Jake and I have been talking about how much fun this summer has been, particularly our ability to relax and just be present as a family. We have had all sorts of adventures, including a beautiful fireworks show the night before the big day.

The 4th of July rolled around and we had the idea to go to a late night movie as a family, assuming most families would be watching the fireworks, giving us the theater to ourselves. Movies are always a little more complicated with special needs kids as many things can trigger seizures. I also have to narrate the movie to Malachi, whispering in his ear, and when there is a full room I am always self conscious about disrupting the movie for others. There were a handful of other families in the theater when we arrived and when the lights came on at the end of the movie we realized that it was full of other special needs families that we knew from various legs of our journey! I guess we all had the exact same idea and plan!

We all had a good laugh then we headed toward home, stopping for milkshakes on the way. We made it about a mile from home and we were hit by a car trying to pass us (on a double yellow) as we turned left- he said he thought our left turn signal was a signal for him to pass us. He smashed into the driver’s side of our wheelchair van and in addition to body damage it broke the arm holding the driver’s side tire on.

Thankfully we were all okay and no one had any injuries. Levi was an emotional mess but we are praising God for His protection. The car is not drivable so we are working on solutions while we wait for the repair to happen. This weekend we were finally able to get the car into a body shop to start the repairs process. And we have a rental handicap van starting this week.

Later that night I was looking over Malachi and found a protruding piece on his side. This was NOT from the wreck and was something I had spotted right before we left for the movie that night as Jake was putting him in his chair. He didn’t seem bothered or in pain so I decided to wait until we got home that evening to investigate.

It rests right on his incision and felt very much like a piece of hardware so my brain immediately went to the worst possible outcome- another loose screw or rod. This spot popped up seemingly out of nowhere overnight and was not there the day before. And Malachi tremors when we touch it. I sent these photos to the on call orthopedic surgeon and he suggested we come in immediately through the emergency room.

Unfortunately we were without a way to get him there. We could rig him up in Jake’s pickup truck but it isn’t the best positioning for him for the 3 hour drive there. I asked the doc if they would do anything over the weekend if we did bring him in and they explained they would likely wait until Monday so we asked if we could also wait until then and just be cautious over the weekend. They agreed and we started the process of finding a car to transport him and his chair in.

A friend came to the rescue, allowing us to borrow her larger SUV. It was a tight fit and required disassembling the chair a bit but we were able to rig it up for Malachi to transport safely and off the to the hospital we went first thing Monday morning- loaded down with enough supplies for what I assumed would be another hospital stay.

We made it to the hospital by lunchtime and checked his x-rays, which confirmed that all hardware was still in place! It is a portion of his floating rib that seems to have suddenly shifted. There isn’t anything we can do with that piece aside from remove it, which we obviously aren’t interesting in doing unless absolutely necessary. So we are just being extra cautious with that side and watching for skin breakdown or pressure sores. It definitely feels freaky though!

And I was absolutely excited to be able to drive home that same day!!

We went from a family movie and milkshakes to a car wreck and emergency hospital visit in just a few short hours. And it emotionally drained me. Malachi had a great attitude, excited about spending alone time in the hospital with mom. Levi watched me pack the hospital bags and just cried and cried, preparing his heart for another long spell apart.

It is wild how fast things can change with medically complex families. We are always a few short steps away from hard.

But this one fizzled quickly and we are back to life, as normal as it can without a handicap van. We have spent most of the week at home and we are ready to be able to be mobile again and prepared for emergencies.

Levi has been working on swim lessons and we have been spending a lot of time in the water outside of lesson time to reinforce the things he is learning. His breathing is hindering him slightly with how long he can stay under but he is improving. And Malachi is also loving all the extra swim time, especially the nighttime swims.

Summertime is always a tricky thing. The more we spend time around one another the more jealousy tends to brew. I get jealous of Jake’s sleep filled nights. Levi gets jealous that Malachi gets to “stay up so late”. And Malachi gets jealous very easily in all things that Levi gets to do. Earlier this week Levi and I were playing a game of memory and Malachi signed that he was upset. He wanted to be playing but I couldn’t think of a way to play the game with him, as he can’t see the cards or the layout.

Malachi realizing he is being left out and signing his sadness/disappointment to us is absolutely one of the hardest things for me to navigate. I can feel my heart break with his and knowing that I am doing something that contributes to him feeling left out is a guilt ridden ride for sure. We started to search for something similar he could play too and found this sound memory game on Amazon.

He could hear the pieces, each pair with a unique sound inside. But how would we identify each one where he could sign the match without seeing them?

We developed a system where we named each piece by row and place- so 1a, 1b, 1c, 1d, 2a, 2b, etc. And then we gave it a whirl. He would choose a bell and we would identify the label. Then we would ask him “Is the match in row 1? (No) Row 2? (Yes) 2a? 2b? 2c? (Yes)” By game three he was beating all of us, legitimately and fairly. I have been so impressed by his awesome ability to remember each sound so accurately and match them up. And he was SO PROUD to show off his intelligence.

Parenting Malachi has so many wonderful surprises within it. And requires SO MUCH creativity and investigation.

Levi is now determined to beat Malachi at the game, and Malachi is loving the drama. Game on.

Summer has been a wonderful opportunity to reset in a lot of ways. Having Jake home has given me a chance to re-establish many of my routines, including time in God’s Word. The opportunity to sit down and focus has felt like drinking ice water on a hot day.

This week as I watched Levi’s intense reaction to the car accident, followed by his reaction to me packing for the hospital I was reminded again that he is carrying a heavier load than most 7 year olds. And then I look at Malachi and see the physical, emotional, and mental load that he is dealing with on a daily basis and I feel a pang in my heart- wishing that life were easier for both of my kids.

I have a walk with the Lord, and have had time to hide the truths of God’s Word in my heart. I have had the opportunity to grapple with my faith, to ask the why, and learned to accept the no, recognizing His mysterious ways and plans. But my boys are so young- in age but also in a walk with God.

I can’t take away Malachi’s pain. I can’t take away Levi’s PTSD or heal his airway. I can’t fix life for my boys and make it easier to manage or less stressful. But I can teach them through God’s Word and example which direction to look when things get overwhelming. I can share my own experiences with them, casting my anxiety on Him (1 Peter 5:7) and “taking every thought captive (2 Corinthians 10:5). I can remind them that when we are weak that He is strong a hat that God’s grace is sufficient (2 Corinthians 12:10). I can teach them to use the Word of God as their greatest weapon against the many attacks of the enemy.

Parenting is a form of refinement that can’t easily be replicated. And sometimes that refinement can hurt, but it yields such beautiful changes. And what an important role we have, serving as an ambassador of Christ to our own children.

This week I am feeling challenged to re-address the areas of my motherhood in which I have become lazy, particularly in helping them develop theology and understand the gospel. And then watch as the Spirit of God does a mighty work in each of them.

Please be in prayer for some very specific needs for our family. The amount of paperwork we are currently dealing with for just medical things is overwhelming, not to mention school program paperwork and now car insurance battles. It feels like a full time job trying to keep up with everything while still maintaining med regiments and normal medical schedules. Please help us pray for favor and speediness in getting our van back and the claims settled.

Thank you for checking in on our family!

Sincerely,

Leah

This summer has been such a special one, filled with lots of family time and fun memories. The older the boys get the more creative we can be with our outings, and their reactions to even the simplest things is a blessing.

We took the boys to the drive-in theater last week for the first time to watch How to Train Your Dragon, the live action version. Malachi was VERY into the movie and it was a little too much for Levi. At one point he got scared by the dragon and shouted at the screen: “All things work together for good for those who love God!” He has us laughing often at all of his antics.

The evenings have been cool enough for some family walks and almost every night is family game night! Malachi LOVES playing games. His new favorite is Uno Attack, which shoots cards out at you. He and Levi have been teaming up trying to beat mom and dad and hearing Levi lean over and whisper the cards to Malachi to keep him included is so sweet to watch.

We tackled an incredible amount of appointments over the last two weeks, but thankfully that clears up our calendar for a bit and gives us several appointment free days to look forward to.

The boys are both underweight and their GI doc isn’t pleased. We have plans set to help add some calories through their g-tube feeds by increasing their volume. Levi gets his g-tube feeds overnight so we attempted to increase by 3 more ounces and he spent all night projectile vomiting. We are going to slowly increase the feeds to make sure he is tolerating it better, but every night as I go to sleep I wonder if we are going to have a repeat incident and wake up to a mess!

Malachi still isn’t sleeping well so we are introducing a new medication to help with muscle spasms to see if it will allow him to be more comfortable when laying flat. We also put a recliner in his bedroom so when he wakes up, usually about 2 hours after he goes to bed, we transfer him to the recliner with support pillows and he gets a few more hours of sleep in the sitting position. This weekend he has been staying up until 4:30/5am, unable to get comfortable. We reach full dose of the new medication tonight so we will see if it is a viable solution. We have to come up with something! If it weren’t summertime and I didn’t have Jake here to help with Levi in the early morning I wouldn’t be functioning very well.

When we were in the hospital for Malachi’s fusions Chick-Fil-a reached out and asked if they could set up a surprise to cheer him up. We didn’t know what they had in mind, and had to delay until he was back to himself, but last week we finally made it over to our local Chick-Fil-a for his surprise! They had a table set up for Malachi and made him the VIP of the day. Corporate sent a giant box of presents for the whole family and they made Malachi an honorary employee with his very own name tag. He was overwhelmed at the actual event but is very proud and has been smiling about it ever since.

They also let Malachi order anything he wanted off of the menu and of course he ordered a chocolate milkshake with extra whipped cream!

What a sweet and kind gesture it was to our family. One of the biggest priorities in our life is making memories- recapping all the fun moments and stories is one of his favorite things to do. “Remember that one time…” This is a very special one to add to that book.

Last weekend I headed a few hours away for a special needs mom retreat in middle Tennessee. A few days before the retreat Jake ended up getting sick, and if you know my crew you know that sickness, even a common cold, knocks Malachi down for weeks. As the days ticked by I was just sure that the sickness would spread and I wouldn’t be able to attend the retreat.

I truly believe God bubble wrapped the rest of us and by Friday night I was in the car and headed west. As I drove over I started to feel self conscious about being solo for this event but I really really needed the time to reconnect with the Lord.

The conference was so special. Being in a room surrounded by other moms in similar circumstances and trials was amazing. But worshipping alongside of them was an emotional experience for me. Here we were, each of us carrying a heavy calling, but still choosing to sing praises to God. The testimonies in that room would blow you away. But there was such a comradery in our journey through hard things with unknown outcomes. So many of us in that room have walked through the shadow of death many times.

And Jake did phenomenal holding down the fort back home. There are so many hidden tasks that we have to be responsible for….medication administration (Levi gets 5 doses a day and Malachi gets 16 a day), feeding pumps, diaper changes (quite a process right now for Malachi), breathing treatments, and so much more in addition to normal, every day life and tasks on very little sleep. It’s easy to get overwhelmed but he did excellent.

I left the conference feeling rejuvenated to continue in the calling I have been given. And a freshened perspective about God’s presence even in the darkest places of our walk.

Romans 15:13 “Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit.”

He is the God of hope and our joy and peace can only come from Him. I can’t imagine this life without confident hope in the Lord, a true gift from the Holy Spirit.

Thank you for checking in on our family, and continuing prayers over our boys.

Sincerely,

Leah

Another surgery checked off the list for our little Levi.

As always, we signed off as all interventions as needed and Levi went back to the operating room for them to take a look at his vocal cords, lungs, and overall airway. This procedure is called a microlaryngoscopy and bronchoscopy with lavage and involves two surgeon teams.

His vocal cords are still paralyzed (statistically this is a lifelong condition). We were incredibly close to being able to transition to a once every two years or as needed surgery but there was some inflammation in his airway that caused a bit of extra cautiousness. The inflammation causes his airway to narrow and if it continues it can cause breathing issues that will need to addressed quickly. His surgeons are pleased with the rate his airway is growing with him though!

There is also an increase in his secretions in the lungs and the pulmonologist was convinced that this year’s cultures would show bacterial growth after 24-48 hours but thankfully it came back only mildly elevated. Overall it was a good report and we are happy to have another surgery behind us.

Levi had his typical pre-surgery angst so we filled the days leading up to surgery with some fun adventures.

A quick trip to King’s Island with my littlest brother to ride some of the roller coasters.

A family trip to the Air Force Museum to check out the airplanes.

Malachi’s roller coaster days are over with his recent spinal fusion so he spent some time fishing with dad.

We know that roller coasters are one of his favorite things so we took him to Dave and Busters just to ride the coaster simulator there. Not the same as the real deal but still made him smile.

On surgery day Levi opened his pre-surgery unit distraction gifts….a pair of skating shoes and a new watch. It immediately turned his frown upside down and covered him until the silly juice kicked in.

It feels really nice to have most of our surgeries checked off for the summer. We are still watching and waiting to schedule Malachi’s shunt surgery and we have pushed his hip surgeries off as far out as we can. He is just not ready for another surgery right now and we are working hard to put some weight back on him.

The boys have a whole stack of appointments this week and I am scheduled to go out of town this weekend for a special needs mom conference! Chick-fil-a also reached out and asked if they could do something special for Malachi to lift his spirits this week, so we will go tomorrow and see what they have up their sleeve.

Our days have been packed with play dates, swim parties with cousins, VBS, soccer, and movie nights. Tonight we finished the 1960s version of Swiss Family Robinson and I thought Malachi was going to come out of his chair he was so excited.

In between surgery, traveling, and appointments Jake and I celebrated our 17th wedding anniversary!

Spiritually speaking, even though I am through the worst of our recent battles I still can’t seem to come out of the valley they existed in. I am really good at distracting myself from the pain and resentment but it still is brewing within me. I spot it when I lay eyes on Malachi’s many new scars all over his small framed body, a reminder of his prolonged suffering. I feel it creep in when we talk with medical providers that are on autopilot, unwilling to have a conversation about my very precious children and my concerns for them.

There are also odd little glimmers of blessings tucked into the hard. Things that not many people would be able to relate with but bring a relief to my heart in the moment. Like Levi waking up from anesthesia and us packing up to go home. Usually that PACU conversation is focused on deciding whether or not Malachi needs to go straight to the ICU. Or the relaxed stance I found myself in waiting in the small room to speak with the surgeons after Levi’s surgery…a vast comparison to the heavy conversations that usually need to be had in those rooms with Malachi.

Our world is such a blend of hard things over and over and over again. Sometimes when harder things come it bops some of the items that we once viewed as difficult over into the easy column.

But as I sit in this valley, trying so hard to find good things to rest my tired eyes on, I am reminded that God is still very much present and patient in my current valley.

“For thus says the high and exalted One who lives forever, whose name is Holy, ‘I dwell on a high and holy place, and also with the contrite and lowly of spirit in order to revive the spirit of the lowly and to revive the heart of the contrite.’” Isaiah 57:15

He doesn’t sit in the valley alongside of us in solidarity, but rather he comes to revive our heart and spirit in a way that only He can. And there is such comfort in knowing that I don’t have to climb out of this valley in my own strength- as I am simply not strong enough right now to do so. But God, in His patience, kindness, and love, is here to revive me in His timing.

I don’t often enjoy my time in the valley, but I always appreciate the humility it grows in me and the renewed need for a Savior that it produces.

Thank you for checking in on our family and for allowing me to have safe place to share our walk and our hearts.

Much love,

Leah

Summer is here and off to a great start!

Levi finished up his kindergarten year, a blend of hybrid learning as we continue to try to find the best ways to help him learn.

We started some new summer curriculum this week with him to see what type of gains we can make over the next few months.

Malachi finished the 6th grade, also doing a hybrid model of homeschooling and inclusion classes at a local private school!

We celebrated the end of the school year with some pool parties and time with the cousins.

This week Levi will head north to Cincinnati for his airway surgery. We won’t know until he is in recovery what work had to be done by the ENT surgeon team (trimmings, dilation, nothing at all) and the pulmonology team will also be taking a look at his lung to check for aspiration.

Levi is no stranger to this process but it doesn’t mean that it is any easier for him to accept. He is dreading the day. We always try to plan some fun things around the surgery day and pick out some surgery day gifts for him to open in the pre-op room while we wait. The procedure itself often invokes a response from his body and can cause a fever for the day or so after and it takes him about a day to recover from all the fluids from surgery. So we will stick around Ohio for an extra day to let him get back to baseline before making the 6 hour drive back.

Thankfully we have family in the Cincinnati area that will help keep him distracted leading up to surgery day.

Malachi had an appointment with neurosurgery last week to talk about his shunt repair. It is a bit complicated to try to explain in words so some photos might do a better job.

When he was stretched in traction for his spine surgery they discovered that his shunt tubing had dislodged from the machine itself. Here is a photo from March that shows the gap in tubing. We have imaging that shows this happened before October 2024 but no one caught it then.

When we followed up on April 1 (10 days after the above photo) it looked like this…

The tubing was gapped enough that it was thought that the machine could still possibly be diverting spinal fluid from his brain like it is supposed to. But now that it is overlapping the machine there is really no possible way for it to drain anything.

The most obvious solution is to do a surgery where the old tubing is removed and new tubing is re-attached to the shunt machine. But this comes with risks of infection and shouldn’t be done unless absolutely necessary.

The neurosurgeon is trying to decide if the shunt is still necessary for his brain to divert the spinal fluid. Statistically a child like Malachi is a lifelong shunt kid but his imaging from March to April, and then new imaging from April to May, seemed relatively unchanged as far as ventricle sizes.

When Malachi was born he had bilateral grade 4 brain bleeds and the blood clogged the ventricles causing hydrocephalus. This is the image of a typical brain that I pulled off of Google.

And here is Malachi’s imaging from last week.

The dark spaces within the brain are his ventricles, and they are larger due to the significant brain damage/atrophy that happened at birth. If those ventricle sizes change it will mean an emergency surgery, and the only way to really evaluate them is a CT scan or an MRI. So right now the plan is to watch for clinical signs of a problem (lethargy, vomiting, increased seizures) and repeat imaging in 3 months to determine if surgery is necessary right away or we can afford to wait a bit longer.

So looong story short, we will continue to watch and wait.

We did get to see one of our buddies at a therapy appointment this week! These boys met at a neurosurgery appointment back in 2015 and always smile big when they get to see each other, even if it is briefly on appointment days!

We have been working so hard to put some weight back on Malachi and get him back to a healthy baseline. With his frame being as slim as it currently is we can visibly see the screw heads along his spine under his skin and that has to mean it is painful for him to have his back resting on things. There are also some new issues that have started since surgery with his urination and bowels so we will need to start the process of figuring out solutions for those.

We did get word that his wheelchair should be ready by the end of July! That’s exciting news!

Our visit with the neurosurgeon happened to be the same day Malachi was discharged from the NICU in 2013 after 112 long days.

As he and I walked those halls I told him stories about his time in the hospital and he listened with some wide-eyed amusement. Jake and I were so young and overwhelmed that day as we drove him home for the first time. It feels like a different life. And I was able to smile thinking back on those hard days, proving to my heart that some healing has taken place.

I have a really good memory and sometimes that causes issues. But as I made my way through the hospital I flashed back to so many significant moments with both of my boys….

The exact spot I was standing when my phone rang with Dr. Rutter (Levi’s Cincinnati airway surgeon) on the line, willing to talk to me about experimental procedures.

The chair I sat in as I waited on Malachi to make it out of brain surgery; and the corner the neurosurgeon turned, coming to tell me that everything went as planned.

The hallway we wheeled Levi’s incubator down to head to MRI, later finding out the devastating results that he too had significant brain damage.

The hallway that Jake and I walked hundreds of time together as we traveled back and forth from the Ronald McDonald House. We used to play a game where one of us would close our eyes and see how close to could get to the end of the hallway without running into the door using only our memory.

The bench I sat on to call Jake and let him know that Malachi was diagnosed with one of the worst seizure types a child can have.

The hallway we ran down when we got the call that Malachi was about to undergo an emergency, life threatening surgery. The desperation in my heart aching as we ran in the middle of the night.

There are too many memories in that place to even count. Hundreds of days living in that building and trying to desperately grasp to any normalcy we could pretend to create. It is a place of great heartache yet also a place of great miracles.

Cincinnati Children’s carries these same memories, seared into my mind and heart. As we head there this week I will fight those same battles with my thoughts, trying to sort out the jumble of emotions and focus on the good ones that sneak in.

Psalm 109:21-22 “But You, O God, the Lord, deal kindly with me for Your name’s sake; Because your lovingkindness is good, deliver me; For I am afflicted and needy, and my heart is wounded within me.”

I read this verse this week before bed one evening and it became my prayer to the Lord.

There are so many hard moments in our past, present, and future. The medical complexities continue to grow. The surgery counts continue to rise. The heartache continues to compound and the memories take on deep roots.

But the lovingkindess of God is good. And his faithfulness towards a broken vessel like me continues to humble me. I am such a tired and weary servant right now, but still He is ever-present.

While I often wish God would create a smoother path for our family, or bubble wrap my boys through the hard parts, I am thankful that I get to witness the faithfulness of God so consistently.

Blessings are hidden among the thorns.

Please pray for our family this week as we tackle another airway surgery for Levi and for wisdom on how to handle Malachi’s brain surgery.

Sincerely,

Leah

Our countdown to summertime has dwindled to single digits and the Carrolls are ready!

We have been drowning in our to-do list since our Vanderbilt stay, overwhelmed by trying to resume some normalcy but alllllll the medical things. We are also still struggling to get to quality sleep so our energy and time management for each 24 hours has been a challenge, taking naps when possible to hit at least 5 hours of sleep in a 24-hour period.

But this past week we resoluted to knock out some much needed projects that we had been putting off.

Jake and Levi worked on getting the therapy pool ready, emptying the water, cleaning, and refilling it for the season.

As a reward for their hard work the boys had their first nighttime swim for the year!

Levi got to try out his new snorkel, which he definitely didn’t understand the concept of haha. Watching him swim always blesses me, knowing that had he been trached it would have been a much more complicated adventure.

And Malachi was all smiles and ready to swim. He didn’t last as long as he normally does in his neck ring; I assume he new back positioning will take some getting used to. But he was such a happy boy.

And I knocked out a big project, setting up a new medical supply cabinet! I can’t even describe the joy this brought me. We were swimming in all the medical things, and having them organized and managed is amazing. Our incontinence supplies and formulas are in different storage cabinets in other spaces. And each month we get another shipment to refill each of our supplies…it is easy to feel buried.

Malachi and I headed back to Nashville for his low vision appointment and were so disappointed to find out that the referral sent over was for a simple annual eye exam, not ow vision clinic as promised. I was so discouraged to have driven 6 hours round trip for an eye exam that could have been done 20 minutes from the house. And the letdown of believing we were going to get some answers on how to unlock more communication opportunities for Malachi was hard to manage.

After Malachi’s surgery we have had some trouble finding comfortable and supportive seating for Malachi. His old seats allowed a curve in his back, which his new back will not permit. So his lumbar hovers above the actual seat and puts a lot of pressure on his upper back and pelvis. We are still experimenting with some different options but right now recliners seem to be the winner with supportive devices on either side.

He is also preferring to sleep in the recliner, but I am not thrilled at the tightness we are seeing from him being positioned in a long sit for that long. He is back at physical therapy for a few sessions a week right now and he is making some great progress back to a bit more mobility.

Our little Levi is growing and eating like a wild man! We have been trying to slow down his nighttime g-tube feeds but he has lost so much weight during this testing process that he is back to being on the pump at night for added calories.

I am very curious what the Cincinnati team will have to say about his airway. Each year they evaluate if his airway is growing at the same rate that he is, intervening if it is not. He has been struggling with his breathing lately, but also dealing with some pretty major allergies which can restrict his breathing.

We will head north in just two weeks! And the anxiety in Levi is already brewing. He keeps asking hard questions, like “Why do I have to have surgeries and other kids don’t?” Finding answers that make sense to a 7 year old is a delicate process.

I read this quote last week and really appreciated it.

“Faith is not a formula for able-bodied perfection. It’s a posture of trust. Trust that God’s strength is made perfect in our weakness (2 Corinthians 12:9). Trust that God uses all of us- not just the ones who fit the mold.”

This season has revealed a lack of trust in my heart. My prayers changed several years ago for Malachi, praying that God uses Malachi and that we find peace throughout His workings. God is absolutely able to heal Malachi. But when I make that my only prayer for him I tend to convince myself that God isn’t answering my prayers. The continual silence of unanswered prayers can mess with you.

So I changed the prayers. And I changed my heart posture towards what I saw as “results”. God doesn’t owe us evidence of His workings. And sometimes looking so hard for the answered prayers can make us our own God, taking pride in knowing that we “made” that happen through our prayers to Him.

2 Corinthians 12:9 “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

I am working on my posture of trust. The soreness of this last trial still aches deep within my bones, reminding me that I have let that muscle go unworked for awhile.

Thank you for continually cheering on our family and encouraging us in so many ways.

Sincerely,

Leah

The dark clouds are finally starting to part above our heads. Malachi is completely off of narcotics and we are seeing glimpses of the carefree boy he was prior to his surgeries. He has also been off of oxygen for a few days and his tolerance for the world is getting stronger each day.

He is back to his opinionated self and communicating with his eyes. We actually go to back to Nashville this week to meet with the low vision clinic to see if there are any communication devices that may work for him with his very limited vision. We were able to connect with the low vision team while inpatient when they came to evaluate his eyes.

Side note interesting fact…when the brain ventricles are enlarged with fluid it causes pressure to build on the optic nerve that can be seen through eye exams. Malachi’s optic nerves were too deteriorated to come to any conclusions in the hospital about ventricle sizes but at least we were able to connect with an outpatient group through the exam.

Speaking of brain ventricles, we are scheduled to see the surgeon again in a few weeks and establish the date for his shunt surgery. Levi’s surgery is scheduled for the first week in June so we are aiming to schedule it shortly after that and spread out the medical procedures a bit. We are seeing an increase in Malachi’s seizures but that is likely due to the narcotics wean and him feeling more pain, but we are eager to rule out his shunt malfunction as a suspect.

We went back to Nashville last week to follow up with the ortho team and the plastic surgeon. Ortho took X-rays and said they are unchanged from the last images (praise the Lord for no loose screws/rods) and plastic officially discharged him. We don’t have to go back to ortho again for several months. Malachi was still a little reserved on appointment day, his body not appreciating the hours in the car. Levi enjoyed tagging along, too anxious to be left at home with dad for this one.

After his ortho clearance Malachi and I started a transition into a bedroom for sleeping. I know this is a hard thing for non-medical families to understand, but moving to a bedroom means also moving all equipment, charger cords, and positioning devices every night and then moving them back each morning. It is definitely a process, but I was hoping that it would help him get better quality sleep. He is still hit and miss, sometimes staying up all night and sometimes sleeping well. But it was the first time I was back in a bed since late February so my body was much happier!

Malachi asked to go to school last week for the Spirit Week rally and seeing him perk up around his friends was so sweet. And Levi enjoyed “Zoom Meeting” theme day, with business attire on top and comfy clothes on bottom.

In addition to Vanderbilt appointments last week we also had a slew of them locally to get to for both boys. It feels like we have spent hours and hours in waiting rooms, traffic, therapies, and appointment rooms lately. Levi had an eye doctor appointment which brings about a lot of anxiety and emotion in him. He has been saving up for a snorkel (which I am confident he won’t be able to do but who am I to interfere with that dream), so I promised him if he stayed calm and did what they asked him to do I would order it for him. He was thrilled when it came in the mail this weekend.

That led to me asking Malachi if he has something in mind that he would like for being so brave during all of his appointments and testing. And he very quickly signed yes. It took some time but we figured out the item he has his sights set on…a new battery powered squirt gun. He was very proud when we finally got to the right answer.

I have been very impressed lately of Malachi’s communication and how tolerant he is as we try to work towards his answer. Two specific stories come to mind from the last few weeks.

The first just happened after church on Sunday. I asked him who he was the most excited to see at church and went through the questions…was it a male, a female, a child, an older person, etc. We went through them all until we found the person- and it was someone I would have never suspected as they don’t get to interact often. But as I thought back to their interaction I remembered that she leaned down and spoke directly to Malachi just like he was a 12 year old boy. So I asked him, “Is it because she spoke to you?” And he quickly signed yes.

I had a mix of joy that he communicated so well, and a twinge of sadness that those interactions are rare for him. Can you imagine a world in which someone simply speaking TO you instead of ABOUT you made was the highlight of your day?? Malachi is such an amazing boy and loves others SO big. The amount of patience and grace he has humbles me daily.

The second communication story was late one night after Jake and Levi went to bed and we were deciding which big kid movie he wanted to watch that night. I gave him two options I knew he would be intrigued by (Batman or Jurassic Park) and he signed no to both. I asked him if he had a specific movie in mind and he signed yes. So I started the questions to try to isolate which one it was, which can sometimes be a long and arduous process. But I finally figured out that he wanted to watch the non-animated version of Beauty and the Beast. I really like that movie, and his eyes were bright with excitement. I asked him, “Malachi, did you just pick one because you know it is one of my favorites?” And he gave me the sweetest little side grin and signed yes.

I am so blessed by this boy.

Our high school boys soccer season comes to an end this week and we will have a few months of having our evenings back for a bit. Our family is past due for a reset and we are looking forward to family game nights, cooking together, and our routine walks again.

We have had some glimpses of summer weather lately, even enjoying a picnic dinner and some fresh air. Having family meals together and seeing both boys carefree and smiling has been so healing to my heart and helped me take deep breaths again.

Jake is working on getting the therapy pool ready for the warm seasons and we are all so excited to see how Malachi does in the water with his new posture. I also think it will be such a good stretch for his body! We are very curious if his feet will now touch the bottom of the pool with his added height.

Georgie came back over for a quick play date this week and Malachi was in a much better head space for his chaos haha! And just to add some explanation for any new readers, I work part time for an exotic animal farm so we get the chance to play with some pretty amazing animals.

Today we headed out to the farm to meet all the new babies they have added since our hospitalization. Malachi was very excited, which is an emotion we hadn’t seen in a while. It was such a precious time, getting to bottle feed baby camels, kangaroos, and snuggle sloths. Both boys really enjoyed their time there, but Malachi particularly was in his element. He was finally old enough (and postured safely enough) to hold Dash, the baby sloth and got to snuggle Zoey, the one year old.

I recognize that I have been a little long winded in today’s post so I will try to wrap things up a bit.

Last month I had someone local reach out and ask if I would be willing to share a testimony at their church. To be completely honest, I hesitated- recognizing that the wounds from these last few months are still very raw and unhealed. I have been frustrated and dissatisfied. I have been angry that my prayers continue to go unanswered. I have been so sad that we haven’t gotten our miracles.

But the conviction for my negative attitude has been pricking at my heart, as I recognize the distance my cynicism has created in my relationship with the Lord. So after some sincere confessions, repentance, and conversations with God I decided to go forward with sharing.

I never get tired of sharing what God has done in our lives. And preparing to speak was a much needed kick towards me really processing our recent trial.

I allowed myself to grieve our loss of normal…again. To grieve the many unmet expectations we continue to face. To re-visit the hardest moments, memories, and conversations. I poured out the tears that had been bottled deep within me. And then I took a deep breath and I surrendered those wounds to the Lord.

Surrendering doesn’t always mean erasing, although sometimes the Lord is gracious to do so. But it means that instead of viewing our scars from this last fight as a source of mourning I will commit to see them as a reminder of another time the Lord carried us through the fire.

We will choose to consider it all joy.

I heard a phrase a few weeks ago, “yesterday’s manna”. I am still processing what that means but the more I think about those words the more I find spiritual relevance in them.

“The Lord said to Moses, ‘I have heard the grumbling of the Israelites. Tell them at twilight you will eat meat, and in the morning you will be filled with bread. Then you will know that I am the Lord your God’.” -Exodus 16:11-12

The Bible tells us that they were instructed to only gather enough manna for that day and not to keep any extra. Some of the Israelites challenged this rule, saving some, but in the morning it was full of maggots and not edible. It was yesterday’s manna and it was designed to carry them through that specific day.

The Israelites were required to practice their faith…to trust that each day the Lord would provide exactly what they needed to be sustained. And he faithfully provided for the entire 40 years of wandering until they reached the Promised Land.

There is a miracle in yesterday’s manna, there is a miracle in today’s manna, and there is a miracle in tomorrow’s manna. God’s sustenance each day is enough! Sometimes we get so focused on yesterday’s manna that we forget to look around and see the things that God has lavishly provided for us today.

I may have botched the original meaning of that phrase, but processing it has been intriguing!

Please continue prayers for our family as we inch closer towards the next surgery in four weeks. And thank you for taking the time to check in on our family.

Much love,

Leah

It’s been two long weeks since I posted the last entry! I was really hoping to be able to share that we were back into normalcy, but Malachi is requiring a little more time to get regulated again.

We have still been struggling to get smiles out of him and going to some pretty big efforts to see that grin! We even borrowed a friend’s monkey to see if that would cheer him up haha! Not even a side smile for that attempt. But Jake and I got some good laughs.

I took Malachi over to his school during pickup time last week and hearing all his buddies say hi as they walked by brought a smile to his face. He even chuckled for the first time since before his February surgery, silently shaking his shoulders while smiling from ear to ear.

Malachi’s pain is relatively well managed right now but he is still having some trouble with stamina off of oxygen. We will make it 1-2 days off oxygen and then he gets too tired to maintain his breathing quality and he goes back on oxygen for a few days.

I think his overall weakness is the biggest hurdle we have to overcome. We restarted his physical therapy last week and I am really hoping that will help him have more confidence in his new body. His color has improved tremendously and we are working hard to add some weight on. We have been spending time outside in the sunshine and fresh air, which has been good for us all.

Sleep is the other elusive factor, with Malachi staying up for 48 hours and then sleeping an entire day. He did this a few times in the hospital so I am not quite sure what to point to. Today he slept from 10a-10p. We tried our best to wake him up to help him regulate a bit and he just wasn’t having it. We are still set up in the living room until we can get him towards a more consistent and normal schedule.

We still celebrated with Levi, hiding some eggs and talking through the significance of Easter with him. We love using Resurrection Eggs with him still!

Last weekend I had the chance to attend a Ladies Conference in South Carolina! This is huge for our family, and the first time I can think of that Jake has stayed home with both boys and I have gone out of state. Malachi’s care is still very much hands on, and with him not sleeping it adds a level of complexity to his care. But Jake was up for the challenge, recognizing my need for a brain break! I am thankful for him “seeing” me.

It was difficult to shut off my brain for a few days, but the freedom I had mentally was such a needed gift.

The Lord and I are working through some things right now. The discomfort these last few months has brought has revealed a lot of sin and baggage in my life that I am needlessly carrying. I am so incredibly tired and weary right now physically and spiritually.

I am in an Ephesians 6:16 season: “Above all, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.”

I don’t have a lot of energy to fight, but I am relying heavily on the shield of faith to block the attacks of the enemy. Right now those attacks are all mental ones- remembering the wounding words of others, feeling disposable and unseen, being asked to do more than I can feasibly do.

Hebrews 12:11-12 “All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness. Therefore strengthen the hands that are weak and the knees that are feeble.”

I have to keep having faith that this challenging season is yielding peaceful fruit of righteousness. That God is taking all of my meager efforts and allowing my weak muscles to grow through this process of sanctification.

Still a work in progress and a continual conversation with the Lord. But isn’t that how our walk with the Lord should always be?

Thank you for the continued prayers and support for our family over the last few months. We are slowly finding our footing and hoping each day is better than the last. I am hoping our next entry will yield some more answered prayers for sleep and pain relief for Malachi!

Sincerely,

Leah

Whew what a week it has been. We have been soaking in the family time together and taking turns grabbing naps when we can! It feels so great to be in the same space together…to tuck Levi in, to eat dinner as a family, to play games, to watch movies. It feels good to walk barefoot around the house and step outside for a breath of fresh air. It feels good to sing at the top of my lungs and laugh at our silly dogs.

Malachi struggled tremendously with pain for the first few days, even with the prescribed scheduled meds. his heart rate stayed higher than it had been in the hospital and frankly, I was a little worried that we had brought him home too soon. We have been doing telemedicine appointments over the computer and were able to make some firm plans on how to help manage his pain better.

On Tuesday morning we met with neurosurgery to discuss his broken shunt tubing. We were running on 2.5 hours of sleep and Malachi was signing that he was in pain the entire ride to the hospital in Chattanooga. When we got there they wanted to get imaging done, particularly x-rays and a CT, but we had JUST had those done at Vanderbilt when the shunt was on the radar. But the hospital was unable to access those images so he had to do it all over again.

Poor Malachi was already in pain, and manipulating him on the tables to get more imaging made it worse. I ended up in tears with him as I watched him grimace with every movement. Getting more imaging defies the logic side of things for me. We are all in agreement the tubing is broken. I don’t know why we need more imaging to re-affirm what we already know. They said they wanted baseline imaging to compare future ones to; I just wish we could have done that at a time when he was a little more stable.

Levi was thrilled to ride along with us and be included. He even helped administer Motrin and Tylenol in Malachi’s g-tube while we were in a traffic jam and I couldn’t get to him. Levi administers his own seizure meds through his g-tube each day so he is a pro! I told him that maybe he will be a nurse or a doctor someday and he got pretty tickled at that thought.

Malachi is not strong enough the handle another surgery right now so we are planning to meet again with them in May and establish a surgery date. Levi’s surgery in Cincinnati is early June so we likely will wait until after that one.

We were able to finally get a smile out of Malachi and it was such a beautiful one! It just took me asking if he wanted to go to dad’s soccer game.

We went back to Vanderbilt on Friday and both JP drains were removed, making handling Malachi so much easier. Today we have been working hard to wean him from oxygen and are making progress. If he can handle being off oxygen overnight I will also remove his pulse oximeter, making him completely wire free!

With the drains out, we were cleared for a shower. It was his first legit one since February and oh boy was it needed. We took our time, even trimming his hair a bit until we can get it formally cut.

This is Malachi in an adult recliner. It is truly remarkable how tall he is. He has outgrown most of his equipment so we are in the process of trying to find replacements and keep him comfortable and varied.

He is incredibly weak and it will take him time to rebuild his muscles. But the small efforts are there. He has started slowly trying to sign with his arms again, but is mostly still relying on his eyes to communicate.

Plastic surgery was very happy with how his incision is healing. We will go back to see them for the final follow up on the same day we see orthopedics at the end of the month. After those appointments we are hoping to slow down the Nashville trips. With traffic lately it has been a 7-8 hour round trip to make it there and back!

Alright, now it is time to dump some medical momma thoughts. More for me than for you…it helps me process them to type them out.

I am in a season where I am having to try really really hard to be happy. I can list things I am thankful for. I can choose to look for joyful moments and find them. I can point to the ways God is working. But the natural instinct of happiness seems so foreign and far away.

We are re-entering our old world, but I don’t feel like the same person I was when I left. And that scares me a bit. The things that used to matter to me suddenly feel so insignificant and the things that used to encourage me fall on deaf ears. This hospitalization ignited a helplessness in me that I haven’t felt in quite awhile.

“Lord, if it’s you,”, Peter replied, “tell me to come to you on the water.”

“Come,” he said.

Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”

Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Sometimes we need the scary sensation of drowning to remind us of our need for a Savior.

I am not sure where I am at right now in the Matthew 13 story…if I am just noticing the wind, sinking in the water, or calling out to the Lord in desperation…

But regardless I am at a point where I recognize that my abilities are not enough when weighed against the power of God. The humility that helplessness brings can sting our egos but lead us into calling on the name of the Lord.

I think tonight I am a drowning Peter. But the beautiful thing is that I am never out of the reach of the steady hand of my Savior.

Please continue to keep our entire family in your prayers as we desperately search for a bit of normalcy in our week.

Sincerely,

Leah

Malachi is home! The reunion was sweeter than I imaged it would be. Levi has been very tender with Malachi, examining his wounds and showing such empathy.

Quick flashback to 7 years ago when we brought Levi home from his 5 months in the ICU. Sweet, sweet brothers.

Malachi has a very rough first 48 hours home, with his heart rate staying higher than our last few days in the hospital. Jake and I have gone into medical mode, charting all meds, drains, diapers, feeds, and water. We made a clipboard sheet that charts out every hour of the day. Today’s schedule has us doing something hands on for him 18 hours of the day, including 30 medication doses, setting alarms to stay on top of pain meds all through the night. It’s a lot to keep track of on limited sleep.

We are trying everything to keep him comfortable but he is still pretty miserable. Still no smiles. And believe me, we are trying hard!

Even seeing his pups again didn’t perk him up.

Before we left the hospital the plastic surgery team took off his incision vac so we were able to come home with just two drains. He is still requiring oxygen but we aren’t surprised by that. I got to peek at his incision when they removed the dressing and it is a pretty alarmingly massive incision. But it is healing nicely.

We were also able to get a new seat back put on his wheelchair. The side by side comparison of the old seat back and the new one is laughable! We couldn’t place the order for the new wheelchair until we were discharged so I will try to tackle that next week. And then the process takes 4ish months.

Levi and I went on a very needed breakfast date Friday morning and it was such a special time with him. He was so excited that he picked out his outfit the night before and made sure to style his hair the day of.

We talked as we drove, listing all the hard parts about the last 5 weeks. And then listing all the good parts, the hidden pieces, that we could focus on. Like him getting to spend special time with his dad and getting to ride the school bus with the high school soccer team (Jake is the head coach) to the away games. We talked about how God works ALL things together for our good.

Levi has changed a lot in the last few weeks, physically and in so many other ways. I missed him losing his 2nd front tooth. He is taller. And his little brain is so much fun.

Yesterday I laid down for a nap and he decided to join me. As we were drifting off to sleep he quietly said “Hey mom. Do you know about the French and Indian War? THAT was a really rough time. Good night mom.”

I missed him so much!

Last night we had the final kindergarten soccer game (a makeup game) and it was so nice being able to see those kids again.

We don’t have a concept of a new normal yet, and I suspect we will need a few weeks to acclimate to life outside of the hospital again. Levi is on spring break next week and not having a reason to leave the house is a blessing. We will have an appointment next Friday with plastic surgery to have the drains removed, and then another one at the end of April for x-rays with the orthopedics team.

We have washed every item before it comes into the house, and the items that can’t go into the washer have been bagged and put in the deep freezer for a few days to eliminate any living things that may have come home with us. Please continue those prayers!

And Jake and I just had to laugh at this one….but I took some clothes down to our laundry room right after we got home from the hospital and there was water pouring out of our basement ceiling from a surprise plumbing issue. The timing is actually pretty laughable. All is well now thanks to some amazingly helpful friends and Roto-Rooter.

Tonight my Facebook Time Hop reminded me of a post I wrote 3 years ago after we received some hard news about Malachi’s lungs. As I read it today it again reflected my heart so I thought I would share it with you here.

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As I let my mind wander I couldn’t help but process that the rest of Malachi’s life will continue to be full of these procedures, waits, and bad news. Malachi’s body will only continue to decline without a miracle from God.

The amount of potential suffering that lies in wait for my son takes my breath away.

I found myself pouring my heart out to God and praying over Malachi’s death, and begging God that Malachi’s entrance into heaven would not be preceded by suffering. I love Malachi with all of my heart, and I treasure every minute, hour, and day I get to spend with him. But my mind wanders often to the potential ”lasts”.

I know I share this verse often, but this week its words soothe my heart.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:16-18

Those initial words, ”Do not lose heart”. I have been evaluating what that process looks and feels like, and I have realized that this is a temptation often in my life, and especially on surgery days. It is allowing discouragement to take my eyes off of God and giving them the opportunity (and excuse) to focus on current reality.

When I keep reading that verse I can’t help but think about Malachi’s frail, scar covered body that continues to fail him over and over again. The medical community has created such amazing technology to preserve life, but it also allows a firsthand look at the ”wasting away” that this verse refers to. As Malachi ages and his medical conditions progress these words pop off the page at me. And it is easy to allow my focus to rest on the doom of those words and stop there. But we have to keep reading.

”Yet inwardly we are being renewed day by day.”

So what does that process look like? It means that our bodies are designed to fail us. Malachi’s body will fail, my body will fail, and your body will fail. No one is exempt from this process. The words of this verse remind me that we are daily being renewed, and sustained, by God because He has more work for us to do on earth.

God will continue to renew Malachi day by day because He has more God honoring work for Malachi to accomplish. And when I fix my eyes on the unseen I remember that even the suffering that we may encounter, or our “light and momentary troubles” are being used by God in ways we cannot see.

I don’t know what lies ahead for Malachi. But I do know that regardless of the potential suffering leading up to it, the day that Malachi runs into the arms of Jesus will be the best day of his life. And that hope that I have in Christ keeps me choosing joy in spite of the hard days.

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We are still very much in the thick of this round and can use your prayers to be able to function in a high needs environment on limited sleep. Please pray for Malachi’s pain management, that we will find a system that works for his body and that we will begin to see his personality come back to us.

Thank you for the many, many ways you all have supported our family through this hospitalization. And thank you for always celebrating the little things with us.

Sincerely,

Leah

This weekend was focused on healing, pain management, and learning how to take care of Malachi’s new body. Malachi had several episodes of breathing issues over the weekend, earning us a spot in the PICU until this afternoon. We are now back to “the floor” and in our 5th room for the month.

For those of you who have sent mail, we are getting it still even with the many changes. It just takes longer for them to find us. I wouldn’t recommend sending any more mail at this point as we are desperately hoping to go home by next weekend.

The ICU can be a scary place, but honestly it is my comfort place. The care ratio there is usually 1 nurse for 2 patients as opposed to the floor’s 1:4. I slept better there than I have all month, feeling secure that there were always eyes on my son. It isn’t that the nurses there are “better”, but the monitoring opportunity is better. His seizures increased in the ICU and he had some scary desaturations that we couldn’t get under control, even with 6 liters of of oxygen AND blow by. He definitely needed the higher level of care. And having a very present teammate to help me with his post op issues brought me so much peace.

It was a much needed reset for me, mentally and physically.

The wheelchair company came out and re-fitted Malachi’s wheelchair until we can get his new one ordered. It is genuinely shocking how much he has grown from this surgery. Even the little things, like his g-tube now being several inches higher, has thrown me off my game. He has such a long torso now, it truly looks like a different body.

I have a few photos of Malachi to share but he just hasn’t been himself and I wouldn’t want my post-op self posted on the internet so I am trying to be a thoughtful mother and post ones that were taken today after his nice head washing yesterday.

Malachi’s bloodwork triggered the alarms for a sepsis warning this afternoon so we will be monitoring his bloodwork closely over the next few hours to see if we are dealing with an infection issue. I am really hoping for a good report this evening after labs are drawn. We can’t handle any more hiccups or surprises.

We did travel down for x-rays Friday and the before and after transformation is pretty impressive.

Malachi is still in a lot of pain and definitely not anywhere near his baseline. He is able to tolerate the pain slightly better, only requiring heavy medications a few times a day and managing on Motrin and Tylenol the rest of the time. He was able to get his catheter out, his art line out, and several of his ICU leads. He was also weaned off of oxygen today, so one less tube there. He still has an incision vac (which we will come home with) and two drains coming out of the base of his back (which we will likely still come home with).

I am also having to re-learn how to hold him. Before he was very floppy so we supported him in a unique way. Now that he is rigid it changes where I can safely hold him and even the minor things like diaper changes are a thinking process.

He is starting to develop two pressure sores where his bony hips are pressing against the mattress. We REALLY need to watch these and prevent them from becoming true wounds so he is re-positioned every two hours. Complicating things even more is that plastic surgery doesn’t want Malachi laying on his incision so we are doing a lot of side-lying. And the bottom half of one leg is very much crooked now, which seems to be a new issue and likely due to the fixation in his pelvis. I will be asking them about this in the morning rounds!

He has been very sleepy and I don’t blame him. His body has been through so much. We wanted him to rest so we made the decision for Jake and Levi to stay home for this weekend and hopefully travel up later this week when he is feeling more like himself.

We are starting to think through the best way to care for Malachi when we get home and we have settled on turning the living room into a makeshift hospital room at least until we can get him drain and tube free. Jake is on it, preparing the space for him. It is going to feel so good to be back home! And to be together. We were able to use some of the funds people so generously gifted us to stockpile all the medical things we will need to keep Malachi comfortable and healing at home. Thank you so much for removing that hesitation from us and making it easy to prepare for the next leg of this journey.

Prayer needs right now are pretty easy for me to rattle off…

Pain management, equipment stability, no sepsis or any other complications, no pressure sores.

And I have a big one that is stressing me out more than it should…but please pray that we come home bug free. We found another creepy crawly (not sure that it was a bed bug but pest management said it could be a young one) in our 3rd room and their solution was to put a gown protocol on the door to protect the staff. I am horrified at the persistent issue and reactions here. I understand hospitals are frequented by lots of walks of life, and no one chooses to bring bed bugs in, but oh how much stress that can add to families like ours when we leave with a post-op child. They offered to treat our items again but that didn’t happen as we had surgery the next day. The items were bagged up and are now in my car and I am terrified that we will bring something home with us. I never laid on or sat on that couch and I have kept all my items as far away from the beds as possible. But my imagination is running wild and introducing a whole new stress.

And please continue to pray for our weariness as a family unit. We all miss each other desperately. We all crave normalcy again, and simply being under the same roof.

Regardless of when we leave we will have to be back multiple times in the next two weeks for follow ups and drain/vac removals. That’s a lot of ask for Malachi’s body, driving 3 hours each way on a light traffic day right after surgery. While we are eager to be home, we also want to be wise about minimizing our post op traveling, even if that means sticking around here a bit longer than we would like.

Thank you for checking in on our boy. He is such a warrior, sometimes it takes my breath away. And thank you for praying for him. Sometimes I don’t even have the words to speak to the Lord…it is an overwhelming prayer for a medical mom. I find so much peace in this verse.

Romans 8:26-27 “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.”

This is a wordless groans season for me, and I am incredibly thankful for the Holy Spirit, and for friends interceding on Malachi’s behalf.

Sincerely,

Leah