Malachi has had SUCH a great week with lots of exciting adventures! Before we dig into them, I want to give you a few medical updates.

As you already know, Malachi experienced severe brain damage during the first few weeks of his life. His brain hemorrhaged on both sides after his traumatic (and early) birth and each scan in the subsequent weeks showed more and more white matter which essentially means pockets of his brain were dying off/disappearing. His brain damage is so global (meaning all over) that there is no predicting the future in regards to his cognitive development.

His brain damage has led to multiple issues: hydrocephalus that requires a shunt to move fluid out of his brain, cerebral palsy which in Malachi’s case causes some muscles to be too tight and others to be too loose, corticol visual impairment making him legally blind, even motility issues as his brain struggles to communicate to his GI muscles to push excrement out. Malachi’s brain is essentially the primary cause of many of his struggles. His brain is constantly firing in abnormal spikes making sleep a struggle, and results in several seizures per day.

He regularly sees a neurosurgeon as well as multiple neurologists (including an epileptologist) as we continually try to find ways to help his brain calm down. We have tried multiple medications, some effective and some not so much, but each time a new medication is added it can be very dangerous to remove it. Often times it takes several months to slowly wean him off of a seizure medication, for fear that the sudden change will spark more seizures. We also have to be very aware of potential side effects, which can lead to more specialists and bigger health issues.

I am sure you have heard about the success some epileptic children are having with medical marijuana. Unfortunately we live in a state that has not legalized it yet, and we don’t feel called to uproot and leave in pursuit of that treatment quite yet.

A few months ago I read about Cannabidiol (CBD) Hemp Oil which is actually advertised as a dietary supplement. It is legal in all 50 states and can be ordered online and shipped to your door. As I researched it, I read about the amazing things it can help with…seizures, sleep habits, tight muscles, speech, etc. CBD is made from oils taken from the hemp plant, which only contain trace amounts of THC (the “high” you would get from marijuana plants). So essentially it carries the medicinal properties of marijuana but is non-psychoactive.

I ordered a bottle back in November with the intention of starting it with Malachi, but we were working through some diet changes and I wanted to wait until we had zero other variables in the equation. The bottle traveled with us from the cabin to Ohio, and accidentally got left behind! It has to be refrigerated, so shipping it wasn’t really an option. We were able to get someone to bring it down to us on a recent trip and I was able to introduce it about two weeks ago.

The recommended dose for Malachi is 1 dropper full twice a day, but I didn’t feel that we should start with that much so we are giving him 1/4 a dropper full one time a day. This is 0.3mls (a tiny dose…just a few drops).

I have been keeping a log to track the changes we see in Malachi, and I have to tell you that the results are impressive! The only catch is that the CBD can mess with the absorption of his seizure medications (which can be dangerous), so there are rules about how close to medication time he can take it, and it is highly recommended that he have regular blood draws to check his levels. So here we go…

For the first few days, I gave Malachi a small dose in the middle of the night. We started noticing his muscles relaxing and his hands extremely loose and open, which was wonderful! His seizure frequency didn’t change, but the severity lessened GREATLY. They were shorter and did not seem to overtake him as much. But he was requiring a big nap mid morning which was interfering with therapies.

After a few days I decided to try changing the med time to see if that would help. I gave it to him around dinnertime and that night Malachi slept for 8 hours straight. And yes, I mean straight! This AMAZED me but I vowed to not get too excited until it could be repeated. That day Malachi was thinking clearly, interacting much more, and even mimicking others around him. His hands were open and functional instead of balled up like a fist, and his seizures were still calmer than pre-CBD.

So the next night we tried again…he slept 7.5 hours STRAIGHT! He also takes a 30-45 minute nap on days he takes CBD. The next night I didn’t make it back from church in time to get the CBD in him and absorbed before nightly medications were due so we took the night off. He went to bed at 10:30pm and woke up at 2am for the day. We were back to the same old, and he (and I) was exhausted all day.

Overall we are seeing some great changes in him and are encouraged enough to continue this course.

Friday we were scheduled to meet with Malachi’s neurologist but she was unable to make the appointment. So instead we met with his epileptologist who was able to discuss more of the overnight EEG results with us. He essentially confirmed what we already knew: that Malachi has a constant chaotic brain wave pattern, and most of his seizures are sparking from the right side of his brain. He also re-affirmed that he is having both tonic and clonic seizures daily, and LOTS of “sparks” in between the big episodes.

He has given us a new medication to research that could possibly help control the seizures, but adding a new one would require weaning an old one. Adding new seizure medications and taking others away can be a dangerous game for a child with epilepsy and requires several weeks to safely do. Jake and I are still doing some research, and would like to give the CBD a little more trial time before we make any other drastic changes.

We also tried to reintroduce milk based products into Malachi’s diet by giving him 6 ounces of whole milk yogurt. He ate it like a champ, but within the hour he had a massive seizure and vomited for the first time in weeks. For 24 hours he continued to have BIG seizures, including two where he stopped breathing for a bit. We call these the “scary/stop breathing seizures” and hate them with a passion. They terrify all of us including Malachi and take so much energy out of his little body. So the lactose intolerance issue is still very much there. I think it has more to do with the excess mucus created.

Okay, so enough medical talk! Jake had a birthday this week and thought it would be fun to take Friday off to attend the appointment with us. Afterwards we headed to the Chattanooga aquarium to take Malachi on a big adventure. We have never considered the aquarium before as Malachi’s vision has been so poor. Since Malachi’s vision issues come from his brain and not his eyes, it is something that can improve over time if the brain “re-wires” itself. Lately we have noticed some huge improvements with his sight and thought we would give it a try.

And oh were we so pleasantly surprised!! Apparently turtles love wheelchairs! Turtles of all shapes and sizes flocked to Malachi and they had just enough contrast that Malachi was able to track them! I was so overjoyed I almost broke down into tears as I watched him study the turtles and fish. He would lean up in his wheelchair to tilt his head down to them to get a better look. He was so excited, fascinated, and intrigued!

As you can see in that last picture the fish alarmed him a bit. The staff was excellent and allowed him to touch a snake, sea urchin, conch/snail, and a crab. His reaction to each of these was so different, and it was so fun simply watching him learn about new things.

We even went into the butterfly exhibit with him, and several of the butterflies flew close to his face. Oddly enough, these close encounters seemed to scare him a bit, especially when one landed on his arm, just within his line of vision. I managed to catch it on camera as he jerked his arm away from the “winged monster”! He was so angry, it was comical. 

His other favorite exhibit was the jellyfish, as they provided lots of contrast with their bright bodies.

It was such a successful visit and it brought me an overwhelming amount of joy and encouragement. I saw so much of my little almost-four-year-old boy in that visit, and he soaked in every detail that he could see and hear. It was just the boost I needed to remind me of how much he desires to learn and experience new things.

We are continuing to work on his alphabet letters and sounds. We try to go through ten a day, saying each letter and sound and asking Malachi to repeat the sound. He tries to hard, and each time we jump around and rejoice like he just solved a college level math problem. He loves the game and we love that he is learning.

His memory continues to impress us. When we moved we lost access to a few of his favorite channels and shows. Last week I found an episode of one of his former favorite shows and as soon as he heard the voices he was overjoyed, giggling and beaming. He definitely has an opinion about things. We also had a 3 year old church friend come by for a short visit this week; I told him about 30 minutes before she arrived that his buddy Meredith was on her way, and he listened in anticipation with a smile on his face until she walked through the door. We are seeing so much of his personality these days!

I read a quote this week and found myself saying “AMEN” and thought I would share it with you:

So often  I hear the phrase “God gives special children to special parents” as the speaker nods sympathetically and pats me on the back with silent support. But the truth is, God equips each of us for the tasks he has chosen to give us. Four years ago I was not equipped for a life with Malachi. But in the last four years I have watched God mold Jake and I into caregivers for a precious gift. We don’t deserve an extra pat on the back, nor do we desire to be seen as superhero parents for stepping up and raising a medically challenging child.

I just think it is important to remind you that God never gives us tasks without providing us with the proper tools needed to succeed. He may not give you the whole tool box all at once, before the assignment is given. He may in fact give the tools to you one by one, only when and if they are needed. But trust God to equip and accept the challenges, both good and bad, knowing that that challenge has been hand picked exactly for you for a reason.

I literally just went cross eyed so I think it is time to wrap this entry up. I hope that as you read about Malachi’s improvements and weekly successes you will be reminded of the power of our God. Please continue to EXPECT miracles for Malachi, and please continue to thank the Lord with us when we see those miracles come to pass.

Much love,

Jake, Leah, and Malachi

 

Oh sweet Malachi. What a happy boy he has been lately. He can make a game out of pretty much anything and loves to make us laugh. This week he has started to actively hug when I ask him to. He can’t wrap his arms around me well, but he will squeeze them tight allowing me to feel some pressure…he is trying so hard. I think back to the list of things I had come to terms with that he might never do, and hugs was on the list. How refreshing it is to feel those arms squeeze me.

Malachi is an amazingly quick learner, and he is so eager to learn new things. He loves to listen as I teach him about new things and you can see his brain working hard trying to decode it all. This week we have been working on letters and their sounds as well as numbers.

My newest mission is finding a way for him to communicate “yes” without a device. He can communicate “no” by pursing his lips, but we don’t have a motion for yes. We started tonight by recording both words into his two button switch and asking him questions. “Would you like mommy to tickle your tummy?” and then activating the word he wants. If we can connect the word with the action (or lack of action) then maybe we can even get him to the point where he can verbally say it.

Malachi’s little heart is so tender and full of love. I can’t even count the number of times in one day that he makes my heart flutter with his sweet looks or his beautiful countenance. His eyesight continues to improve and he now will actively search for me or his daddy around the room. When he has found me his face will burst into the sweetest smile you have ever seen. When we sit together I have been asking for him to look me in the eye, and each time he does I feel like we connect on such a deep level, if even for a second. Malachi made eye contact with Jake this week for the first time and it was such a tender moment.

Malachi has always been a giggly boy, but lately the whole world is his entertainment. No matter what we do, he will think something is funny (usually a noise that sounds like a toot) and laugh with his whole body. Once he gets the giggles he can’t stop and his eyes sparkle with a unique clarity in these moments. There is a hard working brain in that little head of his.

An alarming amount of children like Malachi from our support group have passed away in the last two weeks. Most of them contracted an illness and it escalated into pneumonia. Several others have been having severe seizures that require ambulance rides and hospital stays. As I have read these horrible updates my mind has obviously wandered to the what-ifs.

I started imagining what life would be like now if he hadn’t survived the night he was born. We are so blessed that he survived. And getting to know him has made that blessing grow and grow. I know that God was in the room that night. I know that Malachi was surrounded by heavenly hosts, comforting his spirit with music while his earthly body struggled to come back to life.

Had he not survived, Jake and I would have grieved over the loss of a child…a child we never got the chance to know. But he lived. And our lives, both spiritual and daily, are so enriched with our unique blessing. God has given Malachi such a countenance. When I look at him I can’t help but see a reflection of a glimpse of heavenly things. I see in his eyes a world that I have not yet seen…those eyes have seen God’s glory.

This morning Malachi sung his little heart out at church as they played “10,000 reasons”. The line goes: “I’ll worship his holy name, I’ll worship his holy name.” His little brain takes time to process and he has to work hard to muster up the strength to speak a word. But by golly, that boy SHOUTED “name” on cue each time it arrived in the song. It brought tears to my eyes.

Malachi has had a great week. He worked so hard at horse therapy so I tippy-toed into the arena to catch some on film; if he hears me he stops working to listen so I have to be sneaky. When he wants the horse to go he has to make a motion with his hand and say “walk”. Here is a clip:

This week was an exciting one as we received the green light to start breaking ground on the property. We are so excited about the possibilities the new house will bring for Malachi. One of the things we will be prepping the home for us a track system to help with transporting Malachi from his bed to the bathroom changing table and roll in shower. These track systems require extra supports in the ceilings and door frames, as well as high outlets for the chargers. Since we are starting from scratch we will be able to include all these things so that when the time comes we will simply just need to order the track. We will also be able to plan lighting fixtures around a future system. Here is a visual of what I am talking about:

Jake and I have been trying to get ourselves more comfortable with allowing Malachi to go to the church nursery (but only when other kids aren’t present). A wonderful woman at our church has taken the challenge of Malachi head on and has been taking him in with her on Wednesday and Sunday nights. She sent me a few videos this week from their hour together and I thought you might like to see his silliness with her; ignore the creepy doll in the background haha. Also note how hard Malachi is working to imitate sounds. This has been his new project this week and I am so proud of how well he can mimic!

More and more I have been thinking about school for Malachi. If I could eliminate all the germs he would come into contact with, I would feel so much more comfortable sending him! But it is something we are going to look into at the start of next school year. It may mean having to explore some medical routes we have been avoiding, like a g-tube, so he can be vented if he has excess gas at school sparking seizures. We are really going to have to put a lot of thought and research into the whole idea before we commit. The last thing we want to do is make decisions hastily and not out of absolute necessity.

So overall it has been a fun and relatively easy week with Malachi. The weather here has been absolutely wonderful with temps reaching into the high 60s. Friday we went over to a friends house for a playdate with one of Malachi’s buddies and we had a nice picnic outside. I stuck my phone out the window on the drive home from the play date so I could capture the beauty of that January day…simply breathtaking.

Jake’s birthday is this week so he is going to take a day off and we are going to the aquarium! We have never tried taking Malachi there, as his eyesight has never been good enough but I think he will enjoy the colors and movement.

Speaking of birthdays, Malachi’s is creeping up on us! I still can’t believe that it has been 4 years!!

I read this verse this week and can’t help but dwell on the words “perfect peace”.

Isaiah 26:3-4    “You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal.”

In our crazy life, peace is something we crave. When we have it, we recognize it and make an effort to not take it for granted. We are always on alert, knowing that the peace could be gone in an instant with one medical emergency. But as this verse reminds me, perfect peace doesn’t come from a lack of stressful situations, but rather it comes from steadfast minds that trust in God- regardless of how crazy life’s moments are. When peace is perfect- meaning it comes from God- it settles on your heart through your worst tragedies and your greatest successes. It is an ever present reminder that God always wins.

My prayer is that each of you get to experience this perfect peace…because with it comes a relationship with God. It comes when we recognize God as our father and allow Him to protect our hearts with his peace.

May God bless you,

Jake, Leah, and Malachi

Alright y’all- it snowed!! As many of you know, we are originally from Ohio where snow was common and intense. Down here in the south, snow is not as common but definitely still intense. On the rare occasion that it does aggressively snow (as in this weekend) things get a little crazy. Jake’s school was cancelled Friday and made the call on Saturday to go ahead and cancel for Monday as well. In fact, most schools in our area are closed tomorrow even though the high is going to be around 40 and most of the snow has already melted at the base of the mountain.

Now as silly as this may sound to you northerners, this is actually the right call for our area. The roads aren’t treated the same as they are in the north and there are so many elevations represented in our county alone that many of the roads on the mountain are pure ice. So Jake and I will just continue to enjoy this surprise 4 day weekend and relax.

Here is a photo from the back porch of our rental house. The mountain is just a stone’s throw away, and the house is in the middle of cow pastures. It has been fun watching the young cows play with one another while I wash the dishes- a task that makes me feel like a true pioneer woman haha. It has been awhile since we have not had the luxury of a dishwasher. But we are enjoying the simplicity of the home and the fact that it meets all of our needs.

All of the necessary boxes have been unpacked and I can’t even describe to you how nice it feels to be reunited with our “stuff”. Malachi’s eyes were having a hard time with all of the natural light the large windows allow in so we had to cover some of the sunnier ones with curtains. We also learned the hard way to put some blackout curtains in the bedrooms to help him stay asleep. His sleep has actually improved every night that we have been here and he even slept a 7 hour stretch a few nights ago!

The layout is working wonderfully with his equipment and chairs. We have also been able to start a routine with him eating solids again, which he loves. He has been eating like a monster so we are assuming that he is going through a growth spurt. One of the highlights of my week was going to the grocery store! We have all of our pots, pans, and dishes back and truthfully were getting sick of eating out so often. It feels so good to cook healthy meals again.

Here is a little Malachi giggle for you to enjoy:

Malachi took a tumble out of one of his low chairs this week and landed on his head. Jake witnessed it happen and was obviously alarmed and ran to him saying “MALACHI!” in a loud, scared voice. By the time I made it into the room, Malachi was crying so hard he wasn’t making a sound (you know that sheer panic cry that has a bis gasp for air at the end). I took him from the panicky Jake and started to check his arms, legs, ribs, shunt, head and comfort him at the same time. We quickly learned that the thing that was hurt the worst during the incident was Malachi’s feelings. When Jake yelled Malachi’s name, he thought his daddy was scolding him for falling and it definitely hurt his little heart. For about ten minutes after the incident, anytime Jake would come near him Malachi would frown and start crying saying “mooooooooooommmmmm”. It was pitiful yet wonderful at the same time. While we don’t want Malachi to be injured or in pain, it is so nice to see him react like a typical child. After he calmed down he started liking his daddy again, much to Jake’s delight. This chair was the culprit:

Malachi started back with appointments this week…horse therapy, occupational therapy, physical therapy, even a dentist appointment (no cavities on his one “accountability tooth” woohoo). Dental hygiene is much less stressful when you only have one real tooth left to worry about haha. Malachi seemed to enjoy being back in the routine of things. This week will take it up a notch as we will also start his music classes and chiropractic appointments.

Malachi is just THRILLED to be reunited with his toys. He has been playing non-stop and doesn’t seem to get bored at all with them. In fact, his ability to play independently has improved so much. He impressed me all week with his independent play so I took a few videos to show you what he can do all by himself.

Here he is in his stander playing with a hippo toy. It is a little dark, but Malachi has to push the tail to spin the letters:

This video is even more fascinating for a few reasons. This is his ABC wheel. It sings part of the ABC song then stops. In order to hear more you have to spin it again. As you can see, Malachi has figured it out. Also, the giant moose was an impulse buy this week at Cracker Barrel. I had some money left on a gift card and thought that Malachi would like to feel it’s soft fur since he doesn’t have Boomer to pet. Malachi is obsessed with this moose. He has been rubbing his face on it, petting it, and being so silly with it! It has been cracking us up.

One of my biggest fears with Malachi is him passing away due to his inability to get out of dangerous situations. I have read story after story where children with CP have suffocated due to their winter coat riding up over their mouth/nose or accidentally brushing up against a blanket in the bed. I read one this week about a child very similar to Malachi who got overlooked on the school bus and was left on there for the day. He passed away. Every time I read these articles I get sick to my stomach. I have been trying to teach Malachi how to get out of potentially life threatening situations, and recently he has decided he likes to fling his head into soft things. Talk about a heart attack for mom and dad! We have been trying hard to not panic and fix his body, but instead make him work it out as you can see in the video. He is improving, but it still causes us to stop breathing every time we witness it.

In just under one month, Malachi will be turning 4. This is mind blowing to me. So much has taken place in the last four years. Never did I imagine that our lives would look this way and that our path would be this crooked.

But I look at beautiful Malachi. And I look at the way our situation has strengthened Jake into an even stronger, solid man of God. And I look at the way God has taken my pride and re-molded me into a vulnerable person who realizes the necessity in leaning on Christ. I see firsthand how life tends to get messy and out of your reach. I have seen God work through the actions of brothers and sisters in Christ. I have looked into the eyes of friends and strangers and seen the truth behind Christ’s words “It is more blessed to give than to receive.” I have seen promises from God’s word come alive right in front of me.

What a testimony the Carroll family has been given. What a story we have to tell. And what an opportunity we have to explain to others the power and providence of God. Sometimes life throws some crooked paths your way. But it is in those crooks in the road that we encounter God in a way we couldn’t imagine. I hope that when those moments come into your life that you will be able to see them as opportunities to re-develop a deeper relationship with a mighty God.

Be prepared for some PTSD emotions over the next few posts. I tried really hard to stifle it tonight, but I have already found myself getting pre-occupied with Malachi’s birthday and the memories surrounding it.

God bless,

Jake, Leah, and Malachi

 

 

While the camper life has been an adventure filled one, Jake and I are very happy to report that this afternoon we were able to move into our rental home! Tomorrow we will finish moving in the necessary things to get us through the next 6 months while we build. We are both breathing a big sigh of relief- there is just something comforting knowing you are in an environment where you have anything you may need for any situation.

Here is a snapshot of the camper we were blessed to borrow. It was such a nice one!

 

Tonight is far from over for the Carroll clan as we will be heading to the church for the annual youth lock-in! Yes…we are crazy, and well aware of it. The plan is to have all three of us there until around 2am at which point Jake will take Malachi on home and I will load up the kids for an iHop run. We figure that I am more used to the sleep deprivation so it would be the safest option in regards to driving a bunch of rowdy teenagers.

Tomorrow we will get back into the swing of life. Malachi’s appointments start back up and Jake will head back to work on Wednesday. The break has been a busy one with lots of transitioning so we are welcoming the comfort of routine back into our lives. And having an address! Hello again amazon.com!

Here is a sweet picture of Malachi playing at his great grandmother’s house over Christmas break.

The beginning of this week was focused on our new home! Meetings with the bank and contractors kept us pretty busy and we were able to whittle our to-do list down significantly. We have staked off the area that the house will sit on the new property and marked which trees will come down. The entire lot is covered in very tall pine trees, and unfortunately pines have shallow roots. While we would love to leave all the trees, it is not worth potentially causing damage to the house in case of inclement weather. We are now waiting on the city to come and do a soil test to tell us where the septic will need to go.

We also had a fun visit with a local family that has two adult daughters with CP. They have custom built a home that will grow with the girls and it was so nice to get to see firsthand some of the ideas they thought of. It has definitely kept our wheels turning in regards to the new build.

Jake and I spent the non-errand running time at the camper playing games until bedtime. We used to play games ALL the time as a young married couple, and when Mr. Malachi came along we obviously curtailed a bit. We are both extremely competitive and it was nice to have a little flashback to a less complicated life. And Malachi loved helping dad with his dominoes.

On one of the slower days we went to the movies with Malachi. We watched a silly kids movie called “Sing” and boy did he get into it. He laughed and squealed with joy through most of it. Like a typical three year old, he lost interest after an hour but still behaved enough for us to finish the film.

Malachi has done great with the chaos and was literally giddy when we got into the camper. He thought it was hilarious that we were all within an arms reach of one another at all times. He has such a good nature and sweet spirit about him. We dragged his special mattress out of storage and set up a mini-Malachi room on the dining room table.

We were able to visit with Boomer dog this week, and he is as happy as can be. He is getting spoiled rotten by my brother and sister-in-law and clearly loving the mini-vacation. It has been hard to not have him around. Malachi was especially excited to see him. We are not able to have him in the rental house, so it will be a long 6 months but knowing that he is happy and just a 20 minute drive away makes it a bit better.

Malachi received one final Christmas gift from his Aunt Becky, and I have to tell you that she knocked it out of the park! She ordered him a switch operated fart machine and he has laughed and laughed, having a blast with it! I took a video for you:

Tonight we will be talking to the teens about the importance of intercessory prayer. This has been on my mind a lot over the last week. I can’t even begin to tell you how blessed we have been by strangers and friends in the last several weeks. It has blown us away. At night when I sit and dwell on it all I find it so overwhelming to even know how to begin repaying the kindess. As I laid one night processing it all became clear: “Pray for them.” My prayers have been focused on the many people that have been the hands and feet of Christ in our lives. From paying for meals, to lending campers, to simply being prayer warriors for Malachi, my prayer time has been filled with faces and names.

I have also learned this week how refreshing it is to spend my time in prayer focusing on the needs of others as opposed to my needs. It pleases the Lord when we make our requests known to Him, but I also firmly believe that it pleases Him greatly to hear of our love and concern for our brothers and sisters.

Well friends, we are off to the dollar store for some necessary supplies for the lock-in. I hope you are as excited as we are about the amazing things God can do in 2017. We are expecting more miracles for our Malachi.

Much love,

Jake, Leah, and Malachi