We Have a Preschooler!

This week was monumental for our family as we took a huge leap into a new world…preschool! Malachi is not going to be attending school full time this year so our personal family goal is starting at just three hours a day from 10am-1pm. We simply want him to get to spend some time with other children and have something that is “his” to look forward to each day.

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I am attending school with Malachi for now until everyone working with him feels 100% comfortable and confident when caring for him. Malachi has been his normal quirky self giving them lots of exposure to his seizures and personality. All of the adults in the classroom have been ready and willing to learn, which is something that is so important to Jake and I. Sometimes in the special education world you can run into professionals with egos who aren’t willing to listen to your specific concerns about your specific child. Everyone we have talked to this week has been wonderful to work with.

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So what does Malachi think of school? He loves it! The concept of going there every day seems to still be sinking in, but when we talk about school and his friends he gets so excited! I took this sweet video at 6am Thursday morning:

The hidden benefit is that Malachi has been sleeping more soundly at night! I think all the activity is successfully tiring out his brain! His therapies will be started this week and we would really like to get him in some preschool inclusion (where he joins a class with other kids his age) during his day there as well.

Just for you curious folks, let me tell you a little about Malachi’s classroom. Malachi falls in the “severe and profound” category for special education which means he will spend his educational time in a Comprehensive Development Classroom (CDC). He is eligible to start school at three years old and remain in a CDC classroom until the age of 21. The tricky thing about CDC rooms is that they are a melting pot of disabilities and ages. Malachi’s classroom has a teacher, a Licensed Practical Nurse (LPN), and two paraprofessionals. Our goal is that each of the four adults in the room will become Malachi experts.

I want to make sure to protect the privacy of the other children in the classroom, so please understand that anytime I talk about his education I will be speaking in very broad terms! I would want the same respect from others!

By the end of the week both Malachi and I were absolutely exhausted. We spent most of Saturday staying in our pajamas and trying to regain some energy. Malachi got spent some time in his canoe watching Elmo and playing with his keyboard.

We also spent some time working on core strength and head control. This is always so hard for him, but lately he has shown us so much eagerness. He will always work for compliments, as you can see in this video haha!

Cognitively he has continued to amaze us this week. He listens to every word we say, a fact we sometimes forget. On Friday I was speaking with his therapist and I said the name “Jake” several times in the conversation. Malachi was listening in and started saying “Daddy” which absolutely blew me away! His ability to make connections is such a fun thing to watch.

Wednesday we went to see the high risk doctor to check on baby Levi. A little background…a few weeks ago I had some blood drawn to check levels. Unfortunately I got a phone call a week later that my Alpha-fetaprotein (AFP) came back a little elevated. High levels of AFP can point to neural tube defect like spina bifida or anencephaly, so that was the first thing to look at. We had already checked for these things in our last ultrasound, but they wanted to check again to be confident they had not missed anything.

Wednesday’s ultrasound verified that there was NO evidence of either of this neural tube defects, praise God. So what do the elevated levels mean? They can indicate placenta problems like preeclapmsia, IUGR and other growth disorders, or low amniotic fluid. With protein levels like mine, the protocol would be to start doing weekly ultrasounds at 30-32 weeks…that is already the game plan for us anyway so it doesn’t necessarily change my course of treatment but rather changes the things on our radar to watch for. They also are scheduling me more frequently with high risk to keep an even closer watch on things. We will be watching the babies growth VERY closely to make sure he continues to progress like he should.

As of now Levi is measuring 14 ounces, which is on target. Everything appears to be progressing as it should. We will be seeing our regular doctor in about a week and will see high risk again in two weeks.

Levi is still as wiggly as ever! He is kicking with such force these days that you can see the movements on my belly. We never got to see that with Malachi, so this has been extra-special to share with Jake.

Let’s do a brief flashback to a picture of little Malachi from three years ago:

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Jake and I have had so many conversations this week about how blessed we are to have Malachi in our lives. It is absolutely astounding how far he has progressed and all we can do is give glory to God. Seeing him comprehend so much is something we couldn’t even fathom just a few years ago.

As we prepare to move into our new home in a few weeks, we are starting to think about the type of environment we want to create in the brand new space. As we thought about every little detail, something that has continually come up in conversations is our mutual desire to cover our new home with God. We buried Bible verses under the foundation, spending time in prayer over each of the rooms that would be housed above it.

Something else that was pricking at my heart was making sure that our living environment would remind us to stay close to God. A few weeks ago we had a family member generously give us some money towards a housewarming gift and I knew EXACTLY what I wanted to spend it on! I waited patiently for Hobby Lobby to run its deals and this was the week!

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Our decor in the new home will be covering the walls in scripture. The Bible talks about hiding God’s word in our heart (Psalm 119:11), meditating on it day and night (Joshua 1:8), and using it as a lamp to our feet and a light unto our path (Psalm 119:105). My prayer is that these reminders of God’s word being visible on a daily basis will help us keep our eyes focused on Him.

Like we read in Matthew 14, Peter was able to do the impossible…to literally walk on the water…when he had his eyes and mind focused on Jesus Christ. When he allowed himself to be distracted by the wind and the storm around him, he began to sink below the surface. My prayer is that these scriptures will remind us to keep our eyes on Christ and away from the storms that may be brewing in our everyday.

Thank you for taking the time to check in. My biggest prayer need right now is for our pregnancy, that it will continue to progress as it should. We are in week 22…just steps away from the very important age of viability. Please continue to pray blessings over Levi!

God bless,

Jake, Leah, Malachi, and Levi Carroll

Semi-Trucks and School

At the end of every month I do what I call the “great calendar switch”. It is so incredibly refreshing to wipe our whiteboard calendar clean and erase all of the chaos and stress that the previous month held. For several minutes I just sit and stare at the clean calendar (weird, I know) before I start filling in the appointments for the current month.

As I began to fill out the calendar for August I started to realize how much our life is about to change. Malachi has seven standing appointments for therapies each week and starting this week he will now get those therapies (all but horse therapy) in school! No more 30 minute drives to town four days a week. No more back to back appointments that I have to pack coolers for. It is such an odd yet exciting feeling!

Tomorrow will be Malachi’s first day of school! I have officially completed the Malachi handbook and made enough copies for his teachers, aides, and therapists. I will be attending school with Malachi until the staff feels comfortable and confident and then we will try a solo run.

On Thursday evening we went to Malachi’s school for their open house. Mainly I wanted Jake to be able to see the classroom that he would be in and walk through the school to help put his mind at ease. One of the things I love about Jake is his very tender heart, and be loves his boy so much! As we got in the car to leave the open house he said “It’s a good thing you are taking him the first day because I don’t think I could do it without crying.” But the open house did put his mind at ease as he realized how many teachers we know at the school!

Malachi has had a great week! He worked hard in all of his therapies and had a wonderful session on the horse. His teacher took a video for me during his trotting, and unfortunately it isn’t the best quality, but listen to that giggle:

We also had a fun play date with some new friends we met through Facebook after the Chick-Fil-A post. Malachi seemed happy to be back into his life here in Tennessee and was ecstatic to go back to church this morning. He had a lot of big adventures this week like going to the river with the youth group and spending Saturday at the soccer field with the girl’s team.

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Jake went back to work this work and Malachi and I struggled to find our routine again. Tuesday was rough but by Wednesday Malachi seemed to understand a bit more that daddy was gone for the day and mommy and baby Levi need to sleep longer that 5 hours a day. He is still sleeping poorly, but after three wake ups I turn on Elmo and he lays in the bed with mommy while I catch another quick hour of sleep. Granted, Malachi spends that hour hitting my face and licking my neck in an attempt to wake me up but I am usually too tired to care haha!

Before we left Ohio on Monday we snapped a few pictures of the kids. Malachi’s interactions with Kaliber (my half brother) just warmed my heart so much this week and these pictures captured their special bond.

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Such sweet children! We kept Malachi forward facing in his car seat for the ride home and he enjoyed the change more than we ever imagined. He spent the first part of the drive looking out the window and the first time we passed a semi-truck we heard him yell “Daddddy, daddddyyyy, ahhhhhh” in a frantic tone. It was so wild to hear him call for his daddy in a scared voice, as we didn’t understand what had frightened him and he had never done that before. When we pieced together that it was the semi-truck we made sure to warn him before we passed another and make it an exciting thing instead of scary. Within the first hour it became a game and he spent the entire 6 hour drive staring out the window looking for trucks. When he would spot one he would squeal with joy, especially when we passed the large bright yellow Penske moving truck!

Baby Levi is continuing to grow and is very opinionated about how I lay in the bed at night. Right now as I type this he is kicking me so hard that it startles me every time, even though I know it is coming! I truly feel that God has given me a wild child to help calm my fears…there are so many times in a day that I worry about whether the baby is still alright, but when those fears creep in little Levi will always reassure me with a good kick to the abdomen.

Unfortunately I got a call this week from my regular obstetrician explaining that some of my blood work came back with slightly elevated protein levels so we will be double checking some things at this week’s appointment. But doc seems to think that if it were a big issue we would have spotted the signs/issues prior to now from other ultrasounds and tests so we are praying for a clean report. Yet another opportunity for me to focus on faith over fear.

Jake’s father could also use your prayers this week as he is going through a rather difficult time with this round of chemo.

I am going to be honest with you all…I have been neglecting my quiet time with God lately. I am so tempted to give you excuses like “Life has just been too busy”, or “There just isn’t enough time in my day”. But the truth of the matter is that I have not made the conscious effort to spend time in the Word. It is amazing how even a short break away from time with God can change your mood, thoughts, and behaviors.

So this week I am going to focus on making the conscious effort to make time for God. Make Him a priority above other things. Are any of you in the same boat as me and want to join in? Let’s stop making excuses and decide to focus on Him.

God bless you this week,

Jake, Leah, Malachi, and Levi Carroll

 

Baby Names & Travel Challenges

This is one of those weeks where I don’t even know where to begin…

Let’s start out with details about our trip to Vanderbilt. To recap, Malachi visited his orthopedic doctor about 6 weeks ago for his annual checkup. While we were there I brought up my fears with Malachi’s spine and the doctor ordered x-rays which showed a slight curve. In order to prevent big surgeries in the future we decided to fit Malachi with a scoliosis brace which would take 6 weeks to make.

Fast forward those six weeks and Wednesday was the big day to pick up the brace. We loaded up the car and left that morning to make the 3.5 hour drive to Vanderbilt, stopping at a clinic close to the hospital to pick up his brace. After we had our introduction class on how to care for the brace and properly put it on Malachi, we loaded up again and drove to the hospital to meet with orthopedics and take more x-rays.

The back brace has some pros and cons.

Pros: Malachi seems to like the support the brace provides and can work on his head control a little more while in the brace. And the brace most definitely does correct the curve we were seeing in his spine, as seen in these x-rays.

Cons: The brace is exceptionally warm and requires a tight tank top to be worn underneath. We also have to watch him closely for “hot spots” (areas where the brace may be wearing down his skin). In order to make sure the brace is continuing to be a good fit, the equipment provider said she needs to see us at least once every three months…something that will be increasingly more complicated to try to do with the addition of Baby C. Final con is that we are not able to burp Malachi in the brace very well, which leads to an increase in seizures.

At this point the doctor would like for us to keep him in it for a few hours a day. His vertebrae have not curved yet so the bracing is still preventative instead of remedial. The current muscles he has in his core will suffer if we were to keep it on him at all times, so alternating wear will give him a good head and core workout. We are still proceeding with caution, prioritizing seizure control over bracing.

By the time we left the hospital it was 5:00 and we were all wiped out! We had decided to continue our trip from Vanderbilt on up to Ohio to visit with Jake’s dad one final weekend before Jake goes back to school, so we rented a hotel room in Bowling Green, KY. In my head this would be a perfect idea, as Malachi would be able to swim and we could all get a full night’s rest making the rest of the drive the next morning.

Life had different ideas.

The swimming part was great! It was the best Malachi has ever swam and he kept trying to leave Jake to go swim with the big kids on the other side of the pool. Here is a sweet video of him hard at work.

He had been up since 4am before leaving for Vanderbilt and with our crazy jam packed day I simply assumed he would sleep like a rock. We were so wrong, as Malachi woke up every other hour the entire night. We took turns getting up with him- he slept 4 pieced together hours and Jake and I only got about 6 hours each. I was emotional from the lack of sleep (several nights in a row) and eager to get on the road quickly the next morning.

As Jake loaded up the van, Malachi and I sat in the lobby of the hotel and out of nowhere came a great big seizure. Before I could react he projectile vomited all over himself, my legs, and the floor of the lobby. As I looked at the dismayed face of the desk clerk I felt my face grow hot with embarrassment as we scrambled to get it cleaned up and get all of us vomit free.

We finally loaded up into the car and headed towards Ohio and Malachi continued to have one great big seizure after another in the back seat. When this happens on the road we feel so helpless and spent the drive pulling over to try to help him through them. We watched him closely, trying to determine if he was having a shunt malfunction or if something else was causing the seizures.

He continued to projectile vomit with the big seizures and made a great big mess in the car seat for us to try to manage on the road. This was the best way to depict how we felt at by the end of the day.

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We made it to my dad’s house and tried to figure out what to do next. We were able to get him to keep his meds down that night and got him to sleep for a few hours, which also seemed to help. If we had been at home, we would cancel all appointments for the following day to allow his body to recuperate after all of trauma the seizures had put him through. But since our Ohio time was limited, we just tried to take his feeds slow and watch him like a hawk.

It took a few days but Malachi finally seems to be back to normal. We aren’t sure what the trigger was…we have our theories…it could have been the pressure from the brace the day before, the major change in routine as we traveled, car sickness, etc. There is no telling!

But just to rule out car sickness we did make the decision to turn Malachi’s car seat around. He absolutely loves facing forward and spent the first 5 minutes of the drive giggling uncontrollably and trying to look out the window (to our joy and amazement)!

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His right hip causes his leg to stick out into the path of the car door, so we have to bungie his legs together with a giant hair tie but it works! Facing him this way is statistically SO MUCH more dangerous with his lack of head control, but it does allow us to monitor his seizures better from front seat. We are looking into a special needs car seat that may offer him some extra supports.

This week we also met with my regular OBGYN (non-high risk). We have hit the 20 week mark, which is absolutely amazing, but the closer we inch to 24 weeks, the more nervous my doctor seems to be. While everything seems to be going well, he is still very cautious. This is the mark where I am supposed to stop lifting Malachi, and exercise of any kind is very discouraged. He also thinks that I should not be traveling far from the area beyond this point in the pregnancy, so if a problem arises I will be seen by a doctor familiar with my case.

Baby C officially has a name! This little one will be named Levi Daniel Carroll. This name has lots of significance to it both biblically and personally. Jake’s dad’s middle name is Daniel and we wanted to honor his legacy. The biblical significance is a Bible lesson all of its own that I am going to save for another day.

We have been referring to the baby as “Baby Levi” to Malachi for several weeks now. At church last week someone referenced the Levites in the Bible and Malachi just couldn’t believe it. He whipped his head towards me with wide eyes as if to say “How do THEY know about my baby brother?”

Malachi has LOVED spending his week in Ohio with my two year old half brother, Kaliber! Seeing his reaction when he comes into the room would just melt your heart. Malachi squeals with joy every time Kaliber comes around, and Kaliber loves on Malachi freely giving him lots of hugs and kisses. It has been so fun to get a glimpse of what life may be like with Levi and Malachi. Best friends for life!

Funny side story- Kaliber has been running around the house yelling my name all week. Today in the car Malachi randomly yelled out “Leah” as clear as day! Jake and I couldn’t believe it!!

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We had lots of adventures this week while in Ohio, but the one that takes the cake came from last night. I have an elderly grandmother who we love to visit when we are in town. She doesn’t get to the store often so when we do come we always make sure to take her. Jake wanted to spend the evening with his dad so I ventured to the store with Malachi and Grandma to let her do some shopping. The sun was setting as we came out of the store, which temporarily blinded my low vision grandmother in the middle of the crosswalk. I was pushing Malachi in his wheelchair while pulling a cart of my own and had to find a way to pull her cart as well out of the crosswalk with her holding onto the cart for safety. It truly was a comical scene watching a pregnant woman trying to handle a literal train of wheelchairs, carts, and people and someone quickly ran over to help (thank you stranger)! Never a dull moment!

Tomorrow we head back to Tennessee and into our very real world of appointments, therapies, and life. Jake will go back to work on Tuesday, and Malachi is scheduled to start school on Friday. We are most likely going to keep him home at least that first day and allow the classroom teachers to get settled with the other students in the classroom before we bring our little firecracker into their world. We have been talking to Malachi a lot about school, and he seems pumped and ready to go!

We are making some great progress on the house! I will post some pictures soon, but we are just a few weeks away from moving in. Little fun fact for you: one of the subcontractors hit a bear on our new road! When he got out to check on it, it jumped up and ran into the woods so we are assuming he survived. Pretty amazing how moving just five miles down the road can change the type of wildlife we see.

My energy level is down to 3%, so I won’t be able to elaborate as much as I would like to, but this week emotionally wore me down. There were 4 times this week that I found myself having to take a big, deep breath and swallow the large lump from my throat. Tears tried to spill all week as I felt so defeated by our life. We fight day after day to give Malachi a quality filled and amazing life, and to see his little body struggle through seizures, new medical equipment, medication changes is sometimes just plain ol’ difficult.

But through all of his trials he continues to keep that big smile on his face. His joy is truly contagious, and I thank God that He has developed Malachi’s emotions enough that he knows what it means to be filled with the joy of the Lord. His ability to communicate with us is growing by leaps and bounds, and his response times to our questions is getting faster and faster.

We truly feel blessed to have sweet Malachi in our lives! It is just some weeks it is very difficult to be a strong mommy for him.

“He gives strength to the weary and increases the power of the weak….”

So to end on an uplifting and strengthening note, here are some pictures from therapy successes this week!

Thank you all for your prayers this week. And a special thank you to Susan, who gave me a much needed reminder this evening to continue placing my faith over my fears.

Much love,

Jake, Leah, Malachi and Levi Carroll

Every Thought Captive

Malachi’s week was full of adventures! As our summer winds down and the school year inches closer, we are trying our best to cram in as much as we can before Jake heads back to work.

On Monday Malachi got to meet his new teacher for school! This was something we have all been looking forward to as the transition to school is something we are nervous about. Within seconds of wheeling him into his classroom he went into a medium seizure, giving us a perfect teaching moment on what his seizures look like! He continued to “show out” during the 45 minute meeting, having another small seizure, a few staring spells, and getting mischievous and silly with his head control.

I am still working on Malachi’s handbook that will get distributed to his teacher, aide, and nurse. We will also try to meet again before class officially begins to make sure they are comfortable with his needs and care.

Malachi is turning into quite the little comedian and loves to make people laugh. He is talking a lot more around the house and loves to call for us if we set him down to briefly step into another room. I filmed him calling for his dad this week…he also says “I love” at the end (his version of “I love you”).

Wednesday we headed down to Chattanooga to meet with a dietician, something I had requested at our latest GI appointment. I needed some concrete daily goals as to what I should be aiming for in regards to Malachi’s nutritional needs. After talking with her I feel so much more confident that we have him on the right track in regards to calories and his weight gain. She didn’t seem concerned at all with his weight.

I had recently ordered a new meal replacement shake to try with Malachi as he has not been responding well intestinally to his soy nutritional drink. This new drink is called Kate Farms Komplete and is dairy, gluten, and soy free and is made with all natural ingredients. Trying new drinks is always a challenge as they are so incredibly pricey and we quickly find out he won’t tolerate them. After getting the thumbs up from the dietician we decided to give it a try and Malachi gobbled it down. That night he slept 7 hours straight and didn’t wake up with a tummy ache like he was doing on the soy drink. I think we have found a winner but we will give it a few weeks before we commit fully.

On Thursday we had a special lunch date with a family we connected with on Facebook. They just happen to live in the same county as us and tracked us down as a result of the Chick-Fil-A video and sent me a message about their son. He is 14 months old and was diagnosed with the same terrible and rare seizure type that Malachi had at 8 months old. After lots of messages back and forth we were able to officially meet up and introduce the boys! There is just something so refreshing about spending time with other families with unique needs like ours. And the momma is full of faith, which is something I need in my friendship circle right now.

Friday we went on an adventure with the youth and took a bus load of middle schoolers to lunch and to a Chattanooga trampoline park. Malachi loves spending time with the big kids. We spent the spare time in our week running soccer practices, meeting with contractors, and trying to sneak in some much needed pregnancy naps! Malachi’s new favorite way to sleep is with our foreheads and noses touching…not very conducive for my ever growing body.

Today we took Malachi for a swim with his cousins, which he absolutely loved.

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This coming week is a wild one that will include a trip to Vanderbilt to get a scoliosis brace and meet with the orthopedic surgeon followed by a trip to Ohio to see Jake’s dad in between his chemo treatments. Jake will return to school the following Tuesday and Malachi is scheduled to start school Friday, August 4th! Insane!! We made some major progress on the house this week- it looks like we will be moving in within a month or so. I can’t wait to give you all a virtual tour of the finished product.

Side note- the new house is tucked into a very country area and we have been amazed at all of the wildlife we see right outside our house! The neighbors have seen black bears, but we have yet to see those. But just yesterday we came across a bobcat as we pulled out of our driveway! He stared at us and we just stared back, trying to figure out what this muscular looking cat creature was. He was the size of a dog and it wasn’t until we saw that bobbed tail that we recognized it as a bobcat! What a beautiful creature!

In 2 Corinthians, Paul talks about the concept of taking every thought captive. This verse has been on my heart and mind this past week as I continue to struggle with combating devil’s attacks.

Interestingly enough, with lots of prayer and lots of “faith over fear” reminders I was able to relax a bit this week and found myself stressing less and less about Baby C. But the devil prowls around like a roaring lion, and when he realized he wasn’t succeeding in that area of my mind he formed an attack against another region…

This week my thoughts have been continually flashing to Malachi’s future. A prime example happened this morning during church. The worship team was singing “10,000 Reasons” which is one of Malachi’s all time favorite songs. As I held him on my lap and listened to him sing out the words, grinning from ear to ear, I smiled to myself. But immediately my thoughts went to “We definitely need to make sure to play this song at his funeral.” WHAT?!? Where did THAT come from? Even as the thought entered my mind I was sickened by it.

But my radar flared as I immediately recognized this thought as the work of the devil. I had to transition my thoughts quickly to the power of God and focus on the plan God has for Malachi’s life. While I can’t guarantee that God’s plan for Malachi is for him to outlive me, I can guarantee that Malachi will not leave this temporary home on earth before God is finished using him in a mighty way.

Every. Thought. Captive.

Continue to pray for our family as we are getting ready for some major life changes…a new home, starting school, a new baby, and so many more exciting things. Pray that our walk with God continues to remain a priority during these busy days and that He would continue to use Malachi’s story in ways we can’t imagine.

God bless,

Jake, Leah, and Malachi

 

 

It’s A __________!

To start of today’s entry, let me allow Malachi to tell you the gender of Baby Carroll:

On Wednesday we met with my high risk doctors to check on Baby C. It was an intensely long ultrasound as they took their time doing a full anatomy scan, being sure to check for birth defects or abnormalities. From what we could see, everything looks perfectly formed and the baby is measuring right on target at 6 ounces. I am 18 weeks, which is exactly half way to our due date target of 36 weeks! Baby C is a WILD ONE! The ultrasound technician couldn’t believe how active baby was and it was very difficult getting still shots of the different organs.

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Malachi absolutely loves talking about his baby brother. He knows exactly what we are talking about and grins from ear to ear. If I ask him what a baby does he will put his lips into a frown to tell me that babies cry…a fact he thinks is absolutely hilarious. We are trying to narrow down the name list so we can start referring to him by name with Malachi.

Malachi has had a great week! We started at the dentist on Monday and Malachi got to see the new girl dentist. He was smitten with her and cooperated amazingly as she checked his crowns and his one remaining real tooth…no cavity in that “accountability tooth” as we like to call it! Good for another six months!

The rest of the week was full of therapies, church, soccer practices, play dates, and general silliness. Here is a video clip of Malachi playing with his switch operated dog. He loved that it was tickling his feet:

Malachi threw us a curveball and slept completely through the night on Friday evening sleeping 7.5 hours straight! It was the best sleep I have gotten in months and we were so productive the next day. We even had enough time for me to run through his home stretches and give him time in his stander. I pushed it in front of the television so he could watch a movie up close and boy did he love that! He tracked the characters on the television so incredibly well and seeing him watch so intently was very encouraging to see.

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Here is a video of him watching Daniel Tiger:

On Friday afternoon we met up with my sister in law, nieces, and nephews at a local playground by the river. I rigged Malachi’s chair up with a new shade umbrella and his battery operated fan and he handled the heat like a champ!

The part of the brain that regulates body temperature is very damaged on Malachi so he can’t spend too long out in the heat before he shuts down. This summer we have noticed it being more of an issue than other years so we are trying our best to be more proactive about it and limit his time outside. We have scheduled our soccer practices for mornings or late evenings so he isn’t miserable. But we are also trying to make sure we don’t allow it to affect taking him out and about for brain growth reasons! On Saturday we took a drive up the mountain we live at the bottom of. There is a large recreation area at the top with beautiful views and a large lake to swim in. While we didn’t take him in the water, he really seemed to enjoy the fresh air.

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This week was a fear battling one for me leading up to the ultrasound appointment. My mind kept wandering to the idea that something was going to be wrong with the baby. Every time I started thinking those thoughts I would quickly try to combat them with scripture and prayer, but the devil is a crafty one and continued to weasel his way back into my thoughts.

As I got ready for the appointment that morning I reached for the waterproof mascara, as I had convinced myself that there would be tears at this appointment. It is in trying times like these that I am reminded of how “easy” faith can be when life is moving smoothly. When the waves begin to grow it becomes increasingly more difficult to keep your eyes on Christ. This week was one where I caught myself focusing on the waves instead of the lighthouse.

As I drove by a local church I noticed their sign that read: Your faith must be bigger than your fears.

Sound familiar haha? “Faith Over Fear”!!

Isaiah 26:3 tells us “You will keep Him in perfect peace whose mind is stayed on you, because he trusts in you.”

What a perfect reminder for this week. I fully recognize how successful the devil was on my mind this week, and I am so frustrated that I gave him such victory over my thoughts. It has been a reminder to me that I need to be digging into God’s word even more and filling my heart and mind with words of truth.

Please remember our family of four this week and join us in prayer for Baby C. My prayer is that God begins to use him for great and mighty things at an early age. I pray that God gives him a heart like His own and a nature that draws others to God. I pray that his love and compassion for Malachi is beyond anything I could ever imagine, and their bond becomes an unbreakable one.

God bless,

Jake, Leah, and Malachi

Joyful Jibber-Jabber

I greatly underestimated the lack of energy I would have on the day we returned from youth camp! But I also recognize the moment I get out of the Sunday blog writing routine it will be game over, so be patient with my slow mind right now!

Jake, Malachi, and I embarked on a big adventure with the youth group as we headed to the mountains of South Carolina for 5 crazy days. This year we had 24 kids/chaperones in our group and overall it was an amazing week. Malachi and I always rent a place in the closest town 15 miles away and drive back and forth each day. This year we rented a basement apartment and it turned out to be a perfect environment for us throughout the week.

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I have explained this before, but preparing for any trip with Malachi is so incredibly complicated. We have to start weeks in advance to make sure that enough diapers are ordered, medications are refilled within insurance time limitations, rescue medications are packed for a worst case scenario, medical history papers are updated and put in the glove box just in case, wheelchairs and home chairs are packed, food is thought out for the week, and coolers are ready to go. For this trip, add into that medical paperwork and waivers for 23 other individuals. Preparing for a trip is a job in of itself!

Malachi was a champ on the 4 hour drive to camp and was so excited to be on an adventure. We had two of the high school girls ride in the car with us and he was so happy to have one sitting in the back with him. He kept leaning forward to see her, smiling from ear to ear.

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On most days we tried to keep a manageable schedule and go to camp with the kids from 10:30a-7pm. Then we would head back to the rental to deal with medications and try to wind down before bed. Unfortunately Malachi was a goober most of the week and wanted to stay up late and party every night. Last night he was particularly wild and I told him sternly “Malachi, you need to close your eyes and go to sleep.” Apparently that crushed him and he immediately started crying and yelling “Daddddy”.

In the last few months Malachi has been developing his emotions in big ways. He used to not understand emotion changes and thought it was funny if we had to raise our voices to him. But lately he has started to cue into our emotions and it tends to hurt his feelings and lead to crying and a meltdown. Very typical behavior of a 4 year old…YAYYYY!!

For example, we took Malachi’s wheelchair stroller to camp with us and quickly realized we needed to make some modifications on the headrest so we raised it a bit. By the end of Day 1 he had discovered that he could fling his head and get it stuck under the headrest, and boy did he think it was hilarious. It looked absolutely painful so we would panic and fix it, only fueling his game. I took him into Wal-Mart on the way to check into the rental to pick up his milk and in that 5 minute trip he got his head stuck under the headrest more than 30 times. The lady behind me in line commented with shock on her face: “He is totally doing that on purpose, isn’t he?”

The next day he continued his game literally the very second I set him in the chair. I told him very sternly that if he did it again that he would be in trouble and that little stinker grinned at me and did it again. I leaned down and got nose to nose with him and as I fixed his head this time I very sternly told him “No Malachi”. By his reaction you would have thought that I had spanked him and he immediately burst out into sobbing tears. Obviously my heart melts when this happens, so I wheeled him over to a close bench and got him out to hold him and talk to him.

This is such a tricky situation for me as his momma, because I fully believe that Malachi is able to learn the difference between right and wrong. In other similar scenarios we have done the same thing, and the targeted behavior stops immediately so I know he is able to equate the two! But it is also hard to discipline a child like Malachi…and heartbreaking.

We sat together for several minutes and he slowly calmed down. We talked about how mommy loves him but he has to listen and be a big boy. I put him back in his seat and he didn’t try it again for the next two hours.

Other than these few emotional moments for him, Malachi had a wonderful week with the youth. Pregnancy very clearly wore me down more than normal but we managed.

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And God is so gracious- my pregnancy nausea disappeared the day before we left for camp and stayed away until yesterday afternoon. What a blessing that was!

One of the evenings I decided to stay a bit later and take Malachi into the chapel service…risky move as he likes to make scenes these days yelling when it is quiet. They started playing some praise and worship songs that Malachi happened to know and he was so excited. He would work so hard to say the right word at the end of each line, but would always be one step behind the group. It was absolutely the sweetest thing to hear him praising God though. So the group would sing “Amazing grace how sweet the sound that saved a wretch like me…” and when the group would pause Malachi would yell “MEEEE!”

But I can safely say that we survived youth camp 2017! It will be the last year that Malachi and I will attend for several summers but I am very grateful we had enough energy to make this final trip happen. It is always such a great time to connect with the kids.

Baby C is a wiggly one! I had a very surreal moment in the chapel with both Malachi and the baby- they started loudly playing a praise and worship song that we have been listening to daily and at the exact same time Malachi started happy dancing in my arms as Baby C started wiggling like a wild one in my tummy. Feeling them both react at the same time was such a fun reminder for me about the bond I know they will have.

We have been talking to Malachi about the baby as often as we can, and it has become one of his favorite topics. He gets giddy with excitement! Here is a video I took this week as we were talking about the baby:

We are scheduled to meet with high risk on Wednesday and should be able to find out the gender! What fun news that will be to share with you all next week!

I would love to write more, but Jake just laid Malachi down and I have been looking forward to crashing in my bed all day! We need to build up some energy for the very busy week we have ahead of us.

We love you all,

Jake, Leah, and Malachi

 

 

 

A Little Bit Of Life

As Malachi continues to become more stable we find our weeks becoming easier and easier. He can now sit in his home seating systems for up to 30 minutes at a time, allowing me to do the dishes, shower, or just be hands free for a bit. There was a time not too long ago when even 30 seconds of sitting by himself would cause Malachi to vomit and have seizures! We still keep him in our sight always, including a video monitor on him at night but emergency moments are few and far between.

Although our life has slowed down tremendously we still keep a pretty rigorous weekly routine with appointments and therapies. Here is an example of the chaos we have to keep track of…each month I do what we call “the great calendar switch” and change it over for the next month. I could not survive without this whiteboard!

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This week was no exception and we started strong Monday morning with a trip to the hospital to see the Gastroenterologist (GI specialist). This particular doc and I have a great relationship even though we have had our share of disagreements haha.

Malachi was diagnosed with “Failure To Thrive” when he was discharged from the NICU as they were worried about his ability to gain weight and grow at a healthy rate. Our first GI appointment immediately jumped to a G-tube conversation which I was adamantly against. Yes, he was very very hard to feed but I just felt if we worked hard enough his little brain may be able to rewire itself and he could learn to eat. The doctor very skeptically agreed to postpone tube talk and gave me a chance to prove him wrong.

Oh boy, did he learn how to eat! And he ate and ate and ate (bottles only) until he was overweight. In December Jake and I made the decision to cut back his calories a bit and switched him to almond milk/fruit and vegetable smoothies. He lost a bit of weight, but we truthfully don’t focus on the numbers but rather on him visually looking healthy. About a month ago Jake and I noticed he was looking a little too thin so we bumped up his daily calories by adding some meats and one snack with a sugary soy milk per day.

He is slowly gaining weight, and we half expected to get chastised on Monday at the GI appointment. While the doc wasn’t thrilled he trusts us to get him back on track. He is still under the first percentile for height and weight but his BMI is in the 91st percentile.

After his GI appointment we headed to hippotherapy and Malachi ROCKED it! He had a nice little cat nap in the car along the way and he was ready to ride. I took a few videos for you so you could share in his joy.

Tuesday we had an appointment to check on Baby C. Everything looks great! We talked a bit about the anti-Kell antibodies that I now carry and he explained that I need to make sure to alert doctors and nurses anytime I am scheduled to have a surgery or in an emergency situation as any blood I might receive needs to be tested for Kell. If I receive another Kell positive (Kell antigen) transfusion it will cause me to be extremely sick. We will have our next high risk appointment in about a week and a half and they will (hopefully) be able to tell us the gender if Baby C cooperates.

My pregnancy nausea has been very active this week, but comes and goes in waves instead of remaining constant. Grocery shopping is proving to be a waste of money as the things I buy sound and taste disgusting to me by the time I cook them. On Wednesday Jake and I went back to the local restaurant that doted on Malachi last week…

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He loved seeing his sweet friends again!

Yesterday was another bad nausea day and we had some errands to run in town so we decided to use a gift card to Outback for a late lunch. The place was pretty empty but there was an elderly couple sitting a little ways away from us. I have learned that when you get to a certain generation, they tend to have different views about kids like Malachi. Often times they will use language that could be taken very offensively, but I don’t get upset as I know that in their generation children like Malachi would be placed in an institution rather than raised in the home.

I noticed this particular couple kept glancing at Malachi, and I just couldn’t read their emotions. His body language seemed almost annoyed so when they got up to go I braced for them to say something or give us a look. As they quickly walked by, the wife stared at Malachi and her husband leaned down and put his hand on Jake’s shoulder. He whispered “God bless you” as he continued to walk and intentionally dropped a $100 bill on the table!!

I can honestly say that I did not see that act of kindness coming at all! They were gone by the time we processed what had happened and we both got tears in our eyes at their selfless act and kind words. They way they kept looking at him made me think that their lives had at one point had a “Malachi”, as they just couldn’t seem to take their eyes off of him.

There are such kind people in the world.

Our week was full of other big adventures…Jake fighting a black widow spider, a flat tire on the van, and other little adventures. Just a little bit of “life”.

On Wednesday we will pack up 25 kids and chaperones and head to South Carolina for the week for youth camp. It is always an adventure and I am very curious to see how this year will go with a pregnant Leah and an older Malachi. I am making my mental and physical health a priority this year so there may not be midnight pizza parties with kids like last year, but they will survive haha!

This was a “Faith Over Fear” week for me. I have been able to remain very positive and hopeful throughout this pregnancy but for some reason things changed a bit this week. I started to wonder if I would get the chance to meet this child on this side of heaven. I also found myself feeling the baby move and said to myself “don’t allow yourself to get too attached”. My faith is beginning to be challenged in big ways.

The “what if” games have begun and the lack of control I have over this whole situation is enormously frustrating. Yet again we find ourselves in a situation that strictly involves having a level of faith that is strikingly hard to reach. This week I have been praying desperately that the Lord will renew my faith and make it soar like the eagles.

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Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

This verse is so incredibly applicable for me this week, and has the answer of what I need to be doing. I simply need to hope in the Lord and allow Him to fill my fears with His presence and strength.

Please keep us in your prayers this week as I continue to fight the attacks of the devil on my thoughts. Also pray for strength and quality rest as we embark on a big adventure with the youth group. I am sure I will have all kinds of crazy stories to share with you next week!

God bless,

Jake, Leah, and Malachi

 

Mr. Personality

Something big is happening with our little warrior- and let me tell you, it is AMAZING to see!

Malachi’s sign for “yes”. We call it his happy dance.

Over the last month Malachi’s personality has blossomed at such an intense rate. I am pretty confident it has something to do with Jake being home for the summer, but regardless of the reason we are so grateful to see these big changes in Malachi.

One of the most notable changes is that Malachi now gets bored…very, very bored. And when he does he gets mischievous. That leads into another notable change- he has figured out that he is a pretty funny kid. He has made Jake and I laugh so much lately at the silly things he does and he is starting to figure out the trend for making us laugh.

For example, this week Malachi has not been a good sleeper so we have spent most nights up in the living room. He starts in his bed for a few hours, we stay up for a few more, then I lay him down with Jake and I for another hour or so. This has always been our trend, but during the school year it is just Malachi and I in the big bed as Jake heads off to school. Lately he has figured out that daddy is in the bed and wants to mess with him. He will wiggle and squirm, trying to flip his little body around to get to Jake. Jake was sound asleep one morning and when Malachi couldn’t physically get to him he yelled “DAD” at the top of his little lungs. It scared Jake out of a dead sleep and his reaction caused Malachi to laugh for ten minutes.

So now every time we end up in the big bed, of course Malachi tries to scare his dad by yelling his name and then laughs hysterically, whether Jake reacts or not. He will get himself laughing so hard that he is chuckling and it is THE HARDEST THING to not laugh with him. But we are trying to get him to go to sleep so we both stifle our laughter as much as possible. During our awake hours he has also been figuring out that he can do things and people will laugh. Like a class clown, he will continue to do those things to get people to laugh at him.

What a typical little four year old boy we are seeing these days!

Here is a video of him playing with his new toy. Watch his face closely and you will recognize a mischievous look come over his face (at about 30 seconds in). He knows exactly what I want him to do but refuses to do it and thinks it is pretty funny.

He has also been playing a game where he closes his eyes and thinks he is invisible. And that, my friends, is apparently hilarious. He will keep those eyes shut tight and every now and then peek out of one to see if I am still looking.

Cognitively, Malachi has been trying to watch movies on the television and has started talking on the phone like a champ. He even has a soft and sweet little “phone voice” that will just melt your heart.

Jake and I are just blown away by all of these changes. We have gone years fighting for even the tiniest milestones, so to have so many come in such a short time has made our spirits soar.

This week Jake and I went to a local restaurant in the town next to ours. After we sat down we were greeted by one of the sweet waitresses who came and introduced herself to Malachi. He absolutely loved her and giggled each time she spoke to him. She asked if she could hold him, which really caught us off guard but we didn’t mind as she was able bodied to handle such an awkward and big kid. She walked him around the restaurant, introducing him to all the other guests and waitresses and he just ate up the attention. As she disappeared around the corner with Malachi, I caught myself starting to cry…

You see, this type of thing is common in our area. If a cute baby comes into a restaurant they are doted on by the waitresses and carried around proudly. It is just one of the many joys of living in the south! When I was pregnant with Malachi I remember seeing this happen with other babies and couldn’t wait to show off my boy in the same way.

That day as I heard strangers doting on my son from the other room I couldn’t help but be overwhelmed by the normalcy of that moment. And the pregnancy hormones probably didn’t help my case haha.

We also had the opportunity to meet another special needs family this week! When the Chick-Fil-A post went viral last month, I received a message from a family about 30 minutes away. They told me a little about their son, Oliver, who is 3 years old and is similar to Malachi in many ways. Their diagnoses differ but they both affected by different types of brain damage. This week we were able to meet up with this sweet family- it is always refreshing to connect with others who lead a similar life to us. As we sat through lunch together, both boys experienced seizures and no explaining was needed. Just a silent understanding of what was happening and the conversations continued.

Baby is still doing wonderfully! My nausea is only coming in waves for an hour or two a day, praise the Lord! Food is so good again. Baby has been moving like a wild one lately, so much so that Jake has been able to feel it. I know that sounds crazy seeing as I am only 15 weeks along, but it is undeniable! And I am very grateful to God for those little reminders that Baby is alive and well. We will see the doctor this week for a routine checkup.

The house has made some great progress this week. Here are a few pictures.

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And finally, I was so excited this afternoon to get the email from Chick-Fil-A with the finished product from our interviews. It turned out so special, and yes, you guessed it…I cried watching it. Hearing the boy’s little voices say things like “I love you Malachi” just caused my heart to melt!

Here is a link to the video: Chick-Fil_A Interview

As I reflect on our week and all of the ways God is healing Malachi, I just can’t help but feel overwhelmingly blessed. I hope that whatever circumstances life has you in these days, that you too can find blessings hidden throughout.

Much love,

Jake, Leah, and Malachi

 

 

Step Into Medical Land

This week we have lots of medical updates to share with you all for both Malachi and Baby Carroll (who is fine so don’t feel the need to scroll to that part immediately). This is one of those updates that you may find boring so if you aren’t a Grey’s Anatomy type feel free to simply look at the pictures haha!

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Let’s start with Mr. Malachi. In addition to his regular therapies this week we had a few specialist appointments tossed into the mix. On Wednesday morning we packed up and headed to Vanderbilt to meet with his Orthopedic surgeon.

Quick background info for new readers: Malachi was born with bilateral vertical talus (both feet folded up onto his shins and slightly turned out), bilateral hip dysplasia (both hips dislocated from the socket), and knees that wouldn’t easily bend.

Okay, so here are the quick updates from each of those things…

Feet- no change (which is always GREAT news to our ears). At this point the only direction we can go with his feet is to “worse”. We have done the most we can do for his little feet and they are at least in the right position. They tend to turn up a tiny bit at the outside edges so we keep him in AFOs (ankle braces) 16 hours a day.

Knees- have gone from not bending at all on there own to resting in a bent position! The doctor was absolutely amazed by the progress in his tone. To explain this a bit, cerebral palsy is a brain injury…so Malachi’s issues mostly stem from his control center/brain. His brain was sending signals to his knees telling them not to bend. The brain can continue to make new connections around the damaged ones, and it seems that it has done so in a way that helps his tone in his legs! We are also wondering if the time we had him on CBD oil helped his muscles relax enough to retrain the brain?

Hips- when the doctor saw the change in Malachi’s knees, he was thrilled and thought that maybe there would also be some change in the tone of his hips. Malachi’s brain is telling his hip ligaments to pull tighter than they should causing them to pull out of socket and up. He ordered some x-rays and he determined that while the right hip is slightly better, the left is still very out of place. We were given two paths last year to put Malachi on with his hips…Path A was a very painful major surgery resulting in 6 months of nearly full body casts and the probability that his brain would tell them again to pull out of socket. Path B was leaving them out of place until they become painful (50% chance of this happening) and if it does we would then do a surgery to remove the head of the femur. We have chosen to put Malachi on Path B. This nearly eliminates the possibility that he will ever walk, but we feel that it is the best decision for him. Our course of action has not changed after this week’s appointment.

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Take a look at his x-ray and you will see that the left hip (so looking at the right side for you all) is not in the hole that it should be. The right hip is in better shape, but the picture isn’t very clear.

As you know, I have been stressing SO MUCH about Malachi’s spine. Severe scoliosis is common in children with CP and I have been researching that the earlier you start treatment the better. I brought it up to the doctor and he ordered some x-rays of his spine as well.

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First of all, you can tell from Malachi’s teeth that he was cracking up during this x-ray picture. Jake went in with him (as pregnant momma’s aren’t allowed), and Malachi was laughing that Jake was holding his head so still. Goofy kid.

Secondly, from the picture you can clearly see that he is starting to develop scoliosis at the base of his spine. If we leave it untreated, it will continue to worsen and we will be looking at a metal rods/screws surgery or a spinal fusion in the future. Both of these surgeries can be very risky for Malachi and we want to avoid them at all costs.

So how do you do that? With bracing. Ughhhhh.

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Before I dive into that, a few interesting things to note about the x-ray pic. The white tubing stuffed into his abdomen is his shunt tubing. His shunt is located at the base of his skull and allows fluid to move out of his ventricles and into his abdomen. Pretty crazy! They stuffed several extra feet of tubing in there so when he grows the tubing has room to stretch without pulling it loose. You can also see a glimmer near his heart which is the metal coil we had to place to close his murmur. We would recognize his x-rays anywhere haha! Not to mention all those insanely bright metal teeth that the machine picked up!

We left Vanderbilt and immediately went over for a bracing appointment to try to save us from making the 3.5 hour drive (7 hours round trip) another day. Malachi was fitted for a brace that will go from his armpits down past his hips. He is supposed to wear this anytime he is awake and will help his spine stay in the correct position. It is hard plastic sandwiched between softer padding and would go on top of clothing, so in the summertime we were told to watch him closely for overheating. The part of the brain that controls temperature is damaged on Malachi so any sort of regulation needs can get serious pretty quick. We will have to see how this goes.

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But he thought the molding process for the brace was pretty intriguing.

Days like these tend to knock the wind out of us special needs parents. They force you to look at the future…something I desperately try to avoid doing. In order to stay positive, we have to live on a day by day basis, choosing to allow the trials from each day to end when the suns goes down so we can start each day new. Days like these force me to look at the progression our family is on, knowing that things are only predicted to get much much worse as he grows.

All three of us were pretty wiped out after the whirlwind of appointments and decided to grab some dinner and start the 3.5 hour drive home. Last time we were in Nashville we took  Malachi to the Rainforest Cafe and he thought it was pretty fun, so we headed that way again for a special dinner. Jake and I also used this as our anniversary date dinner to justify getting a steak haha!

And for anyone wondering, yes that is absolutely a baby bump. I tend to show insanely quickly and this pregnancy has been no exception!

We got home just before midnight, exhausted and slightly cranky. We will have to go back up in about 6 weeks to pick up the cast and go in for more x-rays. We may just make a mini-trip out of that one and find a hotel with a pool for our boy. Those long days are so hard on him.

This week we also had Malachi’s annual physical. He has lost several pounds since we took him off the sugary drink the GI doctor wanted him on. We aren’t happy with the scale numbers right now so we are trying to increase his calories as naturally as possible. Malachi also got his first MMR vaccination to get him ready for entering school in August. He smiled sheepishly at the lady when he got his shot, looking at her like “Did you just pinch me?” His pain tolerance is insanely high! Before he got the shot I had them run a CBC on him to make sure his system wasn’t fighting anything off…he has had a random cough lately but we assumed it was a new neurological tic he had developed since he will stop coughing the second something distracts or intrigues him. I also had them check his oxygen saturation since he has been doing a new raspy breathing thing in the mornings, but everything came back clear! Just Malachi being his quirky little self.

Malachi has done great with the vaccine and has not had a fever. We were very cautious about this one as it can cause high temperatures, which increase the intensity of his seizures, but we are very blessed to tell you his temp has stayed normal.

Now time for Baby updates…

A few weeks ago I went in for one of my routine OB appointments and the doctor told me that my bloodwork had come back with some extremely rare abnormalities. I am going to assume that none of you have heard of this before and I will try to break it down into very simple terms so don’t be offended by my elementary language.

There is something called Kell antigen that can be found in blood- it is extremely rare to have this antigen- only 9% of  Caucasians have it. Kell antigen alone is not a bad thing. To make this a little more easy for me to explain, I am going to call a Kell antigen person “Kell Positive”.

The rest of the population we will call “Kell Negative”. This is the category I fall into!

If the blood of a Kell positive person ends up in a Kell negative person, their body becomes “sensitized” and will create anti-Kell antibodies and try to kill the antigen off. When they tested my blood they found that I had these antibodies meaning that somehow Kell positive blood got inside me and my system was fighting it very hard.

Worst case scenario= Jake would be Kell positive and the baby had inherited that gene from him. In this scenario, my body would try to destroy the red blood cells of the baby, ultimately killing the baby without intense monitoring and blood transfusions in utero. So they would take an insanely long needle and put it through my stomach and into the baby to give the baby blood rich in red blood cells for my body to attack. They would watch the baby and as soon as they saw he/she was getting anemic we would do another transfusion. Babies in this situation have an 80-90% survival rate, but in addition to several blood transfusions in utero, they also require more immediately after birth and have to be monitored very closely. If we weren’t already high risk, this would have sealed the deal.

Best case scenario= when I had Malachi I received 5 blood transfusions. One of these transfusions could have been from a Kell positive person. In this scenario the baby would not be in jeopardy and neither scenario puts my life in jeopardy (remember Kell in itself isn’t bad unless you are pregnant with a Kell positive child).

There is a WHOLE lot more to it, but hopefully this gives you a little snapshot. When the doctor explained all of this to me I obviously FREAKED OUT. Our family is rarely on the good side of statistics. Lots of tears that day as I tried to wrap my head around another stinkin’ potential issue. I felt the bitterness creeping in as I told Jake “I just want to have a healthy baby like everyone else!”

The only way to get to the bottom of this was to either test the baby (very risky) or test Jake. So we sent Jake’s blood to a lab in Wisconsin and waited. This is such a rare thing that not many labs in the country have the ability to test for it, and it take 10-14 days to get the results.

For two very long and emotional weeks we tried to not think about the situation. We tried to hand it over to God and trust Him….GOODNESS that is hard to do! LOTS of prayers throughout the day as I caught myself focusing on the “what ifs”. After 13 days we got the call that Jake was Kell negative like me, so there is a zero percent chance that the baby is positive. My  body will NOT attack the baby, and the antigen entered my system through a transfusion. I will always carry the antibodies and I will never get rid of the antigen but it will not hurt me in any way.

I am continuing with daily injections of blood thinner and everything is still progressing like it should. We will go in for another ultrasound on July 12th and we will hopefully find out the gender at that appointment. I have been incredibly nauseous with this pregnancy but over the last 48 hours it is starting to come and go instead of remaining constant!

That’s a wrap for medical updates. I hope this entry didn’t bore you to tears!

In my “spare” time I have been working to get Malachi set up to start school in the fall. This is a HUGE step for our family and I want to make sure that Jake and I are completely comfortable with the classroom he will be going into before the year begins. This week we have been speaking with the director of Special Education in our county to make sure they are ready to accommodate his needs. I also want to make sure that, as his advocate, I am getting him the help he needs in the classroom in the form of a one on one aide. It looks like they will be able to assign the nurse in the classroom to Malachi which will be helpful. But it will require some major training so they are able to understand his medical needs, particularly his seizures. I have started typing a Malachi handbook for her, but it is proving to be a bigger task than I expected!

The house project is moving right along. Our goal is to be in by the end of July, but I am not quite sure that we will meet that goal. Here is a picture of the back of the house so you can see some of the finished product:

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The front of the house is still under major construction but should be visibly appealing by the end of the week. To give you some perspective, this picture was taken from the driveway and Malachi will be able to be wheeled directly up the concrete and into the front door. No steps or barriers! The entire first floor is handicap accessible and the basement area is for future growth/storage if needed. We will also have the ability to add a stair lift in the future. I can’t wait to give you all a virtual tour when it is finished!

I feel like I have exhausted my word count for this entry, but I want to leave you with something that has been challenging my thinking lately.

Luke 6:43-45 43 “No good tree bears bad fruit, nor does a bad tree bear good fruit.44 Each tree is recognized by its own fruit. People do not pick figs from thornbushes, or grapes from briers. 45 A good man brings good things out of the good stored up in his heart, and an evil man brings evil things out of the evil stored up in his heart. For the mouth speaks what the heart is full of.”

I have read this verse over and over again this week as I have processed the truth in it. I am particularly enamored by the final sentence “For the mouth speaks what the heart is full of.”

When it comes to Christianity, unfortunately you will always be able to find people who simply play the part. But we are known by our fruits. As I have thought about the concepts of fruits I have tried to envision mine, wondering if the fruit I am bearing is always a good representation of God. Do the words that come out of my mouth reveal that my heart if full of Christ?

To be honest, many times I fall short. Many times I catch myself speaking things and thinking things that do not glorify God. This verse has been such a great reminder to me this week that I am an imperfect person in need of a perfect God. My prayer this week is that God will allow my heart to be filled with the fruit of God’s Spirit. That my fruits in this world will be ones that honor the Lord.

I never quite know why God places certain things on my heart to share with you… I don’t know if any of you needed to read that verse this week! But I hope in some way it will encourage you in your walk with God.

Thank you for all of your prayers these past weeks. While we still covet your prayers, this week we are also thanking God for his protection over our newest little one.

God bless,

Jake, Leah, and Malachi

Ripple Makers

My, oh my, what a challenging week this last one proved to be! Malachi and I were solo as Jake was visiting with his father in Ohio. We went into “day by day” mode and made the best of it managing to tackle 10 doctor appointments/therapies…7 of those all fell on the same day!

To add to the fun, I decided to take Malachi to our church’s VBS program on Sunday evening for the kickoff. If you aren’t familiar with VBS, it stands for Vacation Bible School and usually runs several days for a few hours each day. They have a Bible lesson, sing songs, make crafts, play games, and eat snacks. It sounded like something Malachi might enjoy and I had the energy (at that point) so I figured we would try it out.

The problem was…that he LOVED it. He was wide eyed with excitement and beamed with joy from the moment we walked in. He loved being around his friends from church and listening to their silly voices. Every evening I would ask Malachi if he wanted to go to church with his friends and he would almost come up out of his seat (literally) with excitement as he flapped his arms (his sign for YES). As tired as I was I just didn’t feel right making him miss out on such a fun opportunity.

Before and after a water balloon fight! He thought it was hilarious that his hair and face got wet. 

On Tuesday evening, a friend from church offered to sit with him at VBS for the evening so I could get some things done.  It was a huge blessing as I was able to run to the grocery, start some laundry, do the dishes, and more!

Malachi was in great spirits all week, but when Wednesday hit he had another meltdown due to missing his daddy. We did lots of phone conversations and Facetime but he just doesn’t seem to fully understand the concept of going away. Poor little Malachi cried big tears and yelled for him, getting very frustrated when he didn’t show up. Their reunion on Friday was a special one and Malachi has not wanted to be out of his presence since.

Wednesday was our big interview day with Chick-Fil-A! If you are a new reader, here is a quick summary before I go on…

About a month ago I had a very positive encounter with another mom and her children at Chick-Fil-A. Several days after the incident I started thinking about how well the mom handled her children’s questions about Malachi and wrote a letter on my Facebook page “to the mom of three at Chick-Fil-A”. I never expected it to reach the mom but rather hoped that it would help my other momma friends know how to handle their little one’s questions about disabilities.

The letter went into internet land and grew wings! It has been shared all around the world and has been translated into over 25 languages. What was meant to be a small compliment to an anonymous mom has grown into a viral post!

The post continues to reach new audiences, and managed to find it’s way to Germany in the form of a video this week…it has over half a million views!

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A few days after the original post I was contacted by someone from the corporate side of Chick-Fil-A. They explained that they had read the note and would like to do a piece on the encounter.

This past Wednesday was the official day, and the Chick-Fil-A mom and I were reunited for the first time since the original experience.

We met at a park in Chattanooga where we were each fitted with hidden microphones and the reunion was captured on film. Then we each sat down separately for on camera interviews, and they also got plenty of footage of the boys and Malachi playing.

After several hours of filming at the park, we headed to the Chick-Fil-A where we had originally met and they treated us to lunch. In my head that was going to be the easiest part, but in reality it is hard to comfortably eat with a camera pointed at your face. I found myself wondering “Is it appropriate to bite into a waffle fry?” haha! Not to mention the other 100 people in the restaurant, all watching our every move, trying to figure out why we were being filmed.

It was an awfully big adventure, and Malachi did so great throughout the whole thing. He passed out from exhaustion at the lunch table, but overall handled the ordeal like a champ.

Alright, so let me take a minute to talk about this sweet little family we have grown close to since the post went viral! And she has given me permission to use their names, so don’t fret- I am not “outing” her haha!

The Chick-Fil-A mom’s name is Emily and her three children are Crawford, Lawson, and Eve. When we first me on that special day, I knew there was something special about her. Within seconds, the word “grace” came to mind as I watched her interact with her children as they asked questions about Malachi.

When the boys came over that initial time, they both confidently went up to his face and looked him in the eye as they introduced themselves…that is so incredibly rare for children, especially ones that young! This was one of the first times I had witnessed a child interacting with Malachi like he was just a typical boy and that’s what brought tears to my eyes.

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I knew then that there was something special about this family. And my time with them on Wednesday confirmed it!

Emily came on Wednesday with her three kids in tow, and they had brought gifts for Malachi as well as the new baby. She had embroidered him a very special shirt that said “Big Bro Malachi” and had a superman symbol with an “M” in the middle. The boys had picked out a construction music DVD that they loved and wanted him to have.

They helped Malachi open the presents, and hearing the wrapping paper crunch made him giggle. Again, they talked to Malachi like he was one of them and he was absolutely captivated by their presence.

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There is something special about these boys. They were so genuinely happy to see Malachi again and squealed with joy when they found out that they were going to sit at the same table as him in Chick-Fil-A! To see such genuine love for my son warmed my heart in ways I can’t even put into words.

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But the most special thing about these boys is their love for God. Crawford is 5 years old and Lawson is just 3, but their love for the Lord was so evident. At one point during lunch, little Lawson leaned forward and whispered “Excuse me.” When he had my attention he said “I have to tell you something…did you know that God and Jesus are SOOOOO powerful?” What a profound and amazing statement for a 3 year old child to come up with.

That day I was able to see firsthand the byproduct of raising your children to love the Lord from a young age. Their hearts were so genuine, and their love for others was so evident. I know this sounds super cheesy, but meeting this family has inspired me to raise my children in the same way.

Too often I think we assume that children are too young to grasp big spiritual concepts, but that shouldn’t stop us from teaching them who God is and the BIG things that he can do! This three year old boy was explaining to me that “Jesus and God are stronger than any superhero!”

Being around Emily and her family was such a refreshing experience. I wasn’t able to fully relax and enjoy the time as we were filmed and voice recorded but we are definitely going to try to meet up again in a non-media setting. She lives about an hour and a half away, so that could be tricky to coordinate but hopefully we can make it happen soon.

When the post first started to take off, I received hundreds of messages from strangers. I read each and every one, and the kindness that saturated them was so uplifting for me. One message stuck out in particular…I tried to find it again, but can’t seem to track it down amidst the thousands of others.

But this woman wrote to me and said “In my home, we talk a lot about the “ripple makers. And you, are most definitely one.” She referenced a poem and said that if I had time, to look it up. Here is a chunk of that poem (Drop A Pebble In The Water by James Foley):

Drop a pebble in the water:
just a splash, and it is gone;
But there’s half-a-hundred ripples
Circling on and on and on,
Spreading, spreading from the center,
flowing on out to the sea.
And there is no way of telling
where the end is going to be.

Drop a pebble in the water:
in a minute you forget,
But there’s little waves a-flowing,
and there’s ripples circling yet,
And those little waves a-flowing
to a great big wave have grown;
You’ve disturbed a mighty river
just by dropping in a stone.

This whole concept has been weighing on my mind so much lately. I have thought about the impact that our tiny stone has had on the way the thousands in the world view children with disabilities.

But then I started thinking about this whole “ripple maker” concept and realized that it wasn’t me who threw the pebble…it was Emily! And I am sure if you ask her, she would be able to cite someone that she considered the ripple maker to be…someone who influenced her to act the way she did on that special day.

The point isn’t about who throws the pebble, but instead about realizing the impact our very tiny acts of kindness have on others….and how they continue to ripple through our world long after we cannot see it effects.

I started thinking about this in relation to my faith. The Bible places a lot of emphasis on the Great Commission (Matthew 28:16-20). I have been a Christian since I was a very young girl, but I can only count one time that I have sat with someone and personally led them to Christ…and I am a youth pastor! So many times I find myself discouraged.

But I think this whole ripple maker mindset comes into play in regards to sharing Christ. My prayer is that as I continue through this life that God will give me opportunities to cast pebbles, and that these small and insignificant pebbles would go on to do mighty things….that the waves and ripples they create will move others closer to Christ. I pray that God is able to use my cast pebbles to impact His kingdom.

Maybe you too needed to hear that word of encouragement today.

Some final updates:

Baby Carroll is doing well! I was able to see Baby C in an ultrasound this week and everything looks great. I am still extremely nauseous and sleepy, but God has been so good. My lack of sleep was my biggest fear last week with Jake gone, and Malachi slept 6-7 hours straight EVERY SINGLE NIGHT. Literally the night Jake returned home he went back to his habit of waking up around 3:30-4am. God was definitely intervening!

Here are some of the other Big Bro photos that we took:

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This week we will be making a trip to Vanderbilt to meet with Malachi’s orthopedic doctor. We will be checking his hips, knees, feet, and spine and we are hoping for a good report.

We will also be getting some test results back this week regarding Baby C, and we would love it if you would join us in praying for a good report. Faith over fear!

Thank you for continuing to be prayer warriors with us. Malachi is truly a gift from God. Just this morning Facebook reminded me that it was on this day three years ago that Malachi first let out a laugh. Jake was doing the dishes as singing a silly song from “Seven Brides For Seven Brothers” and Malachi made a squeaking sound. Back then, Malachi would have seizures and stop breathing for several seconds and we both panicked when we heard this odd sound. I ran over there and he was just looking back at me like nothing had happened. But then a few seconds later he made that odd noise again, and we realized that he was laughing! And he hasn’t stopped since.

Miracles are real.

God bless you all,

Jake, Leah, and Malachi