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