Our countdown to summertime has dwindled to single digits and the Carrolls are ready!

We have been drowning in our to-do list since our Vanderbilt stay, overwhelmed by trying to resume some normalcy but alllllll the medical things. We are also still struggling to get to quality sleep so our energy and time management for each 24 hours has been a challenge, taking naps when possible to hit at least 5 hours of sleep in a 24-hour period.

But this past week we resoluted to knock out some much needed projects that we had been putting off.

Jake and Levi worked on getting the therapy pool ready, emptying the water, cleaning, and refilling it for the season.

As a reward for their hard work the boys had their first nighttime swim for the year!

Levi got to try out his new snorkel, which he definitely didn’t understand the concept of haha. Watching him swim always blesses me, knowing that had he been trached it would have been a much more complicated adventure.

And Malachi was all smiles and ready to swim. He didn’t last as long as he normally does in his neck ring; I assume he new back positioning will take some getting used to. But he was such a happy boy.

And I knocked out a big project, setting up a new medical supply cabinet! I can’t even describe the joy this brought me. We were swimming in all the medical things, and having them organized and managed is amazing. Our incontinence supplies and formulas are in different storage cabinets in other spaces. And each month we get another shipment to refill each of our supplies…it is easy to feel buried.

Malachi and I headed back to Nashville for his low vision appointment and were so disappointed to find out that the referral sent over was for a simple annual eye exam, not ow vision clinic as promised. I was so discouraged to have driven 6 hours round trip for an eye exam that could have been done 20 minutes from the house. And the letdown of believing we were going to get some answers on how to unlock more communication opportunities for Malachi was hard to manage.

After Malachi’s surgery we have had some trouble finding comfortable and supportive seating for Malachi. His old seats allowed a curve in his back, which his new back will not permit. So his lumbar hovers above the actual seat and puts a lot of pressure on his upper back and pelvis. We are still experimenting with some different options but right now recliners seem to be the winner with supportive devices on either side.

He is also preferring to sleep in the recliner, but I am not thrilled at the tightness we are seeing from him being positioned in a long sit for that long. He is back at physical therapy for a few sessions a week right now and he is making some great progress back to a bit more mobility.

Our little Levi is growing and eating like a wild man! We have been trying to slow down his nighttime g-tube feeds but he has lost so much weight during this testing process that he is back to being on the pump at night for added calories.

I am very curious what the Cincinnati team will have to say about his airway. Each year they evaluate if his airway is growing at the same rate that he is, intervening if it is not. He has been struggling with his breathing lately, but also dealing with some pretty major allergies which can restrict his breathing.

We will head north in just two weeks! And the anxiety in Levi is already brewing. He keeps asking hard questions, like “Why do I have to have surgeries and other kids don’t?” Finding answers that make sense to a 7 year old is a delicate process.

I read this quote last week and really appreciated it.

“Faith is not a formula for able-bodied perfection. It’s a posture of trust. Trust that God’s strength is made perfect in our weakness (2 Corinthians 12:9). Trust that God uses all of us- not just the ones who fit the mold.”

This season has revealed a lack of trust in my heart. My prayers changed several years ago for Malachi, praying that God uses Malachi and that we find peace throughout His workings. God is absolutely able to heal Malachi. But when I make that my only prayer for him I tend to convince myself that God isn’t answering my prayers. The continual silence of unanswered prayers can mess with you.

So I changed the prayers. And I changed my heart posture towards what I saw as “results”. God doesn’t owe us evidence of His workings. And sometimes looking so hard for the answered prayers can make us our own God, taking pride in knowing that we “made” that happen through our prayers to Him.

2 Corinthians 12:9 “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

I am working on my posture of trust. The soreness of this last trial still aches deep within my bones, reminding me that I have let that muscle go unworked for awhile.

Thank you for continually cheering on our family and encouraging us in so many ways.

Sincerely,

Leah