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