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

 

Faith Over Fear

Malachi’s sickness last week continued to progress into a pretty nasty one. We think it was a stomach bug with a high fever and other issues we won’t bother you with! Because of this, we cancelled his appointments for the beginning of the week and tried to cram them all into the second half of the week, working around his other established appointments. That meant seven appointments in three days!

Malachi is running at about 90% these days. The effects of sickness tend to stick around for a bit, and while he has not had symptoms since Tuesday afternoon, he is still very tired and worn out. He also developed a pretty intense rash from the high fever.

How about those beautiful eyelashes!

The chaos continued as the well pump at our rental house went out late Wednesday evening. We are renting from a friend and he worked tirelessly for days trying to get it back up and running. They offered to let us move in with them until it was fixed, but transporting Malachi and all of his gear was a daunting task- especially since we have been traveling here and there for the last month! So Jake filled up the soccer water coolers and we turned it into an adventure. Let me just say that I am very grateful that Malachi’s stomach bug had wrapped up by then!

We got our water back Saturday afternoon, and we have been thoroughly enjoying the luxury of daily showers and easily flushing toilets!

Jake is headed to Ohio as I type this journal. His dad will be admitted to the hospital tomorrow for his second round of chemo and we know how difficult hospital stays can be on the psyche! He is loaded down with board games and playing cards and is looking forward to spending some quality time with him. We really appreciate the prayers you have been sending up for him during this time.

Alright, now on to some pretty big news…

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Jake and I are expecting! I am 12 weeks along and have been pretty sick since April. This is new, as I didn’t have much morning sickness with Malachi (leading Jake to believe it must be a girl).

These last few weeks have been full of medical appointments, bloodwork, and ultrasounds. If you are new to the blog, let me cover a little background information before we dive into details…

My pregnancy with Malachi was a wonderfully healthy one. My obstetrician boasted every appointment that I was the healthiest patient in his practice, something I took a lot of pride in! I followed all the “rules”, drank an insane amount of water each day and did everything I could to be the best mom to be. At 24 weeks along, I started to feel “off” and had Jake take me to the emergency room. We discovered that my placenta had abrupted. I was raced my ambulance to a hospital with a Level 4 NICU as we were told the baby was coming that night.

Shortly after arriving at the new hospital Malachi’s heart stopped. They raced me into the operating room and they got him out as quickly as possible via c-section. As they got him out, they discovered that I had a massive blood clot in the spot of the abruption and I began to bleed out. One team worked on Malachi, doing CPR for 15 minutes before he came to life. Another team worked on me, starting blood transfusions to replace the blood I was quickly losing.

The most frustrating part is that no one knows why I abrupted. Typically it takes major trauma, like getting in a big car wreck to have a placental abruption, and nothing at all had happened!

Because of this, we were told future pregnancies would immediately be high risk and I would need to be monitored extremely closely. Jake and I decided back in 2015 to have another child and sadly I miscarried around 7 weeks.

This go around I knew I was pregnant way before a positive pregnancy test. My body reacts very intensely to hormones and all the signs were there within a few days of conception. I kept it quiet, almost afraid if I talked about it with Jake I would jinx it (ridiculous, I know haha).

Of course when we got the positive test we were thrilled and terrified at the same time! We have been very hesitant to talk about it with others until now, as the last pregnancy and miscarriage was so difficult for us to process.

Okay, so time for the details! I am being followed closely by a few teams of doctors. We have a local team (my regular OBGYN) who is monitoring us. We also have a team of high risk doctors in Chattanooga watching us closely. If anything goes wrong, this will be the team that delivers the baby. Both teams are doing bloodwork and ultrasounds so we have had SEVERAL appointments in the last 8 weeks. We have already had three ultrasounds and will have a fourth on Tuesday followed by more testing.

So far the baby looks great and is measuring perfectly for the gestational age. It is a very active little guy/gal who is dancing like a wild one in every ultrasound. The heart rate is also strong!

Unfortunately the next few months will be pretty complicated as we watch and wait. When Malachi was born, they worked very swiftly to get him out and did a classical cut (up and down instead of side to side). Because of this I will not be permitted to go into labor. Ideally I will be able to carry to 36 weeks, but am told to plan on anywhere between 34-36 weeks. The high risk team will be the ones that determine this. So due date is December 20th but we will most likely have the baby mid November.

So we are looking at another NICU stay, but hopefully it will be brief and issue free! And if all goes well we will be delivering at our local hospital, which will make things much easier for taking care of Malachi and spending time with baby #2 in the NICU.

Okay, now for some more details.

Because of the c-section I will not be permitted to take care (lift, carry, feed) Malachi for 6 weeks after the baby comes. This is going to be very tricky for our family and require Jake to take time off of work. Fortunately it looks like the delivery may fall on his Thanksgiving and Christmas break, helping a bit! We are also extra motivated now to try to get Malachi into school so we can have some help during that time.

Technically I am not supposed to lift Malachi beyond 20 weeks, but both teams of doctors recognize that this is not feasible so we will just be doing our best to be extra careful!

I have started daily injections of a blood thinner just in case I have any other abruption issues. We would have known a lot sooner had the blood from the abruption made its way out rather than clotting, so we are hoping the blood thinner will help prevent the symptoms of any issues from being masked again.

The last few weeks have been much busier than I have been able to let on with you all. Our appointments each week have nearly doubled as we now have two medically complicated people in the family. It has also been a challenge handling pregnancy symptoms while still trying to be a good mommy to Malachi. It is hard to know whose needs should come first…Malachi’s or the new baby? I have already experienced some major guilt in trying to answer this one.

I have been relying heavily on Elmo to help me during my tired moments. Malachi doesn’t seem to mind…

When we found out we were expecting I immediately started to worry. Each day I fought that worry from overtaking me, and many days I lost the battle. The “what-ifs” have been almost suffocating and I have been reliving Malachi’s birth. Based on his timeline, right now I was at the halfway mark!

As I was processing this worry one day I came across the phrase “Faith Over Fear”. The words played over and over again in my mind and I quickly decided that this would be the motto of our pregnancy. We will choose faith over fear.

Each time that worry creeps back up I have to repeat these words and it has served as a reminder to give that worry to God. I have to trust that God has every second of this pregnancy worked out, and He is able to do immeasurably more than we can ask or imagine.

My prayers for this baby have been pretty intense ones. In addition to praying for a healthy pregnancy, my prayers have been that God gives this child a special spirit of compassion. I have also been praying that the spirit of God would be upon him/her, even in the womb. I know this sounds odd, but as I spent time in prayer I kept remembering a scripture about John the Baptist in his mother’s womb…

Luke 1:11-17  11Then an angel of the Lord appeared to him, standing at the right side of the altar of incense. 12When Zechariah saw him, he was startled and was gripped with fear. 13But the angel said to him: “Do not be afraid, Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son, and you are to call him John.14He will be a joy and delight to you, and many will rejoice because of his birth, 15for he will be great in the sight of the Lord. He is never to take wine or other fermented drink, and he will be filled with the Holy Spirit even before he is born. 16He will bring back many of the people of Israel to the Lord their God. 17And he will go on before the Lord, in the spirit and power of Elijah, to turn the hearts of the parents to their children and the disobedient to the wisdom of the righteous—to make ready a people prepared for the Lord.”

As I read verses 14-17 I find myself praying that my child will be able to have the same words spoken over him/her. To “be great in the sight of the Lord”. To “be filled with the Holy Spirit before he is born”. To “bring back many of the people of Israel to the Lord their God”. What powerful decrees those are!

I pray each day that God uses this child to bring Him glory. I pray that God has a unique and wonderful job description for this baby, the same way He has given Malachi such an important job of bringing others closer to God through his story.

There is nothing greater than knowing that God is using your children in a great and mighty way. May that thought always remain at the forefront of my mind as a parent.

So here we go….Faith Over Fear!

Again we ask for your prayers that this pregnancy remains uncomplicated and healthy. Pray that I am able to find the strength the be a mom the mom that Malachi needs all while being a healthy mom to baby #2. And pray for Jake as he has been on the receiving end of some major hormones this week haha!

Speaking of, this week Jake and I will be celebrating 9 years of marriage! We dated for five long years before getting married, so it feels like a lifetime!

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We won’t get the chance to celebrate on the actual day due to him being in Ohio, but I don’t think we have successfully done that since Malachi was born! Our marriage is a special one and I am so thankful that God prepared us for one another. We make a solid team in a world of chaos.

God bless you all this week,

Jake, Leah, and Malachi