As I sit down to write this post I find myself not really knowing what day or time it is….which is an accurate reflection of our world right now!

Here are some fun photos from the boy’s Christmas concert at their school. Malachi sang with the middle school/high school choir; I told him if he sang I would buy him a chocolate milkshake. And boy did he earn that shake! He was so excited and sang his heart out.

Levi did amazing as well, even performing several songs with the handbell choir. He was a ball of excitement and nervousness all day leading up to the concert. He rocked it!

Christmas creeps up each year and we always hold our breath, knowing that cold and flu are brewing around the community and people are out and about more often than normal. We wash hands, we take vitamins, and we avoid the germs as much as possible. But oftentimes that just isn’t enough with compromised immune systems.

Over the last two weeks we have passed around a cold that affected each of us differently. For Jake and I it was just 48 hours of sinus pressure and we were back to normal.

For Levi, when his airway swells he vomits often. It is just such a tight space back in his throat. So in addition to the regular sickness symptoms we also battle dehydration from all the vomiting. I am not able to run his nighttime g-tube feeds because he vomits more frequently when lying down. He is left hungry, cranky, and feeling bad.

Malachi has bronchiectasis, so bacteria gets trapped in his lungs and things turn bad relatively quickly. He actually takes a preventative antibiotic three days a week year round to try to keep his lung bacteria at bay. He started running a fever and thankfully we were able to snag a telemedicine appointment with his pulmonologist on Christmas Eve and start a new round of antibiotics. He had just finished a 7 day course for a UTI (found during his recent procedure) that was also supposed to cover the lungs as well. So the next antibiotic was prescribed for 10 days and is a “bazooka” for knocking out infections. Unfortunately that level of medicine comes with other side effects that keep us close to home and on our toes.

Malachi almost immediately required 3 liters of oxygen; 4 liters is our hospital marker so starting off that close to the max made me anxious. We have all the things at the house to run a standard hospital room so we went into sickness mode, running breathing treatments of albuterol and 7% saline every 4 hours. We also ran his CPT vest with each treatment and suctioned like crazy people to try to manage his secretions. It was such a blessing to have Jake home and have extra hands for the tasks and extra brain power to keep track of med schedules and routines.

Today was his first day off of oxygen and is getting stronger by the day. And he has been really, really happy this week. He wakes up smiling and goes to bed smiling. He has enjoyed all of the family time and having everyone at home all day every day.

We have filled the time with family game nights, movies, new books, and lots and lots of needed naps.

On Christmas the boys enjoyed opening their gifts. We still stick pretty close to the 4 gifts: 1 thing you want, 1 thing you need, 1 thing you wear, 1 thing you read. We also let them each pick out 1 big thing to get each other. This year Levi bought Malachi a switch adapted Nerf machine gun that Malachi can activate 100% by himself. And Malachi bought Levi a small go-cart style toy.

Tomorrow Malachi and I will head to Vanderbilt to meet with his spinal surgeon followed by his hips/feet surgeon. Jake will stay home with Levi as they have some local appointments to get to. Then on Friday I will head to the eye doctor with Levi to run some tests on his cortical nerve to see if we can measure the atrophy.

There are certain specialists I dread more than others. For some reason the eye doctor has always been a hard one for me, dealing with issues that he wasn’t born with but he acquired due to oxygen deprivation. It hits me different knowing that this could have been prevented. But Levi will mirror my emotions so I am working on being positive and enthusiastic haha!

I find my emotions a bit wavering about tomorrow’s Vanderbilt trip. I don’t think we will find any surprises with his spine, and I don’t think we will have any conversations we don’t see coming. But I am pretty sure his hips are ready for surgical intervention, which was are told by other parents is a more challenging recovery than the spine. It is really hard for me to wrap my head around that. There is such a hard balance of temporarily diminishing quality of life with the hopes it will create a longer quality of life down the road.

The love and admiration that burns inside of me for Malachi is indescribable. As he gets older the more in awe I am of his resiliency and heart. We talked this week about his hips and whether or not they hurt, and he signed that they do sometimes hurt, particularly at night. I sleep in a bed with Malachi right now and try to reposition his hips every few hours to try to alleviate any pain. But the pain still wakes him up at night.

Total side note here, but Jake and I had each other laughing this evening talking about nighttime Malachi. He doesn’t always have seizures while sleeping, but every one and then he will have a BIG one. When he has these he throws his arm over and “hooks” me around the face or neck and is unbelievably strong. I literally can’t get him loose. Imagine being completely asleep and then having an arm wrap around your neck very suddenly and squeeze tight enough to pull you towards him. Every time it happens I have to remind my brain that I am NOT being attacked by a stranger and stay calm until his 20-30 second seizure is complete.

Jake took a nap with Malachi this week and he did something similar to him, punching him ferociously in the eye socket during a seizure. It is terrifying in the moment yet a little bit laughable after the fact as your brain processes what just happened. He sure keeps us on our toes!

These last two weeks have been challenging, but they have also been beautiful. There were so many times I was overcome with the joy of the Lord, looking at our chaos and seeing such beautiful things growing within it. Watching Levi cultivate a servant’s heart as he naturally steps up to help Malachi. Seeing Malachi crack a smile through his discomfort and pain when he opened up a present we so desperately hoped would bring him joy.

And then there is Jake and I, and the gift of our friendship. There is so much isolation in our world. So many things prevent us from being able to commit to friendships and “show up” for others. But God knew the calling; He created and designed our relationship for the things He called us to.

As I reflect back on 2025 it has been a year of change for our family. We have re-framed life a bit and in the process lost several friendships, which has been very hard on all of us. In my wounded state I find myself fiercely protective of who I allow into our lives on that deeper level again; watching Malachi process rejection from people he loves has been devastating and I want to protect him from that hurt. I am sure there is a healthy balance but I haven’t quite found it and am still seeking the Lord on that one.

I don’t quite know why I felt led to share that this evening on here. But maybe some of you are also struggling with similar wounds and need to hear another sister-in-Christ acknowledge the wounding that the body of Christ can often do to one another. It is not of God, and does not mirror His heart for His people.

Lamentations 3:21-23 “Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”

The faithfulness and love of God is not seasonal. His compassion for us is not something we are expected to earn. It is who He is.

And in our world full of unknowns and not yet, that hope in Christ continues to fuel me and remind me that there is more to this life than what I can easily see.

I am very, very tired and Malachi is having seizures so I need to wrap this up for the evening. But thank you for checking in on my family.

Sincerely,

Leah

We left off the last entry with Malachi’s cluster seizures and a trip to the Emergency Room. Just as quickly as they came on, they disappeared leaving us scratching our heads yet again.

We met with his epileptologist and we are working on some medication changes to help prevent these episodes; Malachi has been handling the med changes pretty well. We have also modified his emergency seizure plan to intervene after 3 minutes of consistent seizing, and carry “rescue” meds to administer.

Speaking of epilepsy, we are creeping up on the 4 year mark for the night Levi was diagnosed. I remember leaving the ER that night with him and taking him to church a few hours later for him to be Joseph in the nativity play. We live in such a weird world, where reality happens but we bookmark it and put our grief to the side to enjoy special moments. Thankfully his epilepsy has always been easier to manage than Malachi’s and his original seizure med that he takes twice a day is still working.

We re-entered hospital land on Friday for Malachi’s outpatient procedure. He went under general anesthesia for Botox injections in the sphincter muscle of his bladder. It takes 5 days to see if it was effective, but we are seeing small signs of progress.

Malachi handled surgery day like the superhero that he is, keeping a positive attitude and even smiling and signing to the nursing staff as they wheeled him to the operating room.

I had some wavering emotions surgery day as they vastly overbooked the operating room. We checked in at 12:30 and they didn’t take him back until nearly 6:00 (his OR time was 2:45). Poor Malachi wasn’t allowed to have food past 7:30am and was starving by the time we made it home that evening around 9:30pm. I take these moments very personally, always wondering if he is moved to the back-burner due to his disabilities.

We watched some new movies about dragons, took a quick nap, and listened to praise and worship as we waited. Hospital time is such sweet bonding for Malachi and I, as time stands still and we lean into the hard.

If the Botox works like we hope, we will have to repeat this procedure every 3 months indefinitely to allow his bladder to void. The surgeon said “it looks like a snow globe in there” with he amount of debris collecting in his bladder from insufficient voiding.

This is a doozy of a month, with nearly 20 medical appointments between the four of us. Not to mention all the social events on the calendar the holiday brings!

Malachi is absolutely loving his Christmas tree. I love seeing that sweet smile. This season carries a lot of hard moments buried deep within my soul. Each joyful moment feels like an ointment to my wounds.

There is one specific Christmas song line that has captivated my heart as a medical mom. It comes from “O Holy Night”.

A thrill of hope the weary world rejoices.

In a world full of exhaustion, suffering, and brokenness…a world full of such true weariness…the birth of Christ is the reminder that God’s plans are so much bigger than what we see.

There is a thrill of hope inside of me that rejoices when I think about the birth of Christ. The fulfillment of a plan that God perfectly authored. And that birth led to such great sacrifice. God truly sent us a Savior.

“You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will someone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates His own love for us in this: While we were still sinners, Christ died for us.”

“But where sin increased, grace increased all the more, so that, just as sin reigned in death, so also grace might reign through righteousness to bring eternal life through Jesus Christ our Lord.”

(Taken from Romans 5, which talks so much about hope and the peace that it brings)

I am a weary mom, looking heavenward with a thrill of hope. And seeing the plan that God authored unfold for Christ reminds me of His omniscience (all-knowing) nature, crafting plans that perfectly fit the callings that He creates.

Please be in prayer for endurance for our family this month as we process several hard appointments and even more difficult memories.

Blessings,

Leah

I am writing this entry from the ER as we wait to speak with Malachi’s neurology team. His cluster seizures came back with a vengeance Saturday night and increased in frequency and severity yesterday. He easily had over 100 yesterday alone, each lasting 10-30 seconds. The “what if” mental game began and I thought it would be best to get him in for a CT to make sure his brain ventricles had not changed with his non-functioning shunt issue. The fastest way to get this done without prior authorization requirements from insurance is to go to the ER.

For all you medical nerds, here are some comparison images from August and today. As you can see there isn’t much change in the ventricles (the black spaces within the brain).

The radiologist also agrees that they are the same size as the last scan, so praise God for no brain surgery! But we still don’t have an answer for the cluster seizures and no way to slow them down without heavily sedating Malachi. Blood work looks great and no signs of sickness.

We are expecting to go home soon as there isn’t anything further the inpatient setting can do for Malachi. I hate that we have to enter a germ filled space to get him checked out, and I prayed fervently as we walked in that angels would surround Malachi as we entered those doors.

We will meet with his epileptologist later this week to talk through medication changes but until then there really isn’t anything we can do to slow them down. His seizures are a symptom of brain damage, and can be triggered by a number fo things…hormones, pain, weather change, moon cycles…so many possible triggers. We have a emergency seizure management protocol that we start if the seizure lasts longer than 5 minutes but with these clusters they only last 20-30 seconds with a small break in between.

Going backwards in time a bit…

We had a wonderful Thanksgiving and even went north for a few days to visit family in Ohio. Malachi worked SO hard on the ride to get his arm up and around Levi as he slept. Here was so proud of himself and so were we. I showed it to Levi later and he teared up.

Levi told me last week that he wants to have 12 kids when he is older and he wants one to be in a wheelchair just like Malachi.

The boys got to play with their cousins and create all sorts of memories. We rented a whimsical house on a farm for the whole crew and it was the house little kids dreams are made of, with secret staircases and hidden doors. Levi says his favorite thing was playing hide and seek, and to be honest I wanted to play too haha! Malachi was an excellent first floor “seeker” as well.

Malachi especially loved seeing his Grammy!

We stayed in Ohio a few days longer than the rest of the family and found an awesomely accessible rental house for two nights, ramps and all! And Levi loved getting to sleep on a trundle bed.

We came home with happy hearts and a bag full of hand me downs, which is always a real treat for Levi.

We don’t do a lot of traditions in our little family of four as our life is a bit to unpredictable and it sets us all up for disappointment when we can’t do things like we’ve always done. But one thing that we have tried to prioritize is picking out a Christmas tree. It is one of Malachi’s all time favorite things to do, and there is an amazing tree farm right down the road that is always so kind to our family.

Malachi wasn’t feeling 100% as we shopped for a tree this year but he still did his best to give us his opinions and help us choose a perfectly beautiful tree for the living room. Levi also enjoyed the process, even getting the chance to carry the saw back up the hill now that he is a big ol’ 8 year old.

We spent some quality time with the monkeys this week, which always leads to some fun photos.

And we all got the chance to attend the wedding of two sweet friends!

It has somehow become a very busy season for our family, but the variety has been a treat.

Trips to the ER always have great potential to trigger some PTSD memories for me…actually the triggers and emotions begin prior to even leaving the house as I prep our bags for a potential stay. Between both kids we have been in well over a dozen of those ER rooms; re-entering those spaces floods me with memories. Almost all of our ER experiences end with an admission, surgery, or ICU stay.

This morning I felt the emotions deep within my belly, almost as if my body was trying to convince me to change my plans. The mental battle that takes place is something I can’t really put into words. I am attacked with worries that I am over-reacting. And then come the fears that I am under-reacting and it could lead to horrible outcomes that I could have prevented.

I don’t talk about this often, but the battle of my mind is truly a daily struggle. Even as we shopped for a tree this year, and Malachi was not himself, I had the thoughts of “What if this is the last tree Malachi will ever get to pick out? Will I ever be able to come back to this place again? How will Levi handle life without his brother and the life alterations that a loss like that would inevitably create?”

If I am not cautious and careful I can allow the joy of the moment to be strangled by the fear of the unknown.

This morning as I spoke with doctors I felt such a wave of discouragement on Malachi’s behalf. He endures so much, and has no voice to speak his emotions and pain. I feel helpless as his mother, but that pales in comparison to the helplessness he must feel. This weekend as I have looking in his eyes, so weary from seizures, this verse has been playing over and over again in my head.

2 Corinthians 4:16 “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.”

This verse applies to every single one of us, regardless of diagnosis, disability, or stage of life. Each of us were made to be pilgrims in this world, traveling towards home.

Reading this verse helps me replace the sadness of the journey with the reminder of the hope of the final destination.

Fixing our eyes on the unseen is a decision we have to make. Our human nature will always fix our eyes on the seen. But faith asks us to divert that gaze and focus on the unseen.

Please be in prayer for Malachi, that he can overcome these seizure clusters and regulate. And please continue to pray for wisdom for Jake and I, that we will be sensitive to the directions from the Lord regarding his care.

Sincerely,

Leah