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.

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)!

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!!

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

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.

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

 

 

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.

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.

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.

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

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.

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.

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.

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