but we are going to doing them now. Send him over.”

I panicked. I wanted Levi to have the procedure done, but I didn’t want him to be the first one at a hospital who had never done it. But without the Vanderbilt surgeon explicitly saying “No we do not offer this” we would not be able to get the transport to Cincinnati and the subsequent care covered. We asked the Chattanooga doctor if he could call back again and the Vanderbilt surgeon finally begrudgingly agreed saying “I will tell you no this time, but if you call tomorrow with another patient then I will tell you that yes, we do offer this procedure.”

So fast forward to my appointment with this ENT. To hear him say that they had done several of these on children with Levi’s condition starting in 2018 made my heart leap for joy. Yes, they very likely could have found this article on their own and started offering them for a reason other than us. But being able to be a part of the process towards OPTIONS in Tennessee for children other than a trach is absolutely amazing. I think about the hope that experimental procedure offered us during some dark days. Being able to share that hope with other parents is special.

I don’t even know where to begin with a devotional thought tonight. The amount of God moments from the last 14 days is completely overwhelming, and to share those stories with you just doesn’t feel appropriate as they involve so many others outside of our family. We have seen and experienced God’s provision, protection, guidance, and love. We have watched Him make a feast with 5 loaves and 2 fishes. And we have seen Him be glorified within incredible suffering around us.

This week I am treasuring those moments in my heart, and thankful for a God who allows me to witness His goodness.

And finally, here is a video of Malachi from this morning; it was his first oxygen free morning in a very long time and his sweet giggles brought me joy; I hope it does the same for you.

Much love,

Leah