We are in the final stretches of summer and thoroughly enjoying the family time these last few weeks have given our family! The boys are at fun ages for family activities and we have remained healthy enough to get out of the house and experience a version of “normalcy” that we could have only dreamed about over the last few years.
The amount of AMAZING Malachi smiles that we have gotten over the last two weeks has brought me joy. We went through a season where the smiles were rare when we were transitioning through formula and medication changes. But the joy that exudes from him these days makes me just want to hug the fire out of him. I love these boys so much!
We took the soccer girls to a semi-pro soccer game and rented the party pad right next to the sideline. Malachi loved being so close to the drama and giggled and shouted most of the match.
Levi had a friend join and also had the time of his life (without watching a single second of the game). He even got to go out on the field at halftime and take a penalty kick.
Every year we meet up with the Chick-Fil-a mom from Malachi’s viral post in 2017. When we first met that memorable day I was pregnant with Levi and here we are all these years later. It is such a special friendship!
We invited them to spend a day at our favorite exotic animal farm with us and gathered together some other sweet families to join in on the fun. The owners are friends of ours and just so incredibly accommodating with Malachi.
Malachi even got a huge kiss from his favorite camel, Abu.
I don’t have many photos of Levi on our farm day as he was so busy running around with his buddies.
We got home and recapped the adventures of that day and Malachi couldn’t stop giggling just talking about how much fun he had.
Levi has been doing some back to school shopping and got to pick out a big boy Bible and a case to put it in. He has been inviting us to Bible studies each night and picking out pages for us to read. His excitement is so sweet.
We have been working with his gastroenterologist to cut down on his g-tube feeds now that he is eating well and gaining good weight. We are down to a 6-hour formula feed each night and are hoping to keep dropping that down until we can eliminate g-tube feeds for him altogether. We will leave the g-tube in until he is capable of swallowing pills, as his seizure medication is a lifetime one and tastes awful. But these small steps of progress for him are encouraging.
This has been a season of quiet for me…something I am not used to and frankly a bit uncomfortable with. But the Lord has been very gracious through it and I have been able to hear His voice; He has been cultivating discernment within me in very specific ways and I am so thankful for continual sanctification.
I don’t have a specific devotional thought this week but I wanted to share a verse this week that has spoken to my heart and challenged me greatly.
Philippians 1:9-11 “And this I pray, that your love may abound still more and more in real knowledge and all discernment, so that you may approve the things that are excellent, in order to be sincere and blameless until the day of Christ; having been filled with the fruit of righteousness which comes through Jesus Christ, to the glory and praise of God.”
The next verse following this one packs a punch as well.
“Now I want you to know, brethren, that my circumstances have turned out for the greater progress of the gospel.” (Verse 12)
What a wonderful goal. That regardless of our circumstances the good news of what He’s done is woven throughout the storyline we have been given.
It has been a whirlwind since our last update two weeks ago!
Let’s start with Levi’s big day in the operating room.
Yes, that is a smile in this photo! It is pretty rare to get smiles from him pre-op but a toy cell phone did the trick. We always try to find one “busy” toy for surgery day to give him something to look forward to and this year we settled on this small phone that is pre-loaded with apps, books, and games. It is for very small children and can’t do true phone things but in his mind he is just like the teens.
Levi was his typical anxious self as we waited for the surgeons to come in for pre-op talks. We discussed his current breathing and they watched several videos of Levi after various activities to be able to see how loud his breathing is after exertion.
After his dose of silly juice he was taken back to the operating room and I went to the waiting area with the other nervous parents. I can’t ever do an adequate job describing the emotions within this sitting area. But it is such a thick, fragile place to be in during a very vulnerable time.
Thankfully his procedure is usually pretty quick if they aren’t doing any trimming, and after about 45 minutes I was called up to head to a parent conference room off of the waiting room area.
Sometimes the surgeons are staggered and I get called into these conference rooms twice but this year they all came in together to talk, which I always prefer. Last year’s tone from the surgeons was very concerned and worried that we were entering some new difficult territory, even mentioning the possibility of having to do another rib graft in the future. But this year the tone was back to our normal one, encouraged that things were still anatomically safe and no trimming was needed this year. His arytenoids are starting to crowd the airway and will likely require another trimming in the next few years but they see no reason to do that in the next calendar year; if you are a medical nerd look up “Bernoulli Effect”.
They explained that the removal of his tonsils and adenoids last summer made more of a difference than they could have predicted. They said the interventions that they did last year successfully made his airway safe again, something they weren’t able to see until this surgery, hence the excitement! He still has some major tracheomalacia (floppy airway) due to the paralyzed vocal cords but his lungs tested great and show no signs of aspiration.
The surgeons said if he has quality of life with the amount of activity he is safely able to do then we will continue this pattern of annual scopes and interventions as needed until he stops growing and his airway is a determined, permanent size. Until that happens there is always a potential that the opening to his airway won’t grow at the same rate as him.
If Levi ever wants to pursue something more active that requires more of an airway they we will let that drive the options presented. We have more invasive surgeries that we could do that will allow him to breathe easier but they have the potential to remove his ability to speak and eat. That is a decision we would like to allow Levi to make when he is old enough to do so.
Levi struggled post op to come out of anesthesia, and truthfully it lasted all the way through Kentucky after as we drove home. We pulled into the driveway around midnight and were so happy to be back home as a family.
Now for some Jake updates.
Jake had his LASIK procedure about a week and a half ago and his healing has gone very well. He is thrilled with the results and adjusting to being able to see well and not have as many headaches, praise the Lord!
Malachi has been such a trooper through all of this. He is slowly adjusting to his new formula and the reflux, excess seizures from the change, and the general discomfort seems to be getting better by the week.
He can’t see the TV but loves listening to professional soccer games. This particular one went to a penalty kick shootout and this was his smile when the winning team made their final goal. I just love him.
Jake has been helping him play the old school Nintendo. Even though he can’t see the screen he likes the auditory feedback and drama haha.
The week of Levi’s surgery was absolutely intense. We spent hours and hours driving to each of the (what ended up being) 10 appointments and 2 surgeries. If I am being perfectly honest, we over-committed and I was regretful after the first day. But those appointments are difficult to get, usually scheduled 6 months out) and canceling just didn’t feel like an option. So we did our best.
I still hadn’t given myself time to process my emotions from Cincinnati and I could feel the pressure building. One of the things many people don’t think about is the amount of phone calls we have to navigate on a daily basis with medically complex kids. For every single specialist appointment we got at least one reminder call and voicemail. Then add in the text reminders, email reminders, request for feedback after, and post visit notes. For just the kids appointments I received 46 emails in 5 days. And that is not counting any texts or phone calls.
By the middle of the week my brain had had enough and I just had to turn off my notifications and ringer to be able to focus. And by the end of the week I finally had my emotional overflow cry in the closet.
Even though it was a difficult week God was still very present and active in each of our situations. I was gifted generous portions of His peace this year as we navigated hard things, and I am so thankful to God.
I kept remembering what a miracle we have been given in the things that Levi can do. And that led me to the many miracles that have taken place in Malachi’s life. The many times he has been brought back from the edge of death.
Jake was put on restrictions to not mow the grass or do anything that could get dust or debris in his eyes and our grass was past the point of needing attention. As I rolled out the mower deep down I had a burst of excitement as I thought about the chance to be alone. Levi’s anxiety has been out of control for about a year now and if I leave his line of vision he completely breaks down. Leading closer to surgery this understandably heightened. And Malachi requires 24 hour care, which I am honored to be able to give him. The result is very few moments of alone time.
As I climbed onto the mower I also had the luxury of putting on a pair of noise canceling headphones, something I can’t do due to being on seizure patrol 24/7. And I pulled up the Bible Recap plan that Jake and I have been working through since January 1st. I was mowing along when I heard a verse and had to stop and play it again.
The story was from 2 Chronicles 16 and it was talking about a king named Asa who developed a disease in his feet. The next verse was so simple, but after the week we had it hit my heart a little differently.
“His disease was severe, yet even in his disease he did not seek the Lord, but the physicians.”
As I heard this verse I felt conviction from the Holy Spirit. I am not exactly certain when the shift happened, but I have begun to speak to God less and less about the severe struggles of my children. I pray for overall healing, I pray for victories both large and small, I pray for their comfort within their medical diagnoses. But I have not done a very good job “seeking the Lord” and being specific with God in my prayers.
Historically when we have had big decisions to make this was a natural inclination for me. We sought the Lord and obeyed the direction He led us. But now that we are in the nitty gritty of medical life I have not prioritized seeking Him over others for the solutions.
Definitely a needed reminder for me! God has granted wisdom to many of the doctors and specialists in my boys lives, but why not talk to the source of that wisdom instead of solely leaning on their words of wisdom. In all things, big and small, I need to be seeking the Lord’s guidance more.
The story of King Asa keeps going in 2 Chronicles and after his death his son, Jehoshaphat becomes the new king. He heard that a great army of men were coming to invade Judah and his first reaction was a beautiful one. The Bible tells us in 2 Chronicles 20:3 “Jehoshaphat was afraid and turned his attention to seek the Lord.”
In his moment of distress his first reaction was to surrender his plans to to God. He gathered all of the people of Judah and together they sought the Lord. During this gathering he leads a prayer and his final words in that prayer really pierced my heart this week.
“For we are powerless before this great multitude who are coming against us; nor do we know what to do, but our eyes are on you.”
The humility in this prayer is so beautiful. And the trust in the Lord is so evident! What an example to Judah and what an example to us even now. But the story gets even better.
The Spirit of the Lord came upon one of the Levites in the assembly and he said, “Thus says the Lord to you, ‘Do not fear or be dismayed because of this great multitude, for the battle is not yours but God’s….You need not fight in this battle; station yourselves, stand and see the salvation of the Lord on your behalf, O Judah and Jerusalem.’ Do not fear or be dismayed; tomorrow go out to face them, for the Lord is with you.”
The next morning Jehoshaphat appointed a group of worshippers to go before the army to sing praises to God. When they began singing to the Lord He created chaos on the battlefield causing each attacking army represented there to kill one another. By the time Judah arrived to the battlefield all of their enemies had been destroyed.
I don’t know why this story meant so much to me this week. But it spoke volumes to me, getting to see such confident and bold faith played out as they entered this battle. They praised God for the victory before the battle even began! What a posture of faith!
I don’t know what battles you may be facing right now but I am hoping that this account in scripture can also impact you. May we all be able to speak the words to God: “Our eyes are on you.”
Thank you for the kindness, concern, and prayers this month.
