Our crew made it safely to Cincinnati late Friday and have been making the rounds visiting family. And Levi got a taste of Skyline Chili for the first time ever.
Before I tackle Ohio news, let’s hit some highlights from a week prior to leaving Tennessee.
We had a visit from a new bear this week. This one was pretty massive and went after some Amazon returns that we left out on the front porch. As long as he doesn’t become a frequent flier to the porch we won’t get the shotgun out to scare him off. We live in the woods, so we have to remember to share the territory. Here is a video if you want to see the package thief:
And what is inside those boxes, you might ask? Levi’s physical therapist is still noting some low tone, especially around his ankles. We are trying to think of ways to make him work physically and get stronger so we ordered a new play set for Levi to encourage him to challenge himself.
We set it up in the living room to make it something he would gravitate towards and so far he loves it. He takes naps underneath it and sits on the platform just as content as can be. He squealed his first ride down the slide and while he is still cautious, he is getting bolder each day.
And Malachi went for a ride down the slide too!
Malachi had a busy week at his swim therapy; here is a quick video:
And he also rode his horse independently for a few laps! This is huge!!
Levi finally got brave enough this week to try out the swing in the playroom!
Alright, now on to Cincinnati updates. A little history for any new readers…
When Levi was born in November 2017 he had a rare condition called bilateral vocal cord paralysis. The typical treatment is to put a trach in the child and hope that one day the vocal cords wake up (a 50% chance). Life with a trach is complicated, a lifestyle we are used to but if we can avoid further machines and devices for our boys we have to give it a try.
We found three different hospitals around the country that were offering experimental procedures for newborns with Levi’s condition, the primary one being Cincinnati. Oddly enough (hello God) we just happen to be from the Cincinnati area so we have family within an hour from the hospital. We had a very long 5 month hospital stay and nearly two dozen surgeries/procedures but Levi went home trach free. We permanently changed his airway by putting in a piece of his own rib to prop the cords open.
Fast forward to this week. We did a routine scope a few weeks back on Levi in Chattanooga and it showed that his vocal cords are moving. Because of that we have been able to safely wean him off oxygen, and this week we will be following up with the original surgeons. He is also cleared to start to learn to eat. But because this was a new procedure (Levi was the second newborn to have the rib graft done) the surgeons need to figure out what impact the rib will now have on his normally functioning cords. They will also lavage his lungs to see if he is aspirating any foods or liquids into his lungs.
Tomorrow morning we will meet with pulmonology and Wednesday we will meet with Otolaryngology. Then on Thursday each of those specialists teams will take a good look in the operating room to see what is going on with his airway. We are anxious and excited to hear what they have to say after his procedure.
We considered staying in the Ronald House for this visit, but they are under construction and short on rooms. Having relatives an hour away, we didn’t feel like it was right to take up space in the house. It would have been very nice to have a “home base” for Jake and Malachi while we go to appointments, but we will make it work.
This weekend just happened to be my grandmother’s 84th birthday so we popped in on her party with family. Malachi and Levi had a blast spending time Saturday with their Ohio cousins and Grammy.
Malachi went for a dip in the pool but we kept Levi out for infection risk purposes. The last thing we need before an operating room visit is an infected g-tube site.
We are staying with my dad, stepmom, and my half sister and brother. Malachi has always loved them dearly, but seeing Levi so smitten with the kids is so sweet to watch. He is mimicking everything he sees them do.
Malachi’s wheelchair adjustments have been working so well for him! He is able to sit very upright in the seat and for the first time in a long time he was able to actually sit under the table at a restaurant and color.
Earlier this afternoon we stopped by my other grandma’s house and she got to hold Levi for the first time since the NICU. It was a special visit.
As I have explained many times before, the war within my mind during hospital stays and visits is a serious one. I procrastinated packing for the trip, determined to not acknowledge it until the last possible minute. The drive to Ohio was filled with waves of nausea as I kept seeing memories from Levi’s NICU stay when I closed my eyes. I talked with Jake at length about the darkness of those days and the feeling of being at war. He talked about the guilt he carries from not being able to be by my side for the majority of it. We were definitely under attack, and the wounds still seem fresh.
But as God always does, He is reminding me that there is incredible purpose in this chapter He is writing. He has impressed so many big things on my heart this week that are reminding me that even in the darkness, those places that make us cringe and want to flee, we are called to be a bright light.
Psalm 34 is a really pretty chapter. If you can take a few minutes to read it, I encourage you to do so. But one part really stuck out to me this week.
Verse 6 says “Those who look to Him are radiant…”
I have such an imagery of this verse, especially when I think about Moses meeting God on Mount Sinai. The Bible tells us that just being in the presence of God made his face literally glow to the point that the Israelites were terrified when they saw him.
I long for that glow. I long to rest in the presence of God long enough that his magnificent glory becomes a part of my countenance. I want that glow to be something that catches eyes and allows me to be a mouthpiece for God.
We should all desperately desire that radiance that being in the presence of God can provide.
God has reminded me in the last 48 hours that there is a reason beyond the known one that I am in Cincinnati this week. I am not here for me, I am not even here for Levi. There is someone else that we are meant to encounter and share Christ with over the next week.
It is very likely that I will never get the chance to figure out the reason we are here, and frankly God’s business is none of my business…I am just thrilled when I get to be privy to any of His behind the scenes work. My prayer is that I can keep my gaze on him, even through the hard moments and memories this week, long enough for His radiance to be seen on my face.
Please pray with me over Levi’s airway this week and for reports that exceed our expectations. May next week’s blog be full of praiseworthy things.
8 thoughts on “Radiance”
Prayers for a good report today! Love that first picture!
Leah, prayers for you and Jake and the boys this week. Praying for the exams and good reports on Monday and Wednesday and Thursday.
Enjoy family time and praying for peace an comfort for your mama heart as you step back into the hospital environment this week. Thank you for sharing your journey with such raw, real transparency.
Hey, I’m a new reader (a few months). I did have a few questions:
I’m one post Didn’t you mention Malichi cannot see? Is he blind? He doesn’t look like he’s blind so it confused me when I read that a few weeks ago. You mentioned Levi has a feeding tube, but haven’t I seen him in a high chair eating before?
Praying for you guys!!
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Hello Alissa! Both of your questions are great ones…
Malachi has something called corticol visual impairment which is a fancy term for blindness due to brain damage. His eyes are fine, his nerves from the eye to the brain are fine, but his extensive brain damage keeps him from actually seeing things. Over the years we have seen his vision improve slightly, but at this point he can only see things in his peripheral vision if he tilts his head forward and looks up. And even then, he can only see those things in very low, natural light. So in short, eyes are fine but he can’t see.
Levi’s vocal cords were paralyzed open at birth. Typical cords close when you swallow things to protect your lungs, so eating was very dangerous for him up until a few weeks ago when they started to move. Over the last few months as his vocal cords started to move we did a swallow study and he was cleared for drinking liquids for the first time! He is working on food, but he is so orally sensitive from never eating that he chokes very easily. The bites we give him are usually the size of a grain of rice as that is all he can manage right now. At each meal we try to feed him something to help him overcome those sensitivities but it is a painfully long process. He still is fed all of his daily calories through his tube, but maybe in the next several years we can transition him over and take the tube out. He is officially drinking water safely though, which is huge!!!
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THANKS FOR SAREIG
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Praying always, but will be more focused considering Levi,s little air way. I praise God for all the prayers answered for both boys! Blessings to you n your family always. All my love, Jessie
I’m keeping you all in my prayers this week . . . Including your doctors . . . May they find all good and miraculous things in Levi to move him forward to a normal life . . .
You have “that glow that catches eyes and allows you to be a mouthpiece for God.” . . . I love reading your posts every week . . . They are so inspiring . . . Love you all, NANCY 🥰💕💕💕
Praying the appointment went well! I’ll be following up with reading the next post!
What a great Bible lesson/life application..I’m encouraged to read Psalm 34 today!