Brotherly Love

This week has been filled with heartwarming brother moments, medical frustrations, and our typical weariness. Let’s start out with a feel good and talk about the brotherly love.

 

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There have been several times this week that I have felt my heart melt in ways I didn’t know were possible. Levi has become infatuated with Malachi and wants to be close to him at all times. The new chair at the office is just large enough for them to snuggle in and Levi is constantly trying to find his way in it to sit with Malachi. Every morning they sit and watch cartoons together or play with a toy.

Levi can’t always activate Malachi’s big boy toys like Malachi; when he gets frustrated by one he will reach over and grab Malachi’s hand and try to get him to show him how, which Malachi absolutely loves. It is so sweet getting to see Malachi be the big brother and to see Levi look to him for guidance. I wish the world could see Malachi through the eyes of Levi!

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Malachi treasures their cuddle time and will even give Levi kisses when they are cuddling. Here is a video:

Levi has been “kissing” Malachi back but doesn’t quite have the grasp of what a “normal kiss” is like- he mimics what Malachi is doing and licks Malachi’s forehead. Then he turns and smiles at me, so proud of his gesture.

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The pureness of their love has made me an emotional mess this week. But those are the type of things I will gladly give my emotions to.

Here is another sweet video of Malachi laughing at the cuddles:

We had a whole slew of appointments this week to navigate around. Dentist, Gastroenterology, feeding therapies, pulmonology, physical therapies….

Malachi has a loose tooth which is an interesting little adventure. He only has one real tooth- all the others have been whittled down and crowned due to lack of enamel. As soon as the loose tooth gets a little looser we will likely yank it to keep him from swallowing it/choking on it accidentally.

Here is a photo of him and daddy playing some soccer this week in his Wild Raptor!

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The GI visit for each of the boys went well and we have made some significant changes in each of their feeding regiments. As usual the doctors want Malachi to plump up a bit more. I have been trying so hard to help Malachi get through the tube anxiety and was able to do one pump feed every day this week.

Levi is one plump little one year old and looking more and more like a big boy these days. He is nearly 21 pounds and big brother is weighing in at 27 pounds.

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This week we tried some sensory play in some mac and cheese…it didn’t make it into his mouth but progress nonetheless.

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Levi also had a pulmonology appointment to get his synagis shot (medication that lessens the effects of RSV if he gets it). These appointments are extremely fast since we don’t have to see a doctor, it is administered by a nurse. The appointment was at the new outpatient center I was telling you about previously. We made the hour drive, checked in and watched our name like a hawk on the screen. One by one every other name disappeared from that screen yet ours remained. I thought “Surely they didn’t forget about us?” seeing as I was staring at the same screen they were.

But alas, we were forgotten once again. I know I have shared this with you before, but there are few things that make me more emotional than being forgotten at specialist appointments. It is so much work to get the boys loaded up and on time to doctors visits and seeing the efforts to respect their time not reciprocated does me in. It had been over an hour and both the boys were cranky, VERY stinky, and momma was emotionally fragile. I fought back tears during the 5 minute appointment feeling more isolated than ever before…even the medical professionals just don’t seem to get it…the difficult nature of our every day.

Of course, the emotions from that carried over into the rest of my week and put me in a dark place. And oh, how dangerous those dark places can be. Jake was gone for two days on a church retreat leaving me with my thoughts.

One of the biggest thought consumers these days has been what the future looks like for Jake and I. Someone posted this picture on Facebook this week and it overwhelmed me a bit.

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This picture portrays the natural route that many parents take. But our picture is meant to be a little different, and sometimes the unknown of that picture attaches itself to my thinking.

Will Malachi still be alive when we are old? And if so, how will we take care of him? We are physically already starting to feel the weight of his care. The idea of an organization having to take on his care when I am unable to makes me nauseous. But so does the idea of having to bury him as a child. I am sure you can see the helplessness of the thinking cycle I get stuck in.

Will we ever get to enjoy grandchildren? We have been recently told that Levi’s brain damage is likely more extensive than we realize. While I choose to believe that God will make his brain whole, there is that realistic side of me that wants to walk down the “what if” paths.

Faith has to be different for Jake and I.

I remember bringing Malachi home and thinking that he was going to be 100% healed, and that no one would believe how healthy and typical he was based on his medical history. We were simply waiting for our miracle, but we just knew it was coming any day.

We still firmly believe that God is able. And we know God can. But we have had to deal with the sadness over the differing timelines we seem to have with God. There have been times that has made me bitter. There have been times that has devastated me.

But these disappointments have transformed my faith. And it has reminded me that we are simply passing through this world, headed towards a more beautiful one.

I read a quote this week and it has played on repeat in my mind. While I find ways to apply it to my motherhood journey I feel that many of you will be able to do the same in your own ways.

“One of the biggest sources of conflict between you and your kids is when they refuse to bow down to your idols.” -Dan Allender

I had to recognize that “normalcy” for my children had become an idol. I find myself getting so angry each time Malachi has a massive seizure, or Levi has to be turned up on his oxygen. It is a reminder of failure and unanswered prayers. The disappointment that hits each time that state of perfection isn’t reached drives a wedge in my relationship with God.

So back to thinking about the boy’s future…that image of “what it should be like” I now recognize as an idol. When we start to think we can whine to God about what our life should be like, we are playing a dangerous game with our faith.

I am also working on releasing my idol of control. And could use some prayers specifically that I find peace in trusting God with the future of my family.

Please also pray for both of the boys. They are both having some intense coughing fits but no other signs or symptoms for now. We have another wild week ahead and can’t afford to add sickness to the mix!

Much love,

Leah

He’s In The Details

Another whirlwind week down in the books for the Carroll crew! Levi’s pulmonology appointment went decently on Monday and the doctor is still pleased at the direction his airway is going. His Cincinnati and Chattanooga specialists are both eager to take a look at his vocal cords to see if there is any new movement, but I am not in a rush to let them take a look. Either way we have bought some time as we have to wait until after his March sleep study results to come back.

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The hospital in Chattanooga recently opened an outpatient center and almost all of his specialists moved to the new building. It is so nice being able to be in an ER free setting for germ purposes, although they decided to put a general care office on the second floor of the building meaning we share elevators with sick kids. Ahhhh rats. But they have some pretty cool things for the kids to see while they wait.

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Tuesday we loaded up and made the drive to Nashville in preparation for Malachi’s Wednesday appointments. It is only a 3-4 hour drive but when you run on zero sleep all the time it is a dangerous situation to be in the car that long. Jake was able to make the trip with me and having some help/company made the trip actually enjoyable. And Malachi is always so happy to go on these road trips and stay the night in a hotel. He giggled uncontrollably for 30 minutes when we all laid down in the hotel bed…and again when he woke up and realized he was still at the hotel on an adventure.

We always try to jazz up our traveling appointment trips with something fun for the boys. We had talked to Malachi about a trip to the Aquarium restaurant but the weather wasn’t so bad so we presented the option to go to the zoo. Malachi signed YES YES about the new option so we bundled up and headed that direction.

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At the Nashville zoo they have a kangaroo enclosure with a walking path through it. The kangaroos come right up to you and you can touch them! Both of the boys really liked seeing the animals up close.

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After our zoo trip we headed over to the hospital to meet with Malachi’s orthopedic surgeon. Out of all of his surgeons, this one is probably our favorite! He shares our vision for Malachi’s life to be all about comfort and quality. We simply want Malachi to be happy and pain free. While we feel that right now he is pain free, we have to assume that his body will take the same route that most kids with his severity of cerebral palsy take and make plans for his future.

Malachi is likely to develop some very severe scoliosis which will make it difficult for him to breathe. Many kids like Malachi end up needing to have rods put into their backs  or spinal fusion surgeries. We also know that both of his hips are out of socket and there is a 50% chance that a big hip surgery is going to be needed. We want to work with both the orthopedic surgeon and the spinal surgeon to make sure we do those surgeries in the correct order. So we don’t have to do either of them more than once.

Hopefully these surgeries are a long ways away, and we are still praying that God preserves Malachi’s body and keeps him pain free!

The post-op part of the appointment went well and he is very pleased with how Malachi’s feet look post op. We will meet with them again in June to start making plans for any future surgeries.

Thursday Jake headed back to school. Malachi also went for a few hours on Thursday and Friday- he really enjoys going and seeing his friends but classroom sickness/germs has been keeping him away. His teachers and I communicate every day and they let me know when they think it is “safe enough” to send him. I am so grateful they are willing to work with us!

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When I dropped him off I couldn’t help but notice how much older he looks these days. He will be turning 6 years old in less than a month…crazy!

Malachi is doing so much better on his CBD oil. He is at the full recommended dosage and we are seeing some pretty big changes. Here is the breakdown:

  • He is having less seizures, having two small ones a day instead of his regular eight a day but they are short and not very severe.
  • He is wayyyyy more emotional than before, and the things that used to trigger seizures now trigger emotional breakdowns.
  • His thinking speed is much better than before and he is able to respond much more quickly to our questions with his signs.
  • He is now a chatterbox! This change has been bringing a smile to my face…I love hearing his voice.
  • His tone is much floppier than before, which means his tight muscles are relaxing on the CBD. This is good for his comfort and spasticity but he struggles to keep his head up.
  • His eyesight has improved a whole lot while on the CBD. We can tell by the way he is actively leaning forward to look at things, showing an interest in anything near him. This is a great change!
  • His brain is relaxed enough to allow him to sleep more. He is now sleeping 6 hours a night instead of his normal 4-5 broken hours and he is taking a nap each afternoon.

His teachers have definitely noticed the change in him and were pleasantly surprised by how well he is doing! It seems we are finally through the adjustment period his body needed to process the change. We are going to start talking to the epileptologist about decreasing his other seizure meds and eventually trying to get him off of one of the anti-convulsants.

This week is a doozy with 9 appointments in four days. We are hoping for a problem free, bad news free type of week.

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Jake and I are continually reminded of how blessed we are. It is undeniable how much God is holding us in the palm of His hand. Early on in our marriage time and time again God would meet our needs before we even knew we needed them. Or we would be conversing about how we needed a washer and a dryer and our phones would ring within the hour with someone asking us if we had a needed a washer and dryer set. We have learned to not believe in coincidences but instead to give credit to God for his providence in our lives.

This Christmas we were gifted some money from some very generous friends and family to go towards the boys care. We talked this week about things that would make Malachi’s life easier and the only thing we could come up with was another PPod chair. Everything in special needs land is insanely expensive and this particular special needs bean bag chair costs a little over $2,000. We applied for a grant earlier this year to get one and Malachi absolutely loves it. He sits very comfortably in it and can easily play independently with his toys.

The only problem is that now that I am working in the church office we need a supportive seat for him to sit in during my office hours. On Mondays I load up the PPod chair and on Fridays I take it back home so we can have it at home for the weekends. It is incredibly large and annoying to haul back and forth each week so Jake and I talked about the possibility of one day finding another one to leave in the office. Obviously paying retail is out of the question.

On Friday I just so happened to pull up Facebook marketplace, something I have never done before. And lo and behold there it was! Someone had JUST posted (an hour and a half before) this exact special needs bean bag seat for cheap and they were only an hour away.

After running through my germaphobe checklist it passed with flying colors (the mom selling is also a self-professed germaphobe) and I made the drive Saturday morning. The chair is the largest size they make so it is ridiculously massive and hot pink but it will work for keeping him comfortable while I am at work.

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God is so good to us- it always amazes me when I see how He loves to work in the details of our lives as much as the big things.

I started a new series with the children at church on Sunday mornings and we are covering Moses and the Israelites. I spend hours in the Word each week preparing for the youth and children’s lessons, continually praying that God will use me as His mouthpiece for what they need to know. Each and every week God is not only preparing me for the lessons He wants me to teach, but also teaching me things through those scriptures as well!

Today we covered the story of Moses and the burning bush. As I prepared the lesson I couldn’t help but relate to Moses on so many levels. God was asking Moses to do something that he truly did not want to do. He didn’t feel qualified, prepared, or eager to do the things God was asking of him. Been there, done that, got the t-shirt.

Exodus 4: 13  But Moses said, “Pardon your servant, Lord. Please send someone else.”

Oh what a relateable quotoe for me. God has called me to a role in motherhood that I was not qualified, not prepared, and not eager to do. Like Moses, I could list excuse after excuse as to why God should choose someone else to do the job.

But the reality is that God knew me better than I knew myself and CHOSE ME for this task as Malachi and Levi’s mother. While I didn’t have a burning bush experience like Moses, I was asked by God to do things that are out of my realm and comfort zone. With that request from God there was also an acknowledgement from Him that it would not be an easy calling. It would be full of obstacles, disappointments, and battles.

When Moses expressed his fear in his mission God gave him an arsenal of tools and signs that would help him through it. He even gave him Aaron, his brother, as his helper.

Reading that story was a needed reminder to me that God will never call us to something without giving us the tools needed to succeed. He will never request something of us that is too much for us to handle. Yes, the journey may be difficult, long, and non-textbook but every step is ordained and redeemed by God if we stay connected to Him through it.

He will give us the impossible, but then prove to us that that word doesn’t exist in His dictionary. I don’t know what mission God may have called you to. I don’t know if your reaction was like mine, or even like Moses’s. Maybe you are still burdened with those feelings of inadequacy.

Let me remind you that you have been called BY NAME for that very mission that you are facing, for that very task. There is a strength and endurance that God sees in you that you likely don’t yet see in yourself. Let me encourage you this week to trust that God is equipping you. And let me also encourage you to stay closely connected to God through that journey so that He can make your impossible His possible.

All He wants is a willing heart and ears that will listen to His still, soft voice.

And a total side note here….I am so blessed to tell you that one of my little ones at church asked Jesus into her heart today! To God be the glory for the great things He is doing!

God bless,

Leah

 

Happy New Year

We made it through another sickness y’all! I am overjoyed at the way their immune systems have been handling germs. Don’t get me wrong- those days of sickness are things nightmares are made of, but we have been able to stay away from the hospital and are so thankful. We had lots and lots of baths this week as we dealt with drainage induced vomiting.

 

Our Christmas was a casual and relaxed one with us all staying in PJs most of the day. Malachi and Levi got to open a few presents each- Malachi’s favorite was a switch adapted alligator and Levi’s was a Solo cup that we wrapped up.

Just look at that smile!

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We went over to the church that evening and set up an obstacle course for Malachi to drive his Wild Raptor through. Jake and I are insanely competitive so we took turns driving him through the course seeing who could do it the fastest. Malachi loved every minute of it!

Here is a sweet video of Malachi’s joy on Christmas morning:

I know it seems silly, but one of the highlights of the week for me was actually being able to cook meals. On typical weeks we are so go go go with appointments that spending an hour prepping a meal is just not logistically possible. It felt good to cook again!

On Wednesday everyone was feeling well enough for us to go on a little adventure. Malachi loves to go bowling and thinks it is fun to push the ball down the metal ball ramp so we headed to the alley for a quick game. He is still working on the concept of taking turns and signed “more” every time it was Jake or I’s turn to bowl. And Levi was a supportive cheerleader for us all, squealing with joy each time we walked back towards him.

We had some family come down from Ohio for a quick visit at the end of the week!

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Then came Friday. Oh Friday. We usually do a lock-in for our youth group on New Year’s Eve and this year I decided to shake things up a bit by renting the trampoline jump park in Chattanooga. Jake and I rock, paper, scissored to see who would have Carroll kid duty (Jake) and who would have church kid duty (Leah). We ended up with 75 teenagers and it was a wonderful time, but nothing will wipe out your energy faster than a lock in! I am still trying to catch up on some much needed sleep before Jake has to go back to work this week.

We have brought Malachi’s CBD dose almost to where the epileptologist wants it to be. He is still very lethargic as he adjusts to the increases but it is most definitely helping his seizures as well as his sleep. He is only having about 2 seizures a day and they are very slight. I am curious to see if the full dose will completely eliminate those.

We are back into medical land this week but thoroughly enjoyed the nice break the holidays brought us. Tomorrow we will see the physical therapist for both boys and then head down to Chattanooga to see Levi’s pulmonologist. Malachi has to be back at Vanderbilt on Wednesday so we have decided that all four of us will make the drive this time. We are planning to go up the night before so we can take Malachi to a restaurant called “Aquarium”. It is a restaurant that is completely surrounded by giant fish tanks and has very low light for Malachi. We usually take him to the Rainforest Cafe but we don’t think Levi can handle that one at this age haha.

I had the opportunity to do a devotion with each of the age groups represented at the lock in and thought I might share those thoughts with you all too!

There is a story that many of you probably remember from Sunday School about Jesus washing the disciples feet. It is found in John 13 and is a beautiful reminder that Christ did not come to be served but rather came to serve. But there is more meat to the story than just that wonderful lesson.

3 “Jesus knew that the Father had put all things under his power, and that he had come from God and was returning to God; so he got up from the meal, took off his outer clothing, and wrapped a towel around his waist. After that, he poured water into a basin and began to wash his disciples’ feet, drying them with the towel that was wrapped around him.

He came to Simon Peter, who said to him, “Lord, are you going to wash my feet?”

Jesus replied, “You do not realize now what I am doing, but later you will understand.”

“No,” said Peter, “you shall never wash my feet.”

Jesus answered, “Unless I wash you, you have no part with me.”

“Then, Lord,” Simon Peter replied, “not just my feet but my hands and my head as well!”

10 Jesus answered, “Those who have had a bath need only to wash their feet; their whole body is clean. And you are clean, though not every one of you.” 

This scene takes place the night before Jesus was crucified and they were at the Last Supper. The disciples didn’t know that this would be the last night they would spend with Jesus in his pre-resurrected body. I can just feel the awkward tension in the room as they witnessed this man, the promised Messiah, bend down and wash their feet. What a humbling moment that must have been. 

Then the silence is broken by Peter. The conversation that Jesus has with Peter is such a rich one and took me reading the verses several times before I truly felt I had grasped its meaning. 

“Unless I wash you, you have no part with me.”

When Peter hears Jesus say this his reply seems dramatic as he tells Jesus to wash all of him, desperately wanting to be connected to Jesus! But it is Jesus’ reply that really made my mind go into overtime:

10 Jesus answered, “Those who have had a bath need only to wash their feet; their whole body is clean.” 

Process that sentence for a minute. What does it mean?

Who are “those who have had a bath”? That represents people who have a personal relationship with God. When you ask Christ into your heart you are washed by the blood of the lamb and are made white as snow. In Isaiah we read: 

“Though your sins are like scarlet,
They shall be as white as snow;
Though they are red like crimson,
They shall be as wool.”

Salvation washes us, but because of our sinful nature we continue to get dirt on our feet. We trudge through things we shouldn’t, each step coating us with things that are not of God. 

That night Jesus was trying to teach His disciples that even though they have been washed they must make a concerted effort to remember to wash their feet- not just once but over and over and over again. We continually need to recognize the dirt that we pick up on our walk through life and spend time with Christ, allowing him to wash it from us. We need to acknowledge our sin and the marks it is leaving on us and repent, asking him to remove those struggles from us. 

So many times I hear comments that cite the phrase “those ‘perfect’ Christians”, when in reality we are just as flawed as the ones that don’t know Christ. We all have dirty feet. But what separates us is the ability to recognize the filth in our lives through the power of the Holy Spirit and the desire to be made clean, knowing that the dirt is hindering and distracting us from our relationship with God. 

When was the last time you asked Christ to wash your feet? When was the last time you went to Him, acknowledging your need and desire to be washed and made white as snow yet again? 

If you get time and need a great devotional I want to encourage you to read John 13! It is getting late and my brain is getting fuzzy but there are more thought provoking things in that chapter.

Please pray for traveling mercies for our family this week as we head to Nashville. Please also pray for our transition as a family as Jake heads back to work. It is always such a nice break to have him home with us all day every day and going back to solo days with the boys is always a challenge for me. 

2018 was a year of challenges for our little family, but it was also rich with blessings from God. We are praying that 2019 is a year of miracles and healings for both of our boys.

Much love,

Leah 

Merry Christmas!

Let’s start with the highlight of our week: Malachi’s new Wild Raptor:

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On Monday morning Malachi met with the robotics and mechatronics team that adapted and designed his special Christmas gift. They truly went above and beyond what we expected, not only making it remotely controlled but also adding a speaker, lights all around the bottom, and a dinosaur theme with a working dino head that he can work with his foot to roar. They put so much effort and time into making it perfect for him!

After the last sensory overload experience I decided to tell Malachi as many details as possible so he wouldn’t get overwhelmed. We watched videos of other “Wild Thing” cars so he could get used to the noise and made it the topic of conversation as much as possible.

When we got there and I asked him if he wanted to ride in it he let out a ROAR and was definitely excited to try it out. He made it a minute or two on his test drives and the overload was too much and he started to get emotional. But even though he was crying he was signing for “more”. It was like he really wanted to ride it but his body wasn’t agreeing.

We took it to the church later that afternoon and gave him is recordable switch programming one button to say “Stop Please” and the other button to say “More Wild Raptor Please”. He felt a sense of control and after 5 minutes we took away the switch and he was totally fine, giggling like a wild man.

Here is a video for you:

He LOVES it! He wants to ride it every day, which we will definitely be able to do when it warms up. But for now we have to stick to sneaking over to the church gym when it is not in use to get some hours logged.

The local news covered the story and did a great job! I have posted the video on my Facebook page if you would like to check it out.

Our week to a turn towards chaos on Wednesday when both of the boys woke up coughing. My heart sank when I heard Malachi hack, then again when Levi woke up doing the same thing. As you already know, sickness is tough on both of our warriors and the constant lingering fear of a hospital stay is always present. We tucked ourselves into the house for the rest of the week which has it’s pros and cons.

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One of the biggest pros was that we got to justify canceling all of our appointments for the second half of the week, including Levi’s hospital stay for a sleep study on Thursday. Ahhh shux (hope you read that sarcastically). And “unfortunately” they are booked until March so we will have to wait another three months to try again. Oops. 😉

But the cons nearly outweigh the pros as colds lead to sleepless nights and lots of vomiting for both boys, as they both don’t know what else to do with congestion but vomit it out. Levi is throwing up about 18 times a day right now and that is much better than the last few days. Really being home is the only option- we need to have access to mops, changes of clothes, and the bath tub.

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We are on day 5 and still not out of the woods yet. We are keeping a close watch on their temps; that is typically the first indication of a secondary infection like pneumonia so please keep them in your prayers.

We were able to cram in some busy days on Monday and Tuesday before the sickness hit with several appointments. Malachi also got fitted for his new AFO (leg braces)- we went with Superman themed ones this go around. We will head back to Vanderbilt on January 2nd to see the surgeon for a follow up and we are hoping he will be cleared to take the casts off and go into braces full time.

Levi never lets me mess with his mouth but I happened to be able to snap a pic this week of two of his four teeth. He was mad at me because I made him try some blackberry jelly.

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Christmas…oh Christmas. Jake and I were laughing a few minutes ago reminiscing about the last few years and the adventures Christmas day has held. Last year we were in a hotel room in Cincinnati trying to stay close to Levi in the NICU. It is incredible to me the details I remember from that day. I hope that time will fade those for me. But the highlight of that day was getting a call from the Ronald McDonald House saying they had an opening. It would become our home for the next 4 months.

The year before that we had sold our home with the dream of building Malachi a handicap accessible one. We were vagabonds for the time being until our rental opened up, living with relatives for a few weeks in Ohio then living in an RV “down by the river” literally. We laughed at the comedy in that little RV, trying to make life with a boy in a wheelchair work in there.

Needless to say, we are thrilled and aware of how blessed we are to spend this Christmas at home together. I almost hesitate typing that as we continue to fight sickness, but maybe proclaiming a stress free Christmas will make it so.

Here are a few more pics from last week’s debut as horse and donkey in the church nativity:

Spiritually speaking, I have been alllllllll over the Bible this week. Jake is off through the holidays and when that happens we are each able to carve out some solid devotional time. I study my Bible every week when I am preparing lessons for the youth and children, but devotional time “for me” is also so important and necessary and something I often don’t get enough of.

This week the verse that is playing on repeat is Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” I think I have talked about this one recently, but this week it has been pressing on my heart in so many ways.

This sentence comes out of the mouth of Joseph, who had endured some horrible life experiences leading up to this moment. His testimony is a beautiful one that has always been an encouragement to me when I am feeling betrayed, alone, forgotten…it hits so many emotions that I can relate with! If you want a devotional to dig into, the Joseph story is always a good one; it starts in Genesis 37. If you aren’t a big Bible reader the book “Detours” by Tony Evans is a thought provoking study we just completed in our Sunday School class.

But there is something in here that my mind keeps drawing to.

“You intended to harm me…” We live in a fallen and ugly world. While our mouths speak love and compassion our hearts and minds often do very different things.

I have been thinking a lot this week about the past. About all the times I can look back at and see intentional efforts to harm me…my reputation, my self confidence, my walk with the Lord, my relationships with others. My past, as I am sure yours may be as well, is littered with people who have tried to make me feel “less than”.

When I look back at those early years I see that they had success at making me believe that lie. But when those intentional attacks hit me these days my take on it is so different…

“…but God intended it for good.” When I look back at those past hurts I see how beautifully God orchestrated them into blessings. And through them my walk with God grew stronger and more concrete as I watched His providence reign again and again.

Now when those intentional harms come at me I don’t panic like I used to as I know that God can take even the ugly and create something beautiful from it.

I don’t know who might be the focus of  your “You intended to harm me…” moment. It might be a family member, it might be a coworker, it might be a friend, it might be a stranger. But choose that believe that through that attack God will intend it for good. Give it over to Him and allow Him to create a masterpiece. God can re-direct ANYTHING to glorify Him. Do you trust Him to do that?

Please continue to pray for my boys this week, that we breeze through the rest of this sickness without complications.

We pray that your Christmas is full of God moments and reminders of how much He loves you.

Merry Christmas friends,

Leah

 

Joyful, Patient, Faithful

The boys had a special visitor come by the office this week and they got a chance to say hello.

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Levi is very stranger=danger these days so it went about as we expected.

This is the interesting part…Jake and I have decided not to do the whole Santa Claus concept with our kids. We are not against anyone that does, we just choose not to for personal reasons. But when Malachi saw Santa on Monday he got SO excited and his face showed recognition for his name, which completely surprised me. The only context he has for Santa is them talking about him on the cartoons he watches. It was just more affirmation to me that he is a smart little boy.

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Most of our specialist doctors see the boys on either a 3 month or 6 month rotation. Between the two boys we see more than 18 specialists. We cram as many into June as possible but that means we end up with a whole lot of December appointments! I think if I wrote out our week hour by hour you all would be fascinated at the amount of things we cram into every 24 hours.

Here are some highlights:

Monday we headed to the hospital to change out Malachi’s feeding tube. It was a long 6 weeks with the original tube which had an insanely long extension dangling out of it at all times. It always got caught on things and nearly pulled the whole mechanism out of his tummy multiple times. We successfully switched over to a mickey button which is about the size of a nickel and stays out of the way. Lifting him up for the first time after the switch was so freeing, as I didn’t have to make a plan for the dangling tube before moving him. Malachi has handled the switch well. We have not used the tube a single time since the switch but at least it is there as a plan B in case he gets sick.

Tuesday we headed back to the hospital for Levi’s appointments. We started with his synagis shot from pulmonology then headed over to neurology. It was a very long appointment, but for specialists like these you want them to be thorough. He examined Levi and we talked about what milestones he has hit as well as which ones he has not. The neurologist is extremely honest which is something we have always liked about him. He said that he is pretty confident that Levi’s brain damage is more extensive than we realize. He was very eager to do another MRI, but I have never been a fan of doing imaging unless it will change our course of treatment. I don’t like doing things to the kids for curiosities sake. I did agree to do one after Levi turns two so we scheduled that for next December.

We also talked with both the neurologist and the epileptologist about Malachi’s new med and how he is reacting to it. We found out that Malachi is the first and only patient in Chattanooga (well, from the children’s hospital) that has started the medication so they are very curious to see what happens with his seizures. Malachi is still having a hard time adjusting to the tiny dose we started him on and is very lethargic and sleepy. I asked if we could postpone the increase and they were okay with postponing another week. He has had a slight decrease in his seizures and the ones he is having are much less aggressive, so that is good.

Friday we headed back to Chattanooga but this time for something fun! Every year a local organization adapts lots and lots of toys to work with switches like Malachi’s. They have a big giveaway and let anyone in the community come and pick out a toy to take home. Malachi had to miss it last year because we were in the hospital in Cincinnati with Levi. But the year before I remember how much fun he had trying out all the toys and choosing his favorites. Here were some photos from that year (2016):

Look at that chunky monkey!

I talked to Malachi all week about going to pick out a toy and he would always sign YES, ready to go then and there. It was pouring down rain on Friday and making the two hour round trip drive for a toy sounded awful but I had made him a promise so off we went. We got there and started trying out the toys and then the chipmunk happened. One of the toys was a tiny little chipmunk and when you pushed the switch he danced and sang in a chipmunk voice, but was very loud. Malachi did not see that one coming and it absolutely terrified him. He started crying and signing NO so I turned it off as quickly as possible.

That was it…Malachi was done with our toy adventure. He just couldn’t recover from the scary chipmunk and kept signing NO NO NO. I would show him a toy and say “Would you like the tiger?” and he would sign NO. When I asked him if he wanted to go home he very adamantly signed YES YES YES with a frown on his face. I picked out the toys I thought he might like and we headed back toward home.

In between all these appointments and adventures I have to find time to make sure both boys are fed and happy. A lot of times that means we find a hospital corner or a parking lot somewhere and I get Malachi out and sit in the passengers seat with him to feed him. As I sat there with Malachi I started to get so angry. Not at Malachi, not at myself, but just at this crazy life. My motives for the day were pure…yet the outcome wasn’t what I had hoped it would be. Those unmet expectations get me every time.

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The kids semi-successfully had their big debut performance in the church play this evening. Levi was a whiny donkey, crying often but not completely losing it. Malachi did great as a horse and was convinced that the clapping from the audience was for him and him only. He kept leaning his head forward, trying to get a glimpse at the audience. It was really nice to see them be included in the performance. I will try to get some better photos for you for next week but here are a few:

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Tomorrow morning we will be meeting with the high school class that adapted Malachi’s “Wild Raptor”. I am SO EXCITED to see his reaction! They facetimed me this week so I could decide if it was safe enough (it is VERY fast and the remote is sensitive) and I couldn’t help but laugh afterwards thinking about how much it was going to blow his mind. I can’t wait to share the video with you next week!

I have felt like that Bop-It game this week, with things coming at me from all angles bopping, twisting, and pulling me into different emotional directions. There have been so many beautiful moments, friends stopping by with gifts for the kids, kind strangers buying our dinner, moments of uncontrollable laughter. There have been moments of isolation, frustration, hopelessness, and defeat. This has been one of those weeks where I have had to focus really hard on choosing to be joyful.

I have had two verses on auto play running through my head all week…

Philippians 2:3-4 “Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking at your own interests but each of you to the interests of others.”

I have really been trying to evaluate my selfish tendencies. We all have them…those moments when it is easier and just plain nice to put ourselves before others. But by professing to be a child of God I am professing to do things differently than the world does them. And fighting our nature towards selfishness if one way to try to do that.

When I am racing towards the door trying to beat another person in so I can be first in line…then this verse played in my mind… “Do nothing out of selfish ambition- value others above yourselves”. So instead of continuing on my well earned path at being first in line, I decided instead to hold the door to allow them to walk through it first. Oh boy, did that one stress me out. But we are called to those moments of self-denial so we truthfully should be seeking opportunities like these.

Time out for a minute: that last paragraph sure sounds like a brag moment, which I hope you understand it most definitely is not. I am actually ashamed that my nature doesn’t do these things automatically and I have to think so hard about them to make them happen in my life. It is a true challenge for me.

The second verse is Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.” Each chunk of this verse could be a devotional all on its own! But as I have recited this in my head hundreds of times this week I can’t help but look at the transitional nature of this verse.

The word hope has been floating through my heart this week as I process what it looks like in my family. Hope is one of those emotions that is very hard to describe. The last time I felt full of hope was almost exactly one year ago as I flew Levi from Chattanooga to Cincinnati for his experimental procedures.

The interesting thing about hope is that it literally grows within you. You can almost feel it growing larger and larger, leaving you with an airy excitement as you think of all the potential things that the hope could bring. Like the verse mentions, it brings with it the feeling of pure joy.

But what if someone or something pops that bubble. That same night that I was filled with an enormous amount of joyful hope things took a turn for the worst. I scooted myself to stage two of that verse into the “Patient in affliction” category. I wrote a Facebook update this week talking about the night we arrived in Cincinnati. This may be a repeat to some of you who have seen it so feel free to scroll past it until you reach the black line. I copied it to share with anyone who is not on Facebook:

One year ago I boarded an air ambulance with my 4 pound son, wild eyed with hope that we would find a solution for his bilateral vocal cord paralysis that didn’t involve a trach. I have never shared the details from that night but as I lay here awake I feel like I need to. I struggle very much with PTSD from Malachi’s journey but even more with Levi’s and my heart has ached the closer we have drawn to this date.

Levi was extremely stable when we left Chattanooga, where he was comfortably kept on 4 liters of oxygen. He needed the high flow of those liters to help the oxygen get past his unmoving vocal cords. Insurance wouldn’t approve Cincinnati’s transport team to come pick him up so we settled with the company of their choice, REVA. At some point during his plane ride the two-man crew decided unbeknownst to me to turn him down to 1 liter of oxygen, which was not enough flow to keep him safe. I had no idea this was happening…and is something I feel so much guilt over. I sat next to him, secretly celebrating over the advocating I had just done for my son all while he was struggling on the stretcher next to me.

Levi screamed the entire 4 hour journey and I was very concerned about how much he was sweating. They had him strapped to an adult stretcher and covered in big blankets- not once did they peek at his abdomen to check for retractions when he breathed. I asked if we could loosen the straps a bit to try to calm him down but they told me it wasn’t safe. Every time I showed concern they would reassure me saying he say still SATing just fine. I assumed he was still at his 4 liters of oxygen. I asked why he wasn’t being transported in an isollette and they replied that they didn’t do that for all babies. Levi was 4 pounds.

We got to Cincinnati close to 2am and when we unstrapped and unwrapped Levi in the NICU he was breathing so hard he was coming off the table with each breath. He was drenched in sweat and white as a sheet. I started to panic, as did the team of doctors and nurses as they examined him. They told me they thought that one of his lungs had collapsed and they both sounded like they had fluid in them.

They worked on Levi for several hours, trying to get him back to his norm. He started to perk up and get his color back a little. They decided it was a good time to take me on a quick tour of the NICU so I would know where everything was. A few minutes later I looked down at my phone and saw I had missed a call from the Cincinnati NICU. They number called again and it was the nurse practitioner. She said “Levi stopped breathing. We are bagging him now and need you to come back immediately.”

I raced back into the unit to find a team of doctors and nurses surrounding my baby- one doctor was using a bag to rhythmically breath air back into Levi…I will never forget the image of his chest rising up and down but knowing it was not happening by his effort. They told me his little body just got tired of fighting to breath.

I felt my knees starting to give out and I was on the verge of vomiting…the same feeling that has happened so many times in my journey as a mother with Malachi, but it wasn’t supposed to happen again with Levi. And each time those knees start to buckle I have to take a deep breath and remind myself that there is no one to catch me…those hands that would catch me need to be focusing on my son. Giving into my body’s instincts and my emotions instantly felt selfish so I fought the urge with every ounce of my being. I can’t afford to make things “about me” anymore.

Levi was put on the ventilator and I camped by his bedside that night. I couldn’t stop crying, plagued by the guilt of knowing I was the reason he was on that plane. I was the one pushing for experimental surgeries, and while my intentions were as pure as you can get, I had put my son through more trauma.

It was time for me to pump so I hesitantly snuck away to the pump room. As I sat in that small room I officially lost all control of my emotions. I felt so incredibly alone. I wanted to call Jake and tell him the bad news but I didn’t want to burden him two states away where he couldn’t do anything about it. And I knew that he likely had Malachi in the bed with him, and sleep with Malachi is rare and to be cherished. And I couldn’t think of a way to even start that phone call.

I remember looking into the mirror in that room and for the first time ever I didn’t recognize myself. Why was I here? Why do my children keep having to suffer? When will I get to be the mom I used to daydream I would be?

I called Jake a few hours later and he quickly made the 6 hour drive with Malachi. When he arrived we mourned together over the nights events, both of us exhausted from emotion but not wanting to leave Levi’s side.

I don’t know if you have ever experienced true grief- it is completely overwhelming and it feels like any moment you are about to die as your body does things you have never felt before. I really don’t even think I can accurately describe the feeling to you.

I still carry guilt from that night even though I know in my heart I shouldn’t. When the eye doctor tells me that Levi has to have surgery on his eyes as do most “brain damaged kids like him” I immediately feel the pang of guilt, wondering if that damage happened in the plane that night. The neurologist told me this week that he suspects Levi’s brain damage is more extensive than the last MRI shows, and I can’t help but feel those sharp pains of guilt all over again.

The guilt of the special needs mother is a unique thing. We blame ourselves irrationally for things out of our control. The “what ifs….” And we are too stubborn to let anyone tell us differently. We live in a world where our job 24/7 is to keep our children alive. Even during the healthy times, death still lingers on our minds. We pray that our kids live long lives but also pray that God doesn’t allow them to outlive us, as we fear for their wellbeing once we are gone. We live in a world where realities trump dreams. Our days are not 24 hours, but rather continuously running as one hour after another.

The life that I have been called to is a very difficult one and the wounds from the journey run deep. The girl in the mirror is not who I ever expected to be. This life requires me to cling to God and allow Him to be the one who catches me- His hands are big enough to handle my weary knees as well as my children.

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

We simply pray for the strength to get through one more day, and thank God for the beautiful blessings that these two boys are in our lives. And I do my very best to not stay in the memories. My mind fights back, clinging to every sight, smell, and sound. We continue to pray that God replaces all those memories with beautiful ones as we raise these amazing boys.

Side notes: we do not consider Levi as “special needs” but rather refer to him as “medically complex” for now…and we pray that formal diagnoses never need to come. I am told to expect him to have some level of cerebral palsy but not anything near Malachi’s CP.

I contacted the air ambulance company the next day who told me that “transporting him at 1 liter at 100% oxygen is essentially the same as 4 liters at 21%”. That is not even remotely true. Levi simply needed flow, which he did not get. They stand behind their crew’s decisions that night.

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And the final step in that verse “Faithful in prayer.” This is something I am struggling with, and I have been open about struggling with this one for awhile now. Prayer is hard for me. Most waking moments my mind is consumed with keeping tiny children alive. When they fall asleep my body shuts off, knowing I need to glean all the rest I can while I have the opportunity to. Prayer is something I want to be more intentional about. More faithful in doing.

I don’t know where you are on the stages in this verse. Some of you may be in the hope stage, some in the affliction, and others in the prayer stage…the stage where the situation is beyond your control and the only option is to pray. But once you hit that final stage your emotions have taken a beating and prayer can be hard.

Let me encourage you to challenge yourself this week (I am challenging myself as well) to try to live out the adjective for the stage you are in. Joyful, Patient, Faithful. I don’t think it is any coincidence that these three are part of the fruit of the spirit. These emotions are often something that only God can bring to circumstances like mine!

Please remember our family this week, as it will be a challenging one. Levi goes in for another overnight sleep study on Thursday and to say I am dreading it would be a huge understatement. We also have some big talks with pulmonology coming up and will have to start planning our next trip to Cincinnati.

Oh, and here is some pretty fun artwork I did with the boys last week. Levi’s wasn’t feeling the “star making” portion but overall it turned out really cute. We managed to do 23 of these over the last month with the kids (each family did 1 canvas) in our church as a surprise for their parents. We would get their hand prints and foot prints and I would add the details layer by layer. I could officially paint these in my sleep haha! But seeing the joy it brought the parents tonight made it worthwhile. I had a WHOLE lot of “regard others better than yourself” moments while painting these, doing my best to make them as perfect as possible for their mommas just like I would want them to be.

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Thank you for choosing to go on this journey with us each week.

Much love,

Leah

 

 

 

Oh Christmas Tree

This week I have been doing a lot of evaluating on the life we are giving Malachi, and I decided we needed more “silly” things for him to be excited about. More traditions. We aren’t big holiday people- we don’t even really get into celebrating birthdays. Christmas is proving to be particularly hard for me as I can’t stop flashing back to Levi’s hospital stay last Christmas. On a whim I asked Malachi if he would like to go pick out a Christmas tree and he about fell out of his chair enthusiastically signing YES.

So on Saturday we headed to the store, Malachi wide eyed with excitement as I told him that some trees were soft like a puppy dog and some were sharp, like the teeth of a dinosaur. I told him we would let him feel them both and decide which one he wanted. Little did we know that Americans are crazy about Christmas and by the first week in December nearly every place is out of quality Christmas things. Duly noted for next year. We managed to find a handful of “sharp” Christmas trees left at a local store and Malachi was smitten. We loaded one into the van and when we got it home Malachi couldn’t stop giggling. Then we turned the Christmas lights on and he really lost it with excitement.

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I went down into the basement and dug out a few bins marked “Christmas” that have made the move with us from the cabin to the rental to the new house. I opened them up and got hit with a wave of nausea as I looked inside. I remember buying these decorations pre-Malachi and daydreaming about all of the memories we would have with them. I had envisioned all of the kids helping me unpack these bins and decorate the house, fighting over which favorite ornament they would get to hang on the tree. It was like a time capsule of a life I envisioned I would have.

I talk to you often about the grieving process special needs parents go through. It never really completely ends, and such small and insignificant things can trigger it.

But I thought about that sweet little 5 year old upstairs, tickled by the lights on his real Christmas tree and I hauled those bins up the stairs, verbally dictating each ornament I placed on the tree so I could share some of the magic with him.

He is pretty much obsessed with the tree. We had someone stop by last night and I am confident Malachi thought the only reason he came was to gaze at the tree he picked out. We have put one of his switches by the tree and each morning and night we have Malachi “turn on/off the lights”- one of us hides by the outlet and waits for him to push the switch- timing it so he thinks he is doing it. Mr. Independent.

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Every now and then I get the feeling that an emotional burst is about to take place. The last time this happened I was able to ward it off until the feeling went away. I am currently in one of those battles against fragility but still winning! We will see what this week holds before I do my victory dance.

Levi learned how to sit independently this week! And how to get up from the floor to the sitting position all by himself. Big boy! The pillow is there just in case but he is able to stay like this for over 45 minutes.

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We also discovered this week that Levi is NOT a morning person.

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Malachi and Levi are both in the church Christmas play this year- Malachi is a camel (we think) and Levi is a donkey. Their big debut is a week from today.

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Tuesday’s neurosurgery appointment went well, so well that the doctor agreed to change him to an annual check up instead of bi-annually. Praise the Lord for less appointments! We talked about the MRI chaos from 6 months ago and decided to wait to get baseline imaging for another year, and this time around we will go for a CT.

We loaded up from the hospital and headed back towards home for a very special meeting with the high school class that is going to be working on Malachi’s Christmas toy.  If you weren’t able to read last week’s blog, a local group of students is going to adapt a ride on toy for Malachi to make it remotely controlled. This is a HUGE project and we are so excited to find some brilliant minds willing to tackle it for us.

I was about 20 minutes away when I got a call from the local news station asking if they could do an interview and come to the high school for our meeting. I am all about opportunities for awareness so I told them I wouldn’t mind.

I learned something about Malachi this week- he cannot handle big surprises. I have been keeping this project a secret from him. When we got to the school the class came to greet us and we went back to the classroom to discuss Malachi’s needs. Malachi seemed very overwhelmed by the situation and was acting very tense. Then he started to get emotional, sensing that everyone was looking at him and mommy was talking about him. Sweet little tender heart. He is always up for adventures but this was the first time I didn’t explain in detail where we were going or what we were doing. Lesson learned!

The meeting went so well and the students asked very specific questions that would help them create something special and perfect. When we presented this need we simply asked for someone to make the machine remote controlled. But as these kids processed Malachi’s story they decided to make this even bigger, talking about giving the machine a dinosaur theme and installing speakers for dinosaur noises and music. They had so many ideas- even a sidekick car for Levi to ride in. The thing that struck me the most was their genuine excitement to help. It didn’t feel like they were “doing a favor for us” but rather they genuinely wanted to make this a reality for Malachi. What a special group of students, and I can’t even process being that intelligent!

Here is the news story that aired about the project…I had to video it with my iphone so the quality isn’t the best:

The news reporter followed up with the class on Thursday to see their progress and sent me these photos:

And a link to that follow-up article:

https://newschannel9.com/news/local/cleveland-high-school-students-get-to-work-on-malachis-new-ride

I am so excited to see what they come up with! And we have already started to explain it to Malachi, and he is SUPER excited. We didn’t want him to get overwhelmed when they present it to him. He giggles each time we tell him about how fast he is going to be able to go.

I gave this week a theme: “Embrace the Tube”, hoping to get over my bad attitude about Malachi’s g-tube. Every doctor we spoke to talked about how much easier it would make our lives. How it would save us so much time in our day, as it was a direct way to feed and medicate Malachi. But this tube has instead been such a negative thing. We are constantly battling granulation tissue (so bad that his therapists say it is the worst they have seen), constant oozing so multiple dressing changes each day, stinkiness from all the oozing, and the doozy— Malachi hates it and cries and tells me “no” anytime I try to send food or meds through it.

So with this week’s new theme in mind I started trying to slowly run feeds in through the tube…so slow that hopefully Malachi wouldn’t even feel it. Immediately after the tube feeds ended Malachi seizures increased and he was out of sorts for hours. The amount of intestinal pressure did not chance with the tube feeds like I had hoped it would, as he wouldn’t be bringing in as much air as his oral feeds. I tried for three days then abandoned my theme and went back to feeding him like normal.

Tomorrow I will meet with the GI doc and we are hoping to switch out the style of tube to help with skin irritation and the granulation tissue. I am just so disappointed, but also so grateful that we didn’t proceed with the tube before now.

On Thursday Malachi started his new seizure medication called Epidiolex. I know I recap a whole lot so bear with me- but it is the first FDA approved cannabidiol medication. I went renegade about two years ago and started CBD oil on my own but got a little scared to keep increasing without being under doctor supervision as it can mess with liver function and needs to be monitored closely. But we are seeing the same initial results with this new med and he has slept 7-8 hours a night (with just one short wake up session in the middle) since we started it. His seizures are also slightly less intense, but he is still having about 8 of them a day. He is very sleepy as his body adjusts but we expected that. This Thursday we will double the dose, officially taking him higher than I was ever willing to go so I am excited to see what positive changes will happen.

Just a little humor for you today…this morning I did a lesson with the children at our church about the Last Supper. Last Sunday we had done church wide communion and it seemed like good timing for me to teach them the symbolism of the bread being the body of Christ and the juice being the blood that He shed for us. I explained to them that these were just symbols- things to remind us about the sacrifice Jesus made for us. Then I let them each take a cracker and break it, encouraging them to think about how much Jesus loved them. After the lesson I let them eat their cracker just for “waste not want not” purposes. It was definitely an ambitious lesson for the kids (ages 3-11) but when we got in the car after church I told Jake how well the lesson went!

Tonight I talked to a parent whose 5 year old son was in the room. She said she asked him when they got in the car what he did in children’s church and he replied “I ate Jesus’ skin.” Let’s all collectively cringe and laugh at that comment! Oh dear.

This week I will be tackling physical therapy and feeding therapy for both boys; Malachi also has horse therapy, GI and the dentist, and Levi has Neurology and Pulmonology appointments. Lots of hospital days and busyness!

Devotional thought time. Writing this blog each week is a wonderful challenge for me on so many levels. Emotionally it allows me to dump out everything in my heart and sometimes that action allows me to walk away from those emotions. Physically, I selfishly get to sit and do something I enjoy doing (writing) while Jake takes the kids. Cha-ching. That was a cash register noise if you didn’t get that. Spiritually it challenges me in my prayers to ask God to lay something on my heart. Every time I ask He comes through. That’s one of the many cool things about God.

This week has been a “dark” week for me. I have just felt so discouraged. I laid in bed this week and prayed over Malachi sleeping quietly next time me. As the words came out of my mouth “God heal his brain and stop his seizures…” he went into a two minute long seizure. Talk about discouraging! I try to pray with true faith and belief that God can do the impossible but my endurance lately has been wavering.

Tonight Malachi and I went on a date. This is the second one this week and is a result of the creating traditions challenge I mentioned earlier. Just he and I went to listen to the Christmas cantata at church and they sang a song that he knows very well. He was overjoyed and I encouraged him to sing along. He gathered up a burst of strength and opened his little mouth in anticipation but nothing came out. He tried again and again, each time yielding silence.

As I watch him struggle in a fight between his brain and his body I find my heart hurting deep within my chest. I would trade places with him in a heartbeat if it meant I could take some of the pain from his life. I never want him to think I view his struggles as a sad thing, I only want to encourage him, so I have to fight the urge to cry and tell him what a great job he is doing mouthing the words that he wants to say. I have to help him find beauty in the ashes, even though sometimes it is hard for even me to find.

This week I caught myself wishing I could talk to God about this suffering my son is going through. I started to convince myself that this is a struggle that is totally unique to me. No one else gets it.

And as I camped out on that mindset God started to flood me with story after story from the Bible of other moms who “get it”.

Hagar, the mother of Ishmael. She was exiled into the desert with her son they ran out of water. The boy was crying and she set him under a bush. The Bible then says in Genesis 21:16 “Then she went off and sat down about a bowshot away, for she thought, “I cannot watch the boy die. And as she sat there, she began to sob.”

Moses’ mother, who hid her child as long as she could and in an act of desperation put him in a basket and into the river. The suffering and turmoil that decision must have brought her.

The widow from the story of Elijah. She and her son nearly starved to death. Then later the boy grew very sick and died. Elijah brought him back to life.

The woman in the New Testament who was in a funeral procession to carry her dead son to his grave when Jesus brought him back to life.

Then there is Mary…who watched her sweet and perfect son be brutally crucified, unable to stop his suffering.

As I thought about each of these stories I realized an eerily common thread. In each story the child came close to death or actually died before the Lord intervened. Why? Why in the world does God not see our suffering and ease that burden long before the thought of death is even there? Does God enjoy seeing our suffering, hoping that it will bring us close to Him?

I say this again and again but God is a God of compassion. The Bible tells us about His compassion over and over again in the scriptures…

Jeremiah 29:11 ‘ “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you a hope and a future.” ‘

Trials and tribulations do not come from God. He does not create suffering in our lives to make us grow closer to Him or to test our faith. He is a good God and a loving God. Trials are a tactic the enemy uses to draw attention away from our relationship with God. And in those dark moments, the temptation to not turn to God is a real struggle.

But what I want you all to hear me say tonight is that GOD IS ALWAYS RIGHT NEXT TO YOU. Even in your trials, even in your suffering, even in your misery. He never leaves your side. And He sits close enough to speak life and encouragement into your ears….you just need to listen! He never promised to take away our struggles, but He does offer us a promise of His peace along with a reminder that He has overcome this filthy, evil world that we are passing through.

John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Every single mom I could think of in the Bible that experienced suffering through the lives of her children had their God moment. They had that moment when He glued all of the pieces together and flipped over that puzzle to reveal that all along He had a a beautiful picture already designed from what we saw as chaos.

I think about the story of Joseph, a man who went through trial after trial. And he spoke these words:

Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”

When I read that verse, I find myself wanting to speak these words to the devil himself in regards to my family. What Satan intends as harm, God intends for good. And my prayer is that even through our trials, God will continue to use the Carroll family to be a lighthouse that can be seen through the storms.

Please keep our family in your prayers this week, particularly health both physically and mentally.

 

 

 

 

 

 

 

The Road Not Taken

Lots of little but good things happened this week:

Levi finished his antibiotic! We are hoping the ear infections stay away. I know that sounds simple and not noteworthy, but the meds seemed to be hyping him up more than normal. Like bedtime at 2am hyper.

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Malachi is officially on top of his pain from foot surgery. We even took off the casts this week for a much needed shower, which he was so excited about- he loves his shower!

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Levi had his one year checkup at the pediatrician’s office. She was pleasantly surprised by how well he is breathing. He really only squeaks when he is sleeping now, which tells us his airway is growing and his vocal cords are widening. His sleeping squeak is still impressively loud but we have grown so used to it that it doesn’t keep us awake. Oddly enough, is actually brings me some peace as I know whether or not he is breathing. We still keep him hooked to his monitors at night, which is also an added stress reliever.

Levi weighed in at 19 pounds 2 ounces (14th percentile) and 29.25 inches long (20th percentile). Considering his rough start and his low birth weight I am thrilled. Just for some perspective, Malachi weighed 12 pounds on his first birthday and was wearing 3-6 month clothes! So in Carroll world, Levi is a giant haha!

And he is so incredibly close to independent sitting. I tried to take a video this week and he made a dive in the process haha.

Here is a photo if you are unable to watch the video:

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Malachi got to go back to school one day this week for a few hours. There is so much sickness floating around our community so the decision to send him is always a struggle for me. But when I asked him if he would like to go back this week he was ecstatic; we waited for a day when the teachers said there was very little classroom sickness and sent him for a few hours. It always takes him some time to re-adjust to the sensory overload school provides but he was a happy little boy getting to see his school friends again.

I know I have said this before, but I will mention it again- our parenting motto is giving Malachi the best quality life we can possibly give him. We don’t care that he may never say his ABCs, read a book, do a math problem…our priority in sending him to school is giving him a chance to be around his peers and have some independence away from mom and dad. The control freak in me hates dropping him off and walking away, but I see how much he enjoys having such a big kid thing to do and I try to respect that.

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As you can probably tell from pictures, Levi got a new walker this week. Even though he is our second child, there are so many “firsts” for us as parents. Watching him learn how to maneuver has been a fascinating process. We have had to teach Malachi how to do everything- how to move his mouth to get milk out of a bottle, how to hold his head up, how to punch things with his fist. Seeing a child just naturally do things is such a different experience. We have laughed so hard this week as we have watched Levi discover how to walk in his walker. He loves to walk as close as he can to Malachi, much to Malachi’s delight.

I took a video of his first time in it, and now he is cruising like a champ. I thought I would share that first time video with you as it gives you a good 45 second glance at Levi’s silly personality. Note how proud he is when Jake compliments him at the beginning and his lovely tooting noise at the end…a noise he has officially mastered at waits for less-than-ideal times to practice…like when mom is on the phone with doctors or right in the middle of the Sunday sermon. Here is the video:

We had several appointments this past week, and have several more this week including Malachi’s bi-annual neurosurgery check up. 6 months ago we went to this checkup and they ordered a rapid MRI to get some baseline images of his shunt. When I took him for that MRI things did not go as planned and I had a legit emotional breakdown and snatched him off the table when they talked about bringing in anesthesia to sedate him. I had some major Levi flashbacks that day and left, a sobbing mess.

To me, there is no reason to be so invasive for baseline imaging but I agree that we do need some images. I suspect that since the surgeon did not get that baseline MRI he will want to order a CT this time around but we will see. Malachi likes CTs because the machine makes cool noises, so we can handle that one.

Malachi will also be starting his new Epidiolex medication this week. This is the first FDA approved cannabidiol medication to help reduce seizures for kids like Malachi with uncontrolled epilepsy. I have heard great things from other moms in my special need online communities, but there is some slight hesitancy as we are entering another “guinea pig” route. There are no long term studies on this medication and that always makes me a bit nervous. But if we can successfully reduce his seizures from his 6-8 a day to less than 3 then it is worth looking into.

Any time we introduce a new anti-convulsant (seizure med) Malachi takes at least a week or two to adjust to it. I am assuming that this one will not be any different, even though this week’s starter dose is .25 mls. That is just a few drops. Next week we will double that amount. I always dread these weeks as we tend to get a very lethargic Malachi- I hate seeing him so lifeless.

I am really excited to share with you all about Malachi’s fun Christmas gift this year! Malachi is such an amazing child, and seeing him smile despite his physical struggles is inspiring. He genuinely has such a sweet heart, and has been giving me the BIGGEST hugs this week when I pick him up and carry him. He squeezes me so tight that his little muscles shake, smiling from ear to ear as I tell him how strong he is. I wish each and every one of you could spend a day with him and see his precious heart.

I have been trying to think of something extra special to give him this year and I finally picked it out, but knew that it was something he wouldn’t be able to work on his own. I reached out on Facebook to see if anyone was able to help adapt it and one of the local high schools mechatronics/robotics classes volunteered to take on the project! I didn’t even know classes like these existed!

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This is a ride on toy called “Wild Thing” made by Power Wheels. It hold up to 100 pounds and unlike other Power Wheels, this one will accommodate his dislocated knees and feet issues. We can also get one of his special seats to attach making it fully supportive and comfortable for him. The only issue is that it is controlled by two joysticks at each hand, which Malachi clearly cannot do. We asked the robotics team if they could make it remotely controlled by us and they think they can accomplish this!

I am so excited to see what they are able to come up with!! Malachi is very into “running” fast these days, and we do the best we can racing him around in his wheelchair. But to know that he could independently go fast will put such a big smile on his face! The device is small enough that it could fit in the back of my car and could even go along with us on hospital appointments and his soccer games so he can play independently. I am so thankful that this group is willing to tackle such a big project for us.

I will drop off the special seat and the Wild Thing this week and I am taking Malachi by so they can get to know him and his needs a bit more. As you know, I am all about awareness so the opportunity to share Malachi’s life with a group of young people who have the potential to better the special needs world with technology later in his life is something I am looking forward to.

Alright, now into the mind of Leah…

Sometimes I despise my ability to remember things so well. Memories can be such beautiful things, but they also hold the potential to rip open freshly healed scars. These memories have been my biggest battle lately as we are now into the “last year at this time…” mode.

This time last year is when we were officially given a diagnosis and prognosis for Levi’s condition: bilateral vocal cord paralysis. It was like a sucker punch to my gut. While Malachi’s untimely birth brought about overwhelming feelings of sadness and hopelessness, Levi’s new diagnosis brought new ones into the mix…anger, bitterness, defeat.

I remember laying in bed and thinking, why us? Why again? And many of you have resonated these same thoughts with us through this journey.

I am a problem solver. Give me a problem and enough time, and my mind comes up with potential solutions. With medical conditions, this skill holds zero value. I am powerless, with no solutions to offer. I am simply a bystander.

But I am overwhelmingly thankful for the many people in the medical community that aren’t powerless, holding the ability and desire to continue creating quality living for kids like mine. Five years ago, my Levi would have a trach right now. But thanks to some problem solving minds and a team of doctors willing to take a chance on us, Levi is trach free. Again, please hear me say that I am not anti-trach. They are wonderful, life saving devices! Some of Malachi’s best friends have trachs and I am so thankful that that technology exists. But I am so thankful for options.

A year ago today, we were facing some huge decisions for our Levi. I think about the poem by Robert Frost that talks about the road not taken…

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
This poem has meant different things to me at different stages in my life. I have always been fascinated by it, even reciting it during my class president speech at my high school graduation. But as I read it today I get teary eyed seeing the significance in the lives of each of my boys.
We had options for each of them. For Malachi, the burden of choice was great…one of the roads ended the life of our son to preserve him from unnecessary suffering. The other road offered was the chance to give him life, even though the quality of that life may be questionable to some.
For Levi one road was the known one, the trach one, the 5 week route. The other road was unknown, unprecedented, unable to be timed.
I think back to each of the times I have stood and stared at two roads in my lifetime. Every bit of me wants to take a few steps down each on before making the commitment to a path, but life doesn’t offer that luxury. You can simply look at each path and make your decision blindly and without looking back. Looking back is such a dangerous game to play. Jake and I never allow ourselves to play the “what if” game. We simply commit to a path and continue to walk it in faith that God will guide our steps. If that means He creates a new path from the one we chose to the one we should have chosen, we trust that he will create that new secret trail in the woods to get us where we need to be.
Looking back to one year ago I think about the big decisions that lurked in front of us. We were told only one road existed, something I refused to believe. I still laugh about that conversation with Jake that night as I told him that I was going to call every single children’s hospital in the country until I found one that had another option for Levi. He nodded at me, knowing that I wasn’t in a god place for logical reasoning. I set my alarm for 8:00 the next morning and gathered the phone numbers to all the big research hospitals, using the tricks I have learned in dealing with medical providers for Malachi to get through the secretaries and to the people that could help my son. While I would love to take credit for those open doors, I have to point to God and His mysterious ways.
And as we stared at that one, single trail that was well worn, we started to notice a tiny little sign of a new trail that branched off of it. Taking that step was one of the hardest decisions I have made as a mother. And while many of Levi’s specialists still feel that we did not make the right decision for him, in my heart I feel peace.
While we did have to take that first step, it is our faith that carried our feet from there. Once again, we found ourselves having to release a situation that was beyond our control over to God, praying that He would give us the wisdom He gave to Solomon.
While my memories can be haunting at times and cause me so much pain, my memories can also brings me unspeakable joy as I can look back and undeniably see how far God has brought our family.
This week I have been flashing back to unpleasant memories more than normal. I have been really hung up on thinking about Levi’s NICU stay and conversations I was having with doctors at the time and I have been getting physically nauseous.
Like he often does, the Holy Spirit stepped in and began to speak through scripture: “Forgetting what is behind, and straining towards what is ahead, I press on…” (Philippians 3:13-14)
While I do think that memories are a good thing, I also see how they can easily become a snare. We sometimes cling to things that weaken us instead of shaking off those strongholds. Memories aren’t in themselves a bad thing, but they are definitely an area of our lives that the devil can and will use to speak his lies. That is when verses like these are vital to remind us to press on. And not only that but STRAIN towards what is ahead. I love the verb here because it paints the picture of the effort it sometimes takes to forget the past…that is not an easy thing to do.
Speaking of memories, let’s talk about a beautiful one. Take a look at this precious picture of Malachi. It was taken 4 years ago today, and we were so excited that day that he was holding up his head for brief periods of time and playing with his toys.

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Please keep all of us in your prayers this week as we continue to navigate our wonderfully crazy life. We continue to pray for and believe in a total healing for each of our sons.

God bless,

Leah

 

 

No Plan B

Another surgery week down in the books! While we have a few more surgeries pending for Levi in the next few months, this was the last scheduled one for Malachi.

Malachi and mommy loaded up late Monday night and made the drive back to Nashville. We stayed in the magically perfect hotel that we stayed at the week before and settled in for the night. There is such a huge difference when taking care of one Carroll kid versus both. And Malachi seemed to really enjoy the one on one mommy time.

Packing for surgery days is so complicated. There is the optimistic side of me that wants to pack for the one day we are told we will spend in the hospital. But then there is the pessimistic side, the “been there done that” side that knows that there is potential for things to go wrong and for us to get stranded at the hospital for an unknown number of days. I can’t even count the number of times we have gone to the hospital expecting to go home the same day and end up there for 4 night, 10 nights, several weeks. The control freak side of me hates to be so unprepared so I always pack for a worst case scenario and leave it in the car. And I always make sure to shower the morning of, knowing it may be the last time my hair gets washed for a very very long time! Oh traditions of the special needs momma.

We were scheduled to check in to the hospital Tuesday morning at 9:45, but at 6am they called to tell me that the case before Malachi’s had been canceled. They asked how quickly we could get there so we hastily packed up the room and headed toward the hospital. We were quickly registered and taken back to the pre-op area to speak with the surgeons and anesthesiologist.

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I have been trying to prepare Malachi for this surgery for several weeks now telling him that he was going to go to sleep and when he woke up he was going to be sad and his legs would hurt. I explained that he would be scared but that mommy would be right there to cuddle him and we would listen to music together. After his last rough recovery I decided to sweeten the deal this go around with a special surprise for him when he woke up. He has been pretty excited about finding out what the surprise would be.

Every time I had this conversation with Malachi about surgery he would smile at me sheepishly so I wasn’t quite sure he was completely understanding what was to come, and during pre-op he was one happy little boy.

The surgeon came by for our last pre-op talk and we discussed some of the big concerns I had. If you haven’t been with us from the beginning, Malachi went through 5 months of serial casting right after we brought him home from the NICU in 2013. Y’all, it was insane. Every Thursday we had to get up at 4am and soak Malachi’s legs in the tub until the casts got soft. Then we would peel them off and take him straight to the hospital for his next set to be put on. For 5 months. Mmmmhmmm. It was a nightmare. I found a slightly questionable way to decrease the tube time with some sheet metal cutters from Lowe’s (don’t worry, not as dangerous as it sounds) but it was a rough beginning for this new momma.

One of the main issues we used to have is that they would put on a set of casts and we would drive an hour home. Then Malachi would cry hysterically and we would find a spot in the cast that was rubbing a hole in his skin so we would have to put him in the car and drive him all the way back to the hospital for them to cut off the ones they had just put on and give him a new set. On Tuesday I asked the surgeon how common this was, explaining that driving him home 4 hours then having to bring him back for sores was going to emotionally and physically bankrupt me. He said that sometimes that happens, then said he was going to try to come up with a way around it.

Malachi has had surgeries (eyes) at Vanderbilt before but they were while he was inpatient while in the Chattanooga NICU so I wasn’t sure what to expect. It was all very similar to Cincinnati with me having to wait in a large waiting area during the procedure. In Chattanooga you wait in a room by yourself, which is so much more conducive to my wavering emotions on surgery days.

They took him back and I was sent out to the waiting area his empty wheelchair in hand…the constant reminder that my son was in surgery and there was nothing I could do to change places with him and take that pain away.  I HATE crying…it isn’t a pride thing…it is an energy thing. Expending that much energy and emotion completely depletes my energy. And I just can’t afford to cry and deplete that tank any more than it already is.

But I really really HATE crying in front of other people. As I wheeled that empty chair out to a giant room full of people I knew I was about to lose it so I hopped on the elevator and went to “my corner”. At every hospital I go to I try to find a space off to the side where no one else goes. It is where I sit and park in between appointments, where I go to cry, where I go to take deep breaths and chill with the kids. I bee-lined down the elevator and made it to my corner before the tears came. The feeling of being powerless can be so suffocating and overwhelming as a parent.

I sat in that corner, praying over my Malachi and allowing myself a few minutes of tears. Then I pushed that empty wheelchair back up to the surgery waiting area and waited anxiously for word on Malachi. After two hours I finally got called back to speak with the surgeon.

He explained that after he physically got to see the insides of Malachi’s feet they got a much better picture of what was going on. In addition to several of the joints in his feet being dislocated, he also said there there were several joints and bones that actually never formed. They are literally not there. He was planning to put pins in to help hold the bones, but since they weren’t physically there he was unable to do that.

Our goal for Malachi’s feet is to make them “brace-able and shoe-able”. We just want them straight enough that he can be in braces, so the braces can hep fight the messages his brain is telling his ligaments. He said that if his feet continue to turn outwards the only option we have left is to surgically place a screw between the main bones in the foot. But we are hoping that this surgery helps relieve some of the pain he has in his feet.

The surgeon explained that based on so many missing pieces in his feet, he is relatively confident that Malachi suffered some brain damage in utero. We aren’t quite sure if this happened in the few days after my placenta abrupted but before we knew (I had unknowingly had internal bleeding for several days prior to his birth). Or if this was early on in the pregnancy due to some genetic birth defects. Either way, his rough birth at 24 weeks with 15 minutes of CPR on his 1 pound 12 ounce body was not the cause for his feet issues.

They made 4 incisions total and loosened several ligaments and tightened several others. The surgeon is AMAZING and after thinking about our conversation about my casting fears, he worked with the casting team for a solution. They ended up making a three-sided cast for his feet that we can take off if it is causing him pain (so far so good). The cast is held on with three velcro bands. He even said that we can take it off for 3-4 hours a day if needed to give him a bath. WOW! We were expecting 6 weeks in casts which tend to get very stinky, so this was a wonderful surprise.

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He also adjusted our post op plans so we don’t have to go back and the four week mark and then again at the two week. By doing the casts this way we are able to eliminate one of those appointments and only go back at 6 weeks post op.

After speaking with the surgeon I had to go back out to the big waiting room for another hour before they called me back to recovery. I always make sure to voice how much I need to be back there for Malachi’s wake up. “I’ve watched my kids code, watched my kids get intubated, watched them nearly die…get me back the second he gets there please! You don’t know how to communicate or read Malachi.”

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He was sleeping soundly when I made it back to see him. After 30 minutes he started to wake up a bit and we listened to music as I promised him. When he was a little more awake he got his special surprise toy, a dinosaur that growls and bites.

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Shockingly Malachi didn’t shed a tear the whole day! This was the first time ever that Malachi has not woken up from surgery hysterically crying. They managed his pain SO WELL for him and seeing him so normal and happy was refreshing.

They had given him some numbing medicine that was going to keep him legs from feeling any pain for about 4 hours so my goal was to get him home before the medicine wore off. The drive took a bit longer with holiday traffic but he handled it all very well.

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Malachi has been handling recovery so well this week, successfully managing his pain with just a few days of tylenol. He has been crying a lot today but when I ask him what hurts he is telling me his tummy and not saying his feet so I don’t know that it is surgery related. We have almost felt like the surgery relieved a lot of pain for him by the way he is acting.

I did end up having to take him to the hospital the day after surgery for his g-tube site. It started to smell a bit and began growing something called granulation tissue. Basically, the hole is trying to heal itself and grows up tissue. It can be very painful, and in Malachi’s case started to bleed. The only way to combat it is to burn it off with silver nitrate which obviously has to be done by a professional. He has grown some more granulation tissue since then so we might have to make another trip this week.

Oh that tube. Deep breath. He is still crying and signing “no” when I try to send his milk in through it and I am torn between wanting to respect his wishes and needing to get the extra calories in him. We are still feeding him by mouth for every feed with the exception of post-op so we could leave the hospital, and a bit this morning when he was so upset he wouldn’t drink.

As you know, Thanksgiving Day was Thursday and since we weren’t sure how Malachi would be feeling we hesitated making any firm plans. He seemed chipper enough for us to venture out so we went to our favorite local restaurant for Thanksgiving lunch. I had to fight some memories throughout the day as I kept flashing back to last year eating a Thanksgiving meal at the Ronald McDonald House. Don’t get me wrong, we were so blessed to have a place to be that was close to the hospital but spending holidays away from home and attached with so much sadness is difficult.

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That afternoon we spent some time with family close by, and this weekend my brother drove up from Atlanta for a visit. Malachi and Levi have been able to see 8 cousins in the last four days and seeing them all interact has been so fun. We let Malachi sit at the kids table and he felt like big stuff.

One of Malachi’s 6 year old cousins told us in his very matter-of-fact voice that “Malachi goes up to heaven and spends time with God, then comes back down to earth.” I figured this was something that he might have heard someone else say but he came up with that all on his own.

Now that Levi is on antibiotics he is finally getting back into a sleep routine, praise the Lord! Y’all, I was at my breaking point!! He is still getting up a handful of times a night to vomit, but is going back to sleep quickly. Surely he is on the tail end of this cold that he just can’t shake. He has lost some significant weight from all of the vomiting these last few weeks but hopefully we can start packing it on again.

Levi loved seeing family this weekend and really enjoyed being the center of attention. I took a video for you:

And the boys are officially in a size range where I can buy them matching clothes. Dinosaur church shirts (Malachi obviously picked these out) for the win today!

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Jake goes back to work in the morning and life goes back into its routine for me and the boys. We have 7 scheduled appointments in just 3 days this week, and possibly more as we deal with Malachi’s tube issues.

I have had a lot of time to think this week while driving and I keep going to a quote from Corrie Ten Boom: “This is what the past is for! Every experience God gives us, every person He puts in our lives is the perfect preparation for the future that only He can see.”

Those words have swirled around in my mind all week as I have thought about the route God has taken my life. My life has never been an “easy” one. And in each season, I have been convinced that I have more on my plate than I can handle.

But when I look back at each of these seasons in life it is so glaringly obvious that God was preparing me for life with these precious, special boys.

One of the things I had to learn very early on in life was the value of a good work ethic. While I had all my basic needs met, I had to work hard at a young age to be able to afford anything above the basic necessities.  In high school I spent my summers working 40 hours a week at the local pool. During the school year I would get up before school started and open up the senior center pool at 5:30 in the morning, working a few hours before I had to be at school at 8. Then go back after school to log in some more hours.

Then it was time for college. Against the opinions of some very important people in my life, I made the decision to go to Lee University, a Christian college in Tennessee. I had settled on a different secular college, but as God does He tugged at my heart and even then I knew the importance of obeying His calling.

But with a Christian college came a hefty bill. I knew going into it that college was going to be my responsibility financially, but I have always firmly believed that if God called me to do something then He would be sure to provide a way to do it.

God provided me with an on-campus job a few days before classes began. I was determined to graduate in four years because I really couldn’t afford to do it any other way. And with good grades came good financial aid so I had to make being a student priority number one. I literally laugh when I look back on some of the stressful times during those four years.

At one point I was working 3 jobs which totaled nearly 60 hours a week; Information Services and Technology as an administrative assistant Monday through Friday, Campus safety dispatcher on Saturdays and Sundays, and the director of a special needs church program on Wednesdays and Sundays.

In addition to those three jobs I had a 21 hour class load- something I had to get special permission to be able to do. Looking back, that is insane. Most of my friends were taking 13 to 15 hours a semester.

I was also actively involved in two service clubs, which sucked any extra time in my calendar. But those memories mean so much to me. They were my outlet.

I really wanted to be a writer. A journalist, to be exact. But in my world I needed to do things that made financial sense. I knew that I could write without a college degree and if I was going to spend thousands of dollars on an education I needed to do something that required a degree. So I settled on being a special education teacher (hello God haha). The special education certification that I took was for K-12 and required all the basic classes plus the next level of classes in EVERY subject matter so you would be prepared to teach all of them.

Mathematics has always been a struggle for me. I remember taking the step up from basic math class and he explained that he only gave 4 tests a semester. Our grade was to be based on those 4 tests alone. I studied for hours for that first test and made a whopping 52. I got nauseous when I saw that grade at the top of the paper, knowing that my financial aid hinged on my GPA.

I had no other choice but to master that math class. I was already starting off with a failing grade and to bring it up to an A would require me to ace the remaining tests. I remember sitting that day at lunch and thinking that this would be impossible, and trying to think of a plan B.

But there was no Plan B.

I spent every extra hour I had conquering that stinking math class. I did EVERY single problem in the book in preparation for tests. I took notes, writing every word that came out of that man’s mouth. It was a miserable semester. But at the end of the semester I walked away with a hard earned A in the class.

And at the end of four years I walked across the stage at graduation with a 3.97 GPA that was earned with sheer determination. School was never easy for me. I am not exceptionally intelligent. But even then God was showing me that He doesn’t call the equipped but rather equips the called.

Interesting side note- after graduating with my degree in special education the federal government came out with an incentive program for special education teachers who worked in low income areas. If you worked for 5 consecutive years the federal government would forgive $17,500 of your student loans. While I am sure that this had something to do with a quality teacher shortage, I am also choosing to see that God had something to do with this! Malachi’s birth happened at the tail end of year five, allowing Jake and I to enter this new phase of life debt free. Thank you God for working in ways I cannot see.

When I look back to those college days, getting 5-6 hours of sleep a night in between all of the studying and jobs I see the hand of God. I remember thinking that *THIS* was the hardest my life would ever be. “If I could just get through these four years.”

And when I look back at those moments now I laugh at how insignificant they are compared to my trials today. But had I not had those difficult years early on, I am confident that this life would have broken me down much more.

God allowed me to become acquainted to suffering, self-denial for a greater goal, and the art of taking life one day at a time. He allowed the waters to rise right under my lips multiple times, and when those feelings come I am no longer panicky.

God prepared me for a life with no plan B. And while I don’t always feel prepared for this unique life, I am so thankful for those trials.

Malachi’s birth wasn’t my first faith tester. God knew exactly what was to come, and with His compassionate heart He allowed me to suffer more trials. And put up with me complaining through each of them.

Thank you God for those trials. And thank you for the things you are helping me overcome now. Who knows what each of these are preparing me for in the future.

There are no coincidences with God. When you start to look at the bad things in your life as part of a bigger plan you get a fresh set of eyes with which to see your world. As much as Satan tries to convince you otherwise, God is good all the time. His plans are FOR US and not against us.

We are simply called to live a life of trust. Sometimes I score a 52 on that test too haha.

My prayer this week is that God allows me to see beauty of “the past.” I pray that He continues to give me snapshots of me in my weakest moments and remind me “I was there, Leah. I saw you. I am El Roi, the God who sees and I have always held you in my hand.”

Suffering brings a strength that nothing else can bring. What is God preparing you for?

Much love,

Leah

 

 

 

 

Under Attack

Good golly Miss Molly. I am absolutely convinced that the devil has amped up his attacks against our family. I don’t know if you have ever sensed that in your lives, but the feeling hit me mid week and I just can’t shake it.

Before we flow into the negatives from the week, let’s focus on a positive! We celebrated Levi’s first birthday on Wednesday! I have some fun pictures to share with you.

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And then there is this video- it makes me smile so big. Levi gets very shy and hides under blankets. He wasn’t quite sure about us singing to him and got very uncomfortable, trying to hide under the blanket tucked behind him. Here is the video:

Okay, now on to our challenging week.

The boys continued to progress in the negative direction with their colds. By Monday I felt that both boys needed to get checked out to make sure their lungs were still clear from infection. Levi doesn’t have much of an airway so any and all drainage that blocked that tiny opening would trigger his gag reflex and he would vomit. I know it sounds like I am exaggerating, but Levi was literally throwing up over 25 times a day, with half of those being at night. This is a very scary situation for multiple reasons…

For you and I, our brain can tell our vocal cords to close and keep the vomit from going to our lungs. Levi’s vocal cords are paralyzed so he is unable to protect his airway. I had to stay within arms reach of him at all times and snatch him up and forward when he started to wretch to keep him from aspirating (taking it to his lungs). There were three nights this week that he was getting up consistently every 45 minutes to vomit due to postnasal drip. My nerves were absolutely shot from the pressure of keeping him from aspirating.

On Sunday night I wasn’t able to get him up in time and he swallowed a bit of vomit. His oxygen saturations dropped and his heart rate started to go up a little too high for my comfort thus prompting the trip to the pediatrician. Thankfully both boys lungs sounded clear enough to avoid even chest x-rays. Malachi is almost completely back to normal and Levi is symptom free but still struggling with phlegm. Today he has thrown up 12 times. With all that vomiting dehydration has been a serious concern all week.

We were making some positive steps in the right direction until last night. Levi went to bed and Jake and I both agreed we thought this would be his best night of sleep all week. Within the hour he turned into a maniac. Either he was bit by a rabid raccoon or something was causing some serious pain, so I got up with him around 12:30 to try to calm him down. And he NEVER went back to sleep…just screamed until he vomited over and over. Then he started running a fever. When sunrise rolled around I made the plan to take him in to an urgent care in the town close to us (30 minutes away) right when they opened and if it wasn’t something simple then I would make the trip to the ER (an hour away).

We were were turned down by 3 urgent care places before I finally found one that would simply check his ears and listen to his lungs. I didn’t feel like whatever was going on was too bad yet as the fevers were low grade and I was feeling confident it was an ear infection….taking him straight to the ER would just expose him to something bigger when he was already weak. But the fourth place agreed to take a look and a listen and sure enough Levi has a nasty ear infection in one ear and he start of one in the other. He is back on antibiotics…we just finished the last round last week so going back on is discouraging, especially leading into a surgery week.

As crazy as it sounds, we proceeded with our Nasvhille pre-op trip. I called beforehand and explained the situation and they said to bring Malachi anyway with the hope he would be good enough by this week to operate. Malachi, Levi, and I loaded up late Monday and made the drive to a hotel just outside of Nashville. I had researched lots of hotels and found one that would suit our needs but I have to tell you I was blown away by how perfect the room was for our situation. It was fully handicap accessible and had a living room area so I could safely get up with one boy while the other slept in the bedroom. There was a full kitchen with a dishwasher, sink, and a fridge, and a bathroom large enough for the stroller to fit in with ease.

I did my usual full room cleaning with clorox wipes before I put anything down. I don’t know that I express to you all how germ conscious we are. I routinely sanitize my debit card, cell phone daily, car keys, seat belt buttons….we are a little over the top but with weeks likes this I feel validated in being weird.

We arrived around 10:00 and I had both boys were asleep by 11:30. I had brought a stack of hand towels from home to catch Levi’s vomit and I cautiously dozed off to sleep. God was seriously looking out for me; for the first time all week, I got 5 straight hours of sleep. When Levi woke up and I saw the clock I almost started crying with thankfulness to God. The crew stayed up the rest of the morning and off to the hospital we went.

First stop was CT to get images of his hips and feet. Then we headed over to the orthopedic surgeon to discuss the images and the plan for surgery. He walked into the room and said “It is a good thing we got a CT scan today as we aren’t going to be able to do the surgery like we planned.” He started to show me the images and Malachi’s hip is severely out of socket. We knew it was out, but didn’t know how bad it was. The other hip is starting to do the same thing but isn’t bad yet.

In this picture you can see that his hip bone is rotated out and is nowhere near the socket like the other hip bone. Ouch.

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The surgeon proceeded to talk about how we needed to change the surgery from a tendon lengthening to a femoral osteotomy. This is where they cut off the head of the femur bone on both hips. This surgery is incredibly painful and Malachi would be in a full body cast from his nipples to his toes for 6 months, casted in a frog leg position. Kids who have this surgery done typically lose around 15 pounds and regress tremendously with all of their physical progress and abilities.

We have discussed this surgery before, but we all agreed to wait to do this until it was absolutely necessary. Kids with full dislocations like Malachi have a 50% chance of developing pain and that is when the surgery becomes a non-negotiable. We definitely don’t want him to be in pain on a daily basis, but also don’t want to put him through the pain of this surgery if he will be on the good end of the 50% statistic (which our family typically is not).

So when the surgeon said we needed to change routes for surgery and do the osteotomy I felt like I had been sucker punched. I caught myself saying “WOAH WOAH WOAH that is not what we talked about!”

We talked at length about the options and by the end of the conversation both the surgeon and myself agreed that Malachi couldn’t handle an operation of that magnitude right now. We will still be going in and surgically lengthening and tightening some ligaments in his feet but we will not be touching his hips this time. This changes our stay to an outpatient procedure, assuming all goes as planned.

Malachi will be casted below the knees for about two months. We will be going back and forth to Vanderbilt quite a bit for follow ups and to get him fitted for braces again. The casts should be officially removed on January 2.

Malachi and I will be making the trip solo as Levi just needs to stay tucked in and comfortable at home. We will be driving up Monday afternoon so we can be there first thing Tuesday morning. His surgery is scheduled to start right around lunchtime but pre-op nonsense will require us to be there pretty early.

After the appointment with the surgeon we headed to the appointment with the PATCH team (anesthesia). By this time Levi had thrown up mucus 8 times and my nerves were shot from discussing the potential of a massive operation. We went through all of the typical anesthesia questions and Malachi’s medical history. After a few minutes the man said “You seem to be handling all of this very well.” To which I simply replied “This is surgery number 35 for me…you aren’t going to say anything I haven’t heard many many times.”

Before we left he smirked and said “So based on that conversation I am going to guess that you have a medical background.” I replied: “Nope, just a mom trying to give her kids the best life they can have.”

We packed up and headed towards home which should have only taken 4 hours but with the pouring down rain and heavy traffic it took us almost 6 hours to get home. And to be honest it was truly a struggle for me. After the first hour my eyes were taking longer to come back open after each blink so I cranked up the A/C in the front half of the car and got some caffeine to fuel me! I am going to try to download some Podcasts for the upcoming trip to help keep me more focused.

The next day we headed to Levi’s eye appointment. To recap, our first appointment a few months ago did not go as I had hoped and the doctor said Levi would need surgery on his eyes. I cried and had an emotional breakdown haha, then scheduled an appointment with another eye doctor for a second opinion. The day before that appointment they called and said that the doctor had decided to go on maternity leave and we would need to reschedule with another one of their eye doctors. That appointment was this past Thursday.

This eye doctor confirmed what the other one had said. Levi’s eye muscles are having a hard time keeping up, and the culprit is his spots of brain damage. This is where it gets really discouraging…surgery is the only way to correct it and there is zero guarantee that it will hold. There is actually a high chance we will have to continue to do these surgeries over and over again as the real problem is his brain and not his eyes. The surgery sounds awful as they peel back the top layer of the eye to get to the muscles, then sew that layer back on. His eyes will be bloody looking for almost a month, and will take 3 months to return to normal. And again, all of this is not guaranteed to work.

The surgery needs to be done before the age of two to prevent depth perception issues. Without the surgery his eyesight will be significantly compromised. Ugh.

My mommy heart knows we have to do this stupid surgery to give Levi a chance at normal later on in life, but each time my kids have to suffer my heart breaks more and more. I am still pretending to be in denial and have asked to speak to another doctor to get a third opinion before we schedule surgery. We will be meeting with her in January.

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On Friday I loaded up the boys again and we made the drive to the children’s hospital for Levi’s first synagis shot. Synagis is a medication that will lessen the severity of RSV should be contract it this winter. He has to get one of these shots every month, but we are so grateful for them! It is difficult to get insurance to approve them so it is almost like a victory in itself that they didn’t fight us on this one. I wish I could be a fly on the wall of the insurance company as they discuss our family haha!

Levi obviously cried his eyes out after the shot; we are told the medication stings as it goes in much worse than any immunization.

Malachi has been in an ornery mood this week. I brought him in from the car and set him in his seat and he had a sly smile on his face. I have seen that smile before and knows it means he is up to no good so I told him “Malachi, DO NOT fling out of that seat!” He smiled again, and I said “Malachi, I am serious!” I went out to get Levi from the car and when I came back in I heard a thump. I ran over to find Malachi had dove head first out of his seat and was essentially doing a headstand with his but still partially in his seat. On the way down he had grabbed his tummy tube and pulled the cap off so he was upsidedown and COVERED in his stomach contents.

Y’all this is where I need some prayer. I am embarrassed to admit this, but I am absolutely disgusted by Malachi’s stomach tube. Now Levi has one too, but Malachi’s is just so different. Malachi’s surgery site is still leaky and gets stinky throughout the day. And his tube is always dangling out from under his shirt and since it is clear you can see his tummy juices in it. I have dealt with so many scars and wounds in the last five years, but this one is proving to be a challenge. I have dry heaved too many times to count this week!

But the biggest issue is that I find myself mourning over Malachi’s normal with this tube. I always want people to be comfortable talking to Malachi and being around him. But with this tube I watch people react as it is the first thing they see. I hate that we did something to Malachi that makes people cringe and look away. He will get this tube switched out in a few weeks, but I can’t stop being sad for him.

In addition to the visual yuckiness, Malachi cries every time we try to run anything through it. You can tell it is a very uncomfortable feeling for him so we are still feeding him by mouth like normal. Maybe time will help with that.

Alright let’s do this…let’s talk about Levi’s birthday…

There are times when I feel like a narcissist talking about myself so much. This is one of those entries. But this is an outlet for me to process my thoughts!

Leading up to Levi’s birth, Jake and I were so excited that God had blessed us with another baby boy. We talked about how much easier this round would be with a typical kid. I laughed about how odd it would feel to only have to go to the pediatrician for wellness checks, and not have specialists and therapies to worry about. It was going to be our chance for some normal.

I was high risk with Levi after the placental abruption I had with Malachi at just 24 weeks. I went to the doctor for monitoring, stress tests, and ultrasounds every Monday, Wednesday, and Friday. Everything on all of those tests and scans looked wonderful. He was measuring small, indicating my placenta was acting up again but he was healthy. Our goal was to make it to 36 weeks!

I dropped Malachi off at school that morning and headed to town to get some food for him. I met my mother for lunch and then it happened…I abrupted again. I drove myself over to the hospital, calling Jake and the doctor on the way, and tried to keep myself from having an emotional breakdown. It was a God thing that Malachi was not with me that day.

There were several concerns that we were focused on. The first was that I had taken blood thinners that morning. Operating while those are in your system is incredibly dangerous. The plan was for me to stop them a week prior to delivery but with this surprise that wasn’t possible. My clotting factors were coming back at dangerous levels.

The second big concern is that I had eaten within the hour. Anytime you do surgery on a full stomach the risk for vomiting and aspiration is high. We tried to delay as long as everyone was comfortable but as the minutes ticked by the doctors grew more and more nervous. We decided to go ahead and head to the Operating Room and put me under general anesthesia.

As we wheeled down the hall I fought hard against flashbacks from the night Malachi was born. This time around we weren’t running, but as those ceiling tiles flashed by over my head I got chills thinking back to that night. I remember when Malachi was born thinking that I needed to pray as we raced down the hall, and the words from Job were the ones that came to mind: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”

But this time around as I started those words they just didn’t feel right. I waited for the Holy Spirit to give me the words and I started to pray “The Lord bless you and keep you; the Lord make His face shine on you and be gracious to you; the Lord turn His face toward you and give you peace.” I wanted Levi to be enveloped in God’s peace.

This verse is the one we chose to bury under each of the boys rooms when we laid the foundation of our home. I have always felt that God has allowed His face to shine on Malachi, and I couldn’t think of a more perfect prayer for Levi.

Levi was born just before 6:00 that afternoon. And when 8:00 rolled around and even Jake had yet to lay eyes on him we all grew a little nervous.

We had prepped our hearts for a NICU stay prior to that day; we knew he would be small. He was 4 pounds 8 ounces at birth. The doctor came in to tell me that he needed a little help breathing, which didn’t alarm me as most preemies do. I was a little upset that he had to be put on the ventilator but not shocked. Jake went to meet him and brought me pictures. This was the first picture of Levi that I laid eyes on and I was overwhelmed with love.

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I was terrified of Malachi when he was born- his skin was underdeveloped and translucent. They had prepped me that Malachi might not live through the night. I was so overwhelmingly scared that day.

But this time I felt joy. I felt excitement. He was so sweet.

They explained they would need to take him to the level 4 NICU that Malachi had spent 4 long months in, and as much as it broke my heart I had to watch them wheel Levi away shortly after meeting him.

I got to spend 6 sweet minutes with him before he left; here is a video of the first time I laid hands on him:

Malachi was fascinated by the whole ordeal, but didn’t seem to understand about the baby as he couldn’t hear him. But even with his poor eyesight, he searched for this baby brother everyone was telling him about.

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I spent that night alone in a hospital room, listening to all the new moms around me gushing over their babies. My heart hurt so badly that night. I just wanted this time around to have a tinge of normal, but as the hours went on and my baby was 45 minutes away I felt like that opportunity was slipping away.

A week prior to having Levi I went and visited a friend that had just had a baby. We talked about breastfeeding and all the normal things new moms get to do. As we talked I felt this tenseness in my heart, knowing that I was possibly setting myself up for major disappointment. I tried not to long for normal, but so many times my heart and mind wandered towards that desire.

As the days and weeks went by we learned that this journey with Levi was meant to be anything but normal.

I think back to the unfolding of Levi’s diagnosis and the emotions that came with it. I went back to one particular blog that I wrote and thought I would share those words again with you:

There is an old phrase “Lightning never strikes the same place twice”. While I would like to find comfort in that old myth unfortunately life is showing us that the statement is not an accurate one.

As I looked at articles talking about lightning strikes, one of them said that if you want to see lightning strike the same place twice go look at a nearby tall tower during a storm. Lightning is drawn to tall things and will often strike the towers repeatedly. As I read that statement I couldn’t help but see such spiritual significance.

When lightning struck our family in 2013 with Malachi it strengthened our faith more than I ever thought possible. Malachi’s life has taught us the meaning of reliance on God, as our human hands can only do so much. It was AND IS a struggle, but through it all we have tried to stand tall. So it is surprising that lightning has found us again? Should I be mourning the fact that the devil sees the Carroll family as a threat?

Jake and I have been talking over the last few weeks about the term “righteousness”. So many sets of parents in the Bible have been given that adjective, and we talked about how we hoped that God would be able to use that word for us when we meet Him. Now hear me when I say that righteousness isn’t something that we work to “earn”, but it is a heart condition you develop when you live a life of dependence on God and follow His leading.

As I drove down the road this morning I started thinking about the verse “O death where is your sting?” Think about that phrase. Does your life reflect the truth in this verse? Are we living in such a way that death would not sting, because the impact we had on this earth was so great? As I looked up that verse I continued reading the chapter and got mesmerized by this one:

1 Corinthians 15:58 “Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.”

This is one of those weeks that I am feeling the effects of trying to be that tall tower. I feel the effects of those lightning strikes as the memory of them shakes my soul. I find myself cringing, bracing for the next moment of impact as the devil continues to pursue the loyalties of my family.

Just like he went after Christ in the wilderness, the devil pursues us in our moments of weakness. I am not at all surprised that this week has been such a challenging one seeing as it is leading up to a big surgery and also the anniversary of a scary night. All day long I have been reciting those words in my head “Let nothing move you”.

When the devil tempted Jesus in the desert Christ combated it with scripture. This week I am praying that the Holy Spirit continues to place the words of God on my mind that I need to get through each difficult moment that this week may bring.

Please pray for my strength in doing this. Admittedly, I am very worn down this week. We have been in a cycle of pain and sickness for a month now and it is hard on my mommy heart to see them suffer. This week will be no exception as I have to hand off Malachi again.

Please also pray for safety in traveling and that God props open my eyeballs as I make the drive there and back on very little sleep.

Pray against all infections post op for Malachi and that we are able to control his pain levels well. Also pray that this round of antibiotics puts Levi back on the mend quickly, and that he is able to stop vomiting so frequently.

Thank you for being so dedicated to checking in on my family. It is humbling that you take time to read my ramblings each week and pray for my family.

One final note…God and his special and sneaky ways…

I have been having a difficult time lately with feeling very alone on this journey. Jake has always been one that I feel like “gets it” but this week the weight of their care has been squarely on my shoulders. On Saturday morning we got a package on the front porch that was hand addressed to me. I quizzically looked at the large box, confused as I didn’t recognize the return address or name.

When I opened the box I found a carefully thought out and uplifting box of goodies from a church in Ohio. Inside were kind messages and notes of encouragement, gift certificates for dinners out, lotions, and so much more. It sounds worldly to find so much comfort in a box of material things but the gesture meant more to me than they will ever realize.

There are so many of you that reach out to us in such special ways. Thank you all for taking time to uplift a tired momma’s heart and remind me that I am not alone in this journey- that I, in fact, have a host of prayer warriors that have volunteered to travel this hard road with us.

God bless,

Leah

 

Serving the Lord

I feel like I left you on a cliff hanger last week as Malachi was struggling settling back to normal. Monday was another rough day for him so I broke down and scheduled another visit to the doctor. With his random fevers we were very suspicious of pneumonia. I made the appointment for Monday afternoon when Jake would be able to leave during his planning and watch Levi…the last thing we want to do is expose him to germs unnecessarily.

Malachi’s CBC (complete blood count) came back very average and normal but the doctor did think that she could hear some crackling in his left lung so we packed up and headed out to get a chest x-ray. The radiologist reported that one lung looked a little hazy but without the bad white blood cell count to verify an infection we didn’t proceed with any treatment. I felt better knowing that things weren’t in emergency mode, so I am glad we went.

Tuesday morning I packed up the crew bright and early and headed to the hospital for Malachi’s follow up appointment with the surgeon. I told Malachi on the way there that he was going to have to let the doctor mess with his tummy a bit and he kept signing “no”. So I did what every good mom does…I bribed him with a trip to the zoo. We had another appointment at 2:30 across town so we had some time to kill.

After he knew there would be an adventure after his tone quickly changed. After the hard few weeks he has been through I thought I needed to do something to lift his spirits and when November gives you a 70 degree day you might as well take advantage of it!

Malachi was so brave and stayed very still while the surgeon took out his stitches. All of the incisions have healed up well and while I hate the tube with a passion, I am glad we are over the healing hurdle of that first week. He is still very sensitive and cries a whole lot more than normal but it gets better each day.

The appointment went relatively quickly. The hardest part has been waiting room conversations lately as it is testing my ability to offer grace (not proud of that struggle). There are a lot of people in our world that don’t know the polite way to ask about the boys. I get nice comments like  “Your boys are beautiful!” and then I get these:

“So do they both have the same thing?”

“Does he bite (referring to Malachi)?” Hmmmm.

Anyway…

Off to the zoo we went, and as we checked in with the front desk they handed me a schedule of the day’s events. It was 11:20 and there happened to be a snake meet and greet at 11:30. Malachi has been OBSESSED with snakes (and dinosaurs) lately. He has several toy ones that he likes to hold and play with so when I saw that schedule I knew we had to go!

Thankfully we were the only ones at the meet and greet so Malachi got 15 uninterrupted minutes with a 12 foot python. I showed him where the snake was and when his hand touched his back that sweet Malachi smile lit up his face with such joy. I moved my hand away and told Malachi that he could still pet him if he wanted and he independently reached out and pet the snake for several minutes.

It was so wonderful to see that smile again.

We left the snake exhibit and as we walked by the giant lizard it ran over to the glass and began banging his head on the window at Malachi, who started giggling uncontrollably at the “dinosaur lizard”.

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Malachi is still legally blind, but in some low lights he can catch movement and shadows with his eyes. The day was very overcast and it made my heart happy to see him searching for the animals with his eyes. And thank you dinosaur lizard for getting close enough for Malachi to enjoy your company. Even though you were a little freaky.

We went from there to the monkeys, who also ran over to the glass to see the boys. I don’t quite know what the draw is but if you ever want to get up close with the animals just join us for a day at the zoo- they always come running!

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Levi was not amused in the slightest. And desperately needed a nap. 9FA33E8E-BFF8-47B4-8738-A1232163EB13

And it wouldn’t be a zoo trip without a stop by Malachi’s favorite big cats, the jaguars. That is where I took this video, which has had me laughing all week long. This was the perfect summary for our day at the zoo:

The trip worked wonders for our sweet Malachi and he was close to being back to himself by the time we left. I think he just needed some adventure to focus on.

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We tackled physical therapy and feeding therapy for both boys, and even horse therapy this week. With Malachi’s hip and foot surgery coming up next week I wanted him to have one final session with his horse Chica! When I asked him if he wanted to ride his horse he signed “YES” very adamantly and we watched his cues closely for what he could handle.

The week started to pick up momentum towards being a good one. Then Friday rolled around and we had the first sneeze…the warning sign for something brewing. I cringed and waited and sure enough Levi came down with a nasty cold. The rest of us were fine but as you know, it is hard to isolate one kid while being a caretaker to another. By Saturday morning Levi was much much worse and Malachi started with his.

Our weekend has been a re-run of last weekend’s “Should I stay or should I go” game as we make pros/cons list for a dreaded trip to the emergency room. Malachi is handling this sickness decently but Levi is down for the count. He has been running some high fevers, but is still SATing well with his oxygen. I cranked him up to 1 liter and he is still in a safe place but sounds pretty rough. They both have a cough that would send you running. Levi is also throwing up about 12 times a day.

And I am thankful for tile floors and a washing machine.

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I am confident that if I take Levi in like this we will be admitted and possibly put back on the ventilator for his work of breathing. But his baseline work of breathing is what we go by and honestly it isn’t that much worse. I promise you all, if we even get slightly freaked out I will make the trip. Just trying to hold off until tomorrow when I could possibly get him in for a CBC and an x-ray like big brother.

The doctors in Cincinnati have told us numerous times that when Levi gets a bad respiratory infection to expect an ICU stay and for him to be put on the vent. We are just praying his body continues to fight this nonsense!

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So let’s talk about the next two weeks. And let’s pretend that everyone is normal and healthy as we go into it.

Tuesday night I have booked a hotel room just outside of Nashville in preparation for our big appointment day Wednesday at Vanderbilt. It will be just the boys and I, and I just felt that with my lack of sleep, a 4:30am drive to Vandy (three hours one way) followed by a long day of appointments then the return drive home was not a good idea. Yes, a hotel stay with these two is a brutal thing but it seems to be the only safe option.

We are trying to save Jake’s vacation days for emergencies as we tend to have a whole lot of those in our life.

If one or both of the boys are still sick we will be re-configuring the plan but we truthfully really need this to work. Please pray with me that their bodies are completely healed by Wednesday morning for Malachi’s pre-op appointments. No pneumonia brewing…just immune systems doing their jobs well!

Malachi will meet with the orthopedic surgeon, the anesthesiologist, and get a CT scan done. The appointments begin at 8 and last until around 3. I will go back alone with Malachi the following Tuesday (November 20) for his surgery.

In addition to this full, busy day on Wednesday, Levi sees the eye doctor on Thursday and gets his first synagis shot on Friday. Synagis is a medication that helps lessen the effects of RSV should he contract it. It is extremely expensive and reserved for only immune supressed kids or children with lung issues. We are very thankful that he qualifies for the injections and will get them once a month through RSV season. Insurance is completely covering the bill, which is a miracle in itself!

Each of these appointments are about an hour away so we will be logging some road miles this week. I have went ahead and canceled all of the therapies we have scheduled for Monday and Tuesday so we can just focus on getting better.

We are all very exhausted. We were coming off a rough week anyway with surgery, and then got hit with two sick medically fragile kids. I won’t be able to spend too much time with the devotional thought this evening, but definitely feel like God has laid some things on my heart to share with you.

Way back in July I purchased tickets to take some of the girls in my youth group and their mothers to see Sadie Robertson in Chattanooga. If you don’t know who she is, she is the daughter of one of the men from Duck Dynasty (think long ZZ Top beards). I was running on zero sleep and truthfully dreading going but needed to drive the bus and get my crew of 22 there. Jake geared up for war on the home front and I reluctantly left.

Sadie is a wonderful, God anointed speaker and I highly encourage you to look her up and hear some of the things she has to say. The message was geared perfectly for my teenage girls and being in the presence of God felt refreshing. As I looked over the rows of my youth group, my fellow sisters in Christ, I realized something….

I don’t pray for others nearly as often as I should. Most of my prayers center around my world, my kids, my needs. I don’t often take time to pray for others. But the Bible tells us the Holy Spirit prays on our behalf and I am confident that prayers over the things that burden me are making it to the ears of God without me even speaking them. So why do I not take the snippets of time I do get to focus on formulating a prayer to lift up someone else?

I spent most of the evening praying over these teenage girls that God has placed in my life. As I looked at each one of them I thought to myself about their futures and the trials that each of them might have.

The devil shows no discrimination. Your wealth, your status, your list of good deeds…nothing exempts you from attacks from the devil. Nothing takes you off of his radar. In fact, when you are a child of God it puts a bulls eye on your back as he is jealous of the love you have for God.

But in the same way that the devil shows no discrimination, neither does God’s love. There is nothing you can do that makes you undeserving or unworthy. Nothing takes you off His radar. He seeks after the flawed, the imperfect, the burdened, the ones with a past. He seeks after you with a love and a compassion that nothing else in this world can offer.

Lately I have been so focused on the compassion of Christ. Oh how I wish I had eyes to see the world as He did. I wish my eyes could be drawn to the situations that need a burst of compassion, and give me the ability to meet those needs.

God had a word for me this week too. I had to look it up after He laid it on my heart…

Colossians 3:23-24  Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

I thought about this verse and tried to pinpoint which areas/roles of my life are done as if I am serving Christ himself. There are many times when I care for the boys that I am filled with an overwhelming love, knowing that I am serving them as Christ would. But there are just as many times I complain and trudge through my day.

As I sat at the event on Saturday I started to process what a day would be like if I treated everyone as if they were as valuable and as worthy as Christ himself. What a impact that type of living would have on our world. And what an imprint a life like that would leave on hearts.

I have personally challenged myself this week as I go through an emotionally challenging one to serve others as though I am serving Christ…at the pharmacy, at the drive through window, with my youth group, with my husband, with the doctors I will encounter. It will not be an easy challenge.

But if we want to be a light to our world we have to be willing to tackle big challenges.

Please lift up the Carroll crew in your prayers this week. In addition to some wild schedules, it is also Levi’s birthday week (on Wednesday). I am purposefully not spending much time on that one in this blog because I don’t think I can handle the emotions that reminiscing will bring tonight. But next week…oh goodness.

Thank you for checking in on my sweet boys and thank you for praying for a complete and total healing on their bodies. That Levi’s vocal cords would awaken and Malachi’s brain would be restored!

Much love,

Leah