After a long few weeks, we were finally able to wean Malachi off of oxygen! He is still not to his baseline quite yet but we are close.

Malachi has been keeping us on our toes lately, and the day trip to Vanderbilt to see his surgeons was no exception. I had the timeline all planned out for the day and when I went to load him up I could tell he was working a bit harder than normal to breathe. I checked his oxygen levels as I wheeled him to the car and he was in the low 80s. So I ran back in and grabbed enough tanks and supplies to get us to Vanderbilt and back, a six hour round trip drive plus the time needed for appointments. I also grabbed the portable concentrator which I thought was fully charged and ready for action.

It wasn’t until we arrived that I noticed the portable concentrator was down to half battery life and I did not have the charger. It felt like a race against time as we waited for the surgeons and watched the screen anxiously. It literally started beeping on empty as I made it to the parking garage after our appointment…just in time to reconnect to the large tanks I had in the car.

Take a look at this tall boy stretched out on the exam table!

We spoke with the spine surgeon first and he said that Malachi is fully fused, meaning his bone has healed onto itself and the hardware is no longer necessary. But unless we have a reason to remove it he will keep that for life. We also talked about the floating rib that suddenly popped up on his side; he said we could surgically remove this if it becomes a concern for skin breakdown but for now it is best to leave it. The thought is that some of the muscles holding it down were cut when they entered his side cavity to get to the spine.

Next we met with his hip surgeon. He is phenomenal and took the time to talk to Malachi and give him time to respond. Malachi indicated that there was pain on his left hip and signed that he was ready for surgery. I was very, very proud of him for trusting the doctor enough to sign directly to him. And so grateful for a doctor who will listen.

We have scheduled Malachi’s first hip surgery for June. It is possible that he will only need to have the one hip operated on, but also a good chance we will need to fix the other side as well. For mobile children they will reconstruct the hip, securing it back into place. But for Malachi he is fully dislocated so they will be removing the portion of the bone that is sticking out of his side. This will shorten his leg significantly, but should immediately eliminate any pressure sore concerns or pain from laying on the protruding bone as he is now. I cringe even typing these details as it all sounds painful.

Recovery should take about a month with just a few nights in the hospital. But we all know how the Carrolls like to make things interesting so we will ride that wave when it comes.

Levi had his big eye doctor appointment last week, or I guess I should make that plural as he actually had two.

These appointment involve a lot of miserable moments for him and we did our best to keep a good attitude.

They are also hard for him from an academic standpoint as he has a hard time with letters due to dyslexia. So when they are having him read a chart he bombs it, but not always due to eyesight issues. I always ask them to try it again using the photos for little kids but he still struggles.

The tests they needed to perform this time require him to sit very still and focus his eyes. He had a hard time with them, and his patience as well as the patience of the nurses started to quickly dwindle. He later told the eye doctor that “the nurse was a bit too pushy”. We were not able to complete the needed tests again this time around and had to call an end to it after he had reached his max.

The boys have been having fun with their Christmas presents still. We have been having some Nerf gun competitions, much to Malachi’s delight.

Malachi also saw the Urologist and unfortunately it seems the Botox injections did not fix his urinary issues. This is pretty discouraging news, as the alternative treatments are less than ideal (intermittent catheterization to get the urine out). The doctor seems to think that his bladder forgot its job and is no longer contracting at all. We will go back in about a month for one more test to check the muscle activity before we explore another route.

We have been hopping these last few weeks with an incredible amount of appointments, trying our best to take advantage of the winter break to avoid the boys missing school. Every time we clear an appointment off the calendar it gets replaced by a follow up one and never truly gets checked off of our minds.

The boys have been reading a book series called “Secret of the Scrolls” at night as part of our family devotions and we have made our way to the ones that talk a lot about Jesus’ time on earth. The books are a lot like Magic Treehouse books if you are familiar with those, and present a brother and sister who get sent into Bible times, each book with them entering a different Bible story.

Last week we read a chapter about the young boy getting hurt and him going to Jesus to ask him to heal it. As I read the story I could tell that both Levi and Malachi were on the edge of their seats listening to the interaction. And the more I read the emotion in the room grew thicker.

“Can you please heal the cut on my leg?“ asked Peter.

Jesus bent down and looked deep into Peter’s eyes. “Do you believe in me?”

“Yes,” said Peter. “I believe!”

Jesus laid his hand on Peter’s head. Peter felt something warm flow from the top of his head and down through his body like a wave of love and energy. He felt a tingle in his leg, and the pain went away.

“Take off the bandage,” said Jesus.

Peter peeled off the bandage. The cut was healed! The only thing left was a small scar.

“I left the scar so you will remember,” said Jesus.

“Don’t worry,” said Peter. “I will never forget.”

I closed the book for the night and looked at Levi who had unknowingly brought his hand up to the scar on his neck. I could tell that what I had just read had spoken to his soul, and brought clarity to his little heart. His eyes filled with tears as we talked about all of the scars on their bodies from surgeries, and how they told a beautiful story about what God had done in their lives.

As Levi let tears roll down his cheeks I saw him smile as I told him that those scars were proof of God’s miracles in his life. And he and Malachi must be pretty special to get THAT many miracles from God.

Our scars tell a story. They can tell a story of suffering, of pain, of great heartache. But they can also tell a story of a loving God, who was faithfully beside us along the way and working in ways we cannot see.

Blessings,

Leah