We are officially homeless! The cabin closing was on Tuesday afternoon and went great. We have been praying blessings over the family that bought it, and hope they enjoy it as much as we did.

After the closing we headed to a quick celebration dinner at the Olive Garden then hit the road. We stopped overnight in Kentucky then made the rest of the trip to Ohio the following morning. As I write this, I am camped out in one of the guest rooms at my father’s house. We will be packing up this evening and heading back to Tennessee tomorrow.

Malachi has handled the transitions very well! He has learned the word “adventure” and we have been using it a lot lately so he can learn to expect something different than normal. He has still been sleeping better than ever before, logging in about 7-8 hours each night! There are still wake ups throughout the night but they are an hour or less.

While in Ohio we have been traveling around visiting with family, and boy has he loved that! He definitely remembers the people here in Ohio well and is currently downstairs hollering and laughing with my 5 year old half sister and 20 month old half brother. This video was from a Saturday morning.

We have also been able to take Malachi to two churches while we are here, both of which have been fervently praying for Malachi since his rough start! It has been such a blessing to me to hear that he is still on the hearts and minds of others. Sometimes it overwhelms me when I sit down to pray miracles over Malachi’s life, and knowing that I have reinforcements doing the same is a huge encouragement.

The Christmas season is something that Jake and I are still trying to figure out. We aren’t quite sure yet how it will look for our family. As in all spiritual matters, convictions are between you and God and not meant to be universal rules for others to follow, so please don’t think there is any judgment hidden in my words! More than ever, this year we have both been trying to process how the Christmas holiday 1) brings glory to God and 2) points to Jesus. While the holiday should be centered around the birth of a savior, it is most definitely clouded by Santa, traditions, lights, and personal gain. We are confident we will be able to design a holiday tradition that accomplishes these two things though

We are still in the rough draft stages of knowing how we want to design the holiday in our home, but for now we tread lightly. We were able to purchase Malachi a few switch adapted toys with a generous financial gift from a sweet couple at church, but other than that we did not exchange gifts this year between the three of us or do any traditional Santa visits, etc. Not bah-humbugs, but following a verse that has been laid on my heart this holiday season:

Romans 12:2  ^“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”

Christmas day we went to church and then wandered around town trying to find a place to grab some lunch. Obviously this was a challenge as most places were closed. We found a Steak and Shake and enjoyed some frisco melts and burgers and even a brownie with ice cream on top. We saw an elderly man eating alone and thought we would pay it forward a bit by paying for his meal. We were able to successfully get his ticket and when we went to go pay we discovered that someone else had paid for ours! So much kindness.

Malachi did wonderfully at his horse therapy session, working harder than normal despite the chilly temperatures. We shortened the session so he wouldn’t get too cold and back home we went. Unfortunately Malachi couldn’t seem to regulate his body temperature from the little bit we were out there and hit temperature went up to 100 that evening. We were able to bring it down, but as it often does it continued to drop so we worked to bring it back up again. Oh, the quirks of Malachi!

So our adventure will continue as we head into this week! We will be moving into the camper until the rental home is ready (tentatively next Sunday) where we will not have access to the internet. I will try to post an update next week, but bear with me if it is shorter or later than normal. We will be working hard this week to get things knocked off the house building checklist so we can break ground soon! In fact, tomorrow we will be meeting with our contractor to layout where we are wanting to put the house on the property. SO FUN!

Jake and I just can’t stop talking about how blessed we are. God has been so gracious to us, and this week particularity I have found myself questioning as to “why us”. Why does he shower such goodness and kindness on Jake, Leah, and Malachi…a very human couple that struggles with sin like the rest of the world. As I verbalize these thoughts in my prayers to God I am reminded time and time again about His grace. Completely unmerited, undeserved grace and pardon for sins. What a God we serve. Our challenge is to take that undeserved grace and favor and live a life that brings others to Christ.

The date of closing was December 20th. As we looked back through our memories on Facebook we realized how significant that day was in our lives! It was the day we found out that Malachi was a boy, and we were able to officially give him his name. It was also the day that our community pulled together and purchased us our handicap accessible van. As I flipped through all of these memories pre-Malachi I couldn’t help but shake my head in awe, realizing how little we knew about the path that was about to unfold before us. This picture was taken 4 years ago…I don’t have very many pregnancy pictures, as I truly wasn’t pregnant long enough to get them, so ones like these are extra special.

Little did we know that we would meet our sweet Malachi just over a month later. How blessed we are that God saved our little boy.

I hope you all have had refreshing and blessed weekends with your families. Please continue to pray with us over Malachi’s life, that miracles will continue to happen and that God will grant us the wisdom needed to care for him. We have been given such a responsibility, and my prayer is that we fight temptation to ever view this as anything other than a blessing from God.

Much love,

Jake, Leah, and Malachi

 

The beginning of the week was a blur as Jake and I worked tirelessly to get the house packed up, moved out, and cleaned. I don’t know if you have ever moved and felt this way, but after boxes and boxes of “stuff” I am beginning to think we have way too many possessions! And OH BOY the messes you find when you move heavy furniture for the first time in 7 years!

Tuesday evening we tackled the things we purposefully procrastinated on: cleaning out the fridge, packing up the closets, etc. I had spent that morning filling the camper that our friends had so wonderfully set up for us down by the river. Things were looking great..the walk-through was scheduled for the next day…and then at 10:00pm the phone rang. It was our realtor letting us know that the closing was postponed from Thursday to the following Tuesday. I was mopping the floor when the call came through and I was so frustrated at this point that I put the mop back in the bucket and went to bed.

So here we were with a mostly empty house with the exception of a mattress for us, a mattress for Malachi, a couch to change him on, a chair to feed him in, and seven outfits for each of us. Wednesday we drove back over to the camper to unload the supplies we had already put in (food, etc) and then our dear friends broke it down and took it back to their home to help us avoid paying the daily fees to keep it there. (Thank you again Mike and Tina!)

Our life had gone from go, go, go to painfully slow overnight! Jake and I have been killing time playing card games and creating to-do lists. Tuesday right before closing we will move the final remaining pieces into storage, and after closing we will load up and head to Ohio for the holidays. We will still be moving into the camper for a week or two while we wait for the rental house to open up.

Malachi’s tummy just couldn’t seem to calm down on the antibiotic. After several days of severe diarrhea we finally were able to get it changed to something less intense. He has been such a happy kid since we made the change, and I am so grateful to not go through 6 outfits a day!

On Thursday Malachi and I headed to the hospital for his annual cardiology appointment. If you are new to the blog you need to know that these are my least favorite appointments out of all of his specialists. They typically take 3-4 hours and the entire process is just frustratingly ridiculous. This was one of those days where I wanted to throw an adult temper tantrum and refuse to go, but figured with the cable and internet gone at home and nothing else to do we might as well get it over with haha.

We got there early, hoping to jump in line before the other 11:00 appointments. And then the waiting process began. I employed all of my tricks with Malachi to keep him entertained- toys, music, silliness. After 30 minutes he was over it…and so was I. At the one hour mark something so strange happened…I started to get emotional. Now just in case you don’t know me well, I usually cry twice a year (well that may be an exaggeration, but you get the picture). It takes a lot for me to crack and uncontrollably shed tears. But as I sat in that waiting room watching the employees casually talking I just felt so disrespected. We had been up early for this appointment, drove over an hour to get there, and here we were waiting to even get into a room where we would then be put on another waiting list to actually see the doctor.

Immediately I felt ashamed that something like waiting would bring me to tears. But I just couldn’t get it under control. This was the same office that forgot about us in the waiting room two visits back, so I tried to get my emotions under control and went to the desk to ask if perhaps we had been forgotten again. They went to the back to ask, and immediately they sent a nurse to come and show us to a room. I don’t include these facts for sympathy, but more to give you a glimpse into the added frustrations of the special needs world. We fight and fight for our kids, racing them from appointment to appointment and are treated very second rate by many places. It is hard to not get bitter towards these systems.

Malachi got his EKG which looked great, and finally we were seen by the cardiologist who didn’t find any new issues or concerns. Since we were over a year and a half post op he felt it was safe to discharge us from his office, which was GREAT news. We flew out of that place as fast as we could and I breathed a sigh of relief when those elevator doors shut!

A local organization was hosting a toy event for special needs children in the area, but I assumed that we wouldn’t make it in time. As we pulled out from the hospital and I looked at the clock I realized that we could make it there right before they closed! When we arrived we were greeted by friendly folks that were ready to show kindness to my son. My emotions were still a little wavering, so the kindness was overwhelming. They had tables set up all over the room, each full of switch adapted toys for children like Malachi! They told us to try out as many as we would like and choose one for Malachi to take home.

This is SO generous! A switch is a large button that is easy to push. You can plug a switch into an adapted toy and it makes the toy activate every time Malachi touches it. The cheapest switch you can find is $70, and the cheaper switch adapted toys are $150 each. It is ridiculous how much companies take advantage! Jake and I have been trying to learn how to switch adapt things ourselves and have successfully been able to do some simple toys for under $5 each.

So imagine our delight to find a room FULL of adapted toys to play with and choose from! They handed us a switch to use to try out the toys and our adventure began! Malachi immediately got so involved in the process, hitting the switch like a crazy man and listening to hear what he had just activated. Very quickly he honed in on a stuffed Mickey Mouse that sang the clubhouse song. We kept shopping and tried out a silly looking Chewbacca from Star Wars and boy did that get a smile out of him. I put the toys side by side, hooked to two switches and asked Malachi which one he wanted. He pushed the Chewbacca, then the Mickey, then the Chewbacca, then the Mickey again…He clearly couldn’t decide. It was actually heartwarming to see him filled with such joy and indecisiveness. The workers were watching this process and said “Mom, don’t make him choose, just take both home!”

WOW! They even sent home two switches so he could play with both simultaneously at home! I am not exaggerating when I tell you that Malachi was SO EXCITED about his new toys. He smiled from ear to ear as we left, holding both tightly. It is hard for some to see firsthand, but Malachi is actually a very expressive and opinionated kid. I snapped some pictures of him leaving with his two new toys.

That is the look of pure joy!

So what started off as a crummy day morphed into one full of joy. Malachi has been driving us crazy playing with his two new toys. He is a little obsessed. I took a video for you to see how the switch works, and to let you see how fast he is cognitively responding these days:

The blessings continued to hit the Carroll family throughout the week. We have been surviving on sandwiches for most of the week since we emptied the fridge, so last night we decided to use a gift card and go to Cracker Barrel for dinner.

Everywhere we go we are watched. I feel eyes on us everywhere, and often times I find myself getting embarrassed about things beyond our control. Malachi drooling, having a seizure, licking his headrest out of boredom. Last night they seated us in a busy area with plenty of space for others to get around Malachi’s wheelchair, but halfway through the meal tables were moved creating a very narrow gap for people to get around him. At least once a minute there was a pile up of servers waiting patiently to get around his chair. The scene it was creating mortified me, and I found myself apologizing to each and every waiter and customer that had to wait to get by. I could see others around me watching the scene, and I could feel my face growing hot with embarrassment yet again.

When the server came to bring us the ticket he told us that someone had already covered our meal. This is the third time this has happened this month, and it humbles us EVERY time. It literally leaves us with no words. It was an act of kindness that really hit home last night when I felt so many eyes on us. It was an unspoken word of encouragement to me that not all those eyes are looking on with judgment or disdain. It was a pat on the back from a stranger and truly warmed our hearts.

Take free toys and free meals out of the picture, and I have to tell you that Jake and I live an extremely blessed life. God has shown us so much unmerited favor and we can feel His hedge of protection on our lives. Not a night goes by that we don’t find ourselves speechless with gratitude before our God.

We look at Malachi and his shining personality and thank God for allowing him to interact with us. We thank him for the advances Malachi has made in even the last 6 months. We thank God when we see Malachi successfully eating a small bite of chocolate cake without gagging for the first time ever. We thank God when Malachi sleeps for 7 hours straight through a rain storm (PRAISE THE LORD). We thank God when we ask Malachi a question and he excitedly answers “Yeah!”. Not a day goes by that we can’t find something to be thankful for. God has been so good to us.

Colossians 3:15-17 And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.

Do we have things to complain about. Absolutely. We are using a Lowe’s moving box as a table to eat nasty McDonalds on. There are so many negative things to focus on even at this very moment! But the Bible reminds us again and again to find praiseworthy things to focus on and give thanks to God.

That is my challenge to you all this week. It is not easy to ignore the negative…believe me! But let’s make this week’s focus finding the positive in all circumstances and taking the time to thank God for them.

We love you all!

Jake, Leah, and Malachi

This week was packed full of activity…so here we go…

Monday morning Malachi and I headed to the hospital to check in for his overnight EEG. I was throwing an internal temper tantrum the whole way, completely questioning why we were doing this test in the first place. But with the new neurologist, who happens to be an epileptologist, I figured it wouldn’t hurt to chase a few rabbit trails with him. My temper tantrum got worse as we sat in the lobby of the waiting room, waiting “patiently” to be taken up to our room. Before you judge me, hear me out…this waiting area is shared by admissions like ours as well as the emergency room patients. So we hid in a corner and tried to avoid the plague ridden children filing through for emergency treatment. Malachi’s immune system is no match for their germs.

We were taken up to a room and met with his nurses. After getting settled in, we were led to the hospital basement to have the electrodes put on his head. This is a 20 minute process, and Malachi handled it surprisingly well. When we finished, we wheeled Malachi and his EEG gear back up to our hospital room. Now Malachi alone tends to turn heads, as it isn’t often you see a three year old in a wheelchair. But add 20 wires stuck to his head and a giant computer and you REALLY get some looks haha. I decided to kill some time by documenting this experience for you all, so here are some photos; please note how amazing his eye contact is in these!!

Once we were back in the room we went “live” meaning we had to be on camera for the next 23 hours. The area that the camera could capture had his hospital bed and a chair in the frame. but that was about it. I was given a button to push when he had a seizure and it would chart it on the computer. The computer screen was also turned facing us so I was able to watch his brain waves. It was pretty mesmerizing!

The cafeteria staff brought in a tray, and I was oddly excited as I was starving and planned to snack off Malachi’s tray! But when I opened the cover it revealed a completely pureed meal- pureed chicken in fact that had been placed into an oval mold in an attempt to make it look normal. I did a little gagging then decided to let Malachi try some. He LOVED it.

Malachi had four seizures while we were there, and each of them was a different level of intensity. Truthfully, it was the best case scenario as we were able to see all of his types in one sitting. I even flagged some of his staring spells to see if he thought they were absence seizures. It was a LONG and uncomfortable evening but we made it through!

The next morning the neurologist came by to get an update on how the evening went. He scrolled through the system, looking in particular at the episodes I flagged and said: “Yep, that was a seizure.” Hmmm….not exactly the information I was hoping to glean from the experience. Of course it was a seizure! You asked me to push the button for all seizures! My temper tantrum started to rekindle.

Here is a visual that will show you what Malachi’s brain does during an episode:

He said that it looked as though the seizures were originating from the right side of Malachi’s brain, which is in fact the more damaged side. He agreed with everything the Vanderbilt team had noted last March. So I asked him where we should go from here.

He brought up three solutions to help minimize Malachi’s seizures:

1. Vagus Nerve Stimulator- a device like a pacemaker that is implanted in Malachi’s chest. It is programmed to stimulate the vagus nerve in his neck and stop an active seizure when you wave a magnet over it.
2. Brain surgery- they would go in and remove portions of his brain that are damaged.
3. Increasing his medications

At this point I had a very real conversation with the neurologist. Malachi is having 4-6 seizures per day, depending on his discomfort level (as discomfort is his primary trigger). So if we go on a road trip, and Malachi has to burp but I cannot get to him, he may have 6 seizures in a row. But I know the cause and I know how to make them stop…simply pull over and burp him. If he is constipated he may have 4 seizures in an hour. I can adminsiter a suppository and they stop.

Each of his seizures typically lasts less than 10 seconds, although sometimes he has larger ones that can go 30-45 seconds. In epilepsy land, this is a relatively short seizure. So I asked the neurologist again if the seizures were “damaging” Malachi more, or if they were simply a symptom of a problem we know exists from birth. He said that they were not continuing to damage his brain, but they could be preventing him from living a typical life and developing typically. Like his seizures could be getting in the way of his therapy progress, etc.

I took a deep breath and reminded him that we HAVE to look at Malachi’s history. He was born at 24 weeks…dead. Literally dead. 15 minutes of CPR brought him back to life but his brain suffered oxygen deprivation and hemorrhaged leading to the highest grade of brain bleed on BOTH sides of his brain. He developed hydrocephalus and has to have a device in his brain for the rest of his life. ON TOP OF ALL THAT TRAUMA, at 8 months old Malachi developed Infantile Spasms, which on a typical kid holds an 80% rate for severe mental retardation. At this point I looked at the doctor and said, frankly we are THRILLED that Malachi is only having 4 seizures per day! His story should be much more complicated, but we have been blessed.

And as far as “developing typically”, we have to be realists. Jake and I are very aware that Malachi will not develop typically. Malachi has his very own highway in life, and on that road are no mile markers or signs telling us how far away he is from normal. Malachi is Malachi, and he is exactly who he is meant to be. Do we wish we could take away his pain and struggles in life, absolutely. But do we mourn his non-typical development, not at all.  I explained to the doctor that as his parents, our goal for Malachi is to live a life filled with joy and happiness. Increasing his medications in such a way that he is not able to function with joy is something we are cautious about. Brain surgeries and device implants are things we are not going to consider until the joy is taken from our son and we are left with no other options. Malachi is such a wonderful, bright, and happy kid; if we can have such a bubbly boy that just happens to have 4 short seizures a day, then we count ourselves very blessed. If we have to chase a seizure free day at the expense of his clarity and well being in all other areas, we may just have to accept the seizures for now.

I reminded the doctor that although we would love to see Malachi achieve milestones, our life with him is not driven by them. Would we love to see Malachi read and write? Absolutely, but if he doesn’t than that is fine too. We have to make decisions based on making his life as lovely as we can. At this point in the conversation, the man just started smiling awkwardly…clearly not sure what to say. And if you know me personally you will know that I thrive off of awkward moments, so in true Leah fashion I asked him why he was smiling. He didn’t have an answer and continued to awkward smile…even when he walked out the door.

So here was the takeaway from the 24 hour stay. Malachi is in fact having seizures (SHOCKING). His brain wave at its normal rate is chaotic with lots of spikes. We may try a small increase in medications in a few months, but I have a few other routes I personally want to explore first. And another shocker…the new neurologist decided to transfer us back to the nurse practitioner…haha! We will follow up with her in 6 weeks.

As we left the hospital both Malachi and I looked like train wrecks. He was crying every time I tried to pick the glue out of his hair, so I gave up and just took him on home where I could put him in a tub. But his crazy hair was pretty awesome.

The rest of the week was busy as could be with appointments. We met with his GI doc for the first time in 9 months to check on his growth. Malachi is nearly three feet tall and weighs 35 pounds. I explained his new diet on almond milk (which he still loves by the way) and our attempts to increase his table foods as much as possible. Doc seemed happy with the progress and signed off on him for another 6 months. Woohoo!

Thursday rolled around and Malachi seemed a little off. I noticed him sneezing frequently, and I was not feeling too well either. Sickness hit me first, and then Malachi by Friday morning…stinking hospital germs. It seemed like a head cold, but he was doing his crazy sickness coughs so I decided to run him to the pediatrician during their walk-in hours just in case. Sure enough he tested positive for strep throat and an eye infection (the two oddly tend to go hand in hand with Malachi). She suspected it may have been a false positive but thought we should start a round of antibiotics anyway.

If you are new to the blog, Malachi is a terrible terrible terrible antibiotic kid. Without going into took much detail, he and I are going through about 6 outfits and two sets of sheets daily. It is a dizzying nightmare with lots of intestinal issues. Sometimes his tummy calms back down by day 5, so we are crossing our fingers until then!

This week is a huge week….we close on the house on Thursday afternoon! A very dear friend contacted me this week and generously offered their camper for us to live in while we are in between homes. This is a top of the line, luxurious camper with a kitchen, heat, bathroom, two tvs, and plenty of room for the three of us! We have reserved a spot by the river at a local campground and are ready for this next big adventure in our lives! We have spent the week loading up the basement of the house we will be renting, and our goal is to have the cabin emptied by Tuesday evening. Things are about to get crazy! Here are some pictures of the inside of our new temporary home.

Malachi and I will be traveling up to Ohio for a bit to break up the three weeks as vagabonds, and Jake will be coming up to join us when he gets done teaching. We are hoping to be able to get into the rental house by January 1st!

Whenever I find myself back in the hospital setting, that same sick feeling comes over me. Malachi and I went to visit a friend in the hospital two weeks ago, and I got extremely dizzy and felt like I was going to faint. It is such a psychological experience for me, and I am embarrassed that memories alone have such a grip on me. It is ridiculous.

But when I take Malachi into these settings for Malachi things, I have something to focus my nerves on. This recent visit went surprisingly well with very little anxiety. I was thinking back on the previous year and realized that it had been a whole 6 months from our last hospitalization! This truly is amazing! God has been so good to our family. He has blessed us with a truly heartwarming child that finds happiness in the little things we tend to ignore. Like the sound packing tape makes when you use it. Or the poof noise when a two liter is opened. Malachi’s world has changed our priorities in life….our standards for success. He has taught us about the simple joys all around us.

We always say this, but Malachi is only flawed by man’s standards. He is PERFECT in the eyes of God. He is exactly the way that God intends him to be, and when we realize that we are able to let go of unmet expectations and simply stand in awe that God gave us such a cool kid. As much as I would love to take credit for our peace concerning Malachi, that would be sinful…our contentedness is a gift from God. And we are so thankful for the lens he has placed over our eyes, allowing us to see the beauty in the chaos.

I hope that you too will be able to see beauty and have peace concerning your “flawed” situations. Things that God has placed in your life that are out of your realm of fixing. Things that are intended to remain “broken” by man’s standards, because God has something else in the situation he wants you to see or learn. I hope that His peace overwhelms you as it has for Jake and I.

Please remember us this week as we take a step of faith and turn our lives upside down. Pray for good weather as we camp by the river and pray that Malachi’s system settles before I am without a washer and a dryer haha.

We love you all,

Jake, Leah, and Malachi

 

This week took a turn we never expected when an EF-3 tornado passed through our small town. Neither Jake or I had watched the news or had any indication something was even potentially coming our way. We both woke up around 2am to loud winds that seemed to shake the house and loud rain on our metal roof. I went to the kitchen to get my phone and saw that we were under a tornado warning and to take shelter. Luckily the internet on our phones was still working so we were able to listen to live updates about the storm.

The three of us and Boomer dog headed to the bathroom to hunker down and I got such a sick feeling in my stomach when I heard it was headed for our town. We waited for about 30 minutes and listened; it went from tumultuous outside to completely quiet.

The power had gone out, but the internet was still working on my phone so I desperately searched for updates. It seemed that the storm had passed, but I read that a tornado had touched down just 5 miles from our cabin. As I continued to look for updates, a friend posted that the storm had demolished two of our close friends homes but that everyone had survived. I felt sick to my stomach again and ran to tell Jake the news.

This family is so very near and dear to us. They are wonderful Christian people and each of their four boys has been in our youth group. In fact, the picture I posted last week of a man holding Malachi was one of the homeowners, Sam. Every Sunday for close to 3 years, they have brought us Tupperwares full of food left over from their Sunday lunch. It is enough to feed us for several days! Last week they had invited us over for lunch after church…little did we know that their homes would not be standing just days later!

This family built three houses all on the same chunk of land. The elderly parents live in the top house, and the two others live side by side in the front of the property. Both of those homes were destroyed completely and the parent’s home was damaged but salvageable.

Jake’s school was cancelled for the remainder of the week as they used the facilities to start a Red Cross shelter for the victims. We learned that two people that live in front of our friends had died on impact. It truthfully looked like a war zone, and first responders immediately jumped into action. By sunrise the skies opened up and started to pour down rain, flooding the roofless houses and subsequently destroying the things that were left inside. As our friends scrambled to get a few things out, the drywall began caving in on them.

Jake and I continued to pray over the situation but truly felt helpless. We had appointments in Cleveland and the power was out at the house, so we packed up and headed out. We were sitting at lunch when a text came through from another church member asking about trailers and a place to store furniture. She said the families wanted to try and salvage as much as they could as quickly as possible.

Jake and I have been on the receiving end of sooo many blessings over the last several years on our journey with Malachi. I can’t even count how many times one of those teenage sons snuck over to our house and mowed our lawn for us when we couldn’t. We looked at each other and knew that this was a God-given opportunity to pay it forward! It just so happened that I had phone numbers from all climate control storage units and U-Haul rental trucks saved in my phone from our upcoming move. Within 45 minutes Jake was able to get a 26 foot U-Haul into their driveway and we had arranged two large units to bring the items to. There was a crew from the church ready to load things, and thankfully most of the possessions in both houses were able to be saved.

We spent Wednesday and Thursday pitching in where we could. Malachi was such a trooper, tagging along for Wal-Mart runs, laundry pick ups, and meal deliveries. I am so happy to report that the families are in good spirits and set up in some rental cabins down the road. They attended church this morning with smiles on their faces, in spite of losing their homes. And you know what…at 2:00 that weekly text came through: “Are you guys home? We want to drop off some food.” We obviously objected and they said the people that had brought them lunch knew they brought some to us each week and packed meals specifically for us. So much kindness even in the midst of chaos.

I always tell you how much I love the community we live in, and this week re-affirmed that. As soon as the sun came up each day, every able bodied man with a chainsaw was out working on clearing roads and affected homes. The community started donation centers, churches cooked meals for volunteers and families, and things simply got done. It is so inspiring to see a community band together.

Aside from the chaos of the storm, Malachi has had a really great week. On Monday he rode his horse all by himself, and his head control was the best we have seen. I snapped a picture for you:

We decided to cut back on Malachi’s calories this week and switched him to almond milk instead of his nutritional pediatric soy drink. 8 ounces of it was 240 calories. 8 ounces of almond milk is only 60 calories! BIG difference so we were curious to see how it would settle with him. He loves the change and is taking his bottles very well! He is hungry more frequently, so we have to figure out a way to keep him full. We have tried adding some real food into his schedule and we are absolutely blown away by his progress this week alone…he has eaten macaroni and cheese, ramen noodles, Quaker oatmeal, sweet potatoes, loaded potato soup, and other snacks. He loves trying new things!

The added bonus from the diet change is that his sleeping has improved a bit! He is still waking three times a night, but will fall asleep within 45 minutes each time as opposed to 2 hours. He is also burping much easier and seems so much happier. He is not gagging as much, so overall lots of improvements! We haven’t noticed a change in his seizures.

Tomorrow is his overnight EEG. The neurologist called and said that he did think the test was necessary to get a baseline image, especially since he has started new medications since his last EEG. I am dreading it, and haven’t even started to pack (we leave at 8am tomorrow), but we will just get it over with.

Our house closing has been moved to December 15th…just a week and half away! YIKES! In our “free time” we have been packing up the house and thinking through our three weeks as homeless vagabonds haha. If you know anyone in Polk county willing to host some late-night partying guests for a few nights, let me know! We were able to meet with the contractor (our brother in law) this week and set the plans for the new house. We also had some friends from church come and bushhog the property- this was particularly exciting because I had not yet been able to walk the property due to it being overgrown. It was an overcast day, but here are a few pictures of the land we will be building on:

We are blessed.

Malachi has been so silly this week. This morning during Sunday School he was extra pumped up, clinging to every word the teacher said. It took me a little while to figure out why but then I realized that the lesson was on Daniel. Malachi is slightly obsessed with a TV show called “Daniel Tiger” and he was just convinced the teacher was filling us all in on how awesome he was haha.

Here is a picture of Malachi in his Christmas sweater. I bought it on clearance last year hoping that it would fit him this year. It still is a little big but it works!

This week I have been processing so much spiritually. There is so much sadness in the state of Tennessee, from wildfires in Gatlinburg to our local tragedy. So many lives have been lost, and family members impacted greatly. My heart has been hurting.

The night before the tornadoes I was preparing my lesson for the youth. We were looking at a passage in 1 Peter 2 that talked about Christ being the cornerstone. I had that topic on my heart all week and knew the Lord wanted me to go that direction with the kids. And as I studied, a verse kept sticking out to me:

^{5 “}you also, as living stones, are being built up as a spiritual house for a holy priesthood, to offer up spiritual sacrifices acceptable to God through Jesus Christ.”

I started to think about the concept of us being “living stones”. The more I processed this, the more I fell in love with the analogy of brothers and sisters in Christ building upon each other, and our cornerstone being Jesus Christ. I went to bed that night thinking about the challenge that it presents for us to remain “living” in the sense that we are active in our role in the wall. Not stagnate, as it is so easy to be. We must work together as a body of believers.

This week I got to see firsthand how living stones working together is a beautiful thing. I am still humbled by the simple fact that God impressed such a powerful passage on me the night before tragedy would strike in our community. In the eye of the storm you still find God. He is there. He remains in control, regardless of your circumstance.

There is a song that recently came out that has been playing in my mind and heart all week long. Here is a link if you need a pick me up:

Oh goodness how I would love to write so much more, but Jake is graciously holding Malachi to allow me to type and he looks exhausted! Thank you for checking in on us this week. Say a little prayer for Malachi tomorrow as we tackle his EEG. The worst part is getting the electrode glue out of his hair afterwards, and with his sensitive skin this time will be no exception.

God bless,

Jake, Leah, and Malachi