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