This has been a very busy two weeks for us with a lot of go-go-go. But some fun announcements for you all too!

As predicted, the GI doc wasn’t too pleased with Levi’s lack of weight gain. He eats all day long and is still getting at least 700 calories overnight with g-rube feeds but he can’t keep the weight on. Children with bilateral vocal cord paralysis burn extra calories with the increased work of breathing and with his recent sickness Levi just can’t seem to keep up calorically.

Side note- this was one of the biggest justifications the Cincinnati NICU doctors used for traching Levi. So we knew this would be a continual concern if his cords didn’t wake up by age 5. But with the help of the g-tube we can continue to supplement with high calorie formula when needed through life’s changes.

Malachi is continuing to gain weight and is up to 43 pounds! The doctor was pleased with his progress. He is just all around looking and acting older these days and it is fun to witness. He and I get some good quality time when Levi is at school each morning and it has been really great for our relationship.

Levi also went to the seizure doctor and required another blood draw to check his sodium levels. He handled this one better than most with the help of Child Life, but anything medical is still a traumatizing experience for him. Malachi giggled non-stop in the blood lab, especially when his friend the phlebotomist assumed we were there for him and had to be corrected. Such a brother thing to do.

The boys went to the dentist which is always a bit difficult for both boys. Levi tries to negotiate the entire time he is there, this time declaring that he only wanted to see women dentists, thinking this time he could avoid the final exam from the dentist after the cleaning. But there was a woman dentist working that day so his plan backfired. He is still easily bribed with egg salad and a water so we have that working for us.

Malachi was handling it like a boss until the hygienist started calling him Levi: “Great job Levi, open your mouth Levi.” He was so offended that he clamped down and developed an attitude for the rest of the visit. He even rolled his eyes at her a few times.

Levi is still loving school and is taking an interest in learning. He comes home talking about letters, numbers, and what his friends ate for lunch. He has been working on writing his letters, and his fine motor deficits are definitely there. This week he will be evaluated for occupational and physical therapy services while at school, which I am confident he will qualify for, and that will become a part of his weekly routine at school. We will also continue the services he is receiving outside of the school day, like his physical therapy on horseback.

He came home this week with a new Bible verse memorized and I am so proud of him and his strong voice! You can hear his stridor when he inhales, a clear sign that his cords are still paralyzed, but his ability to speak will never cease to amaze me. Here is a video:

Malachi has some big news to report! He has been chosen to receive a wish from the Make-A-Wish Foundation! MAW is a foundation that works to fulfill wishes for critically ill children in the United States.

We got word that we were referred a few weeks ago and started trying to come up with some ideas for his wish as we waited to find out if he would be approved. Thanks to the movie “Aladdin” Malachi had a framework already for what a wish was and he was so excited that he got to choose something to wish for.

And with his strong opinions just coming up with a wish has been quite the comical journey. Jake and I spent weeks tossing out ideas and before long he had a list of about ten he hadn’t immediately said no to. Here are some of the things that made the final list:

-The classic trip to Disney/Sea World

-a handicap accessible treehouse in the backyard

-putting walls around his pool deck so he could swim year round

-a travel trailer so we could go on trips and have all of his equipment and gear on hand

-Superhero for a day

-a Disney cruise

But then we did it…we came up with the ultimate wish! And Malachi immediately signed YES YES YES.

I started trying to think of all of Malachi’s favorite things and I kept focusing on his love for animals. His all time favorite animal at the zoo is the jaguar so I started googling and found a place in Myrtle Beach, SC that allows you to hold baby tigers/jaguars!

The more I looked into this place the more it screamed “MALACHI”! It is a 50 acre wildlife preserve that does safari and animal encounters. (From their website: All proceeds support the Rare Species Fund (RSF), which provides infrastructure, training, and support to international conservation programs worldwide. To date, RSF has donated more than $1 million and countless hours of professional expertise, engagement, and hands-on training to grassroots conservation program worldwide. These programs ultimately help to conserve tigers, lions, elephants, gorillas, chimpanzees, and many more species in their natural habitats.)

Guests interact with an elephant named bubbles, chimpanzees, baby tigers, monkeys, wolves, and more. We are calling his wish “Jungle Boy/Tarzan for the Day” and Malachi’s excitement cannot be contained anytime we talk about it.

We met with MAW staff and pitched the idea and they don’t think they will have any issues making this wish happen for Malachi. We are waiting on final approvals from his doctors and from the foundation then we will start finalizing plans for the trip this summer! We will keep you all in the loop as we continue to move through the process.

Watching Malachi deal with such a big decision reminds me of how amazing he really is. We have seen the mind of a typical 10 year old boy as we have thought about all of the possibilities, and seeing such excitement and anticipation has brought tears to my eyes. Waiting for his wish to come to fruition is going to be awfully hard for him (and all of us)! But what a fun thing for us to build excitement for over the next few months!

Jake and I went on our first date in February 2003, so this month marks 20 years of us being together. What a journey it has been!

Even when we were dating we could see the hand of God on our relationship; 20 years later I am even more convinced in the providence of God. A very summarized definition of the providence of God is “God’s providence is God’s caring provision for His people as He guides them in their journey of faith through life, accomplishing His purpose in them.”

We have experienced so much together over the last 20 years and have grown in so many unbelievable ways.

Jeremiah 17:7-8 But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.

I can look back over the last two decades and recognize moments when our shallow roots were exposed and had to dig a little bit deeper into the soil. I can recognize times when we feared the heat and we worried about the drought….and felt the effects of those things because we lacked confidence in Him.

And I have watched God sustain our family time and time again, reminding us that apart from him we can do nothing (John 15).

We have been given many blessings in this life together, but one of the greatest blessings is the need for complete and total reliance on God. We have been given a life we simply cannot do on our own. And getting to watch the faithfulness and sovereignty of God has been such a gift.

I know I use this scripture often but this week as I reflected on life I couldn’t help but be drawn to it again, seeing so much of our life in the words.

Isaiah 61 To bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

Today I want to remind you that God is able. He is able to turn your ashes into something beautiful. He is able to turn your mourning to dancing. And the hard journey of the roots digging into the soil can result in such a glorious story that points others to God.

This week we studied the story of Ruth and Boaz with the teens. If you need a devotion this week I encourage you to read through the book of Ruth from start to finish and find all the ways that ashes were turned to a crown of beauty, and how the dark parts of Naomi’s life (Ruth’s mother in law) and the dark parts of Rahab’s the prostitute’s life (Boaz’s mother) led them on a faith journey that lasted for generations…including the lineage of Christ.

May we always be open to the task of growing deeper roots, knowing we are a planting of the Lord for His splendor.

Much love,

Leah

Malachi is 10 years old!

After weeks of anticipation his birthday party day arrived and his excitement was beyond anything I have ever seen from him. He picked the theme, the guest list, the music, the dessert, and the venue. He started out a bit overwhelmed but after a few rounds on the rink he started to settle in. We were able to rent out the whole rink so the lights could be left on and wheelchairs and walkers could be on the skating floor.

He chose cotton candy instead of cake and he voted it as one of his favorite things that night.

But his absolute favorite part was when everyone sang Happy Birthday to him. We gave everyone a noisemaker and in between each line we blew our different instruments and Malachi just beamed with joy. Here is a video for you:

Jake and I had moment where we looked out at the crowd and couldn’t help but smile at the variety of people there. We had family, nurses, respiratory therapists, teachers, friends we met through the blog, friends we met in the hospital, other extra special buddies, church friends, youth teens, and so many other people come out to show love to our son.

And here is a video of Malachi zooming around with his favorite respiratory therapist/best bud that helped take care of Malachi in the NICU:

It was a day that we would have never been able to imagine ten years ago. It blessed Malachi and it also blessed us as his parents to be able to celebrate ten amazing years.

Malachi’s party hyped him up so much that he slept until lunchtime the next day…something he has literally never done in his life. He partied hard! When he woke up we celebrated Malachi’s actual birthday as a family and took him to Target to spend some of his birthday gift cards from friends. He chose some new books, “Hatchet” and “Holes”. His tastes are changing and he is devouring chapter books! He also got to pick out a dessert from a nice restaurant, which of course included chocolate.

And he opened up presents from friends, smiling from ear to ear.

Jake and I spent the day reflecting on the night of his birth. Each time we talk about it we uncover some new detail one of us didn’t know about the night. One of the oddest/hardest parts of that night was not being able to go through it together. We were separated initially for the ambulance ride and then I saw him very briefly before Malachi’s heart stopped. So the accounts from that night are two very separate ones.

It is hard to not get emotional when we talk about the night of Malachi’s birth. The unknowns from those months are still felt deep within my soul…the faces and mannerisms of nurses and doctors during hard conversations are etched into my mind. The good moments, the bad moments, the beautiful surprises, the devastating news.

This is somewhat unrelated, but keeps coming to mind…. 48 before Malachi was born we had taken the youth group to explore and spend the night in a cave two hours from our home. It is a giant cave with a main room the size of a gymnasium and trails off of it. So when doctors realized I had a placental abruption they assumed it was from an injury I sustained, like a fall, as if I were spelunking in a cave. They kept asking what I had been doing in the days prior and when I explained about the cave trip they automatically kept assuming I had injured myself caving. But what I kept trying to explain is that I didn’t do anything physical in the cave, just walked around the main room and open areas and supervised kids. I definitely didn’t fall and most definitely do anything that would have potentially hurt Malachi! I was such a nervous pregnant mom and followed the rules to the letter.

But assumptions were made and his paperwork at birth listed (and still does) that I had fallen so severely while caving I caused a placental abruption. I remember overhearing nurses saying things like “Why would she go caving when she was 4 months pregnant!” The emotional toll this took on me, carrying the label of being a negligent mom, really added an element of grief to those first few days and tinged my interactions with doctors and nurses.

But obviously there are way bigger things to focus on from that night.

This is the last photo I took before Malachi’s birth. It was the night before at a soccer banquet for our high school team. I was 24 weeks and wearing normal, non-maternity clothing in this photo.

As Jake and I shared our experiences again with each other we talked about the spiritual moments from the night. My encounters with God in hearing His voice multiple times, prompting me to actions that saved Malachi’s life. And Jake having visions of Malachi headed heavenward then being carried back down mid flight.

That night has changed our lives, it has changed our faith, it has changed our relationship forever. We are bonded in an indescribable way, and raising a miracle like Malachi has been such a gift.

Malachi is hands down the most amazing kid I have ever met. He has such a great sense of humor and such a tender heart. He offers such grace to me and to others, and he is always up for an adventure. He loves big and with all of his heart. And he expresses so much without speaking a word. He is such a pure soul and teaches me so much. I can’t imagine any other life or any other version of my Malachi. He is exactly the person God designed him to be, and he is such a gift to the world.

Levi ended up getting a random virus the Monday after the party that is known for 5 full days of high fever, sore throat, and headache. And sure enough he lasted the 5 full days. His fevers were reaching 103 even on fever reducers so we watched him closely for seizure activity. He wasn’t able to tolerate feeds for the week and lost a significant amount of weight but today he seems to finally be on the other side of the sickness. The boys both see the GI doctor for a weigh in this week so the timing is not ideal for a huge weight loss.

The pediatrician explained that the virus that Levi had was highly contagious and to expect everyone in the house to have it by the weekend. God must have had His hand of protection on us because not a single one of us caught it. I prayed very specifically over this, praying that nothing would stop the ministry work we just kicked off with our soccer leagues. And with help from God we were able to fully run those ministries and share Jesus with over 70 kids twice this week.

Levi missed a week in school and has been pretty devastated about it. This sickness was an emotional roller coaster for him with trips to the pediatrician, prescription eye drops, dangerously swollen tonsils for his airway leading to lack of safe sleep. He is so excited to re-enter the world this week!

Lately God and I have been doing a lot of talking. Although Levi had a relatively minor virus it still highlighted his medical complexities…the very ones I like to pretend he no longer has. There were scary moments for me this week watching him struggle to breathe due to his large tonsils. And there were moments I thought I was witnessing seizure activity but then he snapped out of it…but those moments still triggered all the emotions for me. I watched him struggle to maintain his weight and hydration, relying on the g-tube heavily….the g-tube I like to believe he no longer needs.

The nights were sleepless and the loneliness of this life started to hit me pretty hard. Each day requires me to pour out all of myself and being selfish simply isn’t an option. Even having hobbies and friends right now sometimes feels selfish. It is just such a strange and lonely world and I am not sure where that balance should be.

I read something this week about flamingos that really caught my attention. Did you know that pink flamingos lose their color when they become a mom and are raising their babies due to all of the energy they put into caring for their little ones? I realized this week that I have been a pale flamingo for the last decade. And I often don’t recognize myself in the mirror. And oftentimes I don’t realize how pale I am until I am surrounded by a whole flock of bright, vibrant flamingos. The starch contrast makes me self conscious, and it is sometimes easier to simply avoid the flock to avoid the comparison opportunity. But it can get lonely.

Anyway, back to God and I…

Over the last few weeks I have been doing a study with the youth about the ripple effects of our faith in trials. We have been looking at different characters in the Bible and watching how their moment of faith impacted generations and generations.

For example, the Hebrew midwives, Puah and Shiprah, acted in faith and it rippled through the Israelites sparking the courage of Amram and Jochebed (the parents of Moses). Then their trial and act of faith of putting Moses into the basket impacted Miriam and Aaron. Etc, etc, etc.

We have been created circle diagrams and watching the ripple effects of our small faith choices.

This week God pointed me again to one of my favorite stories in John 9 about Jesus healing the blind man:

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

After Jesus spoke these words he healed the man. Later in the chapter the Pharisees investigate this miracle, not believing that the man was truly blind before Christ’s encounter with him and they call in the parents of the man for questioning.

But when I draw out the circles of this blind man I can’t help but wonder what impact his lifelong trial of blindness and sudden healing had on the man’s parents. I can’t imagine getting to witness this magnitude of a miracle in my son and the life transformation it must have been for all of them. What a beautiful picture.

But as those circles keep rippling from this one man’s disability and healing I find that I too would be a circle in his story. Had this man never been born blind and required a Savior to heal him and make him new I would have never fully recognized the truth that sometimes our trials are in our lives so that God’s power can be seen through them.

I think back on Malachi’s life and the ripples it has caused in my faith. And I watch as those ripples flow into more circles each and every year. Each and every hospitalization. Each and every new encounter with new friends.

And I see it.

Malachi has yet to receive his full healing. But ‘the works of God’ are most definitely being displayed in him. And I am so thankful to be raising a chosen instrument to proclaim God’s name. And I am honored to be a testimony bearer for the ripples this amazing ten year old boy is making in the world for the Lord.

May we all have the humility of heart and the eyes to see beyond ourselves and recognize the impact we can have on others when we live by faith.

Alright, off to bed. Thanks for checking in on our family. I am still adjusting to posting every other week, and truthfully I am not a fan! It is too much to remember. But I am also a creature of habit, so I need to give it a bit more time to make sure I am not just bucking change.

Much love,

Leah