Promises

Happy Easter everyone!

And I am happy to report that Levi tolerated the bow tie! And with his curly hair it gave him a very sophisticated Albert Einstein look.

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In years past we have blazed through Easter without a second thought to the gimicky side of things, but on Thursday Malachi came home from school with a bag full of Easter eggs (dinosaur ones at that!) and he was so excited to open the eggs and find candy inside. He was so intentional with his movements to break each one open and was giddy with anticipation about what might be inside. I took a butter knife and shaved all of the candy into melt-able slices for him to snack on. I asked him if he wanted to share some chocolate with his brother and he was very quick to tell me no. He did sign that I could have some though, so we are making progress on our sharing.

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Seeing his joy over the eggs reminded me that I need to do a better job at creating memories and experiences for Malachi. It is easy to assume that he won’t get into holidays if I don’t build them up but somehow he seems to know a whole lot about them. The only thing I can think of is that he gets the concepts from his cartoons.

 

So off to the store I went to build an Easter basket for each of the boys. They each got a book, bubbles, candy, and a special toy. Malachi couldn’t contain his excitement so I caught a quick video to share with you:

You all know our history with family photos- it rarely goes well. Today was no exception, but the laughter I experienced looking at each of these photos made it worth it. We even caught a few with Malachi’s “Hulk” tummy tube cover showing.

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Tonight our church hosted a community outreach event and set up different egg hunts for different ages and abilities. Malachi and his other wheelchair buddies had an egg hunt with balloons taped to the eggs so he would be able to snag them easily from his chair. With Jake’s help he ended up with a handful of balloons and eggs.

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He has been ecstatic about those silly balloons!

Levi also got in on the action getting a handful of eggs. I was busy getting the other hunts started so Levi’s best buddy from church offered to help.

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As you can see, Levi is still doing great off of oxygen during the daytime. The oxygen concentrator that we have in our home is big, noisy, and spits out a lot of heat. Since it isn’t being used in the daytime I now flip it off during the day. One night this week I completely forgot to turn it back on and headed to bed. Levi was asleep and stayed at really high levels so I didn’t even realize the oxygen wasn’t on until he had a quick dip down to 92 (anything above 88 is still considered acceptable). We are seeing some huge improvements!

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I am absolutely determined to get this kid wire free. This week I have been trying to come up with a plan to keep him from being hooked to his feed bag 18 hours a day. Step 1 has been increasing how much volume he gets pumped in him in an hour. I don’t want him to be miserable with something his tummy isn’t used to so this has been a slow process.

I have also been trying a few bolus feeds here and there. With a bolus feed you simply hook up a syringe and pour in some milk. Instead of a machine slowly sending it in over a few hours, gravity takes it into his tummy over the course of about a minute.

This carries risks for Levi; if I send in too much at once and he vomits there is a chance he can’t protect his airway (since his vocal cords don’t move) and it would go into his lungs. I have only been doing one hour worth of food (2 ounces of milk) at a time and ONLY when he has a completely empty tummy. So far he has tolerated it very well! We will keep fiddling this week and trying to make some progress.

Malachi has been having some gut issues and we aren’t quite sure what it may be. It has been going on for several weeks but with no other symptoms I have been hesitant to take him into the pediatrician’s office. I spoke with his GI doc this week and he had me bring some samples by for testing. I am hoping we get an easy answer.

And as if our week wasn’t crazy enough, the bears are apparently out of hibernation and stopped by for a visit on Tuesday night. They usually come by the house between 12am-4am but this one came by shortly after Jake got home from soccer one night around 10pm. I had cooked salmon for dinner and he must have caught a sniff of it in the wind. So back into high alert mode for the Carroll clan! We have some security cameras set up outside now so hopefully I will be able to get better pictures than last year.

Malachi and Levi have been two mischievous brothers this week and are learning how to tag team to accomplish things.

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When we decided to go the gimicky route for Easter, I talked a lot with Malachi about the holiday and what it meant. I told him that lots of kids like to use their imaginations and pretend, just like he does when he pretends to be a superhero. And they pretend that their is a big, giant bunny that brings an Easter basket to their door and that’s a big reason of why they get excited about Easter.

I explained to Malachi that we know that the bunny is pretend, and instead we choose to celebrate how much Jesus loves us! I think he is a bit too young to understand the details and the “why” of Christ’s death so we just focused on the great love that Jesus has for Malachi.

Malachi is so eager to learn these days, so as I talked to him about all of this he listened very intently. I always wonder what questions swirl around in his beautiful little mind. I can’t wait to have conversations with him one day and hear his thoughts on things instead of guessing at them.

This morning as I processed the significance that this day brings, I found myself thinking about the day from the perspective of one of his disciples.

Christ hinted several times to them about how he was going to die and rise from the dead three days later. I want to give the disciples some credit here and tell you that Christ used words that confused them, but that is just not true. In fact, the words He spoke were very plain and simple:

“Now Jesus was going up to Jerusalem. On the way, he took the Twelve aside and said to them, 18 “We are going up to Jerusalem, and the Son of Man will be delivered over to the chief priests and the teachers of the law. They will condemn him to death 19 and will hand him over to the Gentiles to be mocked and flogged and crucified. On the third day he will be raised to life!” (Matthew 20:17-19)

These word must have fallen on deaf ears, because Christ’s death on the cross wrecked these men. Their hearts were mourning over the loss of their friend, their teacher, their Lord. They were so confused…wasn’t this man supposed to be THE ONE that changed everything?

As I read this scripture today and processed their emotions I realized how relatable the situation was to me in my spiritual life. How many times has God spoken to me with a promise, then something happens that didn’t lead to that outcome and I begin to question and doubt. I even begin to panic, much like the disciples did, instead of trusting that He would make good on that promise.

But here’s the thing….God always keeps His promises. Every single time. Without exception.

When Malachi was a few weeks old and fighting for his life in the NICU I remember vividly laying in the bed at the Ronald McDonald House and praying that God would restore Malachi’s brain and make it whole. God spoke so clearly that night and said “It has already been taken care of.”

The next day I strutted into the NICU with my head up high, knowing that they were about to witness the miracle that God had shared with me the night before. Malachi had a brain scan and the doctor came in to deliver the results. I was so confident and so sure. But the doctor explained that the brain damage was much worse than the previous scan and more of Malachi’s brain had died off.

When I look back, I see that as my “disciple moment”. That moment rocked me. This wasn’t what he was supposed to say. This wasn’t how it was supposed to go.

There are two ways you can look at situations like these:

#1 Get frustrated that God didn’t keep His promises

   or

#2 Recognize that the promise is still on it’s way

Part of faith is always believing in the promises. It is hearing about what is to come and believing with all of your heart- and not just believing it but waiting and watching for it.

Faith is expecting…even when the promise seems impossible. My faith tells me that Malachi’s healing has already been taken care of, but exists on a timeline that is hidden from my view.

Maybe this whole concept feels very unrelatable to you. Maybe you haven’t had a Ronald McDonald House Moment and heard God speak. And that is absolutely okay. For me, it is a rare occurrence and one that still absolutely fascinates me.

But God speaks through scripture! Have you read His words and looked for the promises in them? We can’t expect God to speak to us if we aren’t seeking.

My challenge for myself this week is to seek more of God and listen to the things He is pushing my heart and mind toward. To listen to his promises and strengthen my faith enough to fully believe that He will see it to completion.

And boy, am I thankful that He kept His promise to the disciples on that third day. What a glorious day that must have been.

God bless you this Easter,

Leah

 

 

 

 

Humpty Dumpty

One of the things I try hard to focus on each week in my blog entries is being authentic. I could paint you a pretty picture with carefully chosen words about the beauty that blankets our days. While there are breathtakingly beautiful moments every single day, there are also those moments that twist my heart in painful ways. While I can’t eliminate all the ugly we do try desperately to make sure the good outweighs the bad.

This week we had to put a lot of effort towards that balancing act.

Let’s start with some moments of beauty. Malachi got the chance to paint a horse at his therapy session this week. Once you know Malachi you learn how to read his looks. You can tell in these how focused he was. He is very much into writing his letters these days, so writing them on a horse was an even bigger deal!

Levi has been pulling himself up to standing all week! He also has lots and lots of looks to offer…as you can see, he has the look of determination down pat.

Levi also got to go on some boat rides around the house this week; here is a video of his adventures:

Malachi was all smiles at one of our soccer games this week. I love that he smiles with his whole face.

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Levi was upgraded to a big boy car seat! Before I get any concerned emails about chest clip placement please know that we were in the kitchen when this photo was taken, simply working on strap height adjustments before we put it into the car. We are safety conscious, so don’t fret!

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The boys looked particularly fancy this morning for church. I have matching bow ties for their Easter outfits next week but I suspect Levi won’t be a fan.

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Oh Levi, always watching. Always.

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Switching gears to the rough patches…

I met with Levi’s eye doctor this week to talk about treatment options for his eyes. Levi was born with a congenital airway birth defect called bilateral vocal cord paralysis. At some point in the first few weeks in the NICU he went without sufficient oxygen and part of his brain started to die off. The spots of damage are very small (based on the scan at 3 weeks old) but we aren’t entirely sure how these spots of damage will affect him long term.

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We have discovered though that his brain damage is affecting his eyesight. He has two different eye issues, the main concerning one being that his eyes do not work together to see things. This is simply a brain wiring issue, and there is no way for us to ever correct that issue. However there are some things we can do to try to help get both eyes focusing on the same thing; the goal of this being that his brain recognizes the benefit to seeing one thing with both eyes and re-wires itself.

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Levi will undergo eye muscle surgery on May 3rd. At this point we are only going to operate on the right eye slightly but recognize that we may have to in for several more of these surgeries before we get it “just right”. This is also one of those issues that can reoccur at any time, any age. If we do not correct it he will not be able to develop depth perception.

Both eyes are also a little “lazy” so we are supposed to be patching each for 30 minutes a day until they get stronger. The worry is that one eye will overpower the other and vision loss in the weak one will occur.

We take lots of pictures of Levi and at least 70% of them get deleted because his eyes are a little wonky. Here is an example; nothing too crazy, but slight enough to recognize. In this photo it is the left eye turning in but most times it is the right.

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We finished up the eye appointment with a whole three hours to kill before our next two appointments. There is a big mall nearby and I thought the boys would like all the busyness that malls can bring. We walked around the mall a few times, ate at the food court, then headed back out to the car to leave for our appointment.

I was literally thinking “Wow, I just rocked that mall trip!” And as I lifted Levi from his stroller to put him in the car seat I heard a loud pop. I looked at his face and it contorted into a grimace of pain. I sat him back down immediately, worrying that his stomach tube had popped out but not wanting to actually look as the whole idea freaks me out.

I reached my hand onto his tummy and swiped it to find it not only flat, but pouring out milk. The tube was no longer there. My heart started to beat fast as I looked for it, and both Levi and I spotted it at the same time. He reached to grab it and put it in his mouth, which made me start dry heaving. I snatched it away before he succeeded, making him cry even harder. The harder he cried the more the milk inside his stomach continued to squirt out.

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At this point I was mentally trying to grasp what to do next. I have been trained on changing their tubes, but interestingly (not the right word) enough I had just taken their emergency tube kits out of the van and put them in the house two days before. I looked for a syringe to deflate the balloon and try to re-insert it but couldn’t find anything.

The tube has to be reinserted within 1-2 hours or it can only be done surgically. I was 45 minutes from home/spare tubes and only 30 minutes from the hospital so off to the hospital we went.

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Levi munched on his toes while we waited, likely starving since all of his tummy contents had emptied. We finally got it reinserted within the time frame and all is well. I have learned my lesson and put their spare tube kits back into the van!

On Thursday Malachi had some adjustments done to his wheelchair. We want to preserve Malachi’s body from long term positioning issues, but in order to do that we have to use horrible looking devices. We recently got a special positioning collar that holds his head up. It definitely does its job, but I find myself having a hard time actually putting it on him as I don’t want him to be miserable. There is just no way that can be comfortable.

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Levi also met with pulmonology on Thursday…lots of trips to the hospital this week! Levi’s sleep study results were excellent with zero spells at a half liter at night! His carbon dioxide retention levels were still in a completely normal range.

So switching back to a good…

Levi has been cleared to trial off daytime oxygen! We are on day three and so far he has done wonderfully. We are keeping him connected to his pulse oximeter to monitor his levels. When he is awake his oxygen saturation stays at 100 and when he is napping it is between 96-98. When he goes into a deep nighttime sleep we put his oxygen back on, as he isn’t ready for that yet.

It feels SO GOOD to have one less wire to worry about. He looks so much different!

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Since Levi will be going under anyway on May 3 for eye surgery we are going to try to coordinate his throat scope for that same hour. It is always nice to be able to combine surgeries and have less anesthesia rounds.

Malachi has started playing a new game of waiting until we have a full syringe hooked to his tummy tube and flinging his fist to punch it out of my hand. It then flies all over him, which he just giggles at. It has been a messy week. Little stinker.

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I know I mention this often in my blog, but one of the biggest things I struggle with is disappointment. I have this picture in my mind of how things will go and inevitably they never go that smoothly. The disappointment in those moments makes me so angry…like throw things across the living room mad.

This week I had a whole lot of disappointing moments to work through. By the time Friday rolled around I was on the verge of an emotional meltdown. I kept feeling it coming on and tried to regain control only to have the waves hit me hard again.

Dealing with disappointment is the most damaging thing in my relationship with my kids, relationship with Jake, and relationship with God. It brings out a side of me I do not like.

Today is Palm Sunday, the day that the town of Jerusalem welcomed Jesus as he rode into town on a donkey. They waved palm branches to honor him, laid their coats down on the road for before him, and exuberantly shouted:

“Blessed is the king who comes in the name of the Lord!

Peace in heaven and glory in the highest!”

Luke 19:38

 

The people were all so excited that the prophecies they had heard about all of these years were finally going to be fulfilled! Here was the king they had been looking for…they one they were promised long ago.

And just days later they would demand that he be crucified, nailed to a cross. And you know what likely played a part in that sudden change of heart?

Disappointment.

This morning there was a minor emergency with the new children’s director and she had to leave the service quickly. On her way out the door she explained that she was leaving and asked if I could cover children’s church for her. I had three minutes to figure out what I wanted to teach these kids, and this concept of disappointment has been laying so heavily on my heart.

I talked to them about the significance of Palm Sunday and as we talked through Good Friday one of the kids interrupted and asking “Ms. Leah, why did the people love Jesus then hate Jesus so much?”

I explained it like this…

What if I told you Humpty Dumpty was going to come into the room for a visit. He was going to come in and sit on a wall, and likely fall, and all the kings horses and all the kings men wouldn’t be able to put him together again. That’s the story we all know, right? We have heard it over and over again as children.

What if that door opens and in walks Humpty Dumpty- the snowman.

The kids all said “No, no, but he is an egg!!”

But is he an egg? There is nothing about the story that tells us what he looks like, or what he is made out of. It is something that has been passed down in illustrations that people have put in storybooks. It is something that our parents told us, or an image that we created in our minds.

Maybe Humpty Dumpty was actually just a snowman.

I explained to the kids that the people in Jerusalem had heard this story for years and years about the king that would ride town. They were looking for a king who would swoop in and establish his kingdom. A man that rode in on a strong white horse, adorned with jewels. They likely pictured someone authoritative, not like the meek and humble man that rode in on the back of a young donkey. They pictured a king who would rule with an iron fist, not a man who taught to pray for those who persecute you.

The man they saw in front of them no longer fit the picture they had created in their minds. And just like I do when I am disappointed, they got more and more angry.

I don’t think that it is sinful to create ideals in our minds. It isn’t a sin to long for things to turn out a certain way, or to even pray for specific results for a request. To the contrary, I think it brings God joy to hear us share glimpses of our hearts with him.

But when our ideals don’t match God’s then the slope can turn slippery. It is in those moments that we are reminded that God is guiding us in a very calculated and specific way, even though the scenery doesn’t match what we had pictured in our minds.

I will continue to struggle with disappointment. It is a big part of my life, and each and every day my boys aren’t healed by God I feel a flash of that pain. But my responses are something I do need to have better control over, and that is something I will be in prayer over this week.

The Lord is near to the brokenhearted and saves the crushed in spirit. -Psalm 34:18

Crushed in spirit is such an accurate way to describe our week. But as this verse says, God is right next to my broken heart, still holding my hand and leading me to green pastures.

My prayer this week is literally Psalm 23:

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name’s sake.
Even though I walk
through the darkest valley,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever.

I pray that this week He makes me lie down in the green pastures and rest in His goodness and HIS control over my life, even when I am crushed in spirit. I pray that He refreshes my soul and allows me to watch in awe as He overflows my cup.

I pray that you too have a Psalm 23 week. And if you are crushed in spirit that you will find the hidden blessing that it brings as it causes us to draw nearer to God.

Much love,

Leah

 

 

 

 

And If Not

In true Carroll family fashion we jam packed our schedule this week with medical appointments and fun!

As I have admitted several times before, I am a recovering control freak. Against my will, I have really had to let go of those urges to control every detail of life and learn to go with the flow. The special needs momma life doesn’t allow me to share emotions with anything other than my kids. But I still get a thrill from establishing routines and successfully implementing them!

Mondays have become a routine acceptable day with work in the morning, physical therapy sessions for each boy around lunchtime followed by a trip to the grocery store. But the highlight of my Monday is having a “lunch break”. Special needs mommas (well, mommas in general) don’t get the luxury of established mealtimes. I usually get to town for therapies with 8 minutes to spare and if the line is short enough I run through the Chick-Fil-A drive through. And then I sit for a glorious three minutes and eat chicken in the parking lot at therapy. It is a little odd that parking lot chicken brings me so much joy. It actually has nothing to do with the chicken and more to do with the success of being able to eat at a normal and acceptable time.

Tuesday we met up with Malachi’s High School Robotics team to watch them demo the competition robot they built. Malachi loved listening to the robot as it sounds very much like his Wild Raptor ride that the team adapted for him.

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Speaking of the Wild Raptor, the weather finally cleared up enough for us to start taking it outside! Malachi loved the independence it gave him to go way ahead of momma on our walk.

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Then tonight we took it to a friends house so he could show off his moves.

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While Malachi is not currently sick, he is still recovering from last weekend’s junk. When he gets something like a common cold it can mess with him for several weeks before he gets completely back to normal, which is why we are extra cautious about germs. Nighttime is hard for him as laying down makes it hard for him to breathe. I have been propping him up in the bed next to me but he is still waking up 8-10 times per night panicky because he can’t catch his breath. He signs to me that he is sad/scared and I hold him until he calms back down. It has been a long and sleepless week for Malachi. His seizures are also very intense each morning as he works to process the congestion that settled in overnight.

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At feeding therapy this week he signed NO to everything that we offered him. He even declined chocolate, which is very unlike him. The only thing he signed YES to was blue juice- he loves to drink it because it turns his tongue blue which he finds hilarious!

We are still working on weaning one his seizure medications and one of the improvements we have seen is his eyesight. Malachi has Corticol Visual Impairment meaning his brain is what is causing him to be blind- not a structure issue. The more we reduce his seizure meds the more that fog lifts from him. After his horse therapy session on Wednesday I got on the highway and Malachi jumped in his car seat when we passed a semi. He usually can’t see those in his peripheral so that is huge!

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Levi is still wanting to be attached to me 24/7 which is making therapy sessions difficult. He doesn’t want to work with any other adult, especially if it means he can’t be in my arms.

 

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We had a small victory tonight when he contentedly sat with a friend from church! Baby steps.

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Levi had a developmental evaluation done on Friday to see where he is at with his milestones. We don’t have the results quite yet but even this week we are seeing some new things. He is starting to pull up on things and stand for brief periods of time. I took this video to share our success with you:

We also resumed our feeding backpack training sessions this week with a cool new Spiderman feeding backpack. I just put the feeding pump and bag inside and it toppled him like a turtle each time he tried to move with it on. We will keep trying though!

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This week Levi has some big appointments with the eye doctor to talk about eye surgery and the pulmonologist to get sleep study results and schedule throat scope in Cincinnati. Malachi will also have some modifications done to his wheelchair, and of course lots and lots of therapies.

We also had lots of play time this week. Levi braved the swing with Malachi for the first time ever.

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We also did some sensory play with spaghetti, and he threw it all over Malachi. We were still finding chunks of it on Malachi’s head and outfit an hour later.

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Saturday was a beautiful day so we went to the soccer fields to watch my 6 year old niece play. Malachi practiced his cheers from home, shouting “GO”. This sounds a little crazy, but it was the first time Levi sat on grass. He went into sensory overload and didn’t enjoy it but maybe it will get better over time.

A few weeks ago I started following a family that had two children with trachs and extensive medical needs. I believe firmly that every special needs momma needs a network, and this momma’s story touched my heart. They recently lost one of the two boys and were selling shirts to fundraise for an adoption. I ordered one for Jake, Malachi, and I and this week the package came in the mail.

Jake came in from work and picked up the package that I had not yet opened. He asked “What is this?” and I explained that they were the t-shirts I had ordered from this other family. He opened the shirts and read the front which reads:

“And if not, He is still good.” based on Daniel 3:18

As Jake read the shirt tears welled in his eyes. Those words mean so much to our sweet little family. And what a testimony they are to the faith of this other family that lost their warrior.

Our life thus far has been a “If not” scenario. We have prayed, begged, pleaded, and bargained for miracles from God for our boys. We have struggled to breathe through our sobbing, shaking uncontrollably from head to toe with uncertainty. We have dirtied our knees praying on the floors of hospitals for miraculous healings that never came. We have lived the “If not”. Every day that I wake up to Malachi having yet another seizure is an “If not” day. Every squeak from Levi’s little throat when he is upset reminds me that he is still an “If not” kid.

God has not yet healed my boys.

The “If nots” look different for each and every one of us. They are the things in our lives that we have asked God to change or remove but they still remain. They are the huge requests that continue to go unanswered to our human eyes.

I don’t know why God hasn’t healed my sons yet. And while I still firmly know and believe that He can, we are still in the “If not” phase of life.

The “If nots” are what make or break your faith in God. Those are the moments that you make a choice to continue to stand firm in your faith or allow the disappointments to shatter that faith.

But as these beautiful shirts remind me: “And if not, He is still good.”

God’s goodness isn’t based on whether we get the things we think we deserve from him. We must trust that God’s plans for us are bigger and greater than our own.

We must believe and trust that there is unimaginable purpose in the “If nots” of our lives.

And even when the “If nots” make us weak in the knees and take our breath away, our faith in God’s plans must be strong enough to shout to the world that He is still good.

So tomorrow morning I will most likely wake up to Malachi having another large seizure…a blatant and physical “If not” moment that reminds me that his brain has not yet been made whole by God. So tonight I will ask God for the grace and strength to honestly proclaim that He is still good.

I want to challenge you to speak those same prayers to Him over your “If not” moments this week.

And please say a prayer for our big appointments this week. Scheduling surgeries is always hard on my heart. I know the surgeries are coming, but when they are given a specific date and space on the calendar it even harder to process.

Much love,

Leah

 

It Will Not Return Empty

Levi is “helping” me type this post so if something seems amiss it is likely the result of his crazy fast raccoon hands.

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Which leads me to the next  two words: separation anxiety. Part of me feels flattered that Levi wants to be touching me 24/7. Then the stressed out mother side of me can’t quite figure out how to appease his 16 month old demands and keep up with Malachi’s needs.

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The ever creeping in mommy guilt tells me that this is a result of his nearly 5 month hospital stay in Cincinnati. No child should ever have to wake up and not have mommy close by to comfort him. I have to purposefully not allow myself to mentally go back to those months- it puts me in a dark place and reminds me that I couldn’t be the mom I wanted to be for both of the boys.

We have set up Levi’s crib just a few feet from my side of the bed so I can watch him closely at night. He is hooked up to all of his monitors but I am still an anxious mess with the wire management and safety issues. Last night I woke up around 3am and he was silently leaning as far as he could, arm through the slats of the crib to try and touch me. At first it freaked me out then I couldn’t stop laughing. Sweet little Levi.

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I invested in a portable baby play yard for him, particularly when I am at work. He discovered the copier recently and loves to open and close the drawers when mommy is printing important papers. Thankfully he tolerates it pretty well as long as he can see me at all times!

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This week we have started trying to get Levi used to a feed backpack. He is on his feeds for 18 hours a day and chasing after him to make sure the bag doesn’t get caught on things when he crawls is increasingly difficult. If we can get him to start wearing his pump and feed bag then that safety factor is eliminated. It didn’t go so well, but we will keep trying! And ignore the mess in the background of every photo I post. Toddler life.

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Malachi had a great week that morphed into a rough weekend. He woke up on Friday night with a fever that stuck around through the weekend. He also has some respiratory junk going on causing his seizures to increase. Even when he is sick, he stays in great spirits so we have been camping out at home all weekend watching cartoons and playing with toys. Lots of Mickey Mouse Clubhouse “Hot Diggity Dog” dancing.

On that note, there are a few cartoons we avoid because they have so many physical commands, like “Everyone get up on your feet and jump!” We never want Malachi to feel the sadness of not being able to do what they ask, as he is very aware of what they are asking him to do.

One of the shows we limit watching is Little Einstein. He LOVES that show but they ask for your help to power their rocket. You have to pat your hands on your lap and increase the speed to get the jet to go. With Malachi’s vivid imagination he takes these tasks very seriously so we always make sure to help him with the actions.

Since he hasn’t been feeling well we thought we would treat him and let him watch several episodes. At one point I forgot to pay attention and help him power the rocket, and he wildly started hitting my leg to remind me. It is in these moments that I see the excitement of a six year old shining through.

He has been extra opinionated about what he wears lately, which is also fun to see. I give him two options for each thing he gets to pick out: his tummy tube dressing, his shirt, and his bib. He uses his NO sign to tell me which one he doesn’t want. He takes such pride in what he picks out to wear and we love giving him the independence of making that choice. As you can see, we are pretty biased towards superheroes right now.

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Both of the boys rocked their appointments this week! Malachi’s hippotherapist has been blown away lately by how well Malachi is progressing. She told me with wide eyes this week, “He is just a completely different kid!” This week he got to feed his horse some treats which brought a big smile to his face!

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Malachi had an appointment with his epileptologist (neurologist that specializes in epilepsy). This was our first appointment with him since we started Epidiolex (the CBD medication) about 5 months ago. We talked about the pros and the cons that we are seeing, and how mostly it is all positive progress. The CBD medication can mess with the absorption rates of other anti-convulsant medications, particularly the one that Malachi takes at night. We are going to try to wean that one a bit, watching him closely for any increase in seizures.

The weaning process is always tricky. And with his sickness hitting at the same time as our med change I am not sure what to blame.

Whenever we have appointment days in Chattanooga I try to find something fun for the kids to be excited about. We have an annual pass to the small zoo downtown and the weather was beautiful so I told Malachi we would stop by to see his jaguar friend.

Here is a photo with the new anteater.

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Levi rode in his big boy stroller for the first time at the zoo and the perspective changed things a bit for him. He was terrified of every animals he saw, screaming when they came close to him. The shrieking made Malachi laugh, so between the animals and his wild brother he had a wonderful time!

This picture of them looking at the chimpanzee sums up the emotions well. Curious Malachi, angry Levi.

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His jaguar friend was sleeping in the sunshine, and Malachi can only see the animals when they get close. He was visibly disappointed that he couldn’t see him so we set out to find an animal that he could see. His second favorite animal there is the snake, but only because they let him hold it one time. Third on the list is the black crow….random I know. But on our first ever visit to the zoo the crow asked Malachi “Where do you go to school?” I genuinely thought I was on a hidden camera show and asked a worker about it. She explained that the crow had picked up several sentences and words and could actually talk quite well.

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Malachi likes to shout HI to the crow, and without exception the crow always talks back to him. They are good buddies. And of course, Levi was terrified out of his mind that the bird talked which is guess is totally relatable. Needless to say, our zoo excursion lasted about an hour.

I always thought I would be a frugal, hard nosed mom that didn’t give in to her child’s begging for overpriced souvenirs from the gift shop. But instead I have become the mom that spends $5 on a llama shaped ink pen, just because it makes Malachi smile to pick out something special. That llama pen brought him so much joy as I told him he and daddy could work on writing their letters later after dinner.

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We had all sorts of fun things planned for the weekend, but when Malachi gets sick things come to a screeching halt. Now that he has his g-tube there is a little less pressure on us as we know dehydration won’t become an issue. But we still get anxious and watch him closely for anything that warrants a hospital stay. So far so good.

Sometimes this halt in life is a hidden blessing, as we get to throw all plans out the door and spend time together at home as a family.  Friday was a long night for sick Malachi and momma so on Saturday I needed a little mental break. I snuck out (of course when Levi wasn’t looking) and drove out to the Mennonite market to get some fresh bread and cinnamon rolls, picked up a pizza, and headed to a Redbox to rent a movie.

We also caught up on baths, laundry, bill paying, grant applications, and a little bit of cleaning! Check out this post bath hair; curls like his daddy:

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Every now and then Malachi’s “Chick-Fil-A post” from 2017 flares back up again on Facebook. I don’t understand technology well enough to know why or how this happens, but I can always tell based on the amount of friend requests I suddenly get. Last week his post flared again getting another 33,000 likes in about three days, taking the total likes on the original post to 246,000. Each time this happens I always wonder what God is up to!

When I think back to the day I wrote that post I laugh to myself…God had been prodding me to write it and I ignored Him. He prodded and prodded and prodded. Usually when He lays something on my heart to write, it has a scripture within it. But this one didn’t mention God. It is literally one of the only big posts I have done on Facebook that doesn’t mention Him.

It was two days after the encounter in Chick-Fil-A that I sat down to write the note to “The mom of three…” (https://www.facebook.com/photo.php?fbid=10100707570909686&set=a.841223295276&type=3)

I choose to believe that nothing in this life is coincidence. There is a plan that God has for each and every one of us, and my plan involved being pregnant and craving chicken that specific day. I look at the number of other special needs moms that viral post connected me with and I see the work of an all-knowing God.

Early on in our journey with Malachi and his extensive medical needs, I remember feeling overwhelmingly alone. As the years went on I started to get glimpses of other warrior children fighting similar battles and my scope widened. I remember seeing a photo of another child with Malachi’s specific HIE diagnosis and being blown away with their physical similarities.

God has used that post to allow me to help encourage other moms all around the world in similar journeys. I have exchanged hundreds of messages with strangers concerning medical diagnoses, insurance, equipment, and Jesus! That support network is something I craved early on and couldn’t find, so to be able to encourage and uplift others is so special to me.

As God continues to unfold the plan He has for my little unique family I can’t help but smile, realizing that this life is the opposite of the one I had planned…but in so many ways it is more beautiful than anything I could have ever imagined. I see glimpses of the nature of God in Malachi. And I see the power of God’s in simply obeying the tiny things he asks us to do….like write a silly Facebook post to the Chick-Fil-A mom.

Isaiah 55:8-11 says

“For my thoughts are not your thoughts,
    neither are your ways my ways,”
declares the Lord.
“As the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.
10 As the rain and the snow
    come down from heaven,
and do not return to it
    without watering the earth
and making it bud and flourish,
    so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
    It will not return to me empty,
but will accomplish what I desire
    and achieve the purpose for which I sent it.

WOW! Take a minute and read verse 11 again. If God is calling you to do something- even as insignificant as it may seem- choose to have faith that, with God as the catalyst, it is about to accomplish something big. Like the boy that brought his lunch that day that Jesus fed the 5,000…you never know what meager thing you will have to offer to the Lord that He plans to multiply.

He can take our imperfect scraps, like my Facebook post, and multiply them into beautiful, faith changing moments for others. All he needs is a willing heart, one that trusts that His ways are higher than our own.

My prayer is that God gives you and I opportunities to do the small things and an obedient heart. And that He continues to ripple effect those small things and make a wave that our minds can’t even fathom.

Much love,

Leah (and the now sleeping soundly Levi)

 

Boxed Up Chicken

I have stared at the computer screen for a solid five minutes trying to figure out where to even start, and all I could come up with this weird title- which I will explain about a bit more later in this blog.

I tried to get some cute photos of the boys this afternoon after church. While it was mostly a fail I did manage to get some sweet smiles over the course of several pictures.

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Another wacky week of therapies and appointments. I feel like at some point I am being redundant by highlighting all of our medical appointments and therapies, so I will focus on the noteworthy ones. Levi had his repeat hearing test this week, a suggestion made by the NICU in Cincinnati upon discharge. With his medication history he was pre-disposed to having hearing issues, but thankfully he passed! I can’t help but laugh at most of our appointments when they tell me what the requirements are. For this particular one she explained that he couldn’t be moving or crying while she put an ear plug in each of his ears for roughly a minute each.

Sometimes I wonder if I am in some weird psychological experiment to see how many “impossible tasks” medical professionals can throw at a mom until she breaks haha. Bring it on Sigmund Freud.

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The boys are still just as sweet as can be with each other. Levi has recently started to hold Malachi’s hand.

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While we were in Pigeon Forge last week on our getaway I ran by the outlet stores and stocked up on matching clothes for the boys. While I admit that I love matching them, Malachi genuinely gets a kick out of matching Levi. Malachi is about to grow out of the toddler sizes so buying them the same shirt in different sizes won’t happen again until Levi is Malachi’s age.

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And of course, most of the outfits are superhero themed since, well, they are basically superhuman kids. 🙂

Levi is still “crawling” and getting incredibly fast at it. I am worn out from chasing him around the house trying to keep him from pulling out his tummy tube or getting his wires caught on anything.

Malachi was invited to a friend’s birthday party, and since those invites are rare we tried hard to make it happen for him. Jake had a church event so I was solo with both boys; Levi is officially into a separation anxiety phase and can’t be out of sight from me without losing his mind so handing him off to a willing friend isn’t an option. But we got there and settled in.

The birthday girls mom let Malachi in on a big secret that there was a full sized chicken in one of the boxes. Apparently the 6 year old had been asking for one for her birthday so they boxed it up for her to open. Malachi was grinning with anticipation while she opened her presents and the boxed up chicken did not disappoint. As soon as the box opened the chicken sprung out, grazing children in the head as it “flew” frantically around the room. Of course every child in the room began screaming in sheer terror as it looked for a place to land, eventually settling on the head of an older woman in the crowd. Malachi thought the whole scene was the best thing he had heard in a long time and couldn’t stop giggling.

I took this video a few minutes later- I think he was hoping that the next package would be another exciting chicken.

Malachi went to school three days this week, which made him one happy little boy. We saw one of his teachers in town this week and he was so excited to see her outside of the school setting.

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The weather here has been beautiful and the boys have been enjoying coming out to the soccer games this week! I have a new set up in the back of the van where Levi can crawl around and Malachi can sit in his special bean bag seat. My mom comes to supervise them and we park them right next to the field! It has been working wonderfully for now.

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I have a whole lot of nonsense to blog about tonight, and in no particular order so bear with me.

My first thought tonight was about the importance of choosing contentment. I know I talk about this a lot, but it is so very vital in the life of a Christian. There are so many moments in my day that I feel a mourning moment creeping into my soul as I think how things “should have been”. Truthfully, things like the birthday party this week are hard for me as I am surrounded by kids Malachi’s age all doing things Malachi “should” be doing. That lump in my throat starts to form as I watch them effortlessly climb and jump.

But then my pity party radar goes off and I take my eyes off the children and look at my Malachi, grinning ear to ear listening and waiting for the chicken in the box. The life that he knows is full of joy, and I have to remember to be grateful for quality of life Malachi does have. And if Malachi is content, then it only makes sense that I choose contentment as well.

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But contentment is a heart issue. It is something that only God can do as He had to transform your mind and heart. Contentment alone is easy when things are going well. But true contentment in less than ideal circumstances is indeed a gift from God that can only be manufactured by Him.

This Wednesday we started a new Bible study with the kids in our youth group and used this verse as our springboard:

Hebrews 11:13-16

13 All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. 14 People who say such things show that they are looking for a country of their own. 15 If they had been thinking of the country they had left, they would have had opportunity to return. 16 Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.

Hebrews 11 is commonly known as the Faith Hall of Fame as it lists so many people acknowledged for their extraordinary faith. Reading through their stories is inspiring and we tend to stop at verse 13. But these verses are just as important for us to remember!

It mentions that even until the moment they died, they were still living by faith. But even more noteworthy is that they acknowledged that they were strangers on earth, looking for a country of their own. The more God works in the Carroll family the more I see the beauty and peace that comes in knowing that this is a temporary place for my family.

I find myself longing for a better country…a heavenly one. A place with perfect legs, perfect brains, and perfect vocal cords. A place without exhaustion and caffeine addictions.

But there is a reason that each of us have been placed on the earth. Do we recognize the significance of that mission? Do we see the opportunities God gives to us to share our faith with others? Do we look to be the hands of Jesus for others?

Are we treating this life like it is a temporary pilgrimage on our way to a heavenly home? Do our priorities in life and the things we focus our time towards reflect our recognition that this life is temporary? Or do we cling to the idea that this world should be about us?

I have been challenged lately by God to “pour myself out”. I laugh as I type this because if I shared a typical Carroll week with you would be blown away by the number of things we pack into a week. But God continues to ask us to do more. So we pour and we pour, and then we watch as God replenishes and uses the pouring moments to strengthen our own faith.

He keeps reminding me that this is not my home. But until that day comes I am called to give, give, and then give some more. And to do so without expectation of return or reward. Simply because that is what God asks of us.

My thought challenge for the week…are you pouring your life into others? In what ways does your life make a kingdom impact? Or are you more concerned with making your time on earth a comfortable one full of luxuries?

Are you trying to make this earthly pilgrimage a reflection of the heavenly life you desire?

Let me challenge you to pray about what you have been placed on this earth to do. What people has God allowed your path to cross with for a very specific reason.

I am literally going cross-eyed with exhaustion tonight but want to write more…I guess I will have to save those thoughts for next week!

God bless,

Leah

Gettin’ Away

Oh my what a week we have had!

Let’s start with the boring medical info. Monday night was the dreaded sleep study. I begrudgingly checked us in at 6:00pm and the wires were in place by 7:30.

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I counted the wires alone and there were exactly 50 glued to his head, face, and body. He also had two bands on his torso and chest. Levi was not happy during the gluing and wrapping process.

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This time around was different than his previous studies as we were trying to figure out what to turn his oxygen up to in order for him to sleep comfortably. He is safe at a lower flow but doesn’t stay in a deep sleep very long, so they wanted to try cranking him up. They started at 1/2 liter and the nurse did not turn him up throughout the night, which is a good sign.

That is the tricky thing about sleep studies- you have no idea if it is going well or not. All of the monitoring equipment is hidden from view except for the carbon dioxide output machine which was at a safe level all night. We will get results April 11 when we meet with his Chattanooga pulmonologist. From there we will schedule his next throat scope (called a microlaryngoscopy and bronchoscopy) in Cincinnati.

Levi slept pretty soundly; MUCH better than the last study. The test ends at 4:30am and they come in, wake you up, and take all the wires off. It is a rough way to wake up but boy was he happy when all of them were finally off. It took three long baths to get the glue out of his hair!

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Malachi ended up staying sick through Monday but since Levi didn’t seem to be coming down with anything we kept his therapy appointment on Monday. Tuesday both boys had feeding therapy. Wednesday both had GI appointments and Malachi had horse therapy.

I officially changed my first g-tube alone, and hated every moment of it haha. Oddly enough I am easily grossed out by medical things. This life makes me suck it up and fight through it but some things still give me a heebie jeebies. Changing Malachi’s tummy tube was no exception.

With all the medical appointments out of the way for the week and Jake on spring break we attempted our first non-medical getaway! As you already know, traveling with the boys and their gear is very challenging. I went back and forth all week trying to decide whether it was worth the trouble but breaks like this don’t come often so I finally pulled the trigger and booked a condo in Pigeon Forge.

We have to have a full kitchen with a fridge and freezer to accommodate medications, formulas, ice packs for feeding bags, and a sink for washing/sanitizing. We prefer ground floor in case of emergency and handicap accessible is always a plus.

Levi requires a large tank of oxygen per night (3 feet tall) and 1.5 small tanks per day. He uses an IV pole at night for his feed bag, his feeding pump, and a pulse oximeter to monitor his breathing and heart rate at night. Between both boys we administer 9 medications each day, all requiring syringes that have to be washed after each use. Then there are the bottles, feeding pump bags, formulas for each boy, diapers, tapes, g-tube dressings, and back up EVERYTHING. We have to think of every worse case scenario and prep for it, as most medical things we use can’t be purchased at just any drug store.

This time around we brought a 25 foot cannula for the hotel room so we would be able to move more than 5 feet from the tank. We also took that to the pool so Levi could swim with his oxygen on (more on that in a minute).

After I booked the hotel we started talking to Malachi about our big adventure and he was wide eyed with excitement. When the time came for us to officially leave he was wild! The first stop was to a dinner show called the Hatfields and McCoys. We had told Malachi a little bit about the show but we didn’t know what to expect.

Malachi LOVED every second of that show. They shot guns, had people clogging (dancing with loud shoes), dynamite, and his favorite- dogs jumping into a pool. He doesn’t see well so I made sure to narrate every scene. His imagination was on fire and he acted out whatever he was hearing. At one point two characters were fighting and Malachi intently listened, swinging his little arms like he was in the fight too. Seeing his excitement was heart warming.

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Levi screamed his head off in sheer terror for the first 30 minutes, wondering why we brought him to such a crazy place. Then after he settled down he watched the show intently.

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The next day we grabbed some lunch and went back to the hotel for a swim.

Malachi was shaking with excitement as we prepped for the pool. Levi had never been in a pool before so we weren’t sure what to expect. Thankfully he loved it!

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Malachi didn’t want to sit still for a picture and kept trying to swim away. This is his determined face. He loves the independence that swimming gives him and doesn’t want to stop for silly mom pictures.

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Look at those semi-straight feet! Progress!

Someone asked this week about swimming and their g-tubes, which is a great question so I thought I would answer it here for anyone else who might be interested. Most of the rules for g-tubes are contingent on the stomas, which is a fancy name for the actual hole that the device goes into…kind of like a pierced ear. We have to keep this area dry and clean to prevent infection or skin breakdown. Right now both boys have beautiful stomas with no skin issues (praise the Lord!) so we felt a little more comfortable attempting a public pool, although we will not do this often.

Lakes, rivers, and other bacteria ridden places are a no-go but properly cared for public pools (no public hot tubs) are okay if the stoma is okay. We asked about how often the chlorine levels are checked and felt that this place worked hard to maintain their pool, giving us a little more peace of mind. The stomach is a non-sterile environment anyway full of bacteria so it is a little more acceptable than say a surgery site.

Speaking of germs, in my neurotic Leah way I took my rubber gloves and hospital grade wipes and spent a solid thirty minutes sanitizing the germs out of our rental! Always a must!

We headed back to the room for naps, then attempted a late night comedy show with juggling, dog tricks, and all sorts of other fun things. We made it to the intermission before Levi melted down so we headed back to the hotel for meds and bed.

This is Malachi’s “listening intently” face.

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Levi did not like sleeping in a new environment and woke up in a panic several times a night. It was pretty pitiful to see the terror on his face.

Malachi takes weeks to recover from any respiratory illness as he doesn’t know how to cough and clear his throat. He wakes up coughing at least two or three times each night still and has to throw up to clear his throat. It is pitiful to see and upsets him every time. I am hoping this week he will be able to sleep more soundly.

We left his chair in the car one evening and had to improvise a bit, much to his amusement.

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Saturday morning we packed up and headed out, stopping by the Jurassic Jungle Boat Ride on the way home. It is a 7 minute boat ride through a pitch dark cave with animated life-like dinosaurs that jump out at you. We knew that would be a grave mistake with Levi so mommy and Malachi went and I narrated the dinosaurs for him. Because it was dark he was able to see a bit better than normal, but just listening to them was a thrill for him. His favorite part was two t-rex dinos fighting and he will act it out for you if you ask him, roaring and swinging his arms like they did.

He still hates the sunlight and wouldn’t open his eyes for our picture.

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Overall it was such a great trip for our family. Giving the boys “normal” experiences like these is something we need to try to do more often. Malachi was such a 6 year old, unabashedly excited about each new leg of our adventure. He giggled more in those few days then he does in a typical week, and that alone makes it worthwhile.

Levi is in a difficult stage (for us) and is extra whiny. He also wants to be mobile, butt-scooting all over the place, which isn’t feasible in public. He has to be within eyesight of me at all times or he will scream until he can’t breathe. We think he is cutting his molars so we are holding on to hope that this is just a phase. Don’t let the cute face fool you!

 

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He has also been trying all kinds of new foods this week! We are so happy with the leaps and bounds he is making.

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Anytime we leave our comfort zone we are reminded of how blessed we are to live in a small town where everyone knows our quirky family. When we are in new environments we tend to turn more heads, and this trip there was a whole lot of staring going on everywhere we went. I can handle most casual looks, but the hard-core staring that lasts longer than 3 minutes makes me so uncomfortable. There are curious eyes, kind eyes, judgy eyes, and disgusted eyes. I can tell you the type without even looking directly at them, and this trip was a mix of all of the types. I don’t know if that part will ever get any easier.

On to the devotional thought part of the post. I hope this doesn’t come off at all as arrogant, so please read with the right tone in mind…

Since Malachi’s birth six years ago, God has been doing something new in my life and I have watched in amazement as He has used me in a new and unique way. The Holy Spirit prompts me to write, and when He does I simply sit back and let God do the talking through me. I know that I sound like a crazy religious nut right now, and I don’t even know if I can accurately put into words how God writes through me, but I can tell you that when I read the words the next day I acknowledge that they are not my own. I literally do not recognize them. They are simply a message from God, using my story and platform to show glimpses of God’s heart to others.

I can go blog by blog with you and tell you which parts were written by Leah and which parts were written by God. He doesn’t take over every week, but when He does it is evident and purposeful. There is a distinct feeling that happens each time, and when it is finished I have such a sweet spirit overcome me. I always know there is an intended audience in mind and knowing that they will hear a word from the Lord brings me so much joy.

When Malachi’s Chick-Fil-A post went viral in 2017 that was a God post. He prompted and I ignored for two days. And through that one post we have been able to speak to millions about the value of life in the eyes of God.

I always wonder who the post is for…and the majority of the time I never get to find out…it really is none of my business. But this week as I looked back at an older post on Facebook, one that I know was written by God, I realized that it was exactly what I needed to hear. He prompted me that day to stop everything and write- I remember Jake getting annoyed because I tossed both kids at him and headed to the closet to type haha. The words pierced my soul as I read them, almost as if I was reading them for the first time. I thought I would share them with you again just in case someone out there needed to hear them again as well.

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“Although the Lord gives you the bread of adversity and the water of affliction, your Teacher will be hidden no more; with your own eyes you will see your Teacher. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying ‘This is the way; walk in it.’ “ Isaiah 30:20-21

Earlier today I caught myself in a moment of mourning. As I prepared to give Levi a bath I flashed back to conversations with Jake when I was pregnant. We talked about how Levi would be the “easy” one. After Malachi’s rough start we were so thankful that God blessed us with a second son.

We talked about how different this child would be…how it would feel to take him home after just a few days in the hospital instead of the 4 months big brother took growing and healing before we got to bring him home.

We talked about how odd it would feel to have a healthy child that didn’t have to be at the doctor all the time. A child that wouldn’t have to go through the pain of surgery after surgery to try to fix brokenness.

We talked about how this child would get to witness the testimony of his medically complex brother and how it would shape him to be a caring and special man. We never dreamed that he would have a testimony all of his own before the age of 1.

Levi was supposed to be easy. He was supposed to be healthy. He was supposed to be “normal”. Instead, Levi has surpassed Malachi’s NICU stay and has blown past his surgery count.

And as I prepared his bath this morning and spent 20 minutes gathering his medical equipment- things he literally can’t live without- the pain of unmet expectations hit me hard.

This verse talks about the bread of adversity and the water of affliction. And as I read that line I heard my heart pleading “YES Lord. Why does our bread and water taste so different than everyone else’s? Why can’t we get the manna you send to others? Why do we have to be…well, different?” The pain of seeing my children suffer is something I can’t put into words.

But then comes the next line. The line that reminds me that God’s plan is greater than the dreams I had for normal.

“This is the way; walk in it.”

So simple. So direct. So eye-opening.

We aren’t supposed to have “expectations” for God, with the exception of expecting God to move in our lives. And oh boy, He sure does move in the Carroll family.

So as I look at this picture- this photo that represents my unmet expectations and my shattered dreams…again- I hear the voice of my God saying “This is the way; walk in it.” And I put my unique and complicated child into that tub and reminded myself that each time we take a step of faith and rely on God to get us through the next 60 seconds we bring glory to His name.

And I continue to believe that God’s dreams and plans for my children is so much greater than my pleas for normalcy.

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How cool is it that God placed something on my heart 8 months ago that He knew I would need to hear today?!?
This week my thought provoking verse has been from Isaiah 43:
“Do not fear, for I have redeemed you;
    I have summoned you by name; you are mine.
When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.”
This has been my much needed reminder that God has called me by name for this life. I like that He states that first and foremost.
Then He goes on to the not so pleasant parts. The parts about passing through the waters, rivers, and fires. These are the things we like to think should never happen to us as followers of Christ. We feel like we should be exempt from any discomfort from life or potential suffering. We sometimes see these trials and sticky situations we find ourselves in as some sort of punishment from God.
But God is quick to confirm at the beginning that we are not to fear and that we belong to Him. The waters will rise, the rivers will pick up speed, and the fires will blaze. And we will go through each of those things. But we will never be overcome by them because we belong to God. We are simply commanded not to fear.
Looking back I can fill a book with times I have been in that river, a swift current rising over the bottom of my chin and my feet grasping for solid footing in the dark river below me. I can look back and find time and time again when I struggled to breathe, in the midst of a fire surrounding me. The thick and smokey air nearly overcoming my rational thinking as I fight to find a way out of the darkness. These times come and these times shake me to my core.
But we are commanded by God to not fear. To continue to stand firm and believe that God will see us through. We like to forget that the God we serve can extinguish the fire with a single thought, or drain a river down to a wasteland with a whisper. We are called to a life of faith over fear. It is in those panic moments that I need to take on the boldness of Christ and stop giving the darkness around me power to bring fear.
I don’t know what you waters, rivers, and fires look like. But whatever they may be, know that God is calling you by name. Don’t choose to lose sight of Him in the darkness.
Much love,
Leah

When Germs Attack

Let’s start with some brotherly love. We have been teaching Levi Eskimo kisses where you rub noses together. Levi has been doing it to Malachi which is so precious to see. And Malachi loves it!

As you can guess from the title, the Carroll crew has been under attack with sickness. Last Sunday night I posted the blog and within the hour Levi was burning hot with fever. As soon as 8am rolled around I started making all the necessary phone calls to cancel his appointments for the day. Then we watched and waited.

Thankfully he sailed through the sickness in about two days and this one did not affect his respiratory rate at all. He was extra cranky, but that has been the name of our game for the last few weeks…he is an opinionated little boy. Jake texted me one day this week and asked how my day was going and this picture was my reply:

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He likes to follow me around these days screaming until I pick him up. Or going after the trash can. We are officially into baby proof mode. I came home and Jake had rearranged the kitchen a bit haha.

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Levi is working so hard at so many things these days and I am proud of his progress! We have to go into lock down when sickness hits and with more time in the house we were able to tackle more one on one focused tasks.

Focus and proper foot placement is everything!

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Here is a video showing the progress we are making with spoon feeds:

Levi is still not safe to take liquids by mouth since his vocal cords don’t close to protect his airway. When we first started trying foods by mouth Levi would gag if something barely touched his lips. We have been working to desensitize him over the last few months with feeding therapy and he is improving by leaps and bounds. This video progress is huge!

Today he cried when we wouldn’t share our lunch with him so we strapped him into his high chair and let him have a snack too.

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As you can see, he was pretty pleased.

Malachi managed to avoid Levi’s sickness and our week morphed back into normal by Thursday. We made it down to the hospital in Chattanooga for Levi’s final synagis medication shot for the season. Houdini Levi has been wiggling so much lately and we are having to say “no no” to him frequently. As you can see, he isn’t a fan.

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Friday morning Jake called from work to tell me he thought he was coming down with something. By 2:00 that afternoon Malachi was running a fever of 102.5 and crashed fast. He has been having a hard time keeping food down and throwing up several times a day and multiple times a night. Even on fever reducers his temp is staying high. We are trying desperately to keep Levi from getting whatever Jake and Malachi have!

Here are some photos of sweet Malachi prior to the start of his sickness. I just love him so much!!

He has been asking for his feeds through his tummy tube almost every feeding time this week, making us think that he has a sore throat.

We also went to our favorite local restaurant on Thursday night for my free birthday meal (celebrated the big 3-3 this week) and Malachi got so tickled listening to the chickens jump up into the tree to go to sleep. I pulled out the camera to catch his joy:

Thankfully Jake is on spring break this week, so continuing to stay on lock down will be much easier. Levi has a sleep study tomorrow night, which I am dreading with a passion. We have already re-scheduled this study multiple times due to sickness and the next procedure on his airway is dependent on getting this study done so I am ready to get it over with.

We did something ambitious and booked a hotel for Thursday and Friday night this week to go on a little getaway as a family. I am hoping we will all be sickness free enough to actually get to go. Pigeon Forge is a two hour drive from here and we thought that Malachi might enjoy going to some of the silly dinner shows. One of the ones I booked asked if Malachi would like a cow bell to ring during the show, which is an emphatic YES! More cow bell!

Our appointments are all in limbo this week as wait and see if these germs will go away. The boys each have physical therapies, feeding therapies, GI appointments, horse therapy, and Levi’s overnight sleep study.

I read two quotes this week that really struck a nerve with me and I have been reading them over and over again and processing the words.

“Some people could be given an entire field of roses and only see the thorns. Others could be given a single weed and only see the wildflower in it. Perception is a key component to gratitude. And gratitude is a key component to joy.” -Amy Weatherly

I have been thinking about the last sentence in that one about gratitude being the key component to joy. And the importance of gratitude in our lives is overwhelming.

The moment we start to think that we “deserve” things or that we are entitled to things we start to lose the joy that the simple feeling of gratitude can produce. Life throws us unexpected outcomes and disappointments, but when we get to the point where we can no longer find things to be grateful for then we are in a dark place.

I think the same thing is true about our walk with God. We must always remember the power of the grace He freely gives. And having a heart of humility and gratitude are so incredibly important.

The second quote hit me on a more personal level.

“I sat with my anger long enough, until she told me her real name was grief.”

Anger is something that I have struggled with over the last six years. I can grow so frustrated over such tiny things…especially the ones that are out of my control. It is almost embarrassing to think about the tiny things that make me mad.

As I read this quote I found myself nodding in agreement, acknowledging that grief drives so many of my ridiculously angry moments. This just isn’t how life was meant to be when I pictured it. I grieve every day over the dreams I had for my kids. And I grieve every hour over their suffering, wishing I could take it all away.

This morning in children’s church I showed the kids a sealed envelope and told them that even before they were born God wrote out a special plan just for their lives. I explained how God doesn’t show us what is on that plan until the time is just right.

I told them that when God wrote my plan he had on there that I would have a special son named Malachi in a bright green wheelchair and a little baby named Levi. Nothing is a surprise to God.

I also explained that there is a whole lot more on that plan that God hasn’t let me see yet, but faith means that I trust that God’s plan is way better than anything I could ever imagine. I just have to be patient and trust that God will reveal more and more of that plan to me when the time is right.

The kids processed my words and then one of the 5 year old boys said “But what if I want to see my envelope? I want to see it now not wait until later.” And my heart totally related to his in that moment.

Don’t we all want to see what is in the sealed envelope. We all would love a glimpse of what God has in store for us in the future. But if we got to peek at the envelope it would completely deplete the need for us to trust in an omnipotent God whose ways are higher than our own.

So I am working on trying to re-direct that grief from anger to faith in the unseen plan God has for my family.

Please pray for us this week, especially Monday evening for the sleep study. The last one was a challenge for sweet Levi and I can’t imagine this round will be any different. And pray for my emotional health as I can already feel the gates getting ready to burst. Inflicting pain and discomfort on my children is so challenging to process.

Much love,

Leah

 

 

 

New Legs

In typical Carroll family fashion we managed to cram a whole lot into one week. Let’s start with some high points…

Malachi got to attend school 3 days in a row this week! We base his attendance on the health of his classmates and our crazy appointment calendar. He only goes for 2-3.5 hours but he really loves being there with his friends. They had a themed week so he got to wear his pjs on Pajama Day. He laughed and giggled as I got him ready in his moose pjs and slippers. He has such a sweet and pure spirit and such a sense of humor.

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Levi- oh Levi. Never have I met a child like him.

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Levi had a wellness check at the doctor this week and flirted shamelessly with himself in the mirror. I caught a little bit on video for you. Note the kisses he is blowing to himself:

 

 

I was mortified at one point when he leaned over and licked the mirror before I could stop him! I am thankful there is a separate sick and wellness side at our pediatrician office.

Let’s transition to a low point from the week that happened at our pediatrician appointment. The dreaded milestones checklist. We went through this with Malachi and for some reason it did not affect me as much as it does with Levi. With Malachi we knew there would be delays when he was born so prematurely. We expected to have to check “not yet” on those lists. With Levi we never saw the possibility of developmental delays coming so checking those boxes hurts just a bit more.

Levi is nearly 16 months old and is not crawling yet. He isn’t pulling to stand or attempting to walk. He isn’t doing a whole slew of things he “should” be doing at his age. The interesting thing is that those facts don’t really bother me…but having to give my son a failing grade on a checklist at the doctor really bugs me for some reason.

This week has been filled with those subtle reminders that Levi is significantly delayed. I ordered him a new bath chair that will contain his wiggly self a bit better and the box says to stop using when the child can pull up to stand around the 10 month range. Ouch.

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But he is continuing to progress towards those darn milestones that everyone likes to focus on. Just in his own sweet time.

 

He even started a new crawl this week. I am not quite sure if I can call it that, but I did snap a video to share with you. One of my favorite things about this video is his sheepish little peek around the corner at the beginning to see if I was watching him. He had been going after the hair dryer cord which he knew was off limits:

We transitioned him this weekend to a real crib to help prep him for his sleep study next week. Cord management while he sleeps is stressing me out big time, and this week I had two instances of waking up to find the cords wrapped around his neck. It makes me sick to my stomach just thinking about it. We have tried so many tricks I have lost count. Last night I tried a trick with some velcro zip ties and it seemed to help, but the crib will continue to stay right by momma at night. Probably until he is 21 or he gets married.

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Malachi’s seizures have kicked up a notch this week which has been a little disappointing. They still aren’t up to his former typical 8 a day but the ones he is having are a little stronger than before. We will be watching them closely and calling the doc to check his med levels if they continue to increase.

The boys have some big appointments over the next two weeks and we could use some prayers for smooth days and positive reports.

This week has been a mentally challenging one for me. Every few weeks the exhaustion of being a special needs momma gets exceptionally overwhelming and I am definitely there. I am embarrassed to tell you how many times this week I called in prescriptions or called providers and gave them the wrong kids name or birthday. “Ma’am, we don’t have a patient by that name.” Oops.

This life is mentally, emotionally, and physically draining. Even in the short hours that I get a chance to sleep I am required to be a special needs mom, using my knee to maintain Malachi’s posturing in the bed beside me so he won’t hurt or smother himself. I can’t move from that same position at night. And when I start to complain to myself I immediately feel guilty, reminding myself that Malachi can’t change positions at night either so why should I complain! Sacrificing my comfort for his is something I should feel honored to do.

I have been having lots and lots and lots of PTSD flare ups this week as my mind keeps flashing back to some horrible memories over the last 6 years. I close my eyes at night and see Levi’s face on the Cincinnati NICU video monitor, crying and gasping for air but no one is there to pick him up and comfort him. And I can’t go over there because I am stuck in a Ronald McDonald house with Malachi who isn’t allowed in the unit. Those helpless feelings still grip my heart, even though he is now laying right next to me.

Or hearing that phone ring at 2am in the Chattanooga Ronald house and the doctor telling me to come quick, that Malachi might not make it through the emergency surgery they were getting ready to perform.

Today I drove a stretch of road and flashed back to the drive home with Levi from the NICU for the first time, the muscles in my back melting for the first time in months as they relaxed realizing we were almost home and together again as a family.

This life is filled with ups and downs, but those down moments stick with me. They never leave. They don’t even become memories…they stay in real time in my mind, flashing back in and repeating themselves all over again.

I have two happy and living children yet my heart still grieves in such an inexplicable way.

This week I have been talking to Malachi a lot about Jesus. We lay in bed at night while Levi is asleep in the crib next to us and whisper about the ways that God is going to heal him. He listens intently to every word and smiles with excitement. I always make sure to tell him that we don’t know when God is going to heal him, but we believe that he will one day! I never want Malachi to feel that something is “wrong” with him so these conversations can be tricky.

I can’t wait to have a conversation with him one day about all these moments in his life when he couldn’t speak back to me. There is no manual for parenting, especially when parenting a special little boy like him.

Transparency moment here: I have a very hard time visually seeing Malachi’s deformities. I am not disgusted by him or anything like that…it just breaks my heart to see what cerebral palsy does to him, knowing there is nothing I can do to reverse the damage or stop the pain.

When Malachi is fully clothed I can imagine things where they should be, but when I go to change him or give him a shower the reality of his disfigurement can’t be hidden. His body is a road map of scars and devices, all of them needed to preserve his quality of life. Seeing them brings about waves of hopelessness. But these moments have challenged my faith recently in some big ways.

When I see Malachi’s tiny, atrophied legs the devil is quick to remind me that there is no way that a child like him could ever support weight on them- even if his brain is healed and he can suddenly walk. But this week as I fought through those hopeless feelings God brought the story of the lame man from Acts 3 to mind.

Peter and John were headed to the temple to pray and they came across a man who had been lame since birth. I always find it interesting when the Bible includes these extra little nuggets like “since birth”. This man was likely very much like my sweet Malachi, his ankles as thin as the bones inside of them.

In verse 7 we read “Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God.”

Did you catch that extra nugget in verse 7? It doesn’t just say that he jumped to his feet, but it makes a point to mention that his feet and ankles became strong.

It points out the physically impossible so we won’t glaze over it. Prior to having Malachi I never understood the significance of this miracle. God changed the anatomy of that man.

So why do I keep doubting that God will do the same thing in my sweet Malachi?

A few verses later Peter is using the miracle to tell the crowd about Christ. He says:

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

The key is faith. It is continuing to believe in the impossible, in the unseen. It is continuing to be confident that God is able and willing to heal my Malachi, but already has the perfect moment planned out for that healing, whether it be on this earth or in heaven.

Faith takes a level of endurance that I could not achieve without God’s strength. “My grace is sufficient for you, for my power is made perfect in weakness.”

So instead of looking at Malachi’s weak deformed hips, dislocated knees, tiny ankles, and outwardly turning feet and seeing hopelessness I will choose to see hope. I will choose to hear “not yet” and have faith that Malachi’s day of healing is closer than it was yesterday.

Today I choose hope. And Malachi and I will stay up late tonight whispering about all the things he is going to do when God gives him his new legs. He’ll surely be walking and leaping and praising God.

Leah

 

Puppies & Pools

Here in southeast Tennessee we have been pounded with an incredible amount of rain. Downpours and the wheelchair life don’t mix well; on the plus side Jake’s school was closed 3.5 days and having him home to help was a blessing.

Levi is turning into quite the mischievous child and while he isn’t crawling yet he is successfully rolling anywhere he wants to go. The result is a mess of wires that we are continually untangling but we are so thankful for his mobility!

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He is also mastering the art of dumping out every bin he can get his hands on, and with such pride I might add.

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Malachi and Levi have been playing a lot together and are oddly good at sharing. My favorite is when Levi takes Malachi’s hand and helps him activate the toys. Levi is calling “Chi Chi” by name a lot lately.

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Jake and I have been working hard this week to get into a groove with Malachi’s feeding tube. Malachi is so intelligent so we try to give him a say with things that are in his control. We have been asking him if he would like his bottle in his mouth or in his tummy tube. 9 times out of 10 he will sign that he wants it in his mouth, but every now and then he votes tube! That is a big step. We ordered some special tube dressings that have superheroes on them so each morning he gets to decide which superhero to wear. That has also helped change his attitude towards the tube a bit.

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Right now we are doing two tube feeds a day and two by mouth. We are trying to pack on some pounds so the tube feeds are a high calorie formula instead of his almond milk smoothies.

Malachi has been rocking his therapy sessions lately, especially his horse therapy. He has been using both his words and his signs to get the horse to go and very interactive. We are seeing an increase in seizures this week but he is still more cognitively clear on the CBD medication.

Look at this sweet photo of Malachi from 4 years ago. I just love his precious heart.

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The boys had a fun surprise play date on Friday with a litter of puppies!

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We have been blessed with the opportunity to get to know a wonderful local family through a soccer league we run at the church. They invited our family over for dinner and puppy play time and the boys were thrilled!

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We knew Malachi would be full of giggles but we weren’t quite sure how Levi would react. He surprised us with his curiosity and boldness.

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Our friends are originally from Columbia and prepared a delicious dinner for our family, full of unique foods that were new to us. It was such a wonderful night with good, godly company.

I know I left you all on a cliffhanger last week with our unexpected blessing moment. The more I process the blessing the more it is blowing me away so here we go…

Repeatedly through this journey we have watched God meet needs we didn’t even know we would have. Then a few weeks or months later we see the reason why and recognize the ways that God protected us from discomfort for our family. God truly meets all of our needs.

We have also watched God go above and beyond what we could ever imagine. As I mentioned last week, around Christmastime we were at a restaurant and were approached by a local couple. They said that God laid it on their hearts to help our family and that they owned a construction business. He said to stop by his office to discuss what needs we have and last week we were able to meet up with them! I am purposefully not going to give any identifying information about these beautiful souls in order to respect their anonymity.

As I said before, God has overwhelmed us in the many ways He meets our needs. We get a lot of questions from close friends and family about our financial needs, so I am assuming many of you also have those questions. Having medically complex children can get extremely expensive, especially with the 22 surgeries we had last year between the boys, not to mention Levi’s 131 day ICU stay! Each week the boys have 5 therapy sessions, averaging about $150 each. Then add on any specialist appointments, testing, or hospital stays. You wouldn’t believe the amount of medical bills these boys accrue. It literally takes my breath away.

Needless to say, we are very thankful for Jake’s private insurance through his job! The boys each have a diagnosis (called a “presumptive disability”…based on their HIE brain damage diagnosis the state assumes they will be disabled for life) that automatically qualifies them for secondary state insurance. So each of their medical bills cycles through a primary and a secondary insurance before it makes its way to our mailbox.

Just like most of you, we have deductibles and out of pocket maximums to meet, but with this motley crew we typically hit those within two weeks of the new year. My record is January 2nd haha. So we take a hit at the beginning of the year, then coast relatively calmly through the remaining 11 months.

There are lots of pop-up costs that come up…things that insurance won’t cover. For example, they see a bath chair for Malachi as a “comfort item” and say it is not medically necessary. They cost around $4,000 each. A ceiling track system for the future runs about $25,000 and is not typically covered. His wheelchair stroller new costs $6,000 (we thankfully found a used one)! I apply for lots and lots of grants to help with these extra items and costs.

After our initial encounter with this generous couple, Jake and I prayed and thought long and hard about any needs we have. With us already being into late February we are in a stable, predictable place as far as bills go, making the hopeful prediction that there will be no major medical surprises on the horizon.

One of the things that Jake and I have had on our hearts since this summer is a therapy pool for Malachi. His physical therapist has one and allowed him to do swimming therapy in it this summer. Malachi has always loved the pool but seeing his tightness go away after 30 minutes in the warm water was amazing to see. The heated water is so therapeutic for his body, not to mention the brief independence it gives him. These pools are about 4 feet deep giving his body enough room to vertically float.

Just watch this sweet video of Malachi during a swimming therapy session this past summer.

So fast forward to last week’s meeting. Jake and I have saved enough money to buy Malachi’s therapy pool, but have been trying to figure out a way to make it accessible for him. It is going to require some poured concrete to extend it off the porch. Since this couple runs a construction company we instantly thought WOW- that God was up to His mysterious ways again!! You also need to know that Jake and I are very VERY hesitant to ask people for help. We would never want to inconvenience or take advantage of anyone’s generosity.

We explained the situation and asked if they would be able to help coordinate making an accessible spot for the pool to go.

Strap on your seat belts and listen to what happened next….

We went through pictures of the house and different places it could go and remain accessible. The man stated “I know exactly where to put it.” He then explained that he would like to knock out a wall in Malachi’s bathroom and build on an addition to our home to put in an indoor pool for Malachi. He wants it to be hooked to the central air and heat so it can be used year round and is making plans to make it 100% accessible for him.

I get chills and teary eyed just typing that. The Holy Spirit prompted this complete stranger to help our family in a way that is above and beyond anything we ever imagined! I felt the Holy Spirit in the room as the plan unrolled off this man’s lips.

Our faith is not based on these unexpected blessings, but oh how these hugs from God serve as beautiful reminders that He holds our family in the palm of His hands. Thank you Lord for continually meeting our needs and bringing such big blessings into our path, even when we don’t deserve them.

1 Corinthians 2:9 says “What no eye has seen, no ear has hear, and no human heart has conceived- God has prepared these things for those who love Him.”

While this scripture is likely hinting towards our future in Heaven, it has served once again as a reminder to me this week to not try to put walls around what I think God can do. He is omnipotent (all powerful) and omniscient (all knowing) and His wisdom is beyond anything we can imagine.

I am so thankful that God is going before me in this challenging walk. He prepares the ground we are about to walk on, and for that I am so grateful.

I have some other devotional thoughts but I am out of steam! I will save them for next week’s entry.

My prayer for you all this week is that you clearly see the hand of God in your life. I pray that He moves in his mysterious ways in your life too, and that your faith grows as you watch Him work.

Much love,

Leah

Immeasurably More

I wish I could wear a camera all day and share the many sweet brother moments we have each day. While Levi can be a wild man towards Malachi, he is often very sweet and loves to be close to him at all times. We got this bath chair with some grant money last year so the boys could share the tub. Levi isn’t quite ready for a big boy bath yet so we set the chair up in the living room. They both love being so close and accessible to one another.

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Levi is starting to say Malachi’s name (he calls him Chi Chi) and hearing it is so beautiful. I happened to catch it on film for Jake and thought you would like to hear it too!

Our crew had a typical week, racing from one appointment to the next and praying for God to get us through the next 24 hours. That may sound dramatic, but that is our reality! Our life and energy level defies logic so we lean heavily on strength from God.

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This handsome six year old lost another tooth this week! This one didn’t get swallowed so he got to put it under his pillow and get some more chocolate.

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The beginning of the year is always a dicey time for special needs mom as we start over with deductibles and out of pocket maximums. Navigating the bills is quite a job and requires a lot of phone calls and double/triple checking…did they file through primary AND secondary? Should I appeal something they are saying isn’t covered? Last year we broke our record and hit our deductible by January 1st!

So much of insurance is playing the game and learning the ropes. For example, I have to order g-tube and oxygen supplies for the kids every month. Some things, like a specific tape, I don’t necessarily need every month. But if I don’t order it for 3 months they remove it from the list of available items and to get it again requires a doctor prescription (which equals about 3 phone calls for me). So I have a list of things I add to the regular items to make sure they stay current on our list.

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Malachi’s wheelchair is also up for replacement. The average “life” of a wheelchair is 3-5 years and we got his just over three years ago. We met with the Durable Medical Equipment provider (DME) this week to talk about options. They looked at his current chair and said that it was still the most appropriate chair style for Malachi. The frame looks solid enough and there is still enough room for growth so it doesn’t need to be fully replaced. We talked about my concerns with his positioning, especially his head and hips so we have a few minor modifications we are going to try to make to it.

It is in these meetings that I get unintentional snapshots of the future for Malachi. The DME was explaining the importance of good posturing and what we can expect later in life if we continue to choose Malachi’s comfort now over his body in the future. As we have explained to you many times, we always strive to give Malachi a full, happy, and comfortable life. Unfortunately that goal may be setting him up for more pain in the future as his body does what it wants to do right now. We could be more aggressive about posturing him, but I am just so worried we will be causing pain for him in the present, AS WELL as the future. The decisions we have to make can be overwhelming.

 

 

We have been trying to utilize Malachi’s g-tube more. For those of you that are not familiar with feeding tubes I will try to explain this a bit. Malachi and Levi both have the same type of g-tube, called a Mic-Key button, but we use them very differently. Here is a visual of the button.

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Levi is on what we call “continuous feeds”. He is hooked to a bag and a pump that feeds him in small amounts for 18 hours a day. We carry a small feeding backpack around at all times and inside of it is a bag of formula, ice packs, and a feeding pump that is programmed for a certain rate. We leave the extension (the tube that plugs into the button in his stomach) on at all times because it is used so frequently. We tape it onto his belly because he pulls at the tubing all the time. You will see this white tube coming out of the bottom of his onesie in nearly all the pictures I post. One of my biggest fears is him ripping the whole mechanism out of his belly so the tape gives me a little peace of mind as I can hear it rip off his skin when he is in wild man mode and get to him before he does more damage. If the tube gets pulled out undetected (like during their sleep) for more than 4 hours, they have to surgically put it back in.

Malachi has not tolerated pump feeds well but is adjusting to “bolus feeds”. This means that once or twice a day, particularly when we are on the road for appointments, I pull over and feed him through the tube which takes about 5-8 minutes for 6 ounces. I hook an extension tube into the button and put a giant syringe on the end. I fill that syringe up with formula and hold it up so gravity can take it into his tummy. Once the feed is done we unhook the extension leaving just a penny sized button on his tummy. I took this picture of a bolus feed in a Taco Bell parking lot this week to give you a visual haha.

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We were hoping having a g-tube would help with seizure management for Malachi, as the majority of his are triggered by intestinal discomfort, but unfortunately it has not made a difference. He still has the same amount of burps whether we feed him like normal or through his tube.

Changing gears here…

I have been absolutely BLOWN AWAY by God this week. There is a verse in the Bible (Ephesians 3:20) that says “Now to Him who is able to do immeasurably more than all we ask or imagine, to Him be the glory…”

A few months ago Jake and I had an encounter with a stranger at a restaurant. He walked over and said that God laid it on his heart to help our family. He gave us his contact information and told us to track him down over the next few weeks and walked away.

Jake and I weren’t quite sure what the man meant, but over the last few months I have been trying to set up a meeting with this very busy man. On Tuesday afternoon I finally got the chance to sit down with him and talk. I don’t want to go into details yet until things are actually progressing, but I want to tell you that I watched as God brought that Ephesians 3:20 verse to life right before my eyes. He used this very generous man to show me that sometimes God’s plans are sometimes so much bigger than anything we could ever ask or imagine! To God be the glory.

Time and time again we have watched God meet our needs before we even knew what they were. There is not a doubt in my mind that God is holding my family in the palm of His hand…and the undeserved blessings that He continues to send our way leave us speechless. I was literally speechless as I left this man’s office on Tuesday; and the presence of God was so undeniably evident in this situation. It brought Jake and I to tears.

It is through these unforeseen blessings that I hear God say “Leah, I see you. Your struggles, trials, and tears are never hidden from my view. And through it all remember that I chose you for this life, and I will equip you for the task. Just have faith that my ways are beautifully mysterious and trust that I will continue to care for you in this calling.”

I can’t wait to share more about this unexpected blessing with you all over the next few weeks. I know I just presented you with a movie trailer and left you hanging, but I promise more info to come when the timing is right! It will BLOW YOUR MIND and is such a testimony.

Please pray a hedge of protection around the boys as I am starting to develop signs of a cold. If the discomfort I am experiencing from it hits either of the boys then we are in for a long and miserable week. Help us pray the germs away!

Much love,

Leah