Fall is sneaking back in and we are loving it!

This time of year is always pretty busy for our family. The girls soccer season is well on its way and we are at the soccer field 3 evenings a week.

We have also been very active with the youth group lately, helping coordinate several events for the teens in the community. We started something called the “5th Quarter” where teens can come hang out at a bonfire on Friday nights after the football games until midnight. It is a late night but it is such a great opportunity to interact with the teens!

After nearly two weeks Malachi has been finally weaned from oxygen and holding his own! He is happy to have the tubes off his face and I am happy to have one less piece of equipment to lug around. When one of the boys is on oxygen I have to do a lot of math, calculating how fast they will burn through a tank and/or the portable concentrator battery and planning the trip accordingly. It requires a lot of preparation to leave the house for any length of time, and these last two weeks have been jam packed with specialist appointments.

Pure mischief in that photo.

When Malachi is going through a rough patch his brain will often be so focused on healing that his seizures decrease. Then as his health improves the seizures ramp back up and make up for lost time. We are in the seizure increase phase right now, trying to regulate them back to his normal.

This week we received the letter that we have been dreading regarding Malachi’s secondary insurance coverage. They have told us that he is no longer eligible for secondary insurance and he is not eligible for the special needs waiver for the state. This is pretty devastating for our family, as each appointment/medication/therapy/surgery/hospitalization copay & coinsurance adds up. For just ONE of Malachi’s seizure medications our portion after primary insurance pays is $300 per month.

I have contacted the Tennessee Justice Center and started the steps to appeal the decision. Hopefully we can find a solution quickly- his insurance is set to terminate this coming Thursday. I am pretty devastated by the whole thing, and it is requiring an immense amount of energy and thinking right now that I don’t have to offer.

After some God time this week I have decided that I am going to use this as an opportunity to work on my faith and let God do the fighting. He hasn’t failed us yet, and I am sure He already has the solution figured out.

Levi is still his wild little self. His vocabulary is changing and school has been so good for him in many ways. His imagination has especially been budding, undoubtedly fueled by being in a classroom with other preschoolers.

Tonight I was given an opportunity to share our testimony with a church here in Tennessee. As I sat down this week and prayerfully considered what the Lord was leading me to share, I allowed myself to mentally revisit some of our hardest moments from the last decade.

Moments when hearts stopped beating. Meetings with doctors and hearing devastating news time and time again. The dozens of operating room hand offs. The horrific nighttime phone calls telling us to come quickly.

But alongside of those hard memories there were so many God moments that came to mind. There were so many promptings from the Spirit, so many God conversations with strangers, and so many little miracles.

This journey has allowed the Word of God to come to life in my life. And I am forever grateful for the lessons He has taught me, even through the painful moments.

In Acts 4 we read about the arrest of Peter and John for sharing the message of Christ. In verse 13 we read “Now they observed the confidence of Peter and John and understood that they were uneducated and untrained men, they were amazed, and began to recognize them as having been with Jesus.”

The council commands the men to not speak of teach at all in the name of Jesus, but Peter and John answered and said to them in verse 19:

“But Peter and John answered and said to them, ‘whether it is right in the sight of God to give heed to you rather than to God, you be the judge; for we cannot stop speaking about what we have seen and heard.’”

What a wonderful compliment! For someone to “recognize them as having been with Jesus” simply because of their Spirit given confidence. As I read those words I started to wonder if the same thing could be said about us.

But beyond the compliment, verse 19 gives us a glimpse of the heart of these men. They couldn’t stop speaking about what they had seen and heard. What zeal and excitement to share the goodness of God with others!

Please pray for health over our family and wisdom as we navigate insurance road blocks.

Much love,

Leah

In typical Carroll fashion life has continued to go a little wayward. For the last two weeks we have passed around a sickness that has affected breathing with both boys.

Levi’s airway had not fully recovered from his airway surgery when he started symptoms. His breathing was already labored and worsened significantly for about a week and a half. He also ended up with double ear infections and some other secondary crud.

If I am being honest, I was incredibly discouraged, worried that his voice quality and breathing issues were going to be his new normal. If they stayed at that level than a new airway procedure was certainly in our near future. But after a visit with pulmonology, steroids, and lots of breathing treatments he has settled into a very audible voice and easy breathing at rest.

I am still hearing some breathing struggles when he is active but it isn’t as bad as pre-op. So right now we are in a safe range.

A quick praise report: Levi went for follow up X-rays last week and he no longer needs the boot! Thankfully the fracture was not on a growth plate. This weekend he has been limping a bit and complaining of pain in the fractured spot so I a little thrown off by his new complaints. But hopefully we are officially able to put that behind us.

Malachi made it through the initial symptoms really well, but in true Malachi fashion he got nearly better then all of the sudden worse. Usually that means something has settled in his lungs. He already has lung disease so he is very susceptible to things turning bad quickly.

He had spotty mild fevers for most of the week but they self resolved. But Friday afternoon he lost all of his color and dropped his saturations very suddenly. His heart rate skyrocketed and he was in clear distress. We put him on home oxygen and he required 4 liters to keep his saturations in the safe range.

We have the equipment at home to treat him up until a certain point so we are doing chest physical therapy with his vest, breathing treatments with a nebulizer, and running a cough assist machine every four hours. He is on an antibiotic for his lungs every Monday, Wednesday, and Friday anyway so we are adding in a few extra days to try to combat whatever might be brewing. Thankfully today he has been fever free and holding his own at 3 liters of oxygen.

We also got some very sweet smiles out of him today, which is a great sign he is headed the right direction.

Malachi is such an amazing kid and he does a great job communicating with us. Last time he needed the ICU I asked him if he was scared and he signed “yes”, which prompted us to take him on in. This round I have been able to isolate the main issues with his signs- Malachi signing no to ears, belly, peeing, etc. I am so proud of him for using his “voice”.

As I have stared at the monitors this week, watching his numbers ebb and flow, I couldn’t help but flashback to those early NICU days. There was so much helplessness in that setting and I never wanted to leave his side. Jake and I would stare at the monitors for hours each day, celebrating when he hit 100 on his saturations and worrying when we watched them dip.

I wanted so badly to do something to help, but interacting with Malachi would often overstimulate him and negatively affect him. I will never forget the moment I got to hold him for the first time, the team placing his wire covered body against mine and clipping his tubes to me. He was three weeks old and so small I could barely feel his little body…still less than 2 pounds. I remember seeing those monitors and watching his heart rate slowly start to drop into a comfortable range. I couldn’t do much for Malachi in that setting, but those moments we got to snuggle impacted us both in such a special way.

I have a love/hate relationship with medical monitors. They flash me back to so many relaxed moments and twice as many stressful ones. But having them here at the house is such an incredible blessing and helps me close my eyes with a little peace at night when he is sick, knowing they will wake me up if a problem arises. They are his voice and tell me so much about how he is feeling and what his needs in that moment may be.

I am trying to think of other things to share with you all, but unfortunately we have been pretty consumed in sickness and trying to get through each day. When we get into these cycles I can only focus on one hour at a time and the rest of life tends to stand still.

Levi was finally able to go back to school last week and is making such big gains, academically and emotionally. He even relaxed enough to take a nap with his class, which is huge!

Oh and Malachi is officially on billboards! Which is hilarious to me. They told us he can be found in Knoxville, Tri-Cities, and is coming soon to Chattanooga. Malachi is loving the attention, feeling like a celebrity.

While life has been a bit complicated still I can’t help but be incredibly thankful to be home. The month of August ended up being a really hard one for our family. And as hard things often do it exposed many of my inadequacies in all of my roles…as a wife, as a mother, and as the daughter of a King. But it is in those inadequacies that I am reminded of the grace and goodness of God.

Ephesians 3:14-19 For this reason I bend my knees before the Father, from whom every family in heaven and on earth derives its name, that He would grant you, according to the riches of His glory, to be strengthened with power through His Spirit in the inner self, so that Christ may dwell in your hearts through faith; and that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the width and length and height and depth, and to know the love of Christ which surpasses knowledge, that you may be filled to all the fullness of God.

I have been thinking a lot about love lately and all of the many ways the Bible talks about it. And what it means to be “rooted and grounded in love”.

Sometimes love is easy. And sometimes it is really, really hard.

I am continually thankful for the example Christ lays out for us, a love that surpasses knowledge and fills us to all the fullness of God.

1 Corinthians 16:14 “Let all that you do be done in love.”

This verse has been on repeat in my mind, mouth, and heart over the last two weeks. There are many things we do each day that are motivated by love. But what about the hard things, the uncomfortable things, the self-sacrificing things life calls us to do? Those are the moments that we get to display a love that we can’t manufacture- a love that is is a reflection of the Father’s love.

Are we pursuing a life rooted and grounded in love?

Please continue to pray over the health of our family. Pray for Malachi to continue to trend in the positive direction for healing and that we can avoid a hospitalization. Please pray for Levi to continue to be safe with his breathing, even when active. Pray for Jake and I as we navigate the unknown each day seems to be bringing. And pray that our eyes remain focused on God, even amidst the distractions around us.

Sincerely,

Leah