Bears, Barnwood, and Boats

Our little family had a week packed full of adventure!

 

Yes- therapies, doctor’s appointments, and chaos all took place this week but there are no noteworthy updates there. Malachi’s seizures are still changing significantly and have started to last 2-4 minutes each. Because of this change we are watching him closely, as seizure changes can indicate a shunt malfunction. He had a few at school this week so I am making sure to stay within a close driving distance so I can be there quickly in case of emergency.

Here is a video of silly Malachi playing with a whoopie cushion; at the end you get a glimpse of some of his sign language as he signs with his right arm for “more”:

Levi is still doing amazingly well with no new issues or changes. He is growing like a champ and looking so healthy. The biggest change we have noticed this week is his long legs.

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He really enjoyed watching Malachi at his horseback therapy this week.

 

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So instead I will fill this entry with some stories from our week.

Let’s start out with the most recent one: we had a visit from a bear! On the weekends we each pick a kid for the night. Jake inevitably picks Malachi as he is the predictable one, waking up at 3:30 each morning for a few hours. Levi is the wildcard and you never know what the night will hold with him. Jake and Malachi ended up in the guest bedroom and Levi and I settled into the master.

We have sound machines in every room, but over the white noise I could hear something loud. I thought maybe it was my imagination so I got up to turn off the sound machine and drifted back off to sleep. Throughout the next several hours I kept getting jolted awake by new noises but I was just so tired I didn’t really care enough to investigate.

This morning we reconvened back into the living room and I told Jake that either there was a serial killer living in our basement or there was an animal outside all night. He went to check the basement and I went to check the porch where I discovered muddy bear prints all over. It had gone after our trash, wheeling the can successfully about 50 feet from the house before it tipped onto its side, which would have been hilarious to witness! He then tried to open the can by clawing and biting it but was unsuccessful. He went back up to the house, flipped open the lid to the second can and strategically took all four trash bags inside. Literally took them- they were nowhere to be found this morning. No sign of trash anywhere!

In this picture you can see the round paw prints on the concrete.

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After church it only took us a half a second to find his path into the woods- he must have been an extremely big bear and mashed all the vegetation in his 3 foot wide path. Jake went back there a ways and found one of the bags but didn’t want to venture too much further in search of the others for fear the bear was still close by.

We live in a rural area that doesn’t have trash pick up so each weekend Jake has to haul it to the local dump. Yesterday he didn’t get the chance to so his plan was to take it on Monday. Oops.

Malachi thought is was absolutely hilarious when I told him that a bear snuck off with all of his poopy diapers.

The boys also had a play date yesterday with the kids of one of our friends from college! There is a wonderful handicap accessible park a short drive from us and Malachi loved playing on it with daddy. He still hates the sun with a passion but this playground has built in sun shades over it so it wasn’t so bad.

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Levi is getting more curious and is starting to see that being held means he gets to see more things. This week he has wanted to be carried all around the house, exploring as he goes. And while he is still definitely a momma’s boy, he is starting to tolerate his crazy dad a bit more.

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But we aren’t too fond of brother’s swing:

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On Monday Malachi had a pretty large seizure at school so I went ahead and picked him up early to evaluate if he should go to his horse therapy session. When Tuesday rolled around I decided it was best to keep both boys with me all day, as we were signed up to help chaperone Jake’s field trip to the river. And what an adventure that turned out to be!

For the end of the year project in his Algebra 2 classes, Jake had the students work in groups of 4 and design a boat. They had to use mathematical principles to determine the buoyancy force and see how large it would need to be to hold the weight of two people from the group. There was lots of math involved in the project but I won’t bore you with all that info.

The final step was that they had to actually build the boat using cardboard and duct tape…and then float it down the river. Yes, you heard that right! There were lots of rules, one of which was that they could only put duct tape on the seams where two pieces of cardboard came together. We were all cautiously expecting the project to be a bust and none of the boats to float but we were shocked when 7 of the 11 floated at least 100 yards, some going as far as 1,600 yards! We had so much fun watching the students trial their creations.

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The day was a huge success and Jake plans to do this project for each of his Algebra 2 classes in the future. We dubbed it “The Redneck Regatta”.

After the Redneck Regatta we went for a quick stop at the local Mennonite community to buy some fresh bread and fruit.

After spending so many months in the hospital, my soul has been absolutely refreshed getting to spend these last few months back in our community. There is so much beauty and simplicity in our life, and I love every aspect of it. Bears and all haha.

Just to recap, Jake and I moved into our new Malachi inspired accessible home in October. And then Levi came in November! I had not even had the chance to unpack all of our boxes and get settled into the new house before I disappeared to Cincinnati for 4.5 months.

My original plan was to work on unpacking and tackling miscellaneous projects during those first few weeks after Levi’s “typical” birth. When that didn’t pan out like expected I was so disappointed. Now that we are home and finding routines I have been able to carve out some time to complete some of those projects.

This one has been in my mind for quite some time, and yesterday we finally finished it.

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It turned out beautifully and way more massive than the picture in my mind. It is 9 feet from the top board to the bottom board and over 10 feet wide! But I absolutely love it for so many reasons.

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I posted a photo of it on Facebook today with these words:

When Jake and I were given the opportunity to build a house we spent a lot of time in prayer over our decisions. One thing we both felt strongly about was saturating it with scripture- we want the presence of God to surround our family, and having His words visible refocuses (and sometimes convicts) us each day. We chose a scripture for every room and buried it in the foundation beneath each one, and when the house was finished we decorated the walls with God’s word.

But THIS VERSE is one we rely on each and every day of our lives. There is a lot of ugly in our lives. A lot of sadness, a lot of disappointment, a lot of suffering. But there is also SO much beauty. And by the grace of God, that beauty seems to always outshine the bad when we choose to focus on it.

Boasting can be a slippery slope, so it is one we try hard to avoid. But we will never stop telling you about the praiseworthy and excellent things God continues to do in our family. To Him be the glory.

Our mind is a battlefield and the devil knows how to navigate it well. The Bible tells us to carry the “sword of the spirit” which is the word of God. These are more than just words- they bring strength, courage, and confidence as we fight our battles.

My prayer is that both of my boys grow up hearing and seeing such life giving words and start to hide them in their hearts. What you hide in your heart will impact your thoughts more than you ever realize.

Looking for a good place to start? Check out Philippians 4 where this verse came from! 

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Yes, it is obnoxiously large but that is exactly the daily reminder I need to focus on the good parts of our life. I hope that this verse takes on a meaning that is unique to you and your situation this week. That is one of the things I love about scripture…the same words can bring so much hope and encouragement to so many different situations.

So nothing too earth shattering in this blog update, but I see that as such a blessing!

One final side note- our porch plan has been working out well for rainy days. We tried it out for the first time this week during a crazy rain storm and it worked perfectly at keeping the boys dry. It is so much fun to see our design visions come to life!

Thank you for checking in on our sweet boys. We are trying to enjoy these slower days, as June holds lots of traveling for medical appointments. Please continue to pray for a complete healing for both boys, and particularly that God restores Malachi’s brain and his seizure come to a halt entirely.

Much love,

Leah

 

Motherhood

Look who made the front page this week! The article was so kind and complimentary of the way Jake has carried himself through our difficult few months. Here is an excerpt from the article:

“Throughout these troubling times, the class noted how Carroll would teach his class all week, then travel to Cincinnati to be with his family in a special hospital for Levi until Sunday, when he would return home and begin his week anew. ‘We’d see him coming down the hallway just smiling, you’d never have known that he had anything going on in his life,’ Stewart said. ‘When we found out, we knew where we wanted the money to go.'”

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When I read the article I told Jake that he was going to cry when he read it. He rolled his eyes at me and laughed, saying there was no way a newspaper article would make him cry.

He was wrong. We both teared up as we read it. It was so wonderful to hear that the way Jake carried himself through our challenges was noticed by the teenagers. I hope that like a pebble thrown into the water, these teens will remember that bad times don’t always have to break you…especially when you walk with the Lord.

Oh what an adventure filled week Malachi has had! This video is sure to put a smile on your face:

Malachi’s field trip on Tuesday was a big success; he was so excited when we got there and heard all of his friends and teachers. Just like I promised him, I dropped him off and left to give him a little independence.

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His teachers said he did great and did not have a single seizure the entire field trip. Usually new environments and lots of stimulation can bring those on so this was very surprising.

Side note- his seizures have changed a bit lately. Malachi has intractable epilepsy which means they fail to be controlled. His brain is extremely globally damaged (which means the damage is all over and not in one specific area) so he has several different seizure types. These days instead of throwing his arms outwards during a seizure he is bringing them inward and claws at his face in the process. He isn’t doing it on purpose, but when his brain panics his muscles all start to contract. It is making me a nervous wreck as he is getting dangerously close to his eyes. His grip during these episodes is incredibly strong and even I can’t pry open his fingers when they grasp on to something.

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I couldn’t decide what to do with myself and Levi while we waited, then I remembered that I had a Red Lobster gift card in my wallet! Score! I had a wave of confidence and off to Red Lobster we went. Needless to say the lunch was a nightmare haha. I forget how loud Levi is when he breathes as I have grown used to it. Red Lobster is a quiet place so we stuck out like a sore thumb.

Feeling self conscious, I ordered my food immediately when we sat down so we could get out of there quickly and not disturb anyone else’s meal. And let me just say…it is a good thing I did as the meal continued to spiral out of control. Levi projectile vomited twice, sounding like a choking baby dinosaur each time which only drew more attention. Then he decided to loudly fill his diaper and at that point I realized that we needed to be done.

I think I set the record getting in and out of Red Lobster and consuming a full meal in under 17 minutes. I am pretty confident the restaurant was glad to see us go. Oh well- we tried haha!

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Well it looks like the jealous bug has officially bit Malachi. This week we are seeing some typical behaviors for a five-year-old first time big bro. If Levi is getting some extra attention Malachi will start crying until we show him some attention too. I have been trying my best to dote on both boys equally but it still hurts Malachi’s feelings when I focus on Levi.

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To combat this, I have been trying to give Malachi more responsibilities as big brother, like “watching” Levi when I have to go into another room briefly. Malachi thinks he is pretty big stuff when this happens. Maybe too big for his britches as once again he flung himself out of his seat and onto the floor this week. It nearly gives me a heart attack every time!

I took a few videos for you so you can see their sweet interactions. The first one was when I asked Malachi to show Levi how to play:

And this second video is just too sweet not to share. I let Levi sit on Malachi’s lap and he snuggled right into him. Malachi was so gentle and even brought his arms up to hold Levi:

We also had a little excitement at school this week. I went to pick Malachi up and his teacher told me that a bear walked up to the fenced in playground and started scratching its back on the fence! Just another day in the country.

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I have been tackling my incredibly long to-do list. I have been devoting a few hours each day to making phone calls to insurance, specialists, and other medical related organizations to try to get the best services and care that I can for each boy. I took this screenshot and sent it to Jake when he asked what we had been doing all day. On this particular day, the phone calls continued until 5:30 that afternoon.

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I took Levi for an evaluation with Malachi’s physical therapist so he can start PT this summer. She was pleasantly surprised with how on target he seems to be, which was music to my ears. I also met with Early Intervention Services this week to set up a care plan for him. We have been able to get a really great feeding therapist to take his case and I am so eager to start those sessions and get him eating by mouth.

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Levi is changing by the day! He will be 6 months old tomorrow which is so hard to believe. He has turned into quite the momma’s boy which makes me so happy. He does silly things these days, and smiles a lot. He is starting to want to be held often (by mommy only) and he loves his toys! The toys seem to create the most jealous moments for Malachi so I don’t let him play with Malachi’s favorites unless he is at school. Levi is also putting everything he can into his mouth.

Today is Mother’s Day here in America (we have a lot of international followers). Jake and I are fuddle duds who don’t celebrate many holidays so we aren’t doing anything super special- my gift is a nice long nap as soon as I finish this entry.

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But last night I started processing the term “Motherhood”.

Motherhood has always looked so different for me. The first time I saw both of my boys was on the screen of a digital camera. It was 3 long days before I got to meet Malachi, and while I did get to meet Levi before he was transferred, it was two days before I got to visit him. I will never forget those nights in the hospital for both boys. I laid in bed listening to babies crying and being comforted by their mothers. I heard the voices of visitors gushing over the newborns in the rooms around me. Yet there I was, alone and childless. My plunge into motherhood left me feeling very desperate, alone, and unworthy. Just a shell of a mother with no child to prove that I had in fact given birth.

Motherhood for me means I have to sign countless medical releases to allow doctors to poke, prod, heal, and fix my children, knowing the painful state they will be in after. And I have to be their voice. I have to think through worst case scenarios and research to make educated decisions for their care.

Motherhood for me means that I have not only watched but held down my children as nurses have attempted to get hundreds of IVs, intubations, and blood draws. I have had allow them to inflict pain on my children, pleading desperately with God that in the long run we will see the benefit. This is the hard stuff of motherhood…this is the type of motherhood I don’t wish on anyone else.

Motherhood for me means I have to helplessly watch Malachi be overtaken by seizures that scare him but have to keep myself calm so he senses peace when he comes out of them. It also means I obsessively watch every movement for Levi, terrified that he too will develop epilepsy. Motherhood for me means always being aware of SUDEP (sudden unexpected death in epilepsy) and waking up several times a night to make sure he is still breathing.

Motherhood for me is equated with fighting. It is desperately trying to get others to see the strength and potential in my boys. To see their worth. To share the hope that I have for each of them. Mothers shouldn’t have to fight this hard.

Motherhood for me is a sea of emotions. Every day I fight temptations of depression, grieving, and loss. But I know that giving into those emotions will only hurt my ability to care for my children, so I have to find ways to stuff those emotions out of my thoughts and focus on the good.

Motherhood for me is laying in bed at night thinking about the unknown. The questions marks, the what if’s, the variables that could go wrong at any moment. I think about future surgeries, future hospital stays, future bad news, future emergencies. And while I want to prepare my heart for them, I just don’t think I will ever be able to adequately do so. So I simply have to swallow the lump in my throat and focus on better things.

Motherhood for me means a constant, daily, reliance on God. Because I simply cannot do this alone. The task is just too large for me to do apart from Christ.

Motherhood can take on different shapes and forms for each individual person. Sometimes I get hit with pangs of jealousy, just like my Malachi, as I watch how simple motherhood can be for others. Oh to have only the good and fun parts, and not have to worry about the bad.

But there is a quote that kept coming to mind this week:

“Motherhood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding he is exactly the person he’s supposed to be. And, if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.”   – The Water Giver

Paul tells us in Philippians:

“I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.”

As I read these words this week I found myself struck by the honesty of his words. It is so easy to find discontentment in our lives. It is so incredibly easy to find things to whine about, things to mourn over…and let me say that there is a time and a place when those moments of mourning are completely necessary and acceptable.

But there is also something so refreshing and healthy about choosing to be content. And relying on Christ to give you the strength to find and cling to that contentment.

Motherhood to me means finding contentment and happiness peeking in through the storms. It means looking past the ugly, the difficult, and the hard and straining my eyes to find the lovely. And to not just find it, but celebrate it.

Whatever motherhood may look like to you, I pray that you are able to find contentment in it. I pray that you are always able to choose joy. And I pray that you are able to see the truth in the words “I can do all things through Christ that gives me strength.” May that nugget of truth drive you during the hard times.

Please continue to pray miracles over my sons. We are continuing to believe that God will heal them both, and what a glorious day that will be!

God bless,

Leah

Just Wash Their Feet

This week we broke one of our big rules and took BOTH boys to Jake’s school. Schools are germ factories so we avoid them at all costs. Yes, Malachi does go to school but he stays quarantined in his classroom all day and only goes for limited chunks. When I told Malachi that we were going to go to “daddy’s school” I could see the wheels turning in his little brain, trying to figure out what I meant.

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One of the business management classes at the high school had the challenge of creating a product to produce, market, and sell. They had the option to split the profits among themselves or donate them to a special cause, and as a class they voted to donate them to our boys. What a selfless and amazing thing!

Jake mentioned to me a few weeks ago that they wanted us to come in so they could present us with a check. I asked him if it was going to be a “big deal” and he said it was super casual and he thought it was simply a pizza party in the classroom.

Jake is not a “details” guy.

When Levi, Malachi, and I arrived we were taken to the stage in the cafeteria where news reporters were present, ready to capture the check presentation on camera. Members of the community had come out as well, including the gentleman who had organized Jake’s Angel Flight.

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If you know me personally you will smile as you read this, knowing how awkward I get in the spotlight. During the all-eyes-on-me moments I overthink everything I do and this was no exception haha. Like when we filmed the Chick-Fil-A reunion last summer all I could think about through the meal was “What is the proper way to eat a waffle fry…one big bite, tear it into pieces…?” I am undeniably an overthinker. But beyond the awkwardness, it was such a wonderful sentiment for those young adults to make such a sacrificial decision.

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Jake and I are continually blown away by the support we receive. People use the word “humbled” in situations like these, and that is by far the best adjective I can think of. Humbled and blessed.

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This picture was taken right before my loving husband turned to me and nodded for me to give an impromptu speech. Thanks dear haha.

The rest of the week went relatively smoothly. Lots of fights with insurance, lots of phone calls, oxygen tank swaps, horseback therapy, pharmacy runs, and other mundane but busying tasks.

Malachi had a wonderful week at school. I love getting pictures throughout the day.

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This week they will be going on a field trip to the aquarium! Malachi loves the independence school brings so Levi and I are going to drive him there (about an hour away) and let him walk around with his classmates without us. He is so excited!

This week I put him in a shirt that said “Big Bro Malachi”. When I read it to him and showed him the words on his shirt he was so proud. Every time someone would read it he would puff out his chest proudly.

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I have been trying to sort out our schedule for the summer and what it is going to look like for both boys. I am not going to lie- it is going to be pretty intense and crazy. We have trips to Vanderbilt, trips to Cincinnati, specialist appointments, youth camp, and weekly therapies for both boys. It is overwhelming to think about.

But these boys are worth it. They lay on the play mat together every day after school and just stare at each other, smiling sweetly.

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Other highlights from our week include play dates with friends and lots of time on the swing!

And of course, watching the sunset…that one never gets old.

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Levi woke up this morning coughing so we have been on high alert making sure he isn’t getting sick. We are leaning towards it being allergies but are a little nervous either way. Every time he starts coughing it triggers his gag reflex and he vomits. We are very worried about aspiration as his vocal cords aren’t able to protect his airway as well as everyone else.

Please keep him in your prayers.

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Nights have been exceptionally tough for me lately. We have been approved for nursing hours for Levi but can’t find a provider that will come out to our area. Last night I tallied how many times I got up with Levi and it was 15. And that was a night with just him. Jake takes Malachi duty on the weekends. When I have Malachi that number increases significantly and we get up for a few hours at 3:30 every morning, as dictated by his seizures.

Truthfully, I have been exasperated. I dread nighttime as the level of unpredictability overwhelms me. But one of those nights this week turned out to be an encouraging and special one between God and I.

I am sure other Christians can relate, but there are times that I just don’t feel connected to God.  I am praying, reading my Bible, and the desire is there but I just don’t “encounter” Him. And when that happens I find that I truly miss our relationship!

I have been going through one of those times lately, and I have been asking God to reveal Himself to me. He has been speaking through me but not necessarily to me.

One of the more difficult parts about nighttime is that I can’t relax. I have to stay on my game and be ready to spring into action- whether that be racing across the house to get to Malachi as he has a large seizure, or racing to pick up Levi before he vomits and possibly aspirates it taking it into his lungs. There is no time for that groggy early morning reaction time.

It was 2:50am on Saturday morning and Levi woke up gagging…again. I knew a reflux vomit was coming and I reached for the blankets I keep stacked at the foot of the bed for this very purpose. Could I catch it in time to not have to turn on the lights for clean up? I paused his feeding pump and grabbed a syringe to vent his belly from any gas pains that might be causing his gags.

I jumped up from a dead sleep and squatted down to the ground for what felt like the hundredth time that day, my back clearly protesting. And it was in that moment that God chose to speak to me.

The words were very simple and concise. He said: “Just wash their feet.”

I don’t know if you have ever experienced God speaking to you, but it is such a special thing. As He spoke those words I processed them in my head and said the phrase over and over again as I finished cleaning Levi up and crawled back into bed a few minutes later. I knew that He was referencing the New Testament scripture about Jesus washing the disciples feet but was having a hard time connecting the dots in relation to my boys. I knew it wasn’t meant to be taken literally, but was a metaphor of sorts.

I knew that in the morning I would doubt that I had heard these words, so I opened up the notepad on my iphone to jot them down so I could study the story later. And as God frequently chooses to do, He intercepted my fingers on the keyboard and continued to speak very clearly to me.

Just continue to wash their feet. Just continue to put their needs above your own, because that is denying yourself. That is joining me and taking up MY cross. That is loving the way that I loved. That is serving the way that I served. I have not called you to a life of comfort. Just continue to wash their feet through the sleepless nights, hospital stays, countless surgeries. Just simply continue to wash their feet.

This is the task you have been given by me. Am I not going to continue to give you the strength to continue in this life of service I have called you to?

Just continue to wash their feet. Because that honors your heavenly Father.

I am ‘the God who sees’ and my daughter, you are seen.”

 

I still get chills reading this. As I read the words He had spoken I was completely overcome with emotion and just laid in bed sobbing. I was reminded that this life I live is no accident. This was ordained by God and I was chosen for this.

John 13 tells the story about Jesus washing the disciples feet. And as I read the account, I was drawn to the last section:

12 When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. 13 “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. 14 Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. 15 I have set you an example that you should do as I have done for you. 16 Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him. 17 Now that you know these things, you will be blessed if you do them.

It is so easy for us to fall into a trap of thinking we deserve things. We deserve to be recognized, we deserve to be catered to, or we deserve a break from the tough stuff of life. But what a revolutionary mindset Christ has presented to us through this story. Regardless of status, we are to serve. We are to deny ourselves and act out our love for one another by putting their needs above our own.

Jesus taught the disciples that day to go against their prideful nature and serve in love.

That moment with God refreshed me beyond what words can describe. And what blows me away is knowing that God is THAT accessible to me. My faith is mediocre. I am not an “exceptional Christian”. I am just like any of you, striving to live out a life of faith like we are called to do.

But I asked God to speak to me, and not only did He listen but He reached out to me with such clarity. He loves me THAT much…to remind me that He sees me and to encourage me to press on in this challenging life.

Have you had a God encounter? ASK FOR ONE! And then watch and wait because God has beautifully creative ways of speaking to us.

And as you can guess, those words have been playing in my head as a motto of sorts as I go throughout my days and nights. Just continue to wash their feet and serve and love them like Jesus would.

And that simple reminder has allowed me to wake up- yes, even 15 times a night- with a smile on my face, excited that I have the opportunity to show my sons what the love of God looks like.

My challenge to you all- whose feet is God calling you to wash? Who in your circles is undeserving, but needs to experience God’s love? Are you willing to serve like Christ and put your pride and status aside? Are you willing to metaphorically squat down and humble yourself to show God’s love to someone undeserving?

And may God encounter you this week!

Much love,

Leah

Reunions

Before I start rambling, let’s just talk about how much Jake and I have laughed at the chaos over the last 24 hours. Between all of us we have gone through 14 outfits today- and no- no one is sick…just a typical day in Carroll land. Jake has earned a badge of honor for changing his first blowout diaper for Levi, which Malachi (and mommy) thought was pretty funny.

We feel like we might possibly be losing our minds, a theory that was verified 30 minutes ago when Jake was putting Malachi’s pajamas on and instinctively tried to put Malachi’s shirt over his own head. I laughed so hard I had tears rolling down my face. The mental image of Jake having a tiny toddler shirt wedged over his face as he mumbled “What am I doing?” will forever bring me joy.

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The fact that we manage to accomplish anything in a single day is completely mesmerizing. Let alone get everyone dressed and to church (almost) on time!

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This week we tackled some pretty big appointments, so let me start off with some medical updates!

I took both boys to see the gastroenterologist (GI) doctor on Wednesday. I asked him which kid he wanted to talk about first and he said: “Let’s talk about the less complicated one” and pointed to Malachi. That made me laugh to myself as I would have never imagined that Malachi would ever be labeled as my “less complicated” child.

Malachi has obviously lost a lot of weight over the last 6 months as our time has been split between both boys needs. While the doctor is concerned, he also understands the reasons why and trusts that we will be able to pack the pounds back on now that we are home. He weighed in at 26 pounds, and his last weigh in 6 months ago he was 40 pounds. Yikes!

Then we got to Levi. Each time we see a new specialist I start over with my summary of our journey so far, and each new doctor is absolutely fascinated by the different things we have done to keep him trach free. Unlike brother Malachi, Levi has packed on some weight since we have been home and gained over 2 pounds in one month (He is just shy of 12 pounds)! The doctor and I agreed that we may be too aggressive with catching him up physically to his peers so we adjusted the rate that his feeds go in at. Now he is being fed 18 hours throughout the day instead of 20. We get to choose which 6 hours we take him off, so I usually reserve those for quick trips to drop Malachi off at school as it is one less piece of equipment to pack and prep.

At the end of the appointment the GI doc said “I have to be honest with you. I was expecting a different kid after reading through his medical history.” This comment caught me off guard and I pressed him as to what he was expecting. He replied “A kid like Malachi.”

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It seems that his medical records focus pretty intensely on his areas of brain damage. I am not quite sure how to feel about that. Doctors in Cincinnati told me that there is about a 10% chance of some minor disabilities caused by the brain damage and Chattanooga neurologists say about a 25% chance of cerebral palsy. Either way, Jake and I choose to believe he will not be affected at all and treat it as a secondary diagnosis that isn’t even worth mentioning to many of these specialists as it does not affect their treatment routes.

The following day was a big one as we headed back to Chattanooga to tackle a few more appointments between the boys.

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We started out at the pulmonologist for Levi. This is the doctor that will be in charge of making decisions about his oxygen support needs. We had spoken with this doctor extensively prior to being transferred to Cincinnati and I was looking forward to showing him the new and improved Levi haha.

He came into the room with a smile on his face, telling me how much he had been looking forward to this appointment. He said he was looking over his patient list for the day as he drank his coffee and when he saw Levi’s name he was ecstatic. He had a notepad with him and wrote down as many details as he could as I told him each step of Levi’s care in Cincinnati. After 45 minutes we still had not made a dent in anything other than a medical summary and he had to go do a procedure so he asked to meet again on one of his days off. I explained to him that if there was anything at all we could do to create another option for children in the future with bilateral vocal cord paralysis we would be very interested in helping.

I had brought pictures from every throat scope Levi had as well as a full article about the procedures we had tried. He asked to scan them all in so he could review them before we met again and couldn’t wait to see the difference that each procedure made. Overall it was a great appointment!

We agreed to leave Levi on oxygen for a bit longer, and down the road we will discuss weaning his oxygen requirements during the day time. As I told him, he truthfully doesn’t require it during the day. But there is no reason to mess with weaning it right now as everyone is still in a “watch and wait” mentality.

Our best takeaway from the appointment is that he is going to create a complex care plan for Levi that we will keep with us wherever we go. If for some reason we end up in an emergency room or hospital that is not familiar with Levi, it will give them a step by step plan on how to treat him from an oxygen/airway standpoint. One of my biggest fears is entering a medical environment that doesn’t know Levi and overreacts, putting him back on a ventilator when he doesn’t really need it.

After that appointment we raced down the hall to Malachi’s neurology appointment. Not a lot of updates from that, but they did decide to check his medication levels and do a blood workup to make sure they aren’t impacting other areas of his body. In the past some of the medications he was on were messing with his kidney function, so it is good to check those periodically. The GI doctor had also written an order to check his Vitamin D levels since he has lost so much weight, so off to the blood lab we went.

We protect Malachi pretty well from experiencing pain, so when it does happen it is a foreign concept to him. He has horrible veins from being born so premature and requiring them to be used so often for medications through IVs. This time around was no different and it took three sticks to get what they needed. Each time they stuck him he would wince with  pain for just a second and then look at the nurse inflicting the pain and smile. Little goober haha. I just love his precious, forgiving heart.

Finally, we stopped by the NICU for a visit with our friends! Luckily one of Levi’s primary nurses was working and it was nice to reconnect. We will forever adore the staff at the TC Thompson NICU. They have played such a big role in both of my children’s lives.

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After our long morning at the hospital we went to meet up with our Chick-Fil-A friends! Yes, I know…very ambitious of me…but I needed something non-medical to look forward to.

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If you are new to the blog, almost exactly one year ago I was pregnant with Levi and absolutely sick but starving. Malachi and I had been at the hospital all morning for appointments and were racing across town to another appointment that we were severely late for. All I knew is my body (aka a growing Levi) needed some protein! We whipped into the parking lot of the Chick-Fil-A in Chattanooga and found the drive thru line wrapped around the building. I was so exasperated and started to leave, but decided that by golly we were going to get some chicken. Malachi needed to eat too which is a long process so we parked and headed inside.

While we were there we had a very special encounter with a mom and her three children. I later posted about it on my Facebook “To the mom of three…” to encourage others with young children to teach them that differences are not something to fear, just as this mother had. The post went viral, much to our surprise. It was shared by thousands of people and the mom we met that day happened to see it and messaged me. The rest is history…Chick-Fil-A filmed a reunion with the mom and her kids and we have developed a pretty special friendship.

Here is a link to the story and a video of our reunion last summer:

https://thechickenwire.chick-fil-a.com/Lifestyle/Two-Moms-Reunite-After-Their-Story-Inspires-Thousands

 

It is absolutely amazing how God aligns our lives with others. And Malachi was absolutely giddy to see his friends again.

 

Levi has decided that the oxygen life is just not for him. He has managed to pull his nasal canula off more times than I can count, regardless of the type of tape I use. Each time he yanks it off he cries out in pain, not piecing together that he is the one inflicting it on himself. Then he smiles sheepishly at his accomplishment.

 

This morning at church we did something called cardboard testimonies. While a song plays a line of people one by one stand up on stage and hold up a piece of cardboard (front and back) with a few words testimony on it. Malachi and I participated and I thought I would share his with you.

 

 

I know I say it a lot, but he is just the most precious little soul. He loves church more than anyone I know. He loves every single piece about it…the people, the prayers, the music, even the preaching. Oh boy does he love when they talk about God.

This morning they sang “God’s Not Dead” and I watched him process the new-to-him song. He was clinging to every word and out of the blue he let out a ROAR. I was confused a bit until I realized that one of the repetitive lines in the song says “He’s roaring like a lion”. Malachi is so much smarter than we even know!

I got this picture from his teacher at school this week! He was able to go for a shortened day Monday due to therapy and all day Tuesday and Friday.

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And little Levi and mom got to spend some special one on one time, working hard on sitting up.

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I have been focused on some pretty heavy thoughts this week, brought about by unlikely things.

Just last week I was sharing with you about how wonderful it was to be back home and able to witness nature, and particularly the birds. I have been watching this past month as a mother bird has skillfully crafted a beautiful nest on the top of one of the columns on our front porch. Throughout the day I pass momma bird as I go in and out of the house, each time trying to be as quiet and predictable as possible so she wouldn’t be interrupted in her duties as a momma.

I know this sounds silly, but I have formed a bond with this little momma bird. I connected with her as she toiled day after day to prepare a world for her babies.

On Friday I went to take a bag of trash outside and glanced up to make sure I wasn’t going to interrupt momma bird. She was not on the nest so I headed toward the trash bins. My heart sank when I looked down and saw a newborn baby bird laying on the concrete, clearly no longer living. I went to take another step and noticed another newborn bird was also on the concrete, but this one was still breathing.

As I watched that translucent little body struggle to breathe I flashed back to watching my sweet little Malachi and grew nauseous. As my mind watched its little body move up and down with each hard breath it transitioned to memories of watching Levi as his body worked so hard to breathe.

I actually thought I was going to throw up as I processed what to do. I stood up to go get some gloves and found yet another newborn bird in the driveway, this one too was in worse shape than the other but still alive.

I put on gloves and put the living ones back into the nest, hoping that they could be saved. I anxiously waited to see if momma bird would return and sure enough she came back to fulfill her duties and keep those babies warm. Unfortunately after not seeing momma bird today I had Jake check the nest and none of the babies had survived.

And all day I have been mourning those stinking baby birds. Ugh I hate cliches, but it brought to mind Matthew 10:

29 What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without your Father knowing it.30 And the very hairs on your head are all numbered. 31 So don’t be afraid; you are more valuable to God than a whole flock of sparrows.

Tonight as I sat and thought about their little bodies once again, I tried to pinpoint why I was so affected by them, aside from the fact that they were vivid reminders of my boy’s early days. And my heart continued to break for that mother bird.

But I was also reminded that God was aware of those baby birds and their struggle. And as the Bible reminds us, we are so much more valuable to God than those birds. I know He is watching my boys and has their lives planned out from conception to their final breath, and I have to find comfort in knowing that they will remain on this earth until God decides to call them home.

I have been worrying about death a lot lately. Which can be dangerous when you have a medically fragile child. Too many what ifs.

My heart has been raw this month as I have watched two little boys in my support groups, very similar to Malachi in age and diagnoses, pass away. I can’t help but put myself in the shoes of their mothers as they deal with such a huge heartbreaking loss.

Suffering is so incredibly hard to process as a Christian. We live in such a broken world. But as a Christian I also have incredible things to focus my eyes on…

Revelation 21:1-4

“Then I saw a new heaven and a new earth, for the old heaven and the old earth had disappeared. And the sea was also gone. And I saw the holy city, the new Jerusalem, coming down from God out of heaven like a bride beautifully dressed for her husband. I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

I feel like I haven’t been a good steward of the blog this week and communicated something more relatable for you all. I will be praying that God lays something HUGE on my heart to share with you next week.

Keep me in your prayers as I process a lot of emotions these days.

This morning I had to take Levi out of the church service as his breathing seemed a little too distracting. Two other moms had also stepped out with their babies and we all sat in the lobby area with our little ones. I watched as they each breastfed their children- mothering them the way God intended, and caught myself looking down in shame at the tubes that fed my child. I suddenly felt so out of place. And different. Unworthy of the title.

It is in those moments that I see the devil hard at work, creating insecurities in me and exploiting my weaknesses. What a crafty serpent he can be. In the end, being a mother is so much more than how you feed your child.

Pray that God increases my awareness and that I am able to see and deal with these attacks before they strike.

And continue to pray for my sweet boys. Pray that Levi’s vocal cords suddenly wake up and he is able to function 100% normally. Pray that Malachi’s brain is restored and made whole and all seizures stop immediately. And continue to pray for wisdom for Jake and I as we care for such special children of God.

Much love,

Leah

 

 

 

Disfigured Yet Hopeful

This was a week of many firsts.

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Monday I tackled my first solo day of appointments with the boys. We had a 9:20 and an 11:20 for Levi an hour away in Chattanooga and a 2:30 for Malachi about 45 minutes away.

It took me about an hour and a half the night before to pack our bags, which truthfully could have lasted us for 4 days in the wilderness haha. But I wanted to make sure I thought of every potential situation we would encounter. When we arrived at the hospital I strapped each of them (and Grover of course) into the massive stroller we adapted for the boys and we were on our way!

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Appointment one was for Levi’s g-tube. We met with a surgeon who showed me how to change it out and replace it if it ever came out. The stomach heals impressively fast when the tube comes out- you have to get it back in within four hours or the hole closes up and requires another surgery to get the tube back in. He said that his g-tube site looks amazing and for every 100 he puts in, he is lucky if 10 of them look as good as Levi’s. I sheepishly smiled like it was something I had done, but the reality is that we are just blessed! Oh the things special needs moms take pride in…

This surgeon is the same one who has done nearly half of Malachi’s surgeries, including one life saving one when he was two weeks old. It was like an odd little reunion but for a different kid. While we love the man, I was very excited to hear that unless there is an emergency there is really no reason for us to keep seeing him on a regular basis. Specialist #1 checked off the list.

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Next we headed across the hospital to meet with Levi’s hematologist. Background info: shortly after Levi was born he had an MRI done on his brain to check for a malformation that would cause his vocal cords to be paralyzed. While we didn’t find the malformation we did discover two small areas of brain damage caused by a hypoxic ischemic event. That means either he went without oxygen for a period of time (highly unlikely as he was in the NICU and on oxygen support the whole time) or he had a blood clot that traveled to his brain.

Before we left for Cincinnati we had the hematologist check my blood to test for any clotting disorders. Levi is still too small to test so we thought we would rule out any issues on my end. I had been tested for these issues prior to pregnancy and everything came back clear, but the doctor wanted to spin them again to see if there was something they had missed.

At our appointment on Monday the doctor told me that everything came back clear again. Part of me is happy to have it verified that I do not have a clotting disorder (in spite of 3 blood clot issues), but the other part of me doesn’t like it that we don’t have a clear answer for Levi’s brain damage causes. But either way, unless another issue arises the hematologist decided that we do not need to be seen on a regular basis. Specialist #2 crossed off the list. BOOM!

We headed down to the cafeteria to get momma some much needed caffeine and to find a quiet place for me to feed Malachi. Once we were all recharged, we packed up the van and headed to Malachi’s therapy appointment across town. Malachi was a champ on his horse, in spite of not being 100% back to normal from his sickness last week.

Call me cocky but I was thrilled at how smooth our first big day went! We got allllll kinds of funny looks and barely fit into the elevator, but by golly we succeeded! I had one little old man literally circle the giant stroller multiple times as we waited for the elevator, fascinated by our set-up. He had a shocked look on his face and squatted down (yes, literally) to look under the stroller and said “Whew, I thought you had a third one under there too.” I didn’t quite know how to respond to that so I just smiled.

The rest of the week is a blur. Malachi went to school on Tuesday and Levi and I headed into town for our first big grocery trip- I hadn’t been to the grocery for 5 whole months and couldn’t wait to restock the fridge and actually cook. But shortly after we got there I got a call from the school that Malachi had already had a few big seizures that lasted longer than 2 minutes each. We quickly headed that way to pick him up.

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Malachi is feeling so much better but is having trouble with some lingering mucus. When you or I have mucus, we have the ability to cough it up and manage it well. Malachi doesn’t know how to do that so it sits in his throat and he panics. His brain tries hard to process what to do and when his body can’t do it the discomfort sets him into major seizures.

Wednesday his seizures were still going strong so I kept him home with me. Thursday he was ready to go but someone in his classroom went home with a tummy bug so he also missed Thursday and Friday in an effort to steer clear of those germs.

Malachi has really enjoyed the extra time home with Levi and wants to be close to him at all times. He has been trying so hard to get his hands on him this week and after 25 failed attempts to grab his hand, Malachi finally succeeded. I saw it coming and grabbed my phone to take a quick picture. This moment lasted about three seconds but to Malachi it was glorious.

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We have had some beautiful weather lately so we took the boys on their first walk this week. We went up the road to see the coon dog and Hank the pig.

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This seems over dramatic but I have been overwhelmed by the beauty we live in, and particularly fascinated by the birds. In Cincinnati I didn’t get a chance to see nature so being reunited with it here has been refreshing. We have been watching the sunset from the back porch this week and it has taken my breath away.

We have also been cashing in on some of our LaundryDoo loads! Thank you to everyone who donated a load to our family. I leave these bins on the front porch for pickup and they are washed, folded, and back on the porch within 24 hours. Best invention ever! And what a blessing.

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We have also been extremely blessed by our community in the form of food. We have had several families drop off meals throughout the week. Even today we came home from church to find a bag of hot home cooked food on the front porch waiting for us.

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Nighttime has been interesting. During the weekdays I take night duty for both boys so Jake can get some rest. We have Malachi on a video monitor so I can watch him for seizures- he usually has one within two minutes of waking up (around 3am) so we try to get in there pretty quickly. I also have Levi’s pulse oximeter on so I can watch his heart  rate and oxygen saturation. Add onto that his feeding pump that alarms often and the fact that Levi’s breathing alone is a huge distraction. It is not quality sleep for momma but it is better than nothing. I am living on prayers and caffeine.

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There are nights we are up and down several times an hour, and usually by morning I find myself smashed in the middle of two boys in our king sized bed…too afraid to sleep for fear Malachi will have a seizure and smother himself on a pillow and too afraid of rolling over onto Levi; co-sleeping freaks me out. This week I laughed to myself as I felt like the icing in the middle of an oreo. But as long as they are each getting the rest they need, I am choosing to be content.

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We were all able to attend church this week, and it was just what I needed after a week being cooped up at home! There is always an element of chaos with every thing that we do, but some outings are worth the crazy.

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Of course all of those late nights in the middle of the oreo cookie have led to some pretty in depth conversations with God about my boys.

I have been thinking a lot about Malachi’s journey. I remember bringing him home from the NICU, confident that everything the doctors told us about his brain was going to be wrong. God was going to heal my son. He was going to defy the odds, and we would give God all the glory. Miracles for Malachi, right?

My boy would walk. My boy would talk. My boy would be a typical child with no signs of his rough start.

I can’t tell you the specific day that I realized that God had different plans for Malachi. But I can tell you that I have struggled immensely with disappointment that God didn’t completely heal my son like I expected him to. We have watched Malachi’s body become more disfigured over the years, as his brain tells it to do things it isn’t meant to do. We have watched his little brain be overwhelmed with seizures. We have watched a lot of the the things those doctors predicted come true.

The disappointment is there.

But in addition to that disappointment there is a level of excitement, curiosity, and wonder as we watch and wait. There is a reason that Malachi was born this way, and there is a reason that his healing has not happened yet. And Jake and I continue to expect God to heal him.

Acts 3 tells a story about Peter and John walking up to the temple and finding a man who was “lame from birth”. This man looked at the ground, humbled by his condition, as he did each and every day, holding out his hands expectantly at the disciples as he asked them for money. The Bible paints such a clear picture of the scene.

“Peter looked straight at him, as did John. Then Peter said, “Look at us!” So the man gave them his attention, expecting to get something from them. Then Peter said, “Silver or gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, walk.” Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.”

From here, the Bible tells us that Peter was able to tell the crowd about Christ and His power.

“By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus’ name and the faith that comes through him that has completely healed him, as you can all see.”

As I reflected on this story, I saw it with fresh eyes as I stared at my own sweet son as he slept. I looked at his disfigured legs and wondered if the man from the Bible had the same disfigurements.

 

It would be physically impossible for Malachi to walk. Literally impossible. His ankles and feet turn out and up, we aren’t sure he has kneecaps, and both of his hips are entirely out of their sockets. Because he has never put weight on his legs, the bones at his hips never formed the grooves like they should. Every part of Malachi’s legs are marred beyond repair.

I can’t help but think that the man at the gate that day was the same way. His legs were atrophied from never being used. His ankles and muscles were weak and non existent. He was likely a mangled mess…just like my sweet boy.

But God chose to heal him that day. And I fully believe that God will heal Malachi too. One day Malachi will run. One day he will run so hard that his little cheeks turn red, and he will ask “Did you see how fast I was mom?”

And while each day that this doesn’t happen I experience a tinge of disappointment, there is also a level of excitement as I wait in anticipation for that moment to come.

Malachi’s “day at the gate” may not happen here on earth, but I have faith that it can. If God can heal this grown man in an instant, I am confident he can heal my 5 year old son. And I am confident that Malachi will be running laps on the streets of gold in heaven. His ankles will be straight, his knees will bend, and he will be walking and leaping and praising God.

As a Christian we are called to have faith. But it has to be a faith that stays strong, even through disappointment. Because of that faith, we are able to experience hope.

And it is that hope that keeps me smiling. Expecting, anticipating, and smiling. I can’t imagine going through our lives without the hope that Christ gives us. It brings me a peace that I cannot explain.

Tonight I am thanking God for fearfully and wonderfully making Malachi, as it says in Palm 139.

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

One more side note- I took the youth group to the movies tonight to watch “I Can Only Imagine” and it is an excellent movie! It has great lessons on forgiveness, even when it is difficult and how God can change a dark person into a completely new being. It captivated 22 teenagers this evening, so I think it is safe to say it was a hit for their age group too. If you are looking for something to do this week you should check it out.

Pray for our family this week as we raise the bar to 3 appointment days! This could get interesting!

Have a blessed week!

Leah

 

 

 

 

 

 

I’ve Been Thinking

Let’s start with the worst news- the Carroll family is sick. Ughhhh. But let’s brag on God for a bit because the only one who has avoided this nasty cold is Levi. There is literally no way that God isn’t involved in that. Seriously. Malachi spreads germs like a maniac…just this morning while we were sleeping nose to nose (the only way he will rest when he is sick…yep…it is disgusting) he coughed so hard his mucus nailed me in the eyelid. He has impressive trajectory for germ flinging. And sorry for that visual.

Even through the sickness Malachi is being his silly sweet self, laughing over the tiny things in life like chicken:

Here is a sweet little video clip of the boys playing together a.k.a. unknowingly sharing germs before mommy realized Malachi was sick.

We have been changing shirts between holding kids several times each day, using hand sanitizer, and trying to tolerate masks. All the while being pretty down for the count ourselves. I have been bathing the boys as much as possible since neither can really wash their hands at this point.

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But let’s back up to the middle of the week when Levi and I made the journey to Cincinnati for his throat scope. He very generously gave me a whole 3.5 hours of sleep the night before we left. I prayed most of the drive there, asking God to give me energy and He absolutely did. Levi slept most of the drive there and when he was awake played contentedly in his seat. We made it there in about 6 hours and checked in right on time.

I bought some new sock puppets for Levi’s feet and he is so entertained by them. I thought you might like to see a video of him playing with his new friends:

The drive itself set me on edge the closer we got to Cincinnati. I tried to eat something on the road but was so nauseous from the thought that I was taking my son somewhere where I knew they would inflict pain on him. I tried to reassure myself that it was for his own good, but my mind kept saying “but is it necessary?”

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Returning to Cincinnati after being inpatient for so long was a very different experience. In some ways it was much easier and in others in proved to be a challenge emotionally. When he was in the NICU these procedures were done quickly and he was taken back to his room to recover. This time around we waited in a tiny pre-op room for a few hours before he went back and then I met up with him in recovery.

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There were a few barriers for me this go around that I didn’t anticipate. I saw a few faces that I have unconsciously paired with bad things. Like times he was intubated and I didn’t believe he needed to be. I would pass these faces and so much bitterness would well up inside of me and I wanted to tell them to not go near my son. One of the other unexpected hard parts for me was pushing his empty stroller into the OR waiting area. Yikes.

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The surgeons came into the pre-op room before taking him back and Levi was having a meltdown. During these episodes he sounds terrible with his breathing so I was a little curious how they would feel. They looked at his retractions and work of breathing and said “He sounds bad but looks so much better breathing than before the last surgery!”

The procedure went well and they didn’t have to do any dilations. His airway has maintained its openness which was great to hear. They think that his epiglottis might be growing back up again- if you remembered we trimmed that down a few surgeries back- and we might need to trim again next scope. But overall a great report and we don’t have to go back for 6 weeks!

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We made it up to our room on the complex airway floor by dinnertime and Levi was not a happy boy most of the evening. I was still running on my 3.5 hours of sleep and hadn’t been able to eat anything all day; my strength was fading as I rocked him for hours and hours. I pleaded with God for a night of rest for him and I and by 11pm he was sound asleep. We managed to piece together a 7 hour night which is more sleep than I have gotten in weeks!

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The drive back took about 8 hours due to some accidents along the way, but Levi again did wonderfully. When I stopped for gas I noticed something…let’s see if you can spot the issue.

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Little stinker. I don’t know how long he stayed like that, but his oxygen saturation was at 100 the whole time.

I tried to keep my mind active for the 14 hours in the car and did a whole lot of thinking. A whole lot!

Before I dig into the deep stuff I do want to share a praise with you. One of the things we have been concerned about is Levi’s voice. The more we widened the vocal cords the less likely it is that he will speak. But this week he has been trying to vocalize and we are thrilled. Here is a video clip:

Okay back to my train of thought. As we expected, the comments have been rolling in from well meaning people…

“I don’t know how you do it!”

“You have so much patience!” (side note- I absolutely do not. If walls could talk they would have some stories to say about my lack of patience and my potty mouth during those times. This is something I have to pray for DAILY.)

“You have your hands full!”

As I drove I thought a lot about our current situation. And as I processed these comments I realized that at some point, maybe even from the beginning, people looking in started to see our life as a disaster. Those poor Carrolls.

And as I processed that I had this strong desire to change the way that people look at our family. Instead of pity and sadness, my desire is that people look at our family and see the hand of God. And they see how many ways we have been blessed!

One of our family catchphrases is: Uniquely Blessed.

What the world looks in and sees as broken and not ideal, we choose to see as a unique blessing.

We feel so extremely blessed that both of our children were born in a country that could give them lifesaving care. And even an age when those measures were attempted. If either boy was born even 50 years ago there is a very high chance that Malachi, Levi, and myself would not have lived.

We feel so blessed that God has given us the opportunity to be His hands and feet to both boys as we meet their daily needs. We are given the unique chance to practice loving others more than ourselves and allowing their needs to supersede our own.

We feel so blessed to be living a life that REQUIRES us to daily rely on God. I have to daily ask Him for wisdom, strength, and patience to get through each and every day. Sometimes that happens in a quiet, prayerful tone but more often than not it comes as a loud and exasperated scream in moments when I need it most. My prayer time before children used to be so generic, and now I am able to make firm requests of God and watch Him provide those needs.

I saw this funny little picture this week and have laughed and laughed at its accuracy for my family:

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We feel so blessed that God has equipped us to be parents to such special children. God didn’t give us children we were prepared for, but He has given us the tools we have needed to raise and care for them.

What exactly is the definition of a blessing? Any guesses?

It is actually defined as “God’s favor and protection”. Is the Carroll family “blessed” according to this definition? UNDENIABLY SO!

The Hebrew word used in the Bible for blessing is “esher” which translates to “happiness”. Process that for a minute. Is the Carroll family “blessed” according to this definition? ABSOLUTELY!

While it is so easy to look in on our lives and focus on the negative, Jake and I desire for you to peer in and spot all of the ways we are uniquely blessed.

God has shown us His favor. God has shown us His protection. And oh my, are we saturated in happiness.

There is a verse that played in my head over and over while I drove. I have said it to myself hundreds of times this week as I cling to its words.

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I can’t seem to get my mind off of the first line.

No disaster can overtake you

As I said this line over and over this week I felt the presence of God, as though He was speaking this directly to me. I have had so many Holy Spirit moments this week where I feel the presence of God so incredibly strong. It has brought me to tears.

“Leah, no disaster will overtake you. I have ordered my angels to guard you wherever you and your sweet boys go. You have no reason to fear. Walk with confidence in me.”

God doesn’t promise us a disaster free life. We have been ransacked with disasters. But like He says, not one of those can overtake us.

2 Corinthians 4 says this:

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 

WOW. The Carroll family has been pressed on every side, perplexed, persecuted, struck down. Life has been disastrous.

BUT GOD.

Through all of our disaster, God has rescued us from getting crushed, kept us from despair, not abandoned us, and kept us from being destroyed. My God has done that for me.

I can’t think of anything more encouraging and beautiful than knowing He loves me that much. And while the disasters come, and boy do they find their way to our family, I find comfort in knowing that no disaster will overtake us.

Oh goodness I have so many other things just bursting inside of me to tell you but I will save them for another day. I pray that this week you will be able to look at your disasters and be able to see the destruction, but also see those blessings, knowing that God protected you.

And I pray that you are able to find all the ways in your life that you are uniquely blessed.

Much love,

Leah

 

Road Trip

On Monday we tackled the boy’s pediatrician visits like a bull in a china shop. We tried to prepare for every worst case scenario with extra food for each boy, extra tanks for oxygen, plenty of outfits for both boys and parents. In the hour and a half appointment poor Jake had to run out to the car at least 6 times to grab something we had forgotten to bring in. But WE DID IT! Small successes.

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One of the things I have always dreaded the most is filling out paperwork at doctor’s offices for Malachi. They give you one page and expect it to be suffice for the answers to the 25 questions they ask…previous hospitalizations, previous surgeries, specialists, current medications, etc. It takes tiny handwriting and at least 30 minutes to fill them out for Malachi so several years ago I started printing out a summary of this information on one sheet. When we go to appointments I simply hand them an updated copy and they put it in his file.

I took the time to go ahead and create one for Levi as well, and boy am I glad I did! The chaos of managing both children in a public waiting area is enough stress, let alone having to remember and record 28 procedures, numerous hospitals stays, and 14 medications between the two of them.

The visit went decently. Levi weighed in at 10 pounds 2 ounces and Malachi at 25 pounds 8 ounces. Malachi has significantly lost weight over the last several months, something that I am really feeling guilty about. The GI doctor is the one who calls the shots on his weight and feeding goals, so I didn’t get lectured at the pediatrician but am expecting to at the end of the month with GI.

 

We have officially been approved for nursing hours for Levi! This is huge news as they have allotted us the maximum amount (500 hours a year). We are working to find an agency that will come out to our area and help, and we are thinking through how to best make that work for our family.

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Based on this week it seems that having the nurse come at night would be the biggest help! Jake went back to work and I started the midnight tango with the two boys. When one would go to bed the other would be wide awake. The few times I could get both of them to sleep at the same time would last about 20 minutes. Most nights I couldn’t help but laugh out loud and the chaos. Malachi would be seizing, Levi would be screaming. Or Levi would be throwing up and Malachi would be having a full fledged meltdown. Or we would all three just be wide awake in the bed, laughing and smiling…the boy’s realizing that together they had conquered this whole bedtime plan mom had sheepishly thought she could pull off.

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Each morning around 9:30 I would have both boys fed, ready, and out the door to take Malachi to school. That process went oddly smooth, a small victory for mom! Malachi has been SO THRILLED to be back at school with his friends and teachers. It is all he wants to talk about at home. And it makes me feel better to know he is back in his therapies and routines. He also got to ride his horse again this week while little brother watched! We also got him fitted for some much needed equipment, like a new bath chair and special needs car seat.

Levi is still a wild man who loves to move. If you watch this video you will see exactly what I am talking about haha:

Malachi picked out a dinosaur for Levi in Ohio and he has been snuggling it all week. He especially likes to rub his eyes against it when he is sleepy.

Unfortunately Malachi woke up this morning with a runny nose and all the signs of a cold. When he gets sick his seizures increase in intensity and frequency and he cannot control mucus so he throws up his feeds. We fight through sicknesses, trying desperately to keep him from getting pneumonia and requiring a hospital stay. So far this one seems to be mild, but we are watching him extremely closely.

It is a constant discussion at our house whether risks outweigh benefits for things with Malachi. School is something he looks forwards to and he is also able to receive almost all his therapies while he is there. They put him in his stander to work on weight-bearing and help him with fine motor tasks. There is also the social aspect, which he craves! Yes, it is a risk sending him but we take precautions like taking him in later so they have time to evaluate the health of the classroom and call if there is any sickness. They are also keeping him in the classroom instead of taking him into public places like the cafeteria.

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Decisions when parenting a special needs child can be so difficult. We want to give him the best quality of life possible.

Anyway…

Things we are grateful for this week: friends that have brought meals and adult conversation, the diaper chute we built into the new house, caffeine….lots of caffeine, laundry machines, tile floors that can be sanitized easily, the Laundry Doo service, and of course being together under the same roof!

I even had some clothing needs and two very kind friends went out as my “personal shoppers” and filled those needs for me.

We even had a visit from Hank, the neighbor pig. Yep- you read that right- welcome to Tennessee!

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This week Levi and mom will be headed to Cincinnati for another throat scope procedure, which will require at least a one night stay. We are praying over little Levi that he doesn’t catch whatever Malachi seems to have and we are practicing insanely good hand washing to attempt to not cross contaminate the boys.

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Even before the sickness we had decided that it is best to leave Malachi with Jake in Tennessee since he wouldn’t be allowed to stay overnight in the hospital with Levi and I. And now that Levi is just learning what having a full time mom is like, I just can’t bear the thought of leaving him again to go to a hotel. It looks like they have blocked off the operating room for him around noon on Wednesday, and since we don’t sleep anyway I am aiming to leave in the middle of the night and make the drive straight there Wednesday morning, and come back as soon as we get discharge papers on Thursday.

I am expecting them to have to do a balloon dilation to his airway. He is much louder this week which tells me that his airway has healed closed a bit smaller than before. His retractions still look mild and his oxygen saturation levels are still good.

This week I was able to jump right back into teaching our youth group and it refreshed my soul. If you are new to the blog, Jake and I are youth directors at our church; being away from our teens these last several months has been so difficult. God has laid some things on my heart that He wants to share with them, and there is nothing more exciting than watching them grow closer to God.

I missed my church family more than I realized and being back with them has been one of the highlights. Attending church does not make you a Christian. But as a Christian I desire to be around others that share the same hope in Christ that I do- it is just so refreshing! If you aren’t involved in a church family I want to encourage you to shop around to find the right one for you, and then plug yourself in. It is easy to be a Sunday morning only type person, or a twice a year for holidays attendee, but you are missing out on so many blessings!

This week I have been struggling with fear. My sweet family has been under attack and I just can’t shake the thought that we will be attacked yet again. There is a constant lingering fear that something bad it going to happen with Malachi’s health, or we will be in a life threatening car accident as we head to Cincinnati, or Levi’s airway will close too tight before we are able to get him somewhere for lifesaving help. The fear is finding its way into my thoughts almost hourly.

Nothing can cripple faith more than fear.

But we are still choosing faith over fear as I have to remind myself multiple times a day. In those moments that cripple me, I have to take a deep breath and pray protection over my family. I also have had to remind myself this week that for every mountain we have faced, there is an innumerable amount of mountains God has lovingly directed us around.

So my prayer this week comes from Isaiah 45 when God told Cyrus: “I will go before you and will level the mountains.”

Please pray with me that God levels any mountains that we will face this week, including Malachi’s sickness. Pray that my faith can be greater than my fear. Pray for traveling safety for Levi and I, and a great report from his surgeon.

God bless,

Leah

 

 

 

 

Cuddles & Chaos

This week was an interesting learning experience for us as we adjusted to life at home as a family of four. I am not going to lie, this has been much more chaotic than I imagined but like all other challenges we will rise to the occasion…we just may need a little more time to do so with ease. I went a little photo wild this week so bear with me.

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Levi’s equipment is proving to be the most challenging part of the transition, so I figured I would walk you through it all. He is still on a very tiny amount of oxygen, so to move him from anywhere other than the 5 foot area he was in would require us to wheel two large tanks of oxygen on a cart, an IV pole that holds his feeding pump and feeds, and his pulse oximeter. I couldn’t move all of that plus Levi safely so we would move everything a few feet at at time until we got where we wanted to go. After a few tries at that process we decided that Levi and all his gear was going to stay parked in the living room and we would just make it work.

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I called the oxygen supply company and they came out to put an oxygen concentrator in the house, a large machine that converts air into breathable oxygen for Levi. Attached to that large machine is a 50 foot nasal cannula, so now we can move pretty much anywhere upstairs in the house without having to wheel tanks.

 

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So now when we move him from one room to another we just have to carry him and his IV pole with the feeds. It is still a challenge but not as difficult as it used to be. When we leave the house, we now have a small backpack to carry his tanks in, and each tank lasts about 2 hours. So we have to make sure to pack enough tanks to get through a worst case scenario with him.

 

We will also pack his feeds and pump into another small backpack that will go with us when we travel. Levi gets fed 20 hours a day right now and we choose when we want his 2-two hour windows to be. Obviously if we can time them with an outing we try, as it is one less piece of equipment to try to carry around.

We are doing “spot checks” with his pulse oximeter throughout the day and leaving him hooked to it at night so it will alarm if something goes wrong. The pulse ox measures his oxygen saturation and his heartrate and is set with parameters for when to alarm.

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Levi definitely has his days and nights mixed up, and likes to sleep away most of the day. We are going to work at correcting this but he hasn’t been super cooperative for those attempts haha.

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And he is the wiggliest kid I have ever seen. He is like a wind up toy, always moving. In this video you can also hear his current stridor. It has gotten slightly worse since we have been home, so we are keeping an eye on it. We will go back to Cincinnati next week anyway for an MLB, so unless he is dropping his oxygen saturation or working harder to breathe then we won’t worry.

We are also getting to know him pretty well and seeing his personality more than when we were in the hospital. He absolutely LOVES movement…his swing, his rocker, his bouncy seat. He does not particularly enjoy being held, especially when he is getting sleepy. But if you do hold him, it is IMPERATIVE that you master the butt pat.

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Levi is a gassy little boy who spits up frequently. We go through LOTS and LOTS of laundry. A local friend signed us up for a service where a company will pick up a load of laundry off your front porch, wash it, fold it, and bring it back within 24 hours! We have had several friends donate a load to our family, and the owner of the company even agreed to match all donations! At this point, we have enough credit for three months of laundry service! Absolutely amazing and humbling.

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Nights have been the most interesting challenge for our family. Malachi has been going to bed around 10:00 and gets up at 3:00. We usually stay up with him until 5:00 and if he is still awake we lay him in our bed and let him watch cartoons while we go back to sleep. Levi has been up and down all night long, sleeping no longer than an hour and a half at a time. All four of us typically end up in the living room together for a few hours each night. Our mantra this week has been “divide and conquer” and we each just take a kid, but Jake will go back to work this week and things will have to change.

Let’s talk about Malachi. Oh my goodness that little boy has melted my heart so many times this week. He understands so much more than we expected and adores Levi. We let him “hold” Levi at least once a day and he lives for those moments. He  isn’t very gentle when he is near Levi which is a concept we weren’t sure that he would understand.

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He wants to be near him at all times, and even threw himself out of his seat (for the first time ever) trying to get over to him when the song “Rock-a-bye Baby” came on. I was sure he would have a black eye, as he landed on his face, and when I ran over to pick him up he was smiling from ear to ear, proud of his accomplishment to get out of his seat. I didn’t know whether to be mad at him for endangering himself or proud that he moved his body in such a purposeful manner!

In addition to being in love with his baby brother, Malachi is also ecstatic to be home. I took him to his horse therapy on Monday so he could ride his horse and we are slowly getting back into his routines. Today he and I went to church and he was in anticipation the whole ride there.

Jake put together Malachi’s birthday gift (from February) today and Malachi loves it! It is a giant swing for the front porch that is built up on the sides so he can stay in it safely.

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We kept Levi in most of the week but attempted leaving twice to practice getting his gear out. After one outing I asked Malachi if he wanted to go and he said “yes” with his sign language. I asked him if he wanted to go home and he adamantly said “no” with his signs. So we talked through some options and he made it clear that he wanted to go to the park with his daddy. So of course, that’s where we went!

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Tomorrow we will attempt our first appointment day with 3 appointments between both boys. It will require us to be on the road for a total of about 5 hours and thankfully Jake is off tomorrow. The rest of the week is devoted to me figuring out how to care for both boys while maintaining some level of organization and sanity. I have already stocked up on whiteboards and have them all over the house.

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Speaking of medications, I was able to make it to my hematologist this week to follow up on my blood clot. I have been on blood thinning injections twice a day for the last four months and he feels relatively confident that it is safe to stop them. I will need to keep watching for new signs and symptoms of another clot but for now I can stop the medication. Praise the Lord!

Alright, time for some Leah honesty. This past week has been refreshing- mentally, physically, emotionally. These last 5 months have been brutal on me in so many ways I never thought possible. We have been through hundreds of days in the hospital with Malachi, numerous surgeries, procedures, and hundreds of appointments. But I have always been able to keep my stress under control.

I wasn’t ready for a round 2. I wasn’t ready for more bad news and for more complications with a second child. And when it hit my body just shut down. I couldn’t eat, I couldn’t sleep, and I have never shed more tears in my life. Every single day there were several moments that I came close to passing out and would have to sit down. Every single day had an undertone of lingering nauseousness. Each day I had to find a place to hide and would let the tears flow. It was a level of emotional exhaustion I never imagined existed.

I saw this video clip this week and it was eerie how unbelievably relatable it is. I don’t like being dramatic, but each and every moment in this ad is one that I have lived through in the last few months:

Being back at home has lifted that cloud off of me. I am actually getting the chance to enjoy being a mother. I am taking care of my son without a video camera watching my every move, or having to ask for permission to bathe him. I can pick him up EVERY TIME he cries, and I can spend every second next to him, attending to his needs.

So while this new life is chaos and hilariously unpredictable, I LOVE IT with every fiber of my being.

Today is Easter, and last night as I rocked my baby I started thinking about Mary, the mother of Jesus. I thought about all that I had been through, and it all pales in comparison to having to watch your son be beaten, nailed to a cross, and murdered. I have had to watch both of my sons endure some very hard and painful things, but they were all done in attempts to preserve their quality of life. I can’t imagine watching my son be put to death…

Did she know? Did she know that he had the power to remove himself from that cross, but made the decision not to? I can’t imagine the broken heart she had that night as she walked away from her son’s broken and lifeless body.

I am sure she was confused. Why would God have trusted her to carry, raise, and love His one and only son only to watch him die a criminal’s death. I am sure she was thinking that there must have been a mistake…this isn’t how it was meant to be.

But that is EXACTLY how it was meant to be.

Romans 5:6-8 “You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.”

It still blows my mind. Christ did that for you and I- as unworthy, disgusting, and sinful as we sometimes are. Sometimes we have to endure some pretty terrible things in life that are out of our control. But the most amazing part of the whole story is that Christ made the DECISION to die for our sins and did so willingly so that we could have a personal relationship with God.

Many people ask me about my faith and often wonder how I still have a relationship with God after all we have been through.

The answer is easy for me…God is good. All the time. And He desires a relationship with each of us SO much. If He loves me enough to send His only Son to die for me, then why would I ever doubt His love for me?

So even in my worst moments as I watch my children suffer, I still firmly believe in my heart that God is good. ALL THE TIME. And the things we are struggling through aren’t from Him. Those moments that the devil sends my way only push me into a deeper relationship with God.

I don’t know that I make much sense these days with my words. But I hope your take away from all this is the reminder that Christ’s death allowed each and every one of us can have a personal relationship with God. I hope that you see how valuable and amazing this gift was for us.

Both of the boys just fell asleep so that is my cue to wrap this entry up and head to bed…it is likely for just 20 minutes until Levi wakes up again, but by golly it will be a glorious 20 minutes.

Thank you for checking in on our family and for continuing to pray for us as we navigate the newness of our situation.

Much love,

Leah

 

 

We Are HOME!

It seems almost unreal, but our family is finally home!

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Yesterday morning an organization called Angel Flights flew Jake from Cleveland to Cincinnati and the four of us made the 5 hour drive home.

The drive itself was about as chaotic as we expected with lots of messes. I will allow you to use your imagination on that one haha. But coincidentally Levi got to have his first bath at home when we walked through the door!

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The last 12 hours have been so surreal- almost like a figment of my imagination. Between the two boys we were up and down all night, but we are together! This morning all four of us laid in the king size bed and just soaked in our togetherness.

Malachi is a different kid with Levi around. He is very serious as he listens to his brother’s every move and is very concerned when Levi cries. Levi doesn’t quite share the same infatuation with Malachi but tolerates him well. 6955C58A-D7C0-4A74-8D72-802C1AFBD1DB

I took this video this week of Malachi playing his piano for Levi:

We are one happy family.

Yesterday on our drive we needed to feed Malachi (a 45 minute process) and Levi needed to get out of his car seat. We tried to find the emptiest parking lot we could find at lunchtime on a Sunday and ended up at a random Japanese steakhouse in the middle of Kentucky. Jake and I couldn’t help but laugh as we wheeled in Malachi with a dirty diaper, Levi covered in vomit in his car seat, a feeding pump, and a giant cart on wheels with two large tanks of oxygen.

They settled us in the corner of the restaurant and as we sat there, a conglomerate of choas, I started to tear up. When I looked over to Jake he was doing the same and together we both breathed a sigh of relief, joy, and victory. For months we have fought and fought for our son, for our family. And here we were, all together…granted we are literally a rolling circus, but we are together.

To be honest, I held my breathe most of the day yesterday. As much as the devil has been after our family I wasn’t so sure he would let us get home without a fight. But as we got closer and closer to home and I saw those Tennessee mountains that lead home I let my guard down and allowed reality to sink in. And I couldn’t stop smiling.

This week we will be finding our groove and cherishing every moment. Our church family has organized meals for our family, friends have cleaned the house, and we have zero plans other than sitting in our home as a family of four.

Now for some medical updates.

Levi had his MLB (throat scope) on Thursday afternoon and while it does look like the area is healing very well, there was some granulation tissue, which is basically tissue that forms on a healing wound. So instead of his airway being smooth, there are now some bumps which are catching some of his secretions instead of letting them smoothly go down his throat.

His airway has tightened a bit since the last scope. As it has healed it has pulled in and is more narrow then last week but it still seems open enough to allow him to breathe trach free.

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Because of this, Levi will need to have another throat scope done in three weeks (April 11th). It will require us to stay at least one night, which I am not looking forward to one bit. But being able to go home now is a blessing!

Granulation tissue can also make his breathing louder. Right now he sounds like a goose and has a low pitch noise when he breathes. Aside from the noise, he is still doing very well with his breathing and is on 1/8 liter of oxygen, which is not much at all.

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This week I was educated on Levi’s oxygen, feeding pump, g-tube, and pulse oximeter. We learned that Levi likes to swing and loves to be held. At all times.

We also learned that Malachi is one awesome big brother. He loved the opportunity to be near Levi every day and would get excited each morning when I told him where we were going. I continually talk to him about what a Big Brother is and how he has to share his toys, books, and his mommy. I also let him “hold” Levi and when I took him away Malachi signed “more” so I put Levi back on him again. Malachi even moved his arm around Levi and rested it on his belly. He is so excited to be able to interact with his brother.

I have been trying to involve Malachi as much as possible, just like you would a typical child. I will hold Malachi close to Levi’s swing to let him rock the baby. I even put him in the bed with Levi so he could grab his little feet, and Malachi thought is was hilarious that Levi was kicking him.

Things are about to get seriously crazy for our family. In the next month and half I will be cramming in all of Malachi’s specialist appointments that we have missed over the last four months, and adding in all of Levi’s specialists. Aside from his therapies we will have about 16 appointments to travel to…Nashville, Cincinnati, Chattanooga, and Cleveland.

That means I will need to figure out quickly how to cart a 5 year old immobile toddler, a 4 month old baby, oxygen tanks, pulse ox, feeding pump, and all the other gear that babies and kids need. I will also have to give 14 different doses of medications each days between the two boys.

Game on!

I have had a lot of God moments this week as I reflect on our nearly five month fight for Levi. I don’t know if you have ever been overwhelmed with the presence of God but it is an amazing feeling. I continually find myself speechless, only being able to utter the words “God, you are good.”

Last night as I laid awake and listened to Levi’s squeaky little breaths I thanked God. Although we have been through the ringer, I can’t help but feel that God’s hand of protection was on our family. The road was rough, but I still feel that we never left the palm of God’s hand and he softened some of the potholes in the road.

I started thinking about the story of Job and how when Satan decided to test Job, God put parameters on him. Even in times we are under attack if you are a child of God it doesn’t matter what the enemy has planned. God’s plan will always supersede the plans of the enemy.

Psalm 23:4 “Even though I walk through the darkest valley, I will fear no evil, for you are with me…”

I would love to write more but there is a really cute baby staring at me and I have spent too many days not being able to pick that boy up. Thank you for sticking with us through this journey and for praying without ceasing for our family. Please continue to lift us up in prayer as we navigate life at home with our unique and amazing little boys.

And don’t worry, I will continue to update the blog each Sunday! It wouldn’t feel right to leave you all hanging!

Plus these boys have more mountains to move!

Much love,

Leah

 

To Be Continued…

And exhale.

Have you ever been anxiously awaiting something? And the nerves from waiting are almost too much to bear as your stomach turns and twists?

This whole journey has been a series of those moments where we do a surgery then have to wait 1-2 weeks to see if it worked. It is kind of like a TV series that leaves you on a cliffhanger at the end of the show with a “To Be Continued…”

I am one of those people that reads the last chapter of a book first so I know how it is going to end. Otherwise I will drive myself crazy envisioning the what-ifs and not actually enjoy the process of reading the book. Movies like Beauty and the Beast made me a nervous wreck as a child. The stress of waiting these last 4 months has taken it’s toll on my spirit as I anxiously wait for good news only to then be hit with the bad news that it didn’t work.  It is hard to keep believing, hoping, and fighting when that devastation knocks you down like a tidal wave.

But this time was different…Levi’s most recent surgery looks like it was successful. Praise. The. Lord. We have to keep in mind that as he heals this could change, but initial thoughts are that it has worked.

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Levi went in for his MLB (throat scope) on Monday and the surgeons were very pleased with how the rib graft looked. It stayed in place and has started to heal, solidifying it’s placement in his airway. We were able to extubate him (take him off the vent) on Tuesday afternoon and put him on just a tiny bit of oxygen. The following 48 hours were nerve wrecking as we watched to see how his body would do on it’s own without oxygen support. We weaned him down and he did great but got tired and had to be put back on .25 liters. We are going to continue trying to wean him off over the next several days, as we are thinking that his withdrawal from morphine may have contributed to his lack of endurance off oxygen.

But even at his “worst” without oxygen he was able to maintain an oxygen saturation in the low 90s! For those who don’t speak medical, 100 is as good as it gets and ideal is above 94.

The big negative from the surgery is that it does seem like Levi’s voice has been affected. His vocal cords aren’t coming together well anymore and so he is unable to produce many sounds. There are things we can do later in life to try to help give him a voice, but for now we will just pray that he will be able to speak. I did hear him cry for the first time this morning for about 2 seconds so that was exciting!

Levi will go back to the operating room on Thursday (unlike the original plan for scoping this Monday) for another throat scope to make sure everything still looks like it is holding well. But based on how he looks, it seems that this surgery did the trick.

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So let’s talk about the future with Levi. This isn’t an issue that we can ever “check off the list”. So we may have succeeded at avoiding the trach for now, but he will have to be watched closely for many many many years- and possibly even the rest of his life. Hypothetical example here, but there may come a time when Levi is running on the playground and we notice he has a harder time catching his breath. Or we start to notice his breathing get a little louder than normal. When those things happen we will have to bring him back to his surgeons to have them make a plan for what they can do to help. That plan could likely involve more surgeries and his follow up care will include LOTS and LOTS of MLBs (throat scopes) as we watch for new issues.

So while we have found a solution, it is essentially a temporary one while we wait and see. Jake and I have learned through life with Malachi that you will make yourself sick trying to envision the future. Sometimes it is best to look at the successes from just today and not let worry rob you of that joy.

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What next? Thursday’s throat scope will determine the next step. If it looks good, we will talk about discharge. If it looks decent but they will want to look again we will have to stick around a few more weeks…possibly staying at the hospital but possibly staying at Ronald House with Levi.

Our plan now is to bring Levi home on a small amount of oxygen. It will make me feel better to have it on hand in case of an emergency. If Levi gets sick and his airway swells at all we could be in serious trouble. I like the idea of having a support option available instead of having to rush him to the ER.

He will also be coming home on continuous feeds through his g-tube; that means basically that he is being fed a small amount every second of the day. Obviously this is not ideal as he will be hooked to a feeding pump all day, so we will be working hard to consolidate his feeds a bit more once we are home. I would love to get him down to getting fed every three hours.

We need to be very cautious about trying to get Levi to take a bottle. We widened the gap to his airway significantly and will need to run tests to see if it is safe for him to swallow liquids without that liquid going into his lungs (called aspiration). We are getting dangerously close to the time frame in which babies can no longer learn how to drink a bottle but we will see.

On to the good news from today…Levi has been moved out of the NICU and onto the Complex Airway floor! While this may seem insignificant to you, this is huge to us. We are now able to spend time with Levi as a family, Malachi included. Today as all four of us sat in Levi’s room together I couldn’t help but feel overwhelmed with happiness and encouragement that we can make this chaos work. This week will be the true mom test as Jake heads back to Tennessee and I have both of the boys in the hospital room with me. It will be good to figure out how to manage medications and feeds for Malachi while also caring for Levi as much as possible. My plan is to take Malachi over by 9am when the doctors make rounds and stay until 6-7pm. We will see how all that works out!

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Levi is still on a 10 day weaning protocol to help him get off the morphine he was on after his procedure. He has tolerated it well and today was the first time I noticed him having tremors and being agitated- a sign that he may need a little more medicine in him to help with those symptoms.

 

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Malachi is having a much better week, particularly with his seizures. He has not had another large one since his random one last week, and is back to having his normal amount which is about 12 a day. When he is able to be with me all the time we can keep that number down to 4-6 a day so I am really hoping this week will be a good one.

Here is a silly video of him playing with my half brother and half sister!

We are blessed beyond measure. I can’t even put into words how blessed we are. In the weeks following Levi’s birth Jake and I would just sit and stare at each other shaking our heads in disbelief. How in the world could this happen to us…again? After such a watched pregnancy we never saw this coming. This was supposed to be the easy child I prayed to God for. This was supposed to be the one out of my two children that I could drop off at a friend’s house on days of Malachi’s appointments. This was supposed to be the brother to Malachi that could yell from the other room “Mom, Malachi is having another seizure.” and help him through those moments because he would be a rock star little brother.

This was supposed to be the one we took home from the hospital days after his birth. This was supposed to be the one to breast feed and to get to wear all those cute newborn outfits. Selfishly, this was supposed to be my chance to experience normal.

With Malachi’s early birth we didn’t have time to really mourn, and we didn’t know any different. But with Levi’s complex airway issues we feel like we just got hit with a wrecking ball that no one saw coming. We had so many hopes and goals this time around.

But in those moments that brought us to our knees with disappointment, grief, and questioning, God brought so many of you to strengthen us. We have felt so much love poured out for our family over the last several years, and it has been intensified over the last 4 months as we face yet another battle.

We have had people fly in and drive in from Tennessee to help with Malachi. We have had family and complete strangers here in Cincinnati give up time to come sit with him for an hour to let me go be a mom to Levi. We have had churches and individuals bless us beyond what we deserve with encouragement, financial gifts, gas cards, and prayers. Sports teams in our hometown put out donation jars. Jake’s high school decided this week to sell a product that had created and give all the proceeds to Levi’s medical bills. We have even been contacted by Angel Flights offering Jake a free flight to Cincinnati when Levi gets ready to be discharged so we can all ride home together in the same car.

Jake and I continually talk about how humbled we are by our community of support. We didn’t deserve it the first go around, and we haven’t deserved it this time either…but God is teaching us so much through each and every step.

When we made the decision to bring Levi to Cincinnati we did so with a huge question mark about how we were going to possibly fund such a huge venture as it was “out of network”. His bills are now up to $1.8 million dollars (before insurance payments of course). Not to mention the looming hundreds of thousands of dollars required for Malachi’s regular care and necessary therapies each year. We tried to listen to God and determine if this step was in His will and we felt so strongly that it was. We tried to make this decision taking the financial aspect out of the equation.

We started talking about fundraising and asking for financial help, but both felt an intense conviction from God about doing so. I heard Him say “Are you not trusting that I will provide?” We made the decision to give our stress and fear to God, trusting that He would provide a way.

Little did we know that God would provide for us exceedingly and abundantly more than we could have ever imagined. We humbly read each note and message that talked about how “God had laid it on my heart to give…” We have experienced and witnessed the provision of God and watching it unfold has strengthened Jake and I’s faith in so many amazing ways. Just last week I got a call from our insurance company letting us know that they re-evaluated Levi’s case and determined that his Cincinnati trip was an “emergency” and that they are covering his NICU stay at the “in-network” rate! WOW!!!

I think many times we overlook the way in which God works behind the scenes. And we forget that our God is in the details. We like to look to Him for the BIG things, when in reality He is working in all aspects- no matter how minute they may be.

You may not have financial needs. Maybe your needs are emotional, relational, health related. But I want to encourage you to give those needs to God then simply sit back and EXPECT God to act. Look for Him in the small things. Look for the ways in which He is aligning things for you.

And to everyone who has allowed themselves to be used by God to meet our needs, we want to say thank you. I started a list early on with all the names of people I needed to write thank you notes to. That list is now three full pages and while I desire to reach out to each of you individually with a thank you, the odds of that happening before Levi’s 10th birthday are slim haha! Please know that we are praying blessings over each and every one of you, and we are absolutely overwhelmed with gratitude.

Please pray for Thursday’s procedure. This will be THE ONE that determines his readiness to go home! We are believing in and praying for a good report.

Much love,

Leah