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.

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.

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.

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

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!

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.

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.

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.

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!

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

 

 

 

 

 

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!

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!

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

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.

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.

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!

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.

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.

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.

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

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.

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.

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.

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

 

 

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.

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!

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.

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!

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.

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.

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

 

 

 

 

This week has been a roller coaster of health for our sweet Malachi. I don’t want to drown you in details, so I will do my best to summarize what has been going on.

Last weekend Malachi started running very high temperatures and medicine wasn’t helping bring them down much. We assumed he had the flu and it needed to run its course, but after several days of the high fever and no new symptoms we started to contemplate taking him in. We have to be cautious with hospital visits as we don’t want to expose him to something worse than what he already is dealing with.

Tuesday morning when we woke up we noticed that Malachi’s feet and arms were an ashy purple/gray. It was alarming enough that I immediately started packing a bag for a multi day stay in the hospital and headed straight to the ER with him.

They took him straight back to a room and started running a barrage of tests. Their initial assumption was that his VP shunt was malfunctioning- the shunt helps his spinal fluid flow out of the brain ventricles so if this ever malfunctions we have to go straight into emergency brain surgery. Malachi had a CT scan and some x-rays done which all showed that his shunt was working perfectly.

We ran a respiratory panel which came back negative for all of the biggies like the flu, but positive for something called coronavirus. Since this was a viral thing there isn’t a treatment; you just let it run its course.

We also catheterized him to get a urine sample straight from the bladder and it showed white blood cells and protein meaning he had a urinary tract infection. Malachi then had an ultrasound done on his kidneys to make sure he didn’t have a bigger issue that we were missing, which he did not.

After a very long day in the ER we headed home with an antibiotic and our fingers crossed that it would do the trick. At this point Malachi hadn’t eaten since Saturday but was well hydrated with pedialyte through his g-tube. He was cranky, exhausted, and still feeling crummy. He is a hard stick and required six pokes just to get a blood draw, not to mention all the uncomfortable tests and imaging.

But as the days ticked on Malachi seemed to be getting worse instead of better and his feet continued to turn purple whenever he was seated at 90 degrees. On Thursday I took him to see his pediatrician and repeat his blood work. I also asked that they do another respiratory panel as I was worried he may have picked up something new in the emergency room. His blood work showed that his white blood cell count was in a safe range, meaning the antibiotic was knocking out the infection. They suspected that it had made its way to Malachi’s kidneys which is why he was still so sick.

But Thursday night his fever was still at 103.4. Friday they called me back and mentioned that his respiratory panel showed that he had a new bacteria growing in his lungs which they assume was the cause of his high fevers still.

So in summary: urinary tract/kidney infection that is treatable by antibiotics, coronavirus which has to run its course, and bacteria in the lungs which is treatable by antibiotics. The whole week has blurred into what feels like one long day full of vomiting, temperature taking, medicine giving (Malachi is getting 15 doses of things a day right now), unpleasant side effects of said antibiotics, and sleepless nights.

We did manage to get a few sweet smiles throughout the week, but you can tell how weak he is.

We obviously canceled all therapies and appointments and have been staying in and watching Malachi like a hawk. Most of the week Malachi was unresponsive and cranky to anything going on around him. As soon as Levi would enter the room Malachi would sign no, and didn’t want him anywhere near him. This was the sickest he has been in quite a long time.

Whenever we have to go to the hospital I often have to laugh to keep from crying. Thankfully we have made lots of friends over the years so when we walk in we are greeted by friendly faces who already know our Malachi. If I wanted to focus on the fact that we are on a first name basis with many of the hospital employees, that could very quickly bring me down. But instead I choose to focus on the kindness and familiarity of the place; it reminds me of how big Malachi’s sphere of influence has grown.

Levi has been super sweet to Malachi and can tell that he isn’t feeling good. He keeps going over to him and talking quietly to him while kissing him on the head. I tried to film a small bit for you:

When Malachi was in the NICU I frequently read him the book On the Night You Were Born. One of the lines says: “Because there had never been anyone like you… ever in the world. So enchanted with you were the wind and the rain, that they whispered the sound of your wonderful name. It sailed through the farmland high on the breeze…Over the ocean…And through the trees…Until everyone heard it and everyone knew of the one and only ever you.”

I have watched this line come to life over the last 6 (almost 7) years and it never ceases to amaze me how far Malachi’s story has traveled. Yes, locally Malachi is known very well but his name is continuing to float on the breeze and find its way to other far off places. In 2019 this blog was read by 195,000 people in over 140 different countries. Ummmm what?!? Literally hundreds of people in Australia, Germany Ireland, France, Denmark, South Africa, Italy, Israel, Egypt, Japan…they have come here to read about our special little boy. I can’t even begin to fathom how that happens, but it blows me away.

My prayer for 2020 is that God continues to use Malachi to bring people closer to Him. What a big and important job He has given to our warrior.

This week was a very hard week for Malachi, and several times I caught myself wondering if this would be the sickness that took him away from us. Each night I would pray fervently with Malachi that he would wake up completely healed, and each morning he seemed to wake up sicker than the night before. He wanted to be held, but holding him caused his feet to change colors so we would lay in the bed with our heads touching and hold hands while we talked about the future.

I had to keep reminding myself about Daniel in the lion’s den. When we are put in dangerous situations we always have to remember that the will of God for our lives is much more powerful than the danger around us. If God wants to shut the mouths of the lions, He is certainly powerful enough to do so. We can relax and rest comfortably in the arms of God knowing that He authored the ending.

I wrote this around 3am one night; God had been pressing it on my heart to share it with you all but my mind was so foggy I didn’t have the clarity to write it out until one particular night. Malachi was steadily growing worse and had finally fallen asleep as I typed these hard words:

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Even though I walk through the valley of the shadow of death I will fear no evil.

This has been a shadow of death week. I know that sounds dramatic, but in our medically complex world it doesn’t take long for mild to become life threatening. Our special children don’t follow flow charts, textbooks, or “usually…” Each time we loaded up to go see the doctors again I caught myself wondering if this would be the last car ride, the last photo, the last time he would see Levi.

Malachi and I are so connected, and if I allow myself to fear as we walk through the valley of the shadow of death so will he. So instead we spend our hardest nights talking about heaven. Truthfully, it is one of his favorite things to talk about.

This week we had lots and lots of heaven talks. We talk about who will run faster in heaven, daddy or Malachi. We talk about how Malachi will have to teach Levi how to climb the trees there. We talk about the walks and talks he and I will have there and how I can’t wait to hear his version of his life here on earth. We talk about him wrestling his buddy Johnny, who made it there before Malachi. We talk about how beautiful the angels will sing and how exciting it will be to praise God forever with them. We practice the songs together that the Bible tells us the angels sing in Revelation.

I tell him about the beauty of heaven and how lucky he will be on the day that God tells him it is time to be with Him there.

I don’t want him to ever fear the shadow of death….so I too am learning to reach for the rod and staff for comfort as we walk through that valley together.

This week that valley led to a clearing. But one day that path will take a different turn. I don’t know if I can ever truly prepare my heart for that day, but I know I can prepare Malachi’s heart.

I can teach him that God’s timing is perfect. I can teach him that God loves him and he is one of God’s most treasured creations. I can teach him that God has ordered his steps already and has chosen the day He will call him heavenward. I can teach him about how God placed him on this earth for a reason. I teach him, and oh how he listens with such excitement- eager for the day he gets to see God the Father face to face.

May we all embrace our valley of the shadow of death as gracefully as Malachi…choosing to see the beauty that awaits instead of focusing on the evil along the way.

______________________________________________________________________________________

Tonight is Malachi’s first fever free night in 9 days. Yesterday was the first day in nearly a week that he had tolerated any food in his belly, so he has clearly lost a significant amount of weight. We are going to be spending the next week trying to re-strengthen and get as close to his baseline as possible.

I hesitate to even mention it, because I don’t want to have to deal with disappointment if it doesn’t work out, but we are planning to leave on Saturday to go on a week long family vacation to Orlando with Jake’s siblings and parents. This is HUGE for us, as we don’t do things like this ever. We have always hoarded Jake’s sick days for surprise hospital stays, so we are really stepping our of our comfort zone on this one, trusting that we won’t need these days later on in the year. Traveling with the boys is also incredibly stressful, but traveling with sick boys that may need a hospital at some point while we are gone is a whole new level of stress. Please pray with us that we are able to get strong enough to go on our trip as planned.

And just for giggles, here is a silly video of Levi to end on:

Much love,

Leah