The Unknowns

Well, things just took a weird turn in the USA. We have a lot of international readers so in case you aren’t informed, the United States is seeing a rise of the highly contagious Coronavirus and is taking preventative measures as a country to to keep it from spreading.

In our specific area in Tennessee there has been 1 case an hour south of us and 1 case an hour north of us that has been reported. Our school system has now closed for 2 weeks but likely will be closed much longer. Churches have closed, sports have been canceled, and everyone is trying to figure out how to prepare for the next wave of this.

While the coronavirus isn’t leading to the death of children (yet), we have still made the decision to put the boys into lockdown mode. We had to do this through the winters early on with Malachi so it isn’t a foreign concept to our crew. My reasoning is that if the boys get sick with any other illness they could potentially need a hospital bed, an ER room, or a ventilator…things that other adults could truly need during this pandemic. So we are doing our part to stay out of the hospital by keeping ourselves locked in the house. We have canceled all appointments for the boys (13 appointments in 6 days).

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Thankfully we still have our oxygen concentrator for emergencies and plenty of tanks in case either child needs it. We also have lots of other medical devices that can keep us away from the hospital longer, and their g-tubes provide a way of hydration. I have stocked up as much as possible on their medical supplies, medications, diapers, and formulas so we should be set for at least a month for the boys.

I also loaded up our freezer and pantry with food for Jake and I, picking up extras for the many families in our community that I know can’t afford more than a week’s worth of food at a time. I get calls all the time working in the church office from families, particularly grandparents raising small children, that just don’t ever have enough food. God has laid it on my heart to help these families out and Jake and I have provided food for them on several occasions this year.

As I felt my heart starting to need the security of food on hand I couldn’t help but picture these small children we have encountered in these dilapidated trailers in our small town. I was very blessed that my trips to the store were at times when things were being restocked so we were able to get all the essentials and some lockdown luxury items too like double stuffed oreos. We used the money we usually spend on food for our 40 teenagers on Sunday evenings and got enough to leave a bag of food on several doorsteps in town.

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There is so much unknown in the nation right now and it is natural for everyone to get that anxious feeling in the pit of their belly. But there is a tiny part of my heart that is sincerely looking forward to this break for our family. We needed a reset, and this is the perfect opportunity for that. We have created a schedule for Jake and I so that we are each able to accomplish the things we have neglected over the last few weeks like devotion time, sleep, home organizing, and focused therapy exercises with the boys.

This break is especially welcomed after this past week! We had all sorts of chaos added in with a nail in the van tire and a giant water leak in the yard.

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And then there is the toddler tornado that is Levi! A short story for you on this wild man…

On Tuesday I got the boys loaded up and headed to their therapy appointments. As I carried Levi into the office I felt something weird on his butt so when I passed him over to the therapist I investigated. I reached down into his pants and couldn’t find anything, but when I reached into his onesie I felt something cold and metal. I started t pull the object out and it just kept coming. He had somehow stuffed a full size dinner fork from our silverware drawer into the butt portion of his onesie for safe keeping. I was a mixture of emotions: embarrassed, impressed, and hysterically laughing.

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The boys both ended up with me at the office this week; I just didn’t feel comfortable sending Malachi to school with all the statistics of this unknown illness floating around. He loves getting to watch movies while I work. And Levi loves getting into mischief while I work.

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Malachi got to ride his therapy horse like Superman, one of his favorite things to do.

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And of course we ended up at more soccer games throughout the week.

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Levi is officially a stuffed animal kid, but he is oddly picky about which ones he attaches to. Right now he is smitten with his monkey, his elephant, and his puppy dog.

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Levi’s overnight oxygen study results came back and he stayed at 96-97 most of the night. Not a single dip into dangerous levels so we are cleared to stay off overnight oxygen for the time being. I know it isn’t something he can control but I am so proud of him!

I hate to trivialize anyone else’s fears right now, but God has mentally and emotionally prepared Jake and I time and time again for things going quickly from calm to chaos. It would be easy for you to read that sentence and feel like I am bragging about our ability to deal with the hard stuff of life, but that is definitely not the case. Just give me some time to explain…

Our boot camp training in going with the flow has been paying off this week as we have had a sense of calm where others have panic…because we have had to learn to trust God in ALL things, not just the easy ones.

There have been so many times that trusting God was a very hard thing to do. Unbelievably hard.

This video is from exactly two years ago. Levi had just had his 14th (ish) surgery on his airway. They had taken a piece of his rib and propped open his airway with it to try to avoid the tracheostomy. They still didn’t know if the piece of rib would hold, and they definitely didn’t know if the surgery would be successful.

The unknowns in life will emotionally wreck you until you learn to give them over to God.

I read someone else’s post on Facebook this week and it was so beautifully written but I can’t seem to find the post again. So in an effort to summarize, the author was talking about how the children of Israel in the wilderness were provided food by God each day, manna in the morning and quail at night. They were warned not to take more than they could eat and when some of them tried the food rotted.

Reading her post led me to thinking about the story in 1 Kings 17 about Elijah, a prophet of God. He had just predicted a drought in the land for many years and God said to him:

3 “Go to the east and hide by Kerith Brook, near where it enters the Jordan River. Drink from the brook and eat what the ravens bring you, for I have commanded them to bring you food.”

So Elijah did as the Lord told him and camped beside Kerith Brook, east of the Jordan. The ravens brought him bread and meat each morning and evening, and he drank from the brook.

Time and time again in the Bible we see examples of God providing supernaturally for his children. He literally dropped food from the sky for the Israelites and sent food via ravens for Elijah. But God never dropped an abundance, He instead dropped only enough to sustain them through that day.

He wanted their trust. He wanted them to look to Him each morning and each night, expectantly watching for His provisions.

How often do we look up in those moments of need? How often do we hold our hands out, expecting food to be dropped in them?

God loves our expectations because it is a fruit of our faith and trust in Him.

So as we enter a new unknown as a country I pray that your heart has the peace of God. And look for opportunities when God drops enough in your arms for you to help out someone else- maybe someone else whose arms have forgotten how to raise in expectation. Maybe, just maybe, God is using each of us to re-ignite the forgotten faith of others in a time when it is needed the most.

Philippians 4

19 And my God will supply all your needs according to His riches in glory in Christ Jesus. 20 Now to our God and Father be the glory forever and ever. Amen.

Join me in prayer this week that God opens doors for us to be the hands and feet of Jesus, giving us the power to multiply 5 loaves and 2 fish to feed his hungry children. And pray that the culture of fear and anxiousness morphs into one of confident reliance on our mighty God.

And don’t you worry about us Carrolls. We are tucked safely in at home, and more importantly tucked safely into the palm of God’s hand. There is no safer place to be!

Much love,

Leah

What-Ifs

This week we were able to tackle some big things on our to-do list medically.

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Back in December Levi absolutely bombed his sleep study by not even letting us get the wires on him. After wrestling with him for a few hours and not succeeding at getting a single lead on his head I packed him up and went home.

I knew this wouldn’t go over well with his doctor team (Chattanooga or Cincinnati) so the next day I called each of them to see if there were any alternatives that were a little less invasive that we could try instead of trying to repeat another sleep study. Cincinnati suggested a home pulse oximetry study and we agreed to try that route.

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This week I was able to go and pick up the equipment needed to do the study at home and worked to sneak it onto him while he slept. The machine recorded his results and will report them to the doctor, who will then in turn call me with a summary. But from what I could tell on my spot checks throughout the night he stayed around 96 while sleeping (100 being the best of course, and under 93 being a little concerning). I am very curious what his levels were in his deepest sleep cycles.

 

We were able to get 5 hours in before he woke up and tore the machine off.

With Levi’s paralyzed vocal cords, when he is relaxed at night his airway is also a little more relaxed causing sleep apnea. It used to make him breathe very loudly at night but in the last few months he hasn’t been squeaking in his sleep and we have been able to wean nighttime oxygen.

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We have been trying so hard to get Levi on Malachi’s therapy horse, as the sessions would be so good for his type of cerebral palsy. Each week he gets more and more comfortable around the horse and will take a lap or two; Malachi isn’t a big fan of sharing his horse with Levi but has been a good sport.

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He has also been getting more comfortable with the barn cats which is huge!

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I wish I had some sweet pictures of Malachi on the horse but we tie my phone to the saddle so he can listen to music while he rides.

Malachi has had a great week, staying at school three days in a row without issues. His original stomach medicine is finally in stock and it has been making such a big difference in his comfort throughout the day. His med is a 24 hour delayed release one that works all day, and the replacement we were using while it was out of stock didn’t work that way.

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He is growing up so much…I can’t believe he is 7 years old.

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While Malachi is at school, Levi is at the office with me. While he is an absolute doll he definitely kills my productivity.

He has been a great helped though around the house. He has taken an interest in helping with as much of Malachi’s care as he can and will pretend to do the things I do to take care of him.

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Our boys soccer team played games Thursday, Friday, and Saturday but with the cold temperatures I ended up watching from the car in the parking lot for most of them. Everything is an adventure for Levi so he didn’t mind and Malachi might be the most easy going kid you will ever meet.

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This week I have caught myself stressing a bit more than normal. We have been having some issues with the boys insurance, all correctable issues but require me to make a lot of phone calls and file a lot of paperwork. In the meantime we are getting some pretty enormous bills which can look daunting.

Adding onto that, we have recently started a few projects around the house to enhance Malachi’s life which has caused us to dip into savings. And while I truly feel at peace about the decision to proceed with these projects, the what-ifs launched an attack in my mind…

“What if Malachi’s shunt malfunctions and we have to pay for an emergency brain surgery next week?”

“What is Levi’s oxygen study comes back and we need to do some more surgical interventions in Cincinnati (out of network)?”

“What if we end up getting stuck with these incorrect medical bills and that money we used for our projects will have been desperately needed to stay out of medical debt?”

As these what ifs started to swirl in my brain I could feel my heart rate beginning to rise. I was pulling up to the house and when I opened the mailbox to check the mail there was an envelope inside from a random church in Ohio. I opened it up to find a check for $1,000 and on the memo line it simply said “gift”.

I actually started laughing to myself after I opened the envelope, as literally 10 seconds earlier I was so anxious in my spirit as I played the what-ifs. God’s timing is such a special thing.

As I look back on our walk with two medically complex children I see God so obviously present. He is continually providing for our family in such beautiful ways, yes monetarily but also physically, emotionally, and spiritually.

I think back to the Israelites wandering in the desert for 40 years, God providing quail and manna for then to eat as they wander towards the Promised Land. Even when God was literally raining food down to them they doubted his provision in their lives.

So often I am guilty of the same thing. God provides time and time again, opening doors even when they look sealed shut. But things get stressful and I begin to doubt, seemingly forgetting about the many times he has provided in the past.

I guess that is my control freak nature trying to creep back in and grasp instead of giving it over to God. I pray that I can walk boldly with God, trusting Him instead of side-eyeing Him and secretly questioning what He is up to.

Today I am thankful for His grace. He sees me in my doubts and my mind wanderings and He reminds me that He is always meeting my needs even before I recognize them.

And now for a bit of humor mixed with reality…

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Everyone has been asking me if the coronavirus is making me anxious, as we have two immunocompromised kids. The things that the CDC are recommending people do to avoid contracting the virus are things that we have already adopted into our daily routines anyway so it doesn’t really change much for us.

I am also finding comfort that there have not been many pediatric deaths from the virus, and professionals are saying that most children have already had a strand of it and built up more of an immunity. Interestingly enough, Malachi had a different strand of the coronavirus when he was sick in January! I remember the doctor reading the report from his bloodwork and telling me how obscure it was and saying that it mimicked the common cold.

And just to clarify, Malachi has never had the strand of the virus that is all over the news.

This time change is hitting our crew hard. Their little bodies have to adjust to getting their meds an hour earlier and their feeding schedules are all out of whack. We are off to bed!

Thank you for taking the time to check in on our little family and for listening to me ramble. I hope your takeaway from today’s entry is that God is good ALL the time.

Much love,

Leah

 

 

 

The Yoke

The theme of this week has been sleep deprivation, which often leads to emotional roller coaster rides for mommy.

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As we tackled appointments I tried to prep my heart for Levi’s trip to the eye doctor. I resoluted to not get emotional or angry, and to definitely not cry in the parking lot.

In the past these appointments have needlessly taken several hours. To avoid me trying to corral the boys in a tiny waiting room I now snag the first appointment at 8am. This means I have to be up by 5:00 to get everyone dressed, medicated, fed, and on the road but if it means we don’t have to sit in a waiting room for hours I will begrudgingly do it.

We got there early, dilated his eyes, and then we waited…and waited…and waited. The waiting part exhausts my emotions as we are in a small room with at least thirty other people, mostly kids and it seemed like all of them were coughing up nasty junk very close to my immunocompromised boys. We spent 1 hour and 45 minutes in the waiting area before we were called back to see the doctor.

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He looked into Levi’s eyes and said “Hmm that’s unusual. That’s very abnormal.” And I could feel the emotional floodgate starting to waver. When a brain is deprived of oxygen the body starts to kill off other body systems to try to preserve the brain, particularly attacking muscles and nerves. It seems that Levi’s brain damage attacked his optic nerve as well, permanently destroying it.

The doctor explained that it is very likely that Levi will be blind in his left eye (if he isn’t already). The right optic nerve looks okay for now. There is nothing that we can do to fix the problem or reverse the damage.

As we left the appointment I sat in the parking lot and processed. I couldn’t spend too much time in my emotions as I had to head to our next appointment across town. I don’t know if you have ever had a traumatic situation in your life- a moment that you never want to remember as it brings a flood of painful emotions. I keep trying to push the reality of Levi’s brain damage away from my thoughts, but each time we find more “domino effect” issues I have to face that reality all over again.

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I spend every week taking my boys to appointments and therapies, trying to find ways to help them cope with their brokenness. We try surgery after surgery to improve their lives. We cram our weeks full of therapies to help them learn coping mechanisms and function in spite of their brokenness.

Every single day I have to face the hard realities I try so desperately to avoid. It is a physically, mentally, and emotionally exhausting world. This week I have felt the weight of this life and allowed myself to mourn a bit.

But staying in that dark place isn’t good for my family so I have had to wipe off my feet from the eye doctor appointment and move forward. There is nothing we can do to change or affect the outcome so dwelling on it doesn’t make a whole lot of sense!

This week we have spent a lot of time snuggling, reading books, and desperately attempting “normal”. Malachi is currently obsessed with the book “The Wonky Donkey” and is in a movie watching mode. His favorites this week has been the Minions movie and the Lion King.

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Levi is, well, Levi. This week he came to me in the kitchen with something in his hand to give me. I held my hand out to receive his gift, and he dropped a fistful of toilet water into my hand. I followed the wet trail to the bathroom to find that he had decided to “clean” the toilet with the toilet brush then apparently played with the water.

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Malachi attempted school this week but they called me about an hour later and said he was crying. They asked him if he wanted mommy to come pick him up from school and he signed YES YES YES. I picked him up and he was completely back to normal when we got home. I think he just wanted to be with me for the day!

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And for the record, those are Jake’s feet not mine haha!

We have been working on several things around the house to improve Malachi’s quality of life and we made some big steps this week! On Friday we received the checks from the grant company and officially ordered the heated swim spa for the boys. It takes 3-4 weeks to arrive so in the meantime we will be prepping the area and laying a concrete pad. Thankfully some friends from church have offered to help with this step.

We have a back deck area that is in the direct sunlight for most of the day, meaning Malachi couldn’t comfortably be out there. His eyes are so sensitive to light and he shuts down when the sun is on his face. This week we had a crew come and put a roof on it so we could take him out there for family time. We have a large bed swing to hang when it is completely finished.

We took him out there today for the first time and he was SO excited! We have been calling it “Malachi’s treehouse” and the suspense has been so cute to watch on his face as he has listened to the construction process.

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Levi also approves.

I don’t know if it is the emotions of the week escalating my thoughts, but I am more determined than ever before to give Malachi the best life I can while he is here on earth. With the severity of his disabilities there is a host of things that could take him from this world in an instant. I never want to regret not doing enough to make him happy and comfortable. I want this life to be filled with joy for him.

Friday night was our youth groups annual lock-in at the trampoline park. The teens look forward to this event and always bring lots of friends, so we never really know exactly how many to prepare for. In between appointments I gathered the necessary supplies to survive the night: 30 pizzas, 320 waters, 240 canned sodas, 150 bags of chips, and a gross amount of Little Debbie snack cakes. Wal-mart pick up for the win!

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The kids haven’t been sleeping well at all this week, and I have only been getting about 4 hours of broken sleep each night. Leading up to the all nighter that the lock in would require I prayed for strength to make it through.

Jake stayed home with the boys and I took the teens. I warned Jake that nights have been rough and he definitely got a taste of the madness of nighttime Malachi and Levi. When you get one to sleep the other wakes up and the vicious cycle repeats itself all night long.

Meanwhile at the lock in we ended up with over 80 teenagers and had a really fun time. God gave me the strength I asked him for to stay up all night and drive the bus safely home the next morning. I did a Bible study with the group about the importance of being the type of friend that leads someone closer to Christ rather than away. I used the story from the Bible about the four friends that carried the paralytic to Jesus, lowering him through a roof to get him in front of Christ for healing.

After the Bible study I had the kids take turns carrying their friends in bedsheets and re-enacting the story, using the trampolines to safely catch the ones that failed. Most of them ended up accidentally throwing or dropping their friends but it is always fun to get the Bible to come to life a bit for them. And it was highly entertaining for me to watch at 2am.

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We are still playing catch up with our sleep, taking naps today in between prepping dishes for our Sunday night Bible study. Jake has the day off tomorrow and I only have two appointments with the boys so we will hopefully be able to nap in shifts. We are able to divide and conquer a bit when Jake doesn’t work in the mornings, each taking on a child for the night.

As we enter into a new week I can’t help but desperately hope that it brings better news than this past one did. We try very hard to stay positive and focus on the good reports, but lately there haven’t been many of those for either boy. I am praying for a week full of reminders that God holds us in the palm of His hand.

Matthew 11:28-30 “Come to me, all you who are weary and heavy burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

It seems a little confusing to me to think about Jesus’ burden being light so I have really tried to process this verse and decide what it means and how it applies to me.

The yoke is a wooden device that goes around the neck of oxen as they plow the fields. When we choose to put our necks in Christ’s yoke we are choosing to live a life of submission to wherever He may lead us. We are trusting that the job He has for us to carry out is a purpose driven one. And when we are walking in the will of the Father, the yoke is easy and the burden is light….because we are removing ourselves and all of our sticky human emotions from the situation.

I think it is safe to say that this week has pushed me into the “weary and heavy burdened” category so this week I will be asking Christ again for his yoke. I will be asking for Him to take the worrying and the overthinking away from me and replace it with a trust in His will and direction for my life.

I am praying for rest for my soul.

Please pray for miracles for my boys. Pray that Levi’s optic nerve isn’t damaged severely enough to cause blindness. Pray for health for both boys as we navigate lots of waiting rooms. And pray for sleep. Lots and lots of sleep for all four of us!

God bless,

Leah

 

Rebuke the Waves

We were blessed this week with some wacky weather leaving Jake with a two day work week! We loved spending the extra time together as a family, running errands and enjoying using some gift cards from Christmas on some nice meals out in between errands. We love having dad around!

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Levi is still very cautious about what he will try and we are just as cautious about what we will give him. Imagine our surprise when he stole an onion off of my salad and sucked on it for 5 whole minutes. Goofball.

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This week we will go back to the eye doctor for a checkup. Historically I leave these appointments very discouraged but I am praying that this one will end differently.

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Malachi got to go back to school one day this week and had a really great day! He also got a sharp looking haircut.

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Malachi had his weekly horseback therapy session and he really enjoyed that his dad was there to watch him. He worked extra hard, clearly showing off for dad. Levi not only sat on the horse but also let it walk about 30 feet with him sitting with the therapist! With his new cerebral palsy diagnosis it would be really good for his core muscles if we were able to get him into some hippotherapy sessions as well.

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Both boys are continuing to make progress in feeding therapy. Malachi likes to pretend that everything he eats is bugs or snakes and gladly attempts anything you give him. Levi is a bit pickier and tends to throw most of his food on the floor in protest.

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There is a phrase “If you want to know how to treat someone with a disability just look at their sibling.” Levi has been showering Malachi with so much love lately, frequently holding his hand and giving him hugs and kisses. Whenever he gets scared, like during an intense movie scene, he clings to Malachi for safety. It really does touch my heart so much.

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Both boys are dealing with a slight postnasal drip in their throats. For Levi this causes vomiting. For Malachi it causes junky breathing. His seizures and sparking back up due to the discomfort and his body temperature is also starting to fluctuate. Last night he went from 99.7 down to 96.1 in an hour. We finally have him back to a happy 98.6 but we are watching him very closely as it tends to change quickly.

When they are uncomfortable like this sleep is rare. And I am usually too anxious to sleep well when they finally crash for the night. We are in desperate need of a solid night of sleep!

We had a particularly rough night on Monday evening and Jake had to be up early on Tuesday to get to work. On those nights I take care of both boys and they tend to work on opposite schedules. Malachi stays up until midnight and wakes up for the day at 6am. Levi this week has been waking up at 2am and falling back asleep minutes before Malachi wakes up for the day.

Needless to say I was super cranky on Tuesday morning to the point where I was in tears. Yes, I realize how ridiculous this sounds but sleep has been scarce for 7 years and catches up with me every now and then. As I was ranting about being up so early I remembered the story about Jesus sleeping on the boat during a storm. I yelled to the boys “Even Jesus Christ needed sleep!!!” They just looked at me like I was crazy and I went back to my pity party.

But later I looked up that story, sure that if God laid in on my mind and heart there was something in there that He needed me to read.

Matthew 8:23-26 “When He got into the boat, His disciples followed Him. And behold there was a great storm on the sea, so that the boat was being covered with the waves; but Jesus Himself was asleep. And they came to Him saying, ‘Save us Lord; we are perishing!’ He said to them, ‘Why are you afraid, you men of little faith?’ Then He got up and rebuked the winds and the sea, and it became perfectly calm.”

Yes, in these verses we get a beautiful reminder of the humanity of Jesus. His physical needs like sleep and hunger still had to be met, even though He was fully God.

But it is the storm that caught my eye.

The Bible is very descriptive of this storm in telling us that the boat was being covered by the waves. In the other gospels we read that the boat was already filling up with water and they began to be in danger. And as you would expect, panic began to settle over the men.

Oh how many times I have felt like I have been on that very boat. I am sure you have been on a similar one at one point in your life. You look around and all you can see is the daunting and dark waves slapping you in the face. The boat, the place you are supposed to feel safe and secure (especially with Jesus on it) is now a shaky foundation and you start to doubt if you will survive the storm.

I had my boat moment this week as I looked at the facts…there is no way that I would be able to function as a medical mama on just 2-4 hours of sleep each night. The stressors of each day slapping me over and over again the in face and with them bringing dangerous doubt.

And oh how I relate with the disciples as they race over to Jesus, shocked to find him sleeping calmly through this storm. How many times do we convince ourselves that our distress isn’t seen in our storms? Or ignored by God as the waves keep growing. Our tone tends to waver between fear and anger that He hasn’t intervened already.

But read Christ’s response: “He said to them, ‘Why are you afraid, you men of little faith?’ Then He got up and rebuked the winds and the sea, and it became perfectly calm.”

Oh man, did I feel conviction after reading that part.

I like to justify my fear by thinking it is rational, logical, and deserved. But when you are a child of God, that fear indicates a malnourished faith life. When we allow logic to trump our faith in God’s plan and power we show a lack of faith in Him.

So what should we do when we face those waves?

Treat them the way Christ did. Rebuke them in the name of Jesus and watch as even the storms in our life obey Him.

So this week I am going to work on replacing my panicky heart with a faith filled one. If God has called me to this motherhood role then He will certainly equip me with the energy needed to fulfill it in a God honoring way. I am praying this week that God sees fit to calm the storms in our world. And if not, I pray that He gives me a portion of His strength to be able to rebuke that storm and sleep right through it.

This week let’s remind ourselves to not fear the waves but to embrace the opportunity to allow them to strengthen our faith.

Much love,

Leah

 

 

 

 

 

 

 

Tubies & Tubs

It’s tummy tube awareness week so I thought we would start with some facts about my tubies.

Levi has been proudly sporting his g-tube for almost exactly 2 years. During that time we have had a handful of emergencies but overall it has just become a part of our routine. He gets 4-5 feeds of high calorie formula during the daytime and runs all night at a low rate. We have a daily calorie goal we try to hit and adjust his schedule as needed to hit that mark.

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He is fascinated with his tube so we have to keep it covered and tucked away out of his reach. We fill his bag for the day each morning so his backpack full of food and ice packs is usually too heavy to wear until around dinnertime.

Levi still loves to try to eat by mouth too but we don’t rely on that method for any calories toward the count. He still has to eat very small bites, and things like crumbled crackers in his mouth can make him vomit.

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This week he has brought me a spoon from the silverware drawer and this tub of whipped cream from the fridge EVERY morning. The boy knows what he wants.

Side not here…Levi is a toddler tornado. If I turn my back for a minute I find him on the table, climbing the toy shelves, or doing something else semi-dangerous but slightly impressive. He has started carrying his toy drum around the house to use as a step stool to reach all the higher up things that catch his eye.

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And the emotional pendulum with this kid is pretty wild…

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This is his bored with therapies face.

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This is his “mom took my whipped cream away” face.

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And this is his “mom finally caved and gave me one of her stickers (aka feminine hygeine products)” face. He was super pumped about this one.

Okay, back to tubie talk…

If Levi’s vocal cords start to function normally and can close to protect his airway we will be able to take his g-tube out permanently. If they never wake up he will have his tube for life. Just a waiting game at this point; the statistic is that 50% of kids with BVCP have their vocal cords spontaneously wake up by their 5th birthday.

Moving on to tubie boy #2!

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Malachi has the same g-tube that Levi does but we use his differently. Levi’s gets pumped in over 15 minutes but for Malachi we squeeze in his feeds over 1-2 minutes. His tummy can handle the volume better. Malachi gets 4 big feeds a day and we give him a high calorie formula mixed with blended foods.

Malachi also likes to eat by mouth but really struggles and can get panicky. We don’t push foods with Malachi, but the boy can knock out some chocolate.

The tube became necessary for Malachi about a year and a half ago. While Levi was in the NICU Malachi lost 15 pounds in 5 months. The tube has allowed us keep him healthy and fed in the midst of our crazy day. It used to take Malachi about an hour to take a full bottle by mouth so the tube has been a true game changer.

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Here is the handsome 7 year old in his Valentine’s Day outfit for school.

Yes, Malachi went back to school this week for a day! He was super excited and did great.

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He got a few belated birthday cards in the mail and loved the surprise of each one.

On Thursday the boys and I packed up and headed to the hospital in Chattanooga to see Levi’s pulmonologist. I took the stethoscope and “checked” Levi and Malachi’s heartbeat at least a dozen times trying to prep him for the doctor doing it to him. He handled it slightly better than his normal reaction but still struggled with that doctor PTSD.

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The appointment went well and we are now on an annual basis with his Chattanooga pulmonologist, and annual with his Cincinnati surgeons. He will go back this summer for another procedure in Cincinnati, and will have some minor testing done here in Tennessee in the meantime, but overall the appointment went decently.

Jake’s parents purchased us a family pass to the aquarium so I attempted a solo trip with the boys after the appointment. Malachi was giddy to go see the sharks. The lighting is low there and he is able to track and see the movement of the different creatures. His joy is so contagious!

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Levi was a terrified mess when we first went in and clung tightly to Malachi’s hand for security. He was pretty anxious the whole trip but had a few slivers of joy in there.

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If you have been reading for awhile you may remember a post I did about a year ago about a stranger offering to add a therapy pool onto our home for Malachi’s muscle tightness. Unfortunately we haven’t been able to get in touch with him after several messages, leading us to believe it isn’t going to happen the way we had hoped. We are obviously disappointed but believe that God sees things that we don’t.

With Levi’s new CP diagnosis and Malachi steadily growing bigger (more awkward to carry and much heavier to lift) we have decided if we are going to tackle the therapy tub route we need to make it happen soon. We were able to apply for a grant that will cover a large chunk of the unit and have been spending the last three weeks trying to sort out the details. In the long run we will be saving up our money to add a roof system over the top (like a picnic shelter open style) to keep the sun out of his eyes. We are so excited to be able to do this for the boys and just keep thinking about the joy and muscle comfort it will add to Malachi’s life.

The unit will go right off the front porch area so we can use the existing concrete for wheelchair access. It is just a few steps from our front door! More details to come when the ball gets rolling.  Here is a photo of Levi standing close to where the unit will sit.

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On Valentine’s Day the kids and I snuggled on the couch and watched an old video of Malachi that my Facebook memories had popped up. He was 1 year old and had just been moved from the ICU to a regular hospital room due to influenza pneumonia. He looked pretty rough, but truthfully was feeling the best that he had been in nearly three weeks.

We watched the video once and Levi aggressively signed that he wanted to watch it again. I played it a second time and about half way through his bottom lip started to pout, then quiver. He studied the video so closely and when it ended he burst into tears. He ran to me for a hug, but seconds later pushed me away and ran to Malachi. He picked up Malachi’s head so gently and hugged it into his chest, crying uncontrollably while comforting Malachi. Seeing his tender heart made me start ugly crying, so proud that he has that level of empathy for others. Malachi was grinning from ear to ear, clearly loving the extra attention and hugs.

The way they love each other is so beautiful to me.

Valentine’s night I took all the single girls from our youth group out to dinner and Starbucks. Listening to them chattering from the driver’s seat of the bus took my back to a more simple time, where world’s like my current one weren’t even on the radar.

As we waited on our table at the restaurant I started to dig through my purse, something I haven’t carried for months and took me 20 minutes to find. I couldn’t help but laugh at the things I found inside:

-half of a fake eggplant from Levi’s kitchen set

-9 small bottles of hand sanitizer

-12 individually wrapped sanitizing wipes

-a diaper

-a Target receipt from June, apparently the last time I carried this purse

As I sat and mentally compared my purse contents from 2008 and 2020 it was a very eye-opening reminder of the wild ride God has put our family on. And I couldn’t help but see the change that this wild ride has had on my faith.

I never really understood what the Bible meant when it says in Mark 8 “And Jesus told them, ‘if anyone wants to come after Me, he must deny himself and take up his cross and follow me.’ ” I didn’t understand the metaphor of the cross, or what the cross really meant.

But as I read that verse now I see it all so much clearer. The cross was a symbol of pain, suffering, and death. For someone to willingly and gladly take it up on their shoulders and pursue Christ in spite of the pain seems so contrary to human instinct.

But each morning as my very tired feet hit the floor and carry my ever growing seven year old disabled son from the bed to the living room I can’t help but hear that verse and feel it deep within my soul. We are called to deny ourselves. Other translations use the phrase “you must give up your own way”.

Taking care of Malachi is so so difficult. But it is also such a blessing. It forces me to deny myself every hour, every single day. This life is no longer about me, my luxury, my sleep. It is about serving the way Christ would, and relying on God to give you the strength to serve in that way.

The crosses that we bear, the painful things in our lives, challenge us to focus our eyes on Christ instead of focusing on the weight of the burden.

Are you gladly carrying your cross, or are you allowing it to grow into a root of bitterness in your soul?

I don’t think it is possible to take up your cross if you haven’t denied yourself first. I pray that my pride never gets in the way of me hoisting that cross onto my back and pursuing Christ…over and over and over again.

God bless,

Leah

Ashes

What a fun and full week we have had! The weather here in Tennessee went wild so we went from 70 degrees and flooding to several inches of snow. Our school system actually shut down due to the large amounts of absences due to sickness which meant Jake was home with us Wednesday through Friday.

We tackled all of our usual therapies and one trip to the hospital to meet with Malachi’s neurosurgeon. Thankfully these appointments are pretty boring as his shunt has been working beautifully from when it was placed seven years ago. During our recent ER visit they did a CT scan to check the shunt function and it was working well. These visits with neurosurgery are now annual which is a blessing.

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Levi has some serious anxiety with any and all doctors. It also doesn’t help that his specialists all share the same floor of the hospital so all of the rooms look alike. There is a fire truck in the main waiting area for the kids to play on, which sets my spidey senses tingling when I think about all of the germs on that thing. I have even contemplated bringing gloves and sanitizing it myself one day while we wait, but then I imagine I would get some pretty odd looks. Or some legit high fives from some of the other medical mamas.

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I have convinced Levi that it is super cool to wear medical gloves when he is at the hospital. He wears them for the majority of the time we are in there haha.

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This week we will head back to the hospital for a visit with Levi’s pulmonologist. We will spend the days leading up to the appointment playing with the stethoscope at home, trying our best to prep his little anxious soul.

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Malachi’s birthday was on Tuesday and unfortunately we had 6 appointments that day. But in between each one I did my very best to make it a special day for him. We went out for lunch with grandma, went to Target to pick out a toy with some birthday money, went to see the new Frozen movie with dad after work, ate chocolate cake, and opened up a few gifts at home. He was very aware and excited that it was his special day!

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He has been able to wear the same birthday shirt for 3 years now! We are getting our money’s worth.

 

Malachi absolutely loved going to the movie theater and clung to the storyline. Levi, on the other hand hated every minute of it so he and I spent most of the movie running in the hallway.

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Several months back I spotted a gift for Malachi that I knew he would love. It is a giant rubber chicken and when you squeeze him it screams for 45 seconds. Yes, you read that sentence correctly and yes we are crazy to buy such an obnoxious gift but he loves his big red chicken. He is even able to push it with his arm and get it to make noise all by himself!

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Actually, we all love the big red chicken. There is something goofy and silly about stepping on him and hearing him squawk that brings a smile to all of our faces. I took a video for you, but be forewarned that it is an awful noise:

We also got a small trampoline for the play room that can hold the weight of Malachi and one of us.

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His buddy at church gave him a new book about dinosaurs that makes noise.

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And he loves playing with his new pet snake that he picked out at Target with his birthday money. He is such a particular little boy with big opinions about what he wants.

Levi has been a live wire this week, overjoyed to have Jake at home with us. He still has a slightly runny nose and whenever he has any postnasal drip he vomits frequently. Last night was the first night he made it without vomiting. This is always a bit stressful for us as aspiration is a concern.

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He ate a non-toxic marker this week, so that was fun.

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And he hijacked our friend’s ice cream cone. He was very proud of his accomplishment on that one.

We are trying to get him to wear his feeding backpack so we don’t have to chase him around with the bag. He is not a fan.

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We have been working hard on manners, particularly saying please and thank you. I took a video of his progress for you to enjoy:

I have told you before about his tender heart toward other kids with special needs. There is another little girl at church who is a superhero like Malachi and Levi is smitten with her. He gets right up in her face to love on her and give her hugs and kisses. She isn’t always up for the invasion of personal space, but also seems a bit amused.

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Yesterday we woke up to snow! We took the boys out for a few minutes to let them check it out.

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As I watched the boys play in the snow I couldn’t help but take a deep breath and soak in the special life that God has placed us in. As the snow fell on the trees and covered them I felt like we were in our own little bubble, and it was such a safe and secure feeling. You never realize how valuable that security is until you go through a time of not having it.

Seven years ago Malachi was fighting hard for his life in the NICU. I don’t use those words flippantly.

Six years ago we were back in that same hospital in the PICU where we almost lost him again to influenza pneumonia.

Two years ago we were in the NICU in Cincinnati with Levi, caught in a cycle of hope, disappointment, and determination to keep trying.

Our lives with these boys have had so many moments of unpredictability and unknown. But as the snow fell on their smiling faces my heart felt such relief. That moment was a glimpse at the life I always dreamed about. It was a moment void of medical complexities, hospitals, and fear…just two boys and their dad playing in the snowy woods.

The truth is that we live a life of heartache. Yes, there are so many beautiful moments and so many positive things to focus on. But oh how there is so much heartache. The bad news hits us in the face while the good news is something we have to actively and desperately search for and create. It is not an easy world to navigate emotionally.

The Bible talks in Psalm about “A crown of beauty instead of ashes, oil of joy instead of mourning, a garment of praise instead of a spirit of despair.”

Seven years ago I was covered in the ashes as we watched Malachi fight for his life, helplessly sitting by his bed and praying that God would spare him. I don’t know that I can accurately describe the weight of the spirit of despair to you. I pray you never have to experience the heaviness of that load.

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This was the first photo I ever shared of our sweet Malachi with the world. I was gripped with a reasonable fear that he wouldn’t live and I wanted him to be remembered for his strength, so I refused to post a photo of my very sick warrior.

We have sat in the ashes many times in our clumsy walk through parenthood. We have had to find contentment dwelling in the spirit of despair as we fight hard battles with our boys.

But over the last seven years I have caught glimpses of the crown of beauty, I have felt the hopeful and refreshing drops from the oil of joy, and I have touched the fabric of the garment of praise. We have yet to truly seize and take hold of these things that the Bible talks about, but oh how we have seen just enough of them to find hope in the journey.

And maybe we aren’t meant to grasp those things until we get to heaven.

God has unraveled the strings of our dreams and used them to create a beautiful tapestry that tells a much more beautiful story. We can’t see the final product yet, we can only watch as the needle moves, some of the stitches more painful than others. But His vision for our family is being fulfilled.

I wrote a poem for Malachi several years ago for his birthday and it spoke to me this year as I read it, reminding me that Malachi was created to be used by God and to bring glory to His name. I know I have posted this for the last several years, but it paints a beautiful picture that my heart needs to focus on each February.

It was a breathtaking day in heaven as the father summoned the Son.
He wanted to tell him firsthand about something wonderful he had done.
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth.
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways.
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord.
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind.
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace.
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.

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May God continue to use Malachi to do mighty things! And praise the Lord that He stays close to the brokenhearted, binding up our wounds.

Much love,

Leah

MRI Results

Superbowl Sunday always brings about an array of emotions for me. We were actually hosting a Superbowl party the night that Malachi was born. Today as I prepped to have the teens over for a party I couldn’t help but flashback to that night and the emotions surrounding it.

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This week our miracle Malachi will turn 7. I will save my sappy post about him until next week, but I hope that over the past seven years that Malachi’s life has made an impact on your life in the same way has has impacted mine.

On Monday Malachi went to school and when I went to pick him up he seemed sad. The teacher told me that he was having an “off day” and wasn’t acting like himself. He didn’t have sick eyes, the first indication he is getting sick. And when we got to the car he perked right up.

At dinner I asked him if he had a good day at school and he signed “no”. I asked him if he had been happy or sad at school and he signed “sad”. I then asked him if someone had been mean to him and he signed “yes” and my momma radar went off! I asked if it was an adult or one of his teachers and he signed “no”. We continued the questions and answers until we narrowed it down to another student being mean and getting into trouble for it. He also signed that he did not want to go back to school the next day, which is very uncharacteristic of him.

I planned to talk with his teachers about the incident but later than evening I saw one of his teachers so I asked her if there had been an incident that day. She thought about it and said that yes, there had in fact been a scene caused by another student but it wasn’t directed at Malachi, but rather to the whole class.

Usually when kids get into trouble Malachi laughs, so I asked her if he had laughed and she said no. I think whatever happened in the classroom must have scared him pretty bad. But I was so incredibly proud of him that he was able to communicate so much to me and lead me to the problem! He didn’t get to go back to school for the rest of the week due to appointments but maybe our time away will have been a much needed reset button for him.

Malachi has been very vocal this week in his own ways. This was the result of me pausing the Lion King during one of the intense scenes to answer the phone at work. That’s some serious drama!!

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Speaking of appointments, Levi’s big neurology appointment happened on Wednesday morning. To re-cap, Levi was born at 34 weeks via c-section and was squeaking and struggling to breathe. He was placed in the NICU and went through a series of tests and procedures to find out the cause of the squeak, eventually leading us to his diagnosis of bilateral vocal cord paralysis.

When we were doing all of those procedures to find out the cause we discovered a few small spots of damage in his brain and it was thought he had at least one even of oxygen deprivation severe enough to cause brain damage. We were quoted that he would have a 25% chance of having cerebral palsy.

We tucked that issue out of our minds as much as possible while we tackled the breathing issues. Once those were under control we met with a neurologist to discuss the damage and he requested that we get another MRI to see how much has changed since the previous scan. We had the scan done just a few weeks ago and needed to meet with the neuro to discuss the results.

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We know the neuro well as he has been a big part of our seizure journey with Malachi. I knew that within two minutes he would unravel Levi’s results so I tried my best to not get too anxious and waited patiently through the opening questions.  He then pulled up an image of Levi’s brain and showed us that he now has 5 patchy areas of brain damage and his ventricles are slightly larger and misshapen due to scarring (areas of the brain that have died- they are the bright long lines on the outside edges of the black ventricles).

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To help give you more of a visual, here is a side by side comparison of Levi’s brain on the left and a unaffected brain on the right. In this comparison you can really see the difference in the shapes of those black ventricle areas.

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He said that based on the images of the damage, he is genuinely surprised to Levi functioning as well as he is. I guess that is a praise report hidden inside of a disappointing report! He said if he were to see this image and not know Levi he would be looking for a child that is much more physically affected.

Based on the MRI images and his clinical exam, Levi has been officially diagnosed with diplegic cerebral palsy. His CP is hypotonic meaning he is loose and floppy as opposed to his muscles pulling too tight (hypertonic). Big brother Malachi is a mixture of both hypo and hyper so we are familiar with both and truth be told we would much rather have Levi be hypotonic than too tight. Being too tight causes things to dislocate and lots of pain.

Levi’s main areas of his hypotonia are in his core, his legs, and his ankles. The only “treatment” is frequent therapies to help build up his weak muscles.

The neuro thinks that most of his brain damage is a result of his premature birth at 34 weeks as opposed to having several events where he didn’t get enough oxygen. Hearing that piece of the puzzle made me feel a bit better for some reason.

I left the appointment feeling glad to have some answers but sad they weren’t more encouraging results. He told me to continue to watch for seizure activity as it isn’t completely out of the realm of possibility for Levi.

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Trying out brother’s chair just for fun

Levi’s diagnosis doesn’t really change anything for us. He will start being monitored several times a year in the cerebral palsy clinic and continue in his therapies. He will still struggle with balance and strength, but for now it doesn’t seem to be slowing him down.

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To be completely honest, the temptation to wallow in grief has been on the forefront of my mind this week as I process our appointment. I keep thinking to myself, “Seriously ANOTHER CP diagnosis?!?!”

The devil has tried to take my mind towards the future for each son, which is a dangerous route to travel. Regardless of the longevity of life, each one of my boys will have more struggles to face, more physical pain, more doctors appointments. The inability to fix their brokenness sometimes sucks the breath right out of me.

When I start to mentally go to these dark places I have to open the Bible to refocus. One particular scripture kept coming up…”The Lord will fight for you; you need only to be still.”

To be raw and honest, I am tired of fighting. I am tired of trying to fix things on my own. I am exhausted by the pressure that I place on my shoulders regarding these boys.

Sometimes we forget that God is fighting our battles for us, and we only need to be still.

So as I sat in the car on the way home from the hospital that morning I tried to quiet my mind and be still in the presence of God. The battles aren’t mine to fight, they are His.

Later that evening I pulled up the scripture and read the context around it, something that is SO IMPORTANT to do when studying the Bible. Those words were spoken by Moses to the Israelites as they stared at the Red Sea in front of them and heard the chariots of the Egyptians barreling down behind them. They were panicking as they looked at their circumstances, feeling utterly hopeless.

When I read the story I noticed some things I hadn’t seen before…

God’s response to the Moses: “Why are you crying out to Me? Tell the sons of Israel to go forward.”

They were staring at a literal sea blocking their way. Panic had set in to their souls, and God’s simple response was “go forward”. And when they obeyed, it was THEN that God allowed the sea to part and for their feet to walk on dry land.

How many times do we find ourselves paralyzing ourselves in fear over a situation rather than stepping forward in faith?

As God continued to lay out His plan to Moses about the way he would part the Red Sea and lead the Israelites to safety, I noticed one more thing…

In Exodus 14:18 God says “Then the Egyptians will know that I am Lord.” As I read that this week I had this much needed reminder pop out at me.

Here God was performing a miracle that would lead His chosen people safely out of Egypt. But the miracles wasn’t for them. It wasn’t to re-affirm the Israelite’s faith in God, rather it was for the enemy looking in.

Sometimes God uses our situations, our trials, our circumstances to reach a group that might not be reached in any other way but by watching us turn to God in those moments.

Maybe the struggles my family continues to go through serve a much bigger purpose than only bringing the four of us closer to God. Sometimes we get caught up staring at the sea in our way. We forget that God sees a much broader picture and may be using that sea to allow an audience to catch up with us, so they too can watch the miracles unfold.

Please continue to pray for our family as we navigate this life. It requires a wisdom that we don’t possess, so pray with us that God continues to give us pieces of His infinite wisdom and peace.

Much love,

Leah

 

Normal

After such a great week in Florida is was difficult transitioning back into Carroll land. We tackled 8 medical appointments this week and have 8 more this coming week! Life quickly went back to its normal level of chaos mixed with fun.

The boys had some trouble adjusting their sleep schedules back to our normal so we had several camp-outs in the living room. Our giant bean bag has been serving as a portable bed for Levi and I when Malachi falls asleep in the living room.

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Malachi and Levi are growing closer each day. Levi has started to answer for Malachi when I ask him questions, trying hard to help big brother. He insists on pushing Malachi in his chair and helping him do things, like color.

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But my heart fluttered this week with one tender moment. Malachi was listening to a Mickey Mouse cartoon and at the end of the show all of the characters dance to a song. I always try to help Malachi dance with them by moving his arms like the characters do, but I was in the kitchen when the song came on. I turned around and saw Levi run from the playroom and grab Malachi’s hands to do the dance moves with him. Malachi lit up with one of his famous smiles, and Levi smiled back so endearingly, knowing that what he was doing made Malachi happy.

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Levi already has such a special, tender spirit about him. It is so fun to watch that continue to develop in him.

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Malachi will turn 7 years old in just over a week. As I looked at him this week I couldn’t help but see all the physical changes he has gone through in the last year. Yes, he is still very small for his age but he looks like such a big boy. And his legs have grown so long!

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He hasn’t been healthy enough to go to school since before Thanksgiving, but our schedule allowed him to go two days this week. He was super excited to get to go back and see his friends and teachers, and when I picked him up the smile was still there.

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Jake turned 35 on Saturday so we celebrated with a special meal and bowling. Both Malachi and Levi really got into it this time around and Levi liked helping Malachi push the ball down the ramp.

Levi is going through a Mr. Independent phase and we continually find him doing dangerous things, clueless that they are dangerous. He has figured out how to scoot chairs around to reach every drawer and climb up on the kitchen table.

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We also are working on the idea of potty training, although I am admittedly clueless on how to accomplish this task. We bought a small potty to get him comfortable with the idea and he really likes sitting on it (fully clothed haha). It makes a flushing sound like a real toilet, which is his favorite part.

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The boys both had weigh ins at their GI appointments, Levi is at 23 pounds and Malachi is at 31. Levi is getting a significant amount of calories every day but doesn’t keep the weight on with his breathing struggles. This was one of the big arguments they presented when trying to get us to trach him. It doesn’t help that he is a very active toddler now too!

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On Wednesday we will meet with the neurologist to get the results of Levi’s MRI from December. Appointments like these are a little tough to swallow as there isn’t really any “good” news. The BEST news we could get is that his spots of brain damage haven’t gotten any bigger since the last scan…but even in that we have to acknowledge and discuss the brain damage that has already occurred.

Last time we met with the neurologist he said he felt confident we would find the damage more extensive and talked about an official cerebral palsy label based on the results.

In true Leah fashion I am prepping my heart for the worst possible news we could receive but strangely enough I feel such a peace. Not necessarily a peace that the outcome will be favorable, but rather a peace knowing that whatever the results are it doesn’t really change the story God has written out for Levi.

The world has created an idea of typical, normal, standard. Parents and doctors cling to milestone charts and growth charts and look for fixes when the child isn’t measuring up to what “normal” looks like. I admittedly followed these charts anxiously with Malachi, praying and believing that he would be healed and totally “normal”.

But as Malachi’s story has been unveiling over the last 7 years I have started to realize that the worth I was placing on normalcy was stealing my trust in God. Each day that I would hear another diagnosis that led us further away from normal the more frustrated I got that God hadn’t intervened.

I was trying to make Malachi’s story look like everyone else’s instead of finding contentment in the one God wrote and designed especially for him.

Jeremiah 29 says “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord.

There is so much freedom in acknowledging and respecting the omniscience (all knowing nature) of God.

Malachi and Levi each have such unique testimonies, but I choose to believe that it is because God intends to use each of them in a uniquely beautiful way.

Ahh I am doing that thing where I doze off after every sentence so I guess that is my cue to head to bed. Some weeks you all get the scraps of my energy and thoughts; maybe next week I will be more rested.

Please continue to pray over our family. Pray specifically for Malachi to not experience physical pain with his dislocated hips. The larger he gets the more they click around and the surgery that would be required is a terrible one. And please keep praying that Levi’s vocal cords wake up!

Much love,

Leah

 

 

 

 

 

A Whale of a Time

I am so happy to share with you that we had a wonderful family vacation, free from any medical emergencies or catastrophes! It was such a fun week, especially for our sweet Malachi. He looked forward to each new day and smiled or laughed most of his awake hours. Be prepared for a picture overload!

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On Monday we tackled Disney. Jake and I are not die hard Disney fans, so entering the chaos of that world with our boys was a pretty intense thing. Disney people are crazy. But the park is very accommodating for children like Malachi and I was impressed at how they went out of there way to make it doable for our family.

They have something called a Disability Access Service (DAS) pass that allows you to check-in at a ride and get a return time so you don’t have to physically wait in line. We used the down times to tube feed the boys or re-apply sunscreen to my very fair skinned children. If the lines were short instead of giving us a return time they would let us right on. They also allowed all of our group to go with us, so Malachi got to ride with his cousins!

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Malachi loved the sensations and movement in each ride and the suspense of what would come next set him in giggles.

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Levi wasn’t so sure about all the chaos. Several of the rides terrified him, others bored him and he would turn around and stare awkwardly at the people behind us, probably trying to figure out why they were following our every move.

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By the end of the day we were all exhausted and ready for bed. I snapped this picture of a very tired Malachi, something we rarely see.

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On Tuesday we went bowling with the family, played at the resort’s splash pad, and then went to the Rainforest Cafe for dinner. The weather was in the mid 80s the whole week!

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Wednesday the rest of the group went back to Disney and the four of us headed to Sea World. The park was surprisingly empty and we got Malachi as close as possible to each show so he could visibly spot the animals. The staff at Sea World was very sweet to Malachi, making sure to send the trained animals over into his line of vision so he could get a glimpse. My favorite photo set from our day was this one; the trainer sent a dolphin over to say hi to Malachi and when he spotted the dolphin he broke out in the sweetest smile.

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Being so close to the animals meant that we sat in several “splash zones” at the shows. The first one Jake sat in with Malachi was the orca show, and boy did they get splashed!

Jake is in the red shirt with Malachi on his lap.

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I took a video and have watched it at least 100 times. We warned Malachi that he might get splashed by a whale but we never imagined this; Jake and Malachi are in the lower right corner in the red shirt and ball cap:

Malachi was wild-eyed after and couldn’t stop laughing. He LOVED getting soaked and still laughs anytime we bring it back up. I interviewed him after to get his take on the experience:

He also got a chance to throw fish to the sea lions, watch the penguins play, and get up close to a walrus.

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They had a section within Sea World that had some rides for toddlers and we were able to walk right on with the boys.

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At the end of the day we asked Malachi which park he liked better, and while he liked them both he signed to us that he liked the rides at Disney a little better than the shows at Sea World. But it was a very close second place, so we are grateful we had the variety for him.

Malachi’s new wake up time is 6:30, which is a big blessing! On Thursday he and I were up so we went with the rest of the group to another resort down the road for a character breakfast. Our resort was not affiliated with Disney but this other one offered a meet and greet a few days a week. Malachi first met Pluto but without them talking he wasn’t very impressed. But he did seem the be able to see Goofy a bit better than Pluto and was excited to see him. With his legal blindness he has never really “seen” the characters on the show, he just knows their voices. So having one of them come by really means very little to him without a voice to place with it. But he did think it was silly.

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We spent the rest of the day swimming in the pools with his cousins, and it was one of the highlights of his week. He loves the independence swimming gives him. We floated in a lazy Miami that moved him without us helping, which was a real treat for him and his big boy independent spirit.

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Levi grew more and more brave as the day wore on. I took a video for you all:

That night we had dinner at a T-rex restaurant, which terrified Levi and mesmerized Malachi. At one point during one of the “storms” that they simulate Malachi started yelling like he was scared. I leaned over to check on him and said “Malachi, are you okay?” and he broke into giggles. He was using his imagination, like a dinosaur was chasing him. It is those moments that I get to see his sweet and silly 6 year old spirit that bring me so much joy.

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On Friday we packed up and made the trip home. We stopped off in Atlanta to visit with my brother Andrew and his family and we made it home a little after 10:00.

Yesterday we attempted to unpack but only managed to put away about half of our gear. We had to make a big grocery trip to restock the fridge and buy supplies to make dinner for the youth group tonight. We are back in the swing of things for sure.

We are adjusting back to the world of long pants and winter coats. And child proofing the house again.

I can’t put into words how wonderful it felt to have a successful family getaway. Seeing Malachi’s pure joy and watching Levi interact with the world outside of ours was a beautiful thing. Jake and I both discussed how we need to make a conscious effort to attempt to travel with them more often and give them adventures, even when it is incredibly difficult to do so.

The next several weeks are packed full of appointments; this week we have seven! Our outdoor soccer team will start practices three afternoons of the week, our indoor season is kicking off with games two nights a week, and we still have youth pastor responsibilities and jobs. The week off came at just the right time!

Jake and I had some really great conversations as we traveled to and from Florida. We talked a lot about God and the things He has been working on within each of us. We hold a lot of responsibilities and we spent time evaluating whether or not each of them produces fruit.

Now, if you are new to Christianity or the Bible that last sentence may have confused you. The Bible often refers to fruit, like these verses that Jesus spoke in the book of John.

“I am the true vine, and my Father is the gardener. He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful…I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing.” John 15:1-2,5

Fruits are things that grow from your faith. They are evidence that seeds are being planted by you and watered by God. Sometimes we can think we are doing something that is in line with the will of God, but when we look and evaluate we see that no fruit has grown. We only see empty, dry branches. Those are the ones we are called to allow God to cut out of our lives.

I also want to note that part in the verse that talks about the pruning. Oh, how I have been pruned, working in the will of God at something but experiencing the painful pruning process that allows me to bear even more fruit.

So how do you tell the difference between being pruned by God and Him removing the fruitless branch altogether?

I think the devil likes to work in our doubts. I think he has been actively working in the doubts of both Jake and myself. Are the things we are depleting our energy to do having a kingdom impact? Or are they fruitless endeavors?

After hours in the car of re-evaluating the things we are spending our time and efforts doing we decided to hand it over to God and spend time in prayer and His word. Those are sacred things that the devil can’t infiltrate.

The point of all this is to remind you all of the pruning process, as I myself needed a refresher course. Bearing fruit is a beautiful process, but will also sometimes be a painful one.

But the key to all of this if found in verse 5: “If you remain in me, and I in you, you will bear much fruit. Apart from me you can do nothing.”

Are we spending time abiding in Christ? Are you remaining in Christ?

If the fruit isn’t there, it is quite possibly it is because you are not even connected to the tree in that area of your life.

A verse has been playing on my mind this weekend as I am actively seeking God on several big things. The verse is from Ephesians 2:10 and it says “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”

As I keep stating that verse over and over I lock into the final words “which God prepared in advance for us to do.”

God has already prepared things for our lives that He knows will produce fruit. We have to stop trying to create those things and simply live a life of surrender, allowing Him to guide us to the things He has prepared for us.

I feel like I just wrote a bunch of nonsensical thoughts. In my head they make sense but I apologize if I lost you haha!

Please be in prayer over our family as we try to settle back into the vine. And pray that God helps prepare our hearts for some big appointments in the next two weeks with potentially hard to swallow outcomes.

Much love,

Leah

 

 

Orlando Week

We are officially in sunny Orlando, FL! We are looking forward to a week away from the hustle and bustle of our lives and spending time with family. We are here with Jake’s parents as well as his siblings and their families- 18 of us total.

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We made half of the drive on Saturday afternoon and the boys were so keyed up by the time we made it to the hotel that they stayed up until 2:30am. Malachi has been wildly excited to go on this “adventure” as we call it, and especially excited about seeing his cousins. We finished the drive this afternoon and we are all settled into a very nice condo that some very kind friends gifted to us for the week. Tomorrow we are going to attempt to go to Disney…I am sure I will have some fun stories about our adventures to share with you!

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Prepping for the trip was the stressful part as I had to try to gather all of the prescriptions we needed to get through the week. Little known fact: the first part of each new year the companies we order things through have to re-verify insurance which takes 3-5 days. Then the actual shipment takes another 3 business days to make it to us. And I can’t request the refill until about a week before we run out of the last batch. Boy, were we cutting it close to get all of the supplies here in time…Malachi’s diapers, formula and feeding supplies for both boys, seizure medications, CBD oil.

We found out Friday at 3:00 that we weren’t going to be able to get one of Malachi’s tummy meds here in time (apparently there is a national shortage) so we had to find a pharmacy with something that is close to his prescription. This is a recipe for disaster as his seizures are linked to his stomach. Just in case we brought extra emergency/rescue meds. I am praying we won’t have to use them.

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Malachi is healthy again but very weak from last week’s struggles. We attempted therapies this week and while he tried very hard he still grew exhausted quickly.

Levi also went to his therapies and managed to get a black eye during his physical therapy session. His balance and coordination is still pretty bad and he took a hard spill into the corner of the wooden balance beam. Ouch!

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While we were watching big brother Malachi at horse therapy I asked Levi if he wanted to get on the horse too. He typically replies with an adamant no, but on this day he said yes! After Malachi was done we plopped him up on there, which lasted about 6 seconds, but still a big step for our hesitant Levi.

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If you are a new reader, one of the many hats we wear in our small town is soccer coaches. Jake and I have coached the high school girls for the past 8 years and a 4 years ago we started a boys soccer team at the high school. I have come to terms with not being able to be out there as much with the kids, but this week the weather was pleasant so the boys and I were able to be out there for a bit. I took Malachi’s wild raptor so he could have fun riding while mommy and daddy were focused on the teens.

The boys also go to work with me at the church office on Mondays, Wednesdays, and Fridays and it is getting increasingly difficult to keep Levi from getting into trouble there. If I turn my eyes for a second he is on the phone, typing on the computer, or trying to grab and run with the papers the copier is spitting out. It is physically and mentally exhausting trying to keep up with him and get work done. But he is super cute pretending to talk on the phone.

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Levi has a very big imagination and it is highly entertaining to all of us to see what he will come up with next. Last night he found a pen and paper in the hotel room and walked around “writing things down”. I took a video for you:

As we inched closer and closer to leaving for our trip I caught myself several times allowing worry to take over. The what-ifs swirled in my mind when I closed my eyes at night. I mapped out the fastest route to the local children’s hospital, printed out up to date medical summaries on each boy, and tried to think through and prepare for every possible scenario.

Then I started worrying that we were using Jake’s vacation days for something frivolous and something big and pressing would come up later in the year…like a surgery or a long hospital stay.  Those days that he builds up are precious to a family like ours. I remember having to sit alone for Malachi’s second big brain surgery because Jake had to be at work and I never want to experience that feeling again.

Then I started worrying what people will think…I know this sounds silly but stick with me. When Malachi was born several of Jake’s coworkers donated their sick days so he could be close to the hospital after his sick leave was done. People have monetarily helped our family in many ways. What would people think about us taking such an elaborate and long vacation?

I don’t believe in “me” time. I think that concept is something that the world created to make us feel better about our selfish tendencies. I believe so strongly that when God calls us to something hard that He will provide the energy and strength we need…we don’t have to proclaim “me time” so you can refresh. Refreshing comes from the Lord.

But I do see the benefit of making conscious efforts to give Malachi and Levi this family time. Mommy and daddy intentionally stretch themselves as thin as possible each week in an effort to “in humility value others above yourselves” as the Bible says in Philippians 2. This week we will be able to divert all of that energy into putting our children first and giving them our full focus.

So as the week and the worry went on I had to keep catching myself and remembering that worry is not of God. It is actually the opposite of resting in Him. When we allow our mind to stay focused on the potential bad things we lose sight of the good things God has in store for us. Even when the blessings come our way we tend to miss them because we are distracted by the worry.

So for the remainder of his week I am going to be trying extra hard to not let worry steal my joy, or worse steal the joyful moments from my children. Inevitably I will fail over and over and over again, but maybe those moments of weakness are the reminder that I need to stay closely leaning on the Lord.

I know this is a short and choppy entry- I am thoroughly exhausted from staying up with these boys. Please pray against all emergencies and sickness. And a week of no regrets for mom and dad as we navigate through a new adventure.

Much love,

Leah