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.