In today’s post you will see several Malachi photos, some with oxygen and some without. I am thrilled to report that we were finally able to successfully wean him off this week!

When Malachi is on oxygen there are a lot of extra moving parts. Insurance only allows 3 portable tanks of oxygen at a time that we use for car rides, saving the charge on the portable oxygen concentrator for our destination. These tanks empty pretty quickly so making sure to always have refills on hand is a priority.

The portable oxygen concentrator was a purchase we made with some grant money when Levi was young and still on oxygen 24/7. It has proven to be such a blessing! When he is running on 1 liter of oxygen the charge will last about 2.5 hours so we end up doing a lot of math in our head to make certain he won’t run out.

We need to monitor his oxygen saturations to adjust the oxygen liters as needed, so he is hooked to a hospital grade pulse-ox machine. This machine also holds a charge but dwindles quickly. We also have a respiratory protocol with his nebulizer, cough assist, and shaky vest every four hours when he is sick.

As you can imagine, staying at home is ideal! However, we have had such a busy few weeks that required us to be on the go. We made it work, but the mental exhaustion of keeping track of everything on top of regular medications and routines is thick.

Last Saturday was a perfect example!

The high school boy’s tournament soccer game was unfortunately scheduled on one of our busiest Saturdays so Jake was committed to attending that.

While he was at the game, I was with Levi and Malachi at the wedding of a friend whom we call “Big Levi”. My Levi was the ring bearer and did such a great job! I tried to plan out Malachi’s oxygen needs but definitely failed and had to head to the car early to get him on a larger tank. We don’t have a wheelchair accessory that holds the tanks and they are huge.

Jake and I met up after each of those events and hopped straight back into the car to go to Knoxville to speak at a Make-A-Wish fundraising banquet. The hotel that held the event had generously donated an overnight stay in one of their rooms to our family and we decided to make an adventure out of it!

On a total side note, you would have gotten a good laugh watching us Carrolls try to be cultured for the night. It was Kentucky Derby themed and we spent most of the evening trying to figure out which silverware to use for each food item presented. Levi has become quite the eater and will try just about anything. He knocked out a plate of Russian food at the wedding for lunch and a Kentucky Hot Brown with grits for dinner. But his eagerness to try new foods had him sticking his finger in the pimento cheese and taking a big lick from the appetizer our table of ten was supposed to share. Thankfully the other guests were very gracious and kind.

Both of the boys were giddy with excitement to be in a hotel. We watched a family movie and then two out of the four of us crashed after our long day. Malachi’s supersonic hearing and being in the hotel was a bad combo and he couldn’t calm down enough to sleep.

We have spent all week trying to catch up on some energy! The weather has been beautiful and the playground has been our happy place. One of my favorite things about this time of year is watching the freckles pop out on the cheeks of both of my boys.

We also got a chance to see the northern lights from our front yard! It was such a fun surprise!

School is about to come to an end and we are eagerly awaiting the family time that summer will bring. June will be a medical month for us, catching up on the boys 6 month specialist visits and Levi’s Cincinnati surgery. But we have a free and clear July to look forward to!

About a week and a half ago I took Malachi to a new therapy center in a neighboring town for an evaluation for services. He only does hippotherapy right now and the more he is growing the more tight his muscles are becoming. Now that we have insurance stabilized I would love to get some extra stretching sessions in for his growing body and to get some extra eyes on him to find other ways we can increase his quality of life.

He was still on oxygen at the time of the appointment and was having an uncomfortable day, but we had waited on this appointment for a long time and they have a very strict cancelation policy so I figured we would just try to charge through.

As soon as we entered the building I felt my nerves start to stir and anxiety took over. We sat down to fill out paperwork and Malachi went into a large seizure in the tiny waiting room and I felt this innate desire to protect him from being watched in his seizure but not knowing the building to be able to figure out where to take him. I usually cover his shaking eyes with one hand as I wheel him somewhere mid-seizure but when I have the oxygen concentrator I don’t have an extra hand to do that with. I was overcome with a feeling of helplessness and cringed as the eyes of all of the employees behind the desk and the other waiting room moms fell on Malachi’s contorted body. He ends his seizures with a deep, aggressive coughing session and even more eyes drifted our way.

The therapist came shortly after and wheeled us back to an eval area and I could feel the tears brimming in the bottoms of my eyes. My inner voice was harsh, “Why are you being so ridiculous??” As I desperately tried to get my emotions in check. She had me lay him down on the exam table for measurements and within 30 seconds Malachi threw up everywhere. We don’t lay him down flat on his back for fear of aspiration, and I watched as he choked on his vomit and started panicking, unable to breathe. I scooped him up and tried to get his airway clear and he finally took a deep, wet breath.

By the time we left my emotional reserve was gone and I felt a mourning creeping into my heart. It wasn’t the events of that hour specifically that triggered me but rather it was the memories that flooded in from the early days in those waiting rooms.

When Malachi was little I entered those waiting rooms with such incredible hope for healing. I dreamed of Malachi taking those first steps. I dreamed of audible words exiting his mouth. I craved signs of progress towards “normal”. It was a place where we could work towards the miracle I was sure was coming.

Today my goals in that waiting room have changed a bit. Instead of signs of progress I crave comfort and relief for him from his tight muscles. Instead of those huge jumps in abilities I just hope that we can do something that will enrich his life even if it is ever so slightly. We haven’t given up on the miracle….but I have learned that the miracles for Malachi aren’t just in the big things that take our breath away. Every day, every smile, every tiny step of progress is our miracle.

As I drove home last week with tears in my eyes I realized that my heart had just felt these words from Proverbs in a profound way.

Proverbs 19:21 “Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.”

The Lord’s purpose.

The Lord’s purpose for Malachi’s life is so much bigger than my plans. What a fool I am to think that my plans are greater than His.

And today I am thankful for the hope that brews in my heart.

Much love,

Leah