We are so thrilled to share with you how well Levi’s voice is developing. If you are new to the blog, when we were initially given the diagnosis (bilateral vocal cord paralysis) we were told that it would be unlikely that Levi would be able to produce sounds, and that many children with his condition do not have an audible voice. We found a support group that verified this prediction and had to process what that meant for our warrior.
As you know we explored lots of routes for Levi that would allow him to live life without a trach, and settled on the experimental procedure we did in 2017. When we met with the doctors they explained that we would be trading a trach free airway for his voice. Jake and I processed this sacrifice and came to the conclusion that a device free airway was our priority, and resolved to teach him sign language. We also talked with doctors about vocal cord injections down the road to plump them up enough to touch and give him a whisper of a voice.
The surgery was successful and we were shocked a few weeks later when we heard him make vocalizations. It actually concerned us because it meant his vocal cords were close enough to touch, which could mean they were close enough to also block his airway. When we traveled back to Cincinnati later that year they explained that the voice would be temporary and he would lose it as his airway grew and the cords moved apart.
But here we are nearly three years later and his voice is strong! The surgeon told us in August that his airway is growing with him and it doesn’t look like his voice quality will be affected anytime soon! Here is a video of him saying his brother’s name:
And one more video for you; we have been working on counting and numbers. He is catching on, but definitely has some fine motor impairments that keep him from being able to count with his fingers. But I am so proud of his willingness to learn.
This week we waged a savage battle against sleep. After several more nights of staying up until 4am with a child (they took turns) I blazed past my breaking point and decided that we simply HAD to find a solution. We revamped bedtime/medication routines and made some other changes to help facilitate success as much as possible.
The biggest challenge that we face each evening is with Malachi’s stomach. Little known fact, Malachi can’t be laid flat unless he is asleep. We even change his diaper with him sitting up! Anytime we lay him flat the air moves around in his belly and sparks his seizures, and getting him back to baseline after is such a challenge so we simply don’t ever lay him down while awake.
Yes, we have spoken with his doctors about this- we even took him to the epileptic monitoring unit at Vanderbilt to have his seizures analyzed and the specialist there said he isn’t the first child they have seen that has gut triggered epilepsy, but it isn’t common enough for their to spend research time and funds on. We had hoped that being able to vent his belly with his g-tube would help, but it hasn’t eliminated the issue.
After we medicate the boys around 9 each night, we have to pick Malachi up and help him burp about every 10-15 minutes. If we don’t do this he will get trapped air in his belly and start having seizures and/or cry most of the night with a tummy ache. This burping process goes on until he falls asleep around 1am, and with as big as he is getting I am physically sore by the time we are done for the day. He has hit the 40 pound mark and is completely dead weight.
Levi goes to bed much easier than big brother, but after he drifts off he is hooked to his equipment (feeding pump and sometimes pulse oximeter machine) for the evening and I want to be close to make sure he doesn’t do anything that would accidentally rip out his tummy tube. He is a mover and a groover so I am up several times a night unwrapping cords and fiddling with machines. I transition him to his bed with walls when I hook him up, and that has been a wonderful blessing for my peace of mind!
But since they both start the night in the bed with mom, this week we moved a spare king bed up in place of the queen. Levi sleeps with blankets and they were getting alarmingly close to Malachi’s face as he fell asleep.
Yes, it is overbearing and obtrusive, but it keeps the boys separated enough to peacefully drift off to sleep. With our new changes in place, I have been able to get all three of us asleep by 1:30 for the last three nights! And Malachi has slept 7 straight hours three nights in a row which has been a HUGE improvement from the 3-4 hours I was getting each night.
I recognize that was way more information than you could possibly have wanted to know about the sleep routines in this house, but alas that has been the main focus of my week. Without sleep, most of my days this week were focused on simply staying awake and keeping my kids alive.
One of the highlights of each week is horse therapy on Mondays. Levi started squealing with joy when we pulled into the parking lot this week, which is a huge improvement from the cries of terror we were getting four weeks ago.
On Saturday we loaded up the boys and took them to a college soccer game to watch two of our former high school girls. You would have thought we were taking them to Disney with the sheer excitement and joy that poured out of them on the drive there. They miss being out and about.
Malachi loves soccer. He loves talking about it, playing it (when his league was in session), and listening to it. He clings to every emotion from the fans and gets enthralled in the game. This is his face when he is intently focusing on something.
We seem to be turning a corner with Levi’s eating, and for the first time I have been able to envision a life with no g-tube for Levi. He is nowhere near that mark now, but his interest in food has grown and he is attempting so many new things. I would love to have him tube free by the time he is old enough to enter Kindergarten.
At his last Cincinnati surgery the pulmonologist was excited to share that it looked like Levi had “taught” himself to safely eat and drink; he said usually adults can do this but kids take much longer. The gap is still there in his airway due to his cords not fully closing, but when they cleaned his lungs there was no sign of food particles or foreign substances.
He still can’t break things down well but he is trying. We gave the kids some candy this weekend and Levi loved the twizzlers but he can’t swallow them. Instead he chews them up and sucks on them for flavor, then spits them into the trashcan before taking another bite. It is a gross process but he is still learning what his limitations are and acting accordingly.
When soccer season ends each year we bask in the newly acquired free time we suddenly have. But that last about two weeks and we start itching to get involved in something else. We are always looking for ways to use our time here on earth to impact others outside of our family, and free time starts to feel like wasted opportunities.
When I was a child I posted a Bible verse right above my bed, literally on the ceiling. I remember reading it for the first time and processing its meaning even as a young child. The words are ingrained in my mind.
“I must work the work of Him that sent me while it is day: the night cometh when no man can work.” John 9:4
Sometimes reading scripture through the eyes of a child is so refreshing, and I remember the straightforwardness and simplicity of the verse had an impact on me. The life of a Christian is about daily carrying out a job description to be the light of the world and the salt of the earth. Every day we should be looking for ways to draw others close to God.
But as I sit here and read that verse again, I can’t help but believe that God was imprinting it on me at such a young age for a bigger reason. You see, John 9 has become one of my favorite passages of scripture and one I feel so strongly applies to both of my boys.
Jesus and his disciples entered a town and came upon a man who was blind from birth. The disciples asked Christ whose sin caused the man to be born blind, a common belief in those times. In John 9:3 Jesus replied “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” Almost immediately the man’s sight was restored.
That verse has worked it’s way to the top of my favorites list as I can’t help but believe that my boys are very intentionally unique. God created each of them with differences for a specific reason, and while they haven’t received a healing, “the works of God” are being displayed in them. My God is not a God of errors, and everything He creates has the ability to bring Him glory! Are you using your weaknesses in life to highlight His strength?
I think back to that verse written above my eyes as they drifted off towards sleep each night as a child, and I can’t help but believe that God was preparing my heart for this unique path and pointing me towards a Bible story that would become my own.
Yes, Jake and I have every excuse to sit at home and focus on our family. But we recognize that our time on earth is a job assignment and that a time is coming “when no man can work.” And my heart can’t shake the feeling that there is so much work to be done.
My mind has switched gears to focus on some ministry opportunities in our community and also planning out what our annual family service project will be for Christmas. We typically like to do something for the NICU mothers but with Covid I don’t know what that will look like. Be in prayer with me that God makes it abundantly clear what direction we need to go in this year.
And a final challenge, for myself as much as for you. Are we excitedly and actively pursuing the tasks God has assigned for us? Or have we turned our walk with the Lord into a job to be completed? Our work for the Lord shouldn’t be reduced to a daily mark on the checklist, but instead our work ethic should reflect our overwhelming love for the Father and our desire to be used for whatever task He assigns us to.
Thank you for continuing prayers of protection over my family. Covid seems to be staying at bay for now in our town. Masks are not required in our school system and we are only having one student at Jake’s school each week diagnosed, which is wonderful statistically. Keep those prayers coming!