This week we visited the GI doc for weight checks and g-tube talks. When I talk to the boys about this appointment we call it an “easy one” because it is just talking and very minimal interaction between doctor/patient. Levi is still carrying some major anxiety in medical settings, but really did well regulating his emotions in this one.
We are in the season of preschool life where he wants to dress himself and doesn’t always put things on the right direction, so ignore our backwards shorts and mismatched outfits…it simply just isn’t worth the battle.
We have incorporated a lot of big changes in Malachi’s medication routines and daily routines in the last year due to his lung condition, and one of the side benefits from these changes has been weight gain. He is not working as hard to breathe with the new regiment (cough assist and antibiotics every Monday, Wednesday, Friday for lung bacteria) and he is able to put on a little more weight.
This has obvious pros and cons. The doctor is pleased with his growth, but he is still significantly smaller than a typically developing 9 year old at just 38 pounds. We could always increase his caloric intake each day but we are also recognizing that the larger he gets the more physically difficult it will be to safely care for him. So we are always working towards that delicate balance of health and strength, making sure his nutritional needs are met.
Levi is weighing in at 36 pounds and the GI doc seemed pleased with where he is at on the charts. Levi’s breathing also makes him burn more calories throughout the day so we are continually working to find that balance for him based on his physical activity each day. He is eating food by mouth often and frequently, but it still isn’t enough to sustain him. Right now we are giving him 4-8 ounces of high calorie formula through his g-tube during the daytime and he also gets about 20 ounces through his tube while he sleeps at night.
Every day is a new feeding routine for Levi based on what we have planned for the day and how active he will be moving. His mood is very much affected by his caloric needs, so if we don’t plan well with extra feeds we are dealing with a very cranky, hungry 4 year old who can’t be fully satisfied by table foods.
Over the last few years I was very hopeful we would be able to get Levi to the point where he wasn’t dependent on the g-tube. Now that he is taking seizure medications twice daily and his activity level is increasing (meaning work of breathing is also increasing) I have put those goals to rest and we are simply accepting where we are at right now. Our only goal is health and growth for right now.
Speaking of breathing….this week we did several play dates with friends. Levi’s stridor (noisy breathing) came back often during friend time and having breathing safety back on my radar is disheartening. It has been a reminder of the long term nature of his diagnosis and the ever changing anatomy and safety we are dealing with. I am having to remind his often to sit and rest so he can catch his breath.
With Jake back at work and the boys being stuck with just mama each day we are seeing a huge increase of jealousy between the boys. Levi will verbally affirm this saying “Malachi is getting ALL the attention.” And when Malachi is feeling those same emotions with Levi he signs NO and makes sure I see that he isn’t happy.
Today Levi has been upset because “Malachi has more best friends than me”. To which Malachi avidly signs YES YES to. The triggers for each new frustration are comical.
I went out with a friend this week and had the boys with me. Levi got to hand the cashier the money which set Malachi into a NO face and seething with jealousy. So I let Malachi hold the receipt and carry some forks.
The fork carrying set Levi into a fit of jealousy, crying because he wanted to hold the forks. Malachi then repeatedly waved the forks in the air in a gloating fashion, making sure that Levi saw him continuing to hold the coveted items.
And if I am being completely honest with you all…
I am loving it.
Seeing such normal brother behavior has been such a gift. Seeing them bicker in their own ways has brought me so much joy and reminded me that God is a loving God, sprinkling our challenges with glimpses of normalcy.
The love that they have for one another is unique and special. To Levi, Malachi is simply his brother. And I love the pure relationship they have- unpolluted by the world and it’s standards.
And even the bickering has unlocked so many new moments of communication with Malachi and increased his desire to be heard. Having Levi around has become the motivation he needed to let his voice be heard.
Our days are still filled with lots of challenges, lots of seizures, very little sleep, and a whole bucket full of varying emotions. But we are healthy, happy, and thriving.
Transparency time: digging into God’s Word has been hard lately. I am still making time to open my Bible and spending time in prayer (OFTEN) each day, but the mental cloud that is following me during this transition time has been making it challenging.
When I go through cloudy seasons like this I try to saturate myself with God things. We play a lot of praise and worship music, I play the Bible app reading scripture as I drive to appointments, and I try to pick one scriptural truth to repeat over and over again each day to myself and to the children.
Being youth pastors we spend time in the word each week preparing Bible studies, but a relationship with God is such a personal one. Taking time to connect with the Father in my personal struggles and worries is also vital.
As I read through 1 Peter this week this particular verse caught my eye and got the wheels turning in my brain and heart.
1 Peter 3: 4 “but let it be the hidden person of the heart, with the imperishable quality of a gentle and quiet spirit, which is precious in the sight of God.”
The hidden person of the heart.
This led me to so many questions: Is the outward person that I present myself to be the same as the hidden person of the heart that God sees? Does my heart reflect a gentle and quiet spirit?
And as I processed those questions I felt the Lord gently pointing out the “loud” in my life. Pointing out the ways that my flesh contradicts the Spirit of God inside me.
We don’t have to focus on practicing or creating the gentle quiet Spirit inside of us, this hidden person of the heart. That is Christ in us, who has transforms us into His image. He does the work for us as we simply connect to the Vine.
Sometimes I need that reminder that a walk with God requires a heart of humility and gentleness. A soft heart instead of a heart of stone.
Ezekiel 36:26-27 “I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws.”
This week I am thankful for the gift of the Spirit of God inside of me. May we never take that blessing for granted.
Please pray specifically this week for an unspoken prayer request in our family. And pray for our endurance as we continue to settle into new routines.