Daylight Savings is a thorn in the side of most special needs family, and definitely one of my least favorite things twice a year. We live by the clock, constantly monitoring medication schedules, feeding schedules, appointment schedules…you get the idea. When the clocks change life gets a bit bonkers as we try to level out to a new normal. I will be working for the next several weeks to slightly move medication routines a little at a time to be cohesive with the boy’s routines.
The boys had appointments with their pulmonologist this week, each for different diagnoses but it is so nice to be able to combine those appointments. Levi is still doing really, really well and specialists are continued to be surprised at his voice quality. Most children with his condition are unable to speak, or can only speak with a slight whisper. We can tell that his vocal cords are still paralyzed due to the minor rasp in his voice and the very slight stridor when he is active. But overall the doctor is very pleased with his progress. Levi’s main ENT and pulmonology specialists are in Cincinnati but we are also followed here locally so we have a point of contact for emergencies, hospital stays, medications, etc.
Total rabbit trail here…but 9 years ago I would have thought this was such a sweet picture. Now all I can see as I look at it is that invisible germs dancing on those steering wheels and the inner voice inside of me yelling ”get your finger out of your mouth!!!” But then I remember that after so many years of desiring with all my heart to push a child in a shopping cart, God has answered my prayers and given me a taste of normal…nasty germs and all. I am also laughing at this picture as I look like a neurotic mom who buys things in fours. And that may be true…but I will instead blame the weirdness on a buy one get one free sale on green beans and Nature Valley bars. Ahh rare glimpses into the unspoken mind of Leah.
Malachi’s appointment did not go as I had hoped. For the last 9 years we have oddly been able to avoid pulmonology for him. Even when Malachi was fighting for his life in the NICU, his lungs were shockingly strong. Recently I have noticed his oxygen saturations dipping and he has had shallow breathing, mainly right before bedtime. Our last two ER trips were due to this issue and we have been unable to find full blown pneumonia that we can point to as the cause. In an hour he can swing from an oxygen saturation of 94 (his baseline) down to 89. While this doesn’t send me into a panic, I am watching our safety window closing as 88 is the ER worthy number and typically the hopsital admission mark.
When they triaged Malachi at our appointment Wednesday he was having a hard time pulling a number higher than 89 and the nurse grew anxious. He did not look oxygen hungry or in distress but I understand her anxiety over his numbers. She went and got someone from the respiratory team to come in and they started to try to hook him up to the wall oxygen in the exam room. I knew if they did this they would likely try to send us on to the ER and I really did not want that to happen with Levi in tow. I had just medicated Malachi in the waiting room and I assumed that maybe his reflux was causing his shallow breathing. I tried some positional changes and he popped up a bit for them to feel comfortable.
When the pulmonologist came into the room he listened to Malachi’s lungs and said that they sound very wet. He has not been sick, so he believes this is a pretty good indication that Malachi is aspirating his saliva and secretions (meaning it is going down into his lungs and settling). The hard part with this issue is that there really isn’t a great treatment to stop him from aspirating. He already isn’t taking any food by mouth, and we can’t really make him stop salivating. So even if we did determine that there is fluid in there, we can’t do anything about it.
So if that is the case we need to start treating the potential bacteria that is getting into his lungs with a routine antibiotic. This is done often for patients with cystic fibrosis and other airway disorders so it isn’t an uncommon thing- but obviously one we would love to prolong as much as safely possible. In a week and a half Malachi will have a CT with contrast (dye) so they can see the anatomy of his lungs as they function. Then he will go directly into the operating room for a bronchoscopy so they can send a camera down into his lungs for a look as well as testing the fluid. Levi has had about two dozen of these but this will be Malachi’s first. They are relatively quick and painless but he does have to go under anesthesia, and they can often trigger an immune response after bringing on a fever.
As much as I loathe any and all procedures and surgeries for my children, I recognize that many serve a needed purpose and this is one of them. So I am in the momma mode of ”let’s just get this over with”. We need to get ahold of his oxygen needs before any sickness hits Malachi and gets too far beyond an easy repair.
We all three got sunburned on Thursday then snowed in on Saturday! The weather has been so wonky but fun. We had a much needed family day on Saturday, just soaking in the quiet time and taking turns trying to catch up on some sleep.
We are still wildly but wonderfully busy right now. This week we have had Bible studies at the church on Tuesday (kids soccer) and Wednesday (youth group) and at the house on Thursday (for women), Saturday (for men), and Sunday night (for the youth). We are still cooking for the teens, which always leaves me laughing. Tonight we had over 40 youth in the house! What a blessing….a chaotically wonderful blessing.
I think often about my boys and their individual walks with the Lord. Malachi carries a pure innocence that I sometimes envy. I truly believe he loves the Lord, and he loves to talk about spiritual things. He is very intelligent and has the capacity to listen and understand truths. I smile when I think about the joy Malachi’s life brings the Lord. And what a ”chosen instrument” he is.
1 Corinthians 1:27 ”But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.”
At face value this verse can sound offensive towards my Malachi, but you know my heart better than that. God has used what our human eyes see as ”foolish” and ”weak” to shame what we consider wise and strong. Seeing God work in Malachi’s life has reminded me of the mysterious ways of the Lord.
Then there is Levi. Sweet, wild Levi. We are very much like first time parents with him as the developmental stages he goes through are new to us. Each day I find myself in wonderment at some of the things he says and does, recognizing that he is a unique individual with a mind and will of his own.
I read a quote: ”Children don’t grow up to be Christians because of their Christian upbringing, but because God took their unregenerate heart, and made it alive in Christ.” -Angela Mitchell
I have been really challenged thinking about Levi’s walk with God and what that will look like. And one of the things that I keep settling back to is how much I desire to not manufacture that walk for him. There is something so beautiful and important about each of us on our own journey falling in love with Christ. As youth leaders we see firsthand a false confidence that ”coat tail” faith can give- teens relying on their parents faith as if it were their own, all while never truly experiencing God for themselves.
Levi is set up to be a coat tails kid as he is often at the church when the doors are open. He is our ministry sidekick and witnesses a whole lot of religion. But it doesn’t matter how many times he steps foot in church or how many Christian songs I play on the car radio- God will pursue him and he will have to open that door when the Holy Spirit knocks.
Now, this doesn’t absolve me from raising him in a Christ saturated home. And it doesn’t excuse me from opening the Word of God with him often to teach him what it says. The Bible is very clear about our responsibilities to train up a child. But it has activated this trust in God inside of me, remembering that I don’t have to drag my children to the throne of God….He is also their good Shepherd and when the time is right reveal Himself to Levi. When I look at Levi and remember that He is on a faith journey all of his own it brings me such happiness.
Levi’s testimony is already such a powerful one, and when I hear that beautiful, raspy voice that he “would never have” my heart warms thinking about those mysterious ways of God and what he has in store for my son.
My job as momma to these two amazing children is to continue to cultivate a life of faithfulness and allow the fruits that God grows in our lives to be a natural classroom in which my children can experience God for themselves. That they may ”taste and see that the Lord is good”, not because of something I taught them or a story that I told, but rather because they witnessed His immeasurable grace with their very own eyes.
Please continue to pray health over our family, and pray that we are wonderfully surprised by a good report from Malachi’s upcoming procedure.