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