Aaaannnnnndddd Breathe.

Did you hear that…yes, that was me breathing a huge sigh of relief as life is slowing down for the Carroll family.

After an insanely intense soccer week our team sadly did not advance to state after a tough loss last night. Jake and I really truly wanted to take the girls to the state tournament this year to compete but are still insanely proud of them for being District champs and Regional runner ups.

soccer2017

But always looking at the silver lining I must point out that our schedule just opened up tremendously…and the timing could not be better! Look at that bump!

IMG_7934

Malachi has had a great week and made it to school every single day. Monday was his big IEP meeting and went just fine. We are overall very happy with his classroom and love the teacher. She has put so much effort into learning Malachi and has accepted the challenge of learning his quirks and how to help him manage them. The classroom teacher and the nurse have both mastered spoon feeding Malachi and believe it or not can both successfully burp him, which is something we have been unsuccessful in teaching anyone else.

We also are implementing some inclusion for Malachi in the pre-school classroom every morning from 10-10:30. This means I have to get him there a bit earlier but we are figuring it all out. To get him to school by then requires me getting him up at 7:40. We have to have enough time to get him ready for the day and completely medicated and fed a big meal.

When I pick Malachi up each day he is usually giggling or will have a huge smile on his face and he absolutely looks forward to being there. They had an ice cream party this week and he got to eat a bowl of whipped cream, which was a pretty big deal.

As the days leading up to Levi’s arrival tick away I find myself in a panic mode as I remember all the things I won’t be able to easily do once we become a family of four. To-do lists are pasted on the walls like wallpaper as we scramble to get ready…new tires on the van, oil changes, haircuts, flu shots, grocery trips to stock the pantry, prescription refills on file, and so much more. We also put the final touches on the house this week and had it appraised for the final closing. We are hoping that process will be done before baby Levi!

Malachi loves being busy. He loves the excitement of zooming around town with momma, never quite sure of the next place we will stop. And he adores going to the soccer games where sometimes daddy and mommy yell out unexpectedly. But he did tire out this week and that led to some emotional meltdowns in the evening time when he was beyond the point of exhaustion.

IMG_7928

My goodness I love this boy.

In fact, my heart is breaking bit by bit each day as I realize that I am going to have to go 6 weeks without picking him up. Malachi and I are snuggle buddies. We love to sit together and we love to cuddle. Not being able to handle him is going to be such a challenge and has actually made me emotional this week. One of our common phrases in our home is “You can do just about anything for a short period of time.” I hope I can remember that throughout the six weeks.

We tackled round two of school pictures. We did manage to get a decent one but it totally has my baby bump in the background as I had to hold him for the picture. Malachi won’t mind being photobombed by his baby brother. When they send me the proofs I will be sure to share them with you.

Malachi and mommy had a date night this week as I am also realizing that our time of just the two of us is about to change. Jake wento a game with the team that was about three hours away, a trip that we just couldn’t justify with Levi. So instead Malachi and I went out to dinner and shared a sweet potato together. And that little stinker ate more than his half!

Alright, time for some Baby Levi updates.

We met with high risk this week and my radar was flaring during the ultrasound. Being a special needs mom you learn to read body cues from nurses and doctors and I could tell that the ultrasound tech saw something that concerned her.

She went and got the doctor who also took some ultrasound measurements. She explained to me that it looks like Levi’s growth is slowing down. Here is a quick summary of what is going on…

A few weeks ago we found elevated levels of protein in my bloodwork, which usually indicates there is a problem with the placenta. They couldn’t pinpoint a placenta problem, but it was a bit too early to see some of the ones it could be.

This week we think we have figured out the problem. It is a growth restriction issue called IUGR (Intrauterine Growth Restriction). It means that the baby is not growing like it should and could be due to a number of reasons.

In our specific case, Levi’s head, arms, legs, and other organs measured where they should be (at 31 weeks this past Wednesday- right on target) but his abdomen was much smaller (measured at 29 weeks instead of his actual 31 weeks). The doctor explained to me that IUGR is first spotted in the abdomen and then usually progresses to the other extremities. She is feeling confident that we are dealing with IUGR and is progressing as if this is the route we are headed.

So what does that mean for Levi? It means we are now going to be at the doctor several times a week for measurement checks. We are also watching him closely for signs of distress or blood flow issues. If we spot those it will be time for Levi to come on out and he will have to do his growing outside of the womb. There is an increased risk of stillbirth which is why we are being monitored so closely. If his measurements continue to drop off we will do a steroid shot and plan for an even earlier delivery.

What does this mean in the long run? It looks like I will be delivering another small little boy. Right now he is measuring at 3 pounds and 5 ounces. Children with IUGR can have temperature regulation issues which may require some time in an isolette. They also can have trouble with coordinating suck/swallow/breathe so we are now expecting that he will need to spend some time in the NICU.

We will be spending most of the next few weeks at appointments checking on his growth and will keep a close eye on his stress level so we are just going to take it day by day. But mentally we are working on preparing ourselves for the stress of having a special needs son, a newborn possibly in the NICU, and a mom that is out of commission post op for a bit.

If you have been following the blog for any length of time you have probably figured out that Jake and I rely heavily on our faith in times like these. Obviously we have been praying for a healthy, as full term as we can get pregnancy. Now that we are realizing that things might not work out that way we are finding ourselves modifying our prayers a bit.

This week as I have been praying over baby Levi and his growth I caught myself praying that God would give us strength as a family to get through a potentially trying time. Then I stopped and caught myself. Why wasn’t I spending my prayer time asking God to cause little Levi to grow and for the next report to clearly show that this recent one was a fluke? Why wasn’t I praying for a miracle? Why wasn’t I focusing my prayers on asking God to miraculously fix what science cannot?

When you have a special needs child you spend time praying for these miracles. And you spend the rest of the day dealing with the reality that sometimes you don’t get what you pray for…in fact, sometimes you get the complete opposite. While Jake and I continue to, and always will, pray for miracles for Malachi we also have to expand our prayers into asking God to help us manage the things that God has put in the “not yet” category.

But I have been challenged this week with the reminder that nothing is impossible for God. And we are never annoying or burdening Him with our requests, no matter how big or small they may be. So in addition to praying for miracles for Malachi we are asking you to join us in praying for miracles for Levi. Pray with us that God allows his body to catch up and the measurements from this week show no continued signs of IUGR. Pray with us that he stays safe and content in mommy’s tummy for 4 more glorious weeks.

May God bless you all this week.

Love,

Jake, Leah, Malachi, and Levi

Ready, Set, Go!

This week was the much anticipated Fall Break! We were very much looking forward to this week as a family and couldn’t wait to get some things marked off the to-do list. But in true Carroll fashion for each item we marked off we added two more leading to one jam packed week.

And let’s talk about Malachi…that boy NEEDS school. He was bored out of his mind this week simply hanging out with mom and dad. Although he did love having daddy home all day every day.

IMG_7783

So now for a brief run down of the week…

We met with subcontractors almost every day attempting to put the final touches on the house. We broke down boxes until our fingers hurt, spread grass seed and straw, cleaned, organized, hung pictures, ran to Lowe’s too many times to count, and jam packed our days hoping to gain some ground!

Malachi is a lover of all things routine and has managed to create one for the new house. He wakes up every single morning between 3:00-3:15, regardless of the time he lays down for bed. He will stay up for a spell then sleep for another 1.5 hours like clockwork. My goal this week is to modify that routine a bit but that is easier said than done when dealing with the brain of a four year old. Game on.

Tuesday was a big day for us as we tackled appointments. We started out early that morning in Chattanooga at the neurologist for a routine check-up. Nothing too exciting to report…more of just an obligatory appointment to get updated prescriptions for his seizure medications. Jake joined us, which was a pleasant change.

We had been saving a gift card to a nice restaurant in Chattanooga and we thought it would be a perfect day to have a date day and use it! After all, with Levi’s arrival most of our public appearances will come to a screeching halt. After a nice family lunch we raced to Cleveland to see my OB for a checkup. My blood pressure still looks great and Levi’s heart rate is wonderfully average. Oh, how that word has taken on new meaning for our family. We will have a high risk appointment this week and get to see his handsome face again.

Wednesday we tackled the basement and managed to make it look like a room. We had the youth group over that evening and we wanted them to have a place to hang out in the house if they weren’t interested in the bonfire. It was so refreshing to be able to prepare snacks in my new kitchen! Malachi also got to have some friends over to play and loved sharing his new toy room with them.

Before and After the basement cleanup

IMG_7819

The laundry room (with corner diaper chute) and the office

Thursday we started the process of rolling our construction loan into a mortgage. We figured we needed to accomplish as much of the process as possible prior to Levi’s birth, and since we are hoarding Jake’s time off for maternity leave we thought it would be a good week for the initial meetings and paperwork. Building this house has been such a wonderful opportunity for our family and we are so extremely grateful for the opened doors God has provided. But we will be overjoyed to have the construction process completely behind us!

Friday was our designated “breath” day. We stayed in most of the day and played, played, played. But Malachi quickly reminded me that his little body and brain need more than just being home all day so Saturday we had a mommy and Malachi day out. We went to Target where he got to pick out a toy, ate a pancake with mom at Cracker Barrel, and found ourselves in Lowe’s yet again. He loved every minute of it! That boy is always up for an adventure.

Here is a video of him playing on his therapy swing. I want to point out his amazing head control and his ability to respond verbally!

The soccer team that we coach is absolutely amazing this year. The girls continue to impress us game after game- something that we would love to take credit for but can’t. They are just a very talented group of girls. Our regular season has ended but the girls won all of their district tournament games making them District Champions! Amazing! The games will continue through this week and next until they lose or (best case scenario) win the State Championship. I am still doing my best to coach and remain stress free at the same time. It does, however, require me to look away from the game frequently haha.

IMG_7849

We did our best to keep Malachi engaged this week in between all of the errand running and chaos. But I think we failed haha. He is just too social for a week at home with his parents. This morning at church was the wildest that he has ever been- he was practically jumping out of our arms and belting the songs out as loud as his little lungs would allow. Everyone he meets is now a potential friend and he gets giddy when strangers say hello. He is also actively seeking attention from strangers and succeeding so we make a lot of new friends these days.

We finally got his wheelchair stroller all hooked up to accommodate Levi’s car seat- thank you special needs mommas! Malachi thought it was funny to have Elmo in there. He also got to go on some walks with daddy and Boomer this week on our new road.

IMG_7803IMG_7805

He is still completely fascinated and in love with our new house. His new big boy shower is his favorite and we spent time in there this week just letting him play in the water. He giggles each time he gets sprayed and it has been such a huge blessing to be able to help him enjoy his bath time again. With momma unable to bend down, bath time was becoming a rare thing and when it did happen it was rushed and boring.

Jake had the opportunity to preach this morning at church. As he prepared his sermon this week he practiced it on Malachi and I. I guess Jake’s “preacher” voice is a little too serious and Malachi was not a fan at all of the change in his inflection. Bless his little sensitive heart. He thought Jake was mad at him, which obviously mortified Jake and led to some father son bonding time.

Today was an extra special day as some friends from church decided to throw us a baby shower. They had asked several weeks back about hosting one and I reassured them that it wasn’t necessary as we had kept everything (and I mean everything…hence the crazy basement picture) from Malachi. They decided to throw one anyway and instructed all the guests to bring diapers, wipes, or a gift card.

The shower looked like it came straight out of a magazine and we were blown away by the generosity of our church family. We are now feeling even more prepared than ever with nearly 15 packs of diapers, 20 packs of baby wipes, and gift cards to fill in the gaps.

IMG_7866

It felt so strange to be at a baby shower for our baby. Malachi had an amazing one that we came home from the NICU for one Saturday. It was an absolute blessing as we were very unprepared to bring him home from the hospital. But today’s felt oddly different as I was actually pregnant with the child we were celebrating.

IMG_7869

The nearer we draw to Levi’s birthday the more sentimental I find myself becoming. I decided this weekend that I needed to go ahead and pack my hospital bag just in case, and it surprised me to find that the act of packing that bag is a “trigger”. It keeps taking me back to the night Malachi was born and how completely unprepared I was.

IMG_7871

I keep getting flooded with those emotions I experienced in the hospital- embarrassment mostly- that I didn’t know what I was doing. I didn’t know about breast pumps and nursing bras. I didn’t know about c-sections and the changes my body would go through post-op. I am a planner by nature, yet I was completely ignorant…I just didn’t have enough time to prepare!

As I think about the next few weeks I find myself getting more and more anxious. I am already having flashbacks to the last time I was in the operating room. I remember stretching my arms out, crossing my legs like they told me to, and watching a woman over me holding a scalpel frantically asking “Can I cut?”

Those minutes were some of the worst memories I have. And as hard as I try, my mind won’t allow me to forget the fear and dread of the unknown in that moment.

I want to look forward to the moment I will get to meet Levi and hold him close to me, but my mind and heart keep cautiously warning me to not think about such things….almost as if anticipating the worst will protect me from more disappointment. It is so hard to put these feelings into words for you.

I have had to focus intently on scriptures this week to help combat these crazy and intense emotions floating through me. Here is one I keep reciting to myself…

Isaiah 26:3-4

“The steadfast of mind You will keep in perfect peace,
Because he trusts in You.
Trust in the Lord forever,
For in God the Lordwe have an everlasting Rock.”

I can remind myself of this verse every three minutes, yet I still find myself in moments of doubt. The devil is good at his job and takes it very seriously!

But I must find comfort and hope in the fact that God’s will MUST prevail. God has a plan for Levi’s life…even down to the details surrounding his birth. So as hard as it may be, my job is to continue to trust that God’s ways are greater than my own.

So the hospital bag has been packed. The plans are in place, and we are going to continue to believe that we will have a problem free delivery. We are going to believe in some normalcy….beautifully pure normalcy.

This week we will be juggling some biggies….Malachi’s IEP meeting is tomorrow and his make-up school pictures are also this week. He could not be more excited to go to school in the morning and has been doing his happy dance all day when we talk about tomorrow. He will also pick back up with his horse therapy making the day an extra special one. Jake is also just as excited to go back to school. He says that staying home is WAY more work haha! Preach it!

Please continue to keep our family in your prayers as we inch closer and closer to a new life transition. Pray that God continues to provide us with the wisdom we need to raise Malachi.

May God bless you,

Jake, Leah, Malachi, and baby Levi

 

 

 

Tying Up Loose Ends

Malachi’s junky breathing from last Sunday continued- not getting any better or any worse as the week progressed. Jake and I always struggle with wisdom in situations like these…do we take him in to the doctor and risk exposing him to something worse or do we just wait it out and see?

His only symptom was that he wasn’t able to breath through his nose. He wasn’t showing any signs of being sick, no drainage, nothing alarming to us aside from not being able to breath freely and more drool than normal. By the time Wednesday rolled around we were both getting more worried it could be something else.

IMG_7755

After a rough night with Malachi I prayed and asked God to give me wisdom on whether or not to take him in. Within about thirty minutes he threw up some mucus and it had a little bit of blood in it and that was the push I needed (blood can mean possible pneumonia). I loaded him up and took him to the pediatrician; they have walk-in sick hours from 8:30a-9a, and I got there early hoping to be the first patient to sign in. Unfortunately when I walked in 20 minutes early there was already a full waiting room and the sign in sheet had things like strep throat and possible flu under the “Reasons for visit” line and I started to doubt my decision to bring him in.

The nurse behind the counter graciously found us a back room to wait in instead of staying in the public waiting area. We checked Malachi’s oxygen saturation which was at 96- his norm. She listened to his lungs which sounded clear. We just agreed to wait and watch and I am glad we did as he is almost back to normal.

Because of the unknowns I did keep Malachi home from school several days this week. Whenever he misses school he is absolutely WIRED by bedtime. We try to keep him active at home but with us unpacking boxes and being boring parents this week, we just don’t seem to be doing a good enough job wearing him out each day. He had a solid day at school on Friday and that little sweetheart slept for nearly 7 hours straight that night!?!? What a blessing it was to mommy’s very achy body.

This picture was taken Friday morning as I tried to get Malachi ready for school on limited sleep. Let’s see if you can spot the issue here; the sad part is that it took a solid ten minutes for me to realize what I had done:

IMG_7748

Here are some pictures of Malachi last week at our annual church picnic on the mountain. This is Ms. Lisa who keeps him in the nursery on Sundays and Wednesdays.

IMG_7693IMG_7691IMG_7692

Malachi is smitten with his new house. He loves everything about it, and when I mention us going home he is overjoyed. In addition to him sleeping longer than normal a few nights this week, he is also falling asleep faster when he does wake up in the middle of the night (30 minutes up as opposed to 2 hours).

Here is Malachi’s therapy room as well as another snapshot from the living room into the kitchen area. We put the swing up higher so I wouldn’t have to bend so much to lay him on it.

IMG_7760IMG_7759

Boomer dog on the other hand is still adjusting to the change. He is 12 years old and a little anxious with change so this has been huge for him. He is terrified of the tile floor and will run from carpeted room to carpeted room like he is walking on lava. Baby steps. And Malachi is so incredibly happy to have his dog back!

IMG_7703

Malachi had his first shower in his new bathroom today. I couldn’t believe how easy the process was and painless for momma. I started him out a little too reclined in his shower chair which he was not a fan of…he acted like I was waterboarding him. But after he got to sit up he giggled with joy at the idea of water shooting at him. It was the most thorough I have EVER been able to clean him as maneuvering him in the tub was always tricky. He is one squeaky clean boy.

IMG_7763

Baby Levi is scheduled to arrive in just 4-6 weeks! As we get nearer to that goal Jake and I find ourselves trying to wrap up as many obligations as possible so we can go off the radar for several weeks when he comes. Our regular soccer season ended last week and our team is playing for the district championship this week. They are a very talented group of girls which means that we will likely be playing in regionals next week and will continue through the ranks until we lose.

Someone snapped this picture last week of me with one of our assistant coaches- I am looking awfully pregnant haha! And grandma on babysitting duty.

IMG_7690

We also like to keep the youth group active with at least one outing a month so we took them for bowling and pizza this evening and plan to have them over Wednesday for a bonfire. We have explained to them that we will not be able to plan many more events until after the New Year and they seem to understand. We have also lined up a substitute teacher for the Wednesday night and Sunday night Bible studies so we can take a small break as a family.

It is unreal how close we are to being a family of 4! So exciting!!

Jake has the week off for Fall Break (a southern thing). We sat down and made a list of goals of things to accomplish during the break and I am so ready to tackle some of the big things left on our list. We will have a medical day Tuesday as we take Malachi to the neurologist and I will visit the doctor, but the rest of the week has been reserved for chores.

This past Friday was World Cerebral Palsy Day- the goal being bringing awareness of CP to the world. I watched this video clip that someone online shared with me and I found myself getting emotional as this father talked about raising his son and the ways it has changed his parenting goals. I thought it would be nice to share with you…particularly the 1 minute 20 second mark and on. It does an excellent job summarizing a lot of the thoughts we have as Malachi’s parents.

This week has been surreal for us. As I look around at the blessing that this house already is to us, I find myself being overwhelmingly grateful that God has blessed us so much. I look at the path this last year has led us on and time and time again I see the hand of God gently guiding us.

There is a verse in the Bible that comes to mind:

Isaiah 30:21 “Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.”

Embarking on this process was such a huge step of faith for our family. As Jake and I talked about our future goals in life we always discussed how we would try our best to rely on God to open and shut doors as He saw fit. It is so difficult to look past “wants” and not find ways to justify them as “needs”.

But we have watched God lay a path for us in the last year that is more beautiful and breathtaking than anything we could have ever imagined or mustered up to do on our own. He has been so gracious to us.

So “thankful” has been the word of the week for me. I repeatedly find myself simply looking around the room I am in and shaking my head in amazement that such a beautiful place has been entrusted to us. And what a challenge to Jake and I to be good stewards with what God has helped us create.

My eyes are starting to cross and that little monkey of mine just went to bed! So it is time for me to wrap it up and call it a night. Thank you for checking in, and I hope to have some pretty amazing reports for you next week!

God bless,

Jake, Leah, Malachi, and Levi Carroll

 

Whirlwind Week

Wow what a week this has been! Challenging yet amazing in so many ways!

Let’s start with Malachi updates. Malachi has had a quirky week with his health and we are not quite on top of it all yet. On Tuesday we went to a soccer game and noticed he was getting a little warm. The temperature was mid 80s, which isn’t too crazy for around here, and usually he manages just fine but that evening he woke up with a temp of 103. He didn’t have any other signs or symptoms of being sick so we figured it was just one of those quirky brain things. The hypothalamus in the brain controls temperature regulation and we know that part of Malachi’s brain is very damaged.

So we started the routine of trying to slowly lower his temperature with removing clothes, turning on ceiling fans, etc. and within a few hours his temp was dropped close to normal. But in true Malachi fashion it continued to drop and went down to the low 96 range. We have been battling this for several days and he is still running a little colder than his normal so we are watching him like a hawk.

IMG_7674

Yesterday morning he woke up with an added symptom of not being able to breath through his nose. There are no other signs of sickness aside from his mouth breathing, and let me tell you- he sounds TERRIBLE!! He sounds like a mix between a dragon and a gremlin, enough to turn heads wherever we go. But I am still not convinced that he is sick! I am thinking it is simply allergies so we are giving him Claritin and watching him closely for it to progress into something else.

Poor little Malachi doesn’t understand why he can’t breath normal and last night he kept waking in a panic, which  is so hard to watch. I am keeping him close to me at night so I can monitor him and comfort him when he gets scared. He is sleeping a few minutes every hour which has been very challenging for this pregnant momma who needs that physical (and mental) break that night sleep provides. So please pray with me that his little nostrils open up and he starts breathing normally again.

Malachi had a visit with the neurosurgeon this week and everything checked out great with his shunt. We are hoping to be moved to an annual visit instead of bi-annually, which he promised us he would do next time. The appointments go like this:

-We wake up at 6:00 in order to get on the road and to the hospital by 8:00. Malachi stayed up most of the night and literally cried and pouted when I woke him up to leave (as did his momma haha).

-We drive over an hour in rush hour traffic to the hospital

-We search for over 20 mintues for a parking spot. Handicap spots at the hospital are few and far between, so we usually end up on the third floor of the parking garage and have to take several slow elevators to get to the main entrance.

-We check in at the registration desk, along with at least a dozen other people there for various surgeries, procedures, appointments and we wait (typically about 20 minutes)

-We register and sign insurance paperwork then go to our actual appointment where we sign in and start the second waiting process

-Malachi goes in for triage (temp, weight, blood pressure, etc) then we are taken to an exam room where we start the third waiting process

-The doctor comes in to see Malachi. The appointment lasts under two minutes total. He asks “Any new issues or concerns?” I reply “nope”. He feels his shunt and says “Okay, we will see you in 6 months.”

We are very grateful that his shunt has remained problem free and our appointments are so simple! And I understand the surgeon’s desire to keep a close eye on each patient, but I wish I could convince them that I am trustworthy enough to not need the routine 6 month check-up, especially during pregnancy!

IMG_7620

He still loves looking out the car window, especially when Grover is with him haha. The semi trucks are now more fascinating than terrifying.

From the hospital we headed to get Malachi’s AFO braces adjusted. They were just a little too tight in the ankle area and needed to be heated up and remolded a bit. The man that works on his braces is extremely accommodating and worked us into his busy schedule to keep us from making another trip to Chattanooga.

Malachi missed several days of school this week due to his temperature issues and appointments, but the days he did go he did excellent. In fact, we were able to bump him up to four hours a day and he seemed to like it much better. I took his activity chair over since we were moving it out of the house anyway and the classroom teachers have been letting him spend some time in it each day- he has been “over” his wheelchair at school as he wants to sit up like the big kids.

His teacher sent me this picture of Malachi painting! You can see his temperature struggles in his color and around his eyes.

IMG_7641

He also had his first school vomit and they handled it like champs getting him up and leaned forward quickly. I love how willing they have been to learn Malachi.

A quick Levi update: We are at 29 weeks and things look great. We met with the high risk team this week and got to see him via ultrasound. He is measuring 2 pounds 10 ounces (Malachi was born at 1 pound 12 ounces) and everything is on target for growth. We will go back in three weeks then be put on weekly appointments with them.

The biggest update from the week: WE HAVE MOVED!! I can’t even put into words how much this new home is already changing our lives. That sounds so dramatic, but I am not over-exaggerating in any way. The ease of simply getting Malachi in and out of the house has been a game changer for me and the entire environment is so easy to take care of him in. Malachi absolutely loves it here and has settled in nicely.

One of the biggest noteworthy things has been in Malachi’s vision in the new house. We put in big windows with lots of natural light and he is able to see so well. I took some pictures this week- take a look at that eye contact!

IMG_7585

As you can see, the house is not 100% done, but we were very eager to get moved in. Hopefully we will be able to finish it all up this week.

IMG_7609

We were SO BLESSED to have more than 20 of our friends and family join us early Saturday morning to help move our things. They took charge and even set up our beds, sheets and all, so we would have a place to sleep that night. Everyone pitched in, young and old, and we had the rental emptied by lunch. Our new neighbors brought a crock pot of soup by for dinner and Jake and I crashed.

IMG_7644

IMG_7652

IMG_7651

Malachi has thoroughly enjoyed the transition process and has been cracking us up with his excitement. The highlight of his day today was going to get Boomer dog and bring him to the new house. Malachi was giddy with anticipation and the two have been side by side since.

IMG_7582

So yes, a whirlwind week for sure…especially on the emotions. But there is something so surreal and satisfying about being in the new home. I can’t even explain how much joy it has brought my soul to finally breathe a sigh of relief as I look around at the ways in which Malachi’s future will change because of this home. Such a level of independence for him.

We are so incredibly blessed and can’t help but see the hand of God in all of this. 

We are going to be spending the next week (well, realistically speaking I should say months) unpacking boxes and finding a new routine.

My thoughts this week keep floating to little Levi and the wonderful chaos that he will add to our family. I firmly believe that God has prepared a life for him that is so wonderful and I get so excited thinking about the mighty ways in which God will use him.

I also can’t help but dream about all of the changes we will get to see in little Malachi as he tries to mimic his little brother. What a fun adventure we are about to embark on as a family of four.

Please continue to pray for God’s timing in my pregnancy. We always dance on that line of wanting Levi to stay in as long as possible, but also wanting to be 100% certain we aren’t jeopardizing his health and safety in any way. Pray that Malachi’s health stabilizes and he is able to breath and function normally. And join us this week in thanking God for the many blessings He has given to the Carroll family!

Much love,

Jake, Leah, Malachi, Levi, and Boomer dog

 

 

Shenanigans

Malachi made it through another full week at school without any issues or sickness. Each week that passes he falls more in love with his new routines. In fact, this morning as we were getting him ready for church he yelled the name of one of his favorite teachers. We had to explain to him that he wasn’t going to school today, but would get to go to church instead which seemed to appease him.

IMG_7553

Malachi on his new front porch!

School has made him Mr. Independent in so many ways and Jake and I have been thoroughly entertained by his new possessiveness over things. This week I was feeding him applesauce at dinner and I stole a bite. Malachi saw me and stuck out his jaw, giving me the “how dare you” look. He started swinging his little arm at me, insisting that he get the bites instead of mommy.

He is still being a little stinker in his seat- trying his absolute best to get out of it. It always makes me cringe in pain when he does this- it can’t be good for his neck, but he thinks he is a real comedian when he gets like this.

IMG_7502

I snapped this pic of his angry face this week to share with you. He gets very defined forehead divots when he is really mad. His expressions are developing more and more each day. He even rolled his eyes at one of his teachers this week…something he does frequently towards me and my shenanigans.

Malachi had his first school meeting this week. It was a meeting with the school psychologist talking about what category he should fall under for special education services. This step has to be done before we can talk about his IEP. Let me tell you all, it was so odd being the parent in the room instead of the teacher leading the meeting. What an odd turn of events life has taken. I am very grateful though for my years as a special education teacher prior to having Malachi as it has familiarized me with the process and laws.

Jake and I are very excited to tell you that it seems that we may be moving this week into our new home! It looks like all the finishing touches will be completed by Thursday and we will be having church friends (and anyone else local!) help us move our things in on Saturday. I am so excited about this transition. I am looking forward to Malachi’s shower more than anything else as bending at the waist is no longer possible. Bring on the accessibility! We have been spending a lot of time over there this week cleaning and organizing.

Here is a picture of the front. As you can see, we pull up right in front of the door and wheel him onto the porch. If it is raining, we made the front large enough to back the van under and get him out on the front porch without getting wet. Our porch columns should also get done this week!

IMG_7528IMG_7539

Here are a few updated pictures from the inside.

IMG_7534IMG_7531IMG_7566

Baby Levi’s appointment went well this week. We will see high risk on Wednesday and get to see that sweet little face again. I am 28 weeks today and definitely feeling pregnant.

IMG_7490

My emotions are still a little haywire these days. As I have said over the last few posts, I am sure that pregnancy hormones have something to do with it but regardless it has been a struggle. I keep finding triggers that bring up such hard memories for me. Very odd and simple things keep happening that take me back to Malachi’s NICU days.

For example, I recently dug out my maternity clothing. The last time I wore these clothes was in the weeks following Malachi’s birth as I traveled back and forth to the hospital to be with him. This week I put my hands into the pocket of a jacket and was flooded with emotions as the depth, feel, and placement of the pocket reminded me of the hundreds of times I put the Ronald McDonald key into it.

Simple things but loaded with so many raw and un-dealt with emotions.

Malachi hasn’t been very consistent with his sleeping leaving me a little more sleep deprived than normal. Lack of sleep also increases Malachi’s seizures and this week has been a little unpredictable for both of us. Wednesday night was a rough one, with Malachi falling asleep right when it was time for us to load up and head to school. I chose to delay his day a bit and let him sleep on me, taking him in late.  I dropped him off and as I headed back to my car the tears began to flow.

I read an article this week titled “38 Ways to Tell If You Are A Special Needs Parent”. As I read #35 I couldn’t help but relate.

#35) You are always fluctuating between feeling like a boss, and feeling totally unqualified to raise your child- sometimes within the same hour. 

Let me tell you all- most days I feel completely and utterly lost in our world. I am always second guessing the decisions I make for Malachi and have to daily rely on guidance from God. On Thursday as I got into my car and the tears were flowing down my face I simply told God “I am worn out.” I immediately flashed back to a night I had when Malachi was in the NICU and I verbalized this same cry to God.

Both times, lyrics to a song immediately came to mind. I have typed out the lyrics for you, bolding the lines that have hit my heart hard this week:

I’m tired
I’m worn
My heart is heavy
From the work it takes to keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn
I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
And my prayers are wearing thin
I’m worn even before the day begins
I’m worn I’ve lost my will to fight
I’m worn so heaven so come and flood my eyes
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Yes all that’s dead inside will be reborn
Though I’m worn
Yeah I’m worn
Exasperation this week has been a pretty strong emotion. I have been praying hard for patience with Malachi, particularly with his seizures. I know that his little brain can’t help it but I have found myself getting so frustrated by them. Completely irrational, I know.
Every ounce of me longs for Malachi to be healed of his epilepsy, and to not have to experience another seizure ever again. My mommy heart can’t take seeing something so unnatural overtake his body in that way.
So long story short- please join me in praying for Malachi’s brain to be completely healed. And pray with me that I can armor up against the attacks of Satan and practice a patience that can only come from God.
Malachi and mommy have some big appointments this week with lots of running around- therapies, neurosurgery check-up, AFO adjustments, baby appointments, etc and we need a week filled with a strength and determination that can only come from God! And keeping things as low stress as possible to keep Baby Levi comfortable!
Thank you for checking in on our family this week. You taking the time to walk our journey with us brings us encouragement.
Much love,
Jake, Leah, Malachi, and Levi

Sitting Up Straight

Another great week in the books for Malachi! He was able to go to school every single day, and he is up to his maximum time (3 hours). I take him in each morning at 10:00 and spent about 15 minutes getting any last minute burps out before I leave. The teachers are learning how to burp him, but until they have it mastered, this at least buys them some time before he needs to be burped again.

This may sound odd, but Malachi is having less seizures at school than he is having at home. I think him being mentally engaged continuously has something to do with it? Either way, I am thrilled by this!

His teachers are successfully feeding him a pouch of food a day by spoon and he is learning how to be vocal to them about his wants. He absolutely loves being able to make decisions, so they give him several opportunities each day. For example, this week they allowed him to decide which teacher would feed him “bite bites” and he was very specific about his choice, using his frown face for one name and his yes dance for the other.

He is also sitting up even taller than last week! His desire to be a big boy is greater than ever. We were able to get him to a complete upright position at the table this week…he was fascinated by the process.

IMG_7389IMG_7392

Malachi also loves routines, so this full week at school was exceptionally wonderful in his eyes as he was able to follow the exact same morning routine each day. Each day I tell him the plan from start to finish and his eyes light up with anticipation. Mondays seem to be his favorite as he gets to go to school, then horseback riding, then soccer.

This coming week is a big one as we will have Malachi’s first ever Individualized Education Plan (IEP) Meeting to discuss his needs and goals for the coming school year. These meetings can get dicey for some parents, but I don’t anticipate any big issues as they have been accommodating thus far.

On Saturday we took some of the youth group to serve at the local food bank. We do this every September and are always so proud of the teens that make the decision to give up their sleeping in to serve others. Malachi has gone every year (even in mommy’s tummy) and is simply fascinated by the chaos involved with filling the bags.

IMG_7463

Baby Levi is doing great and is still as opinionated as ever. In fact, this week he was kicking at Malachi so hard that Malachi’s leg was coming up off of my belly. We will see the regular OB this week for a checkup and the dreaded gestational diabetes test, something I never made it to with Malachi’s pregnancy. Then next week we will meet with high risk where we will get a look via ultrasound at Levi. They will take measurements and gauge how things are progressing, and then we will likely be going to weekly appointments from 30 weeks and on.

The goal is still to deliver between 34-36 weeks and today I am at 27 weeks. Not much time left! Our other goal is to be in the new house as soon as possible, as in THIS WEEK! We are having a hard time getting the subcontractors to follow through with their promises that they will show up and work. But we are very close to being finished.

A few weeks ago I shared our school photo flop with you. It was an emotionally hard thing for me, and sparked emotions again this week as the photos came back. This is the final product from the photographer who said this “was the best one”.

IMG_7417

Obviously we are still planning to do re-takes.

While receiving this picture did spark emotions, it did not open the floodgates like another encounter this week did.

In the special needs world there is something called a Durable Medical Equipment Provider (DME). These companies help with any big items like wheelchairs, standers, and other specialized medical pieces of equipment. When Malachi was younger we connected with an amazing DME in Chattanooga that always went above and beyond to help get him the equipment he needed. They also took the time to learn him and his needs to better serve him. Several months ago we found out that our insurance company was no longer working with this DME so we had to start the process of finding a new one.

Malachi is about to outgrow his special crib mattress which is made by a company called The Comfy Lift Bed. They make a larger, twin sized version of the mattress and the time has come to try to snag one. I made the phone call in April to the mattress company to see which DME they would contract with and they gave me the information for one in Chattanooga.

Here is the process for getting Malachi equipment:

  1. You have to get a prescription from a doctor
  2. The DME evaluates your child to see what size he needs
  3. You have to have a letter of medical necessity explaining why he needs this exact piece
  4. This letter needs to be signed by a doctor
  5. It then gets submitted through insurance for approval or denial
  6. A few months later you receive the product or you get denied and fight to appeal

So back in April I began this process. In early May we had the prescription in hand, the DME evaluation, and I sent over the letter we used to successfully get Malachi’s toddler sized mattress. The hard part was done!

Since May I have been contacting this DME to follow up on steps 4-6 and was promised repeatedly that it “would get done this week!” Time after time I was told this and time after time I would not hear any response from insurance.

Finally three weeks ago I was given the impression that it had been sent to insurance and we would hear something soon; the typical turnaround for insurance decisions is 2 weeks. When I hadn’t heard anything on Friday I contacted insurance to see where we were at in the process only to be told that the request from the DME had never been received.

Maybe pregnancy emotions played a factor, but I was beyond floored that once again I had been misled. I contacted the DME to find out that it still has yet to be sent to the doctor for a signature. They predicted that it would be several weeks before it was officially submitted. And then several more weeks to get the product in hand (assuming it is approved).

This absolutely shook me. I am Malachi’s advocate. I have to fight for him, and I felt like such a failure. I should have pushed harder, investigated further, switched to a different DME. But I kept assuming that the promises that were being made were going to be followed through.

And then I grew angry. Very angry. Angry that on top of my ever growing to-do list was making sure that other adults were staying true to their word. I was angry that I even had to fight this battle…that people in my special needs world didn’t recognize the importance of meeting Malachi’s physical needs.

I was angry that I have to keep fighting. I was angry that my life requires me to be vigilant and pushy.

And then the thought hit me…he is four years old. This is only the beginning of our struggles.

For the rest of my life, I am Malachi’s voice. I am Malachi’s warrior. I am Malachi’s forever Momma Bear. And the tears flowed. Not because I am not up for the challenge, but because I am required to be a master at something that I have zero experience in. And I can’t afford to fail.

Some days I feel so out of place and ill prepared for the path we are on.

But as I have mentioned before, the pity parties that come can only last a few minutes or they consume me. So I cried silently into my pillow, stared at my little warrior boy laying next to me, and decided to put the armor back on in the morning and go back into battle.

Side note- the bed situation has not been marked “urgent” by the DME and we should be hearing from insurance within a month or so. I have expressed my concerns to all involved and I am hoping and praying that other special needs families aren’t treated in the same manner in the future. Sincere apologies have been made and I am hoping that their actions will back up their words.

Phewwww- it is not often that I allow myself to vent, as I think the more you dwell on negativity the more it becomes a part of you. So I am going to wrap all those bad emotions up and send them on their way now. Thanks for listening to my rant.

IMG_7478

Malachi is continuing to move mountains. His Chick-Fil-A story is continuing to spread all over the world, which is absolutely fascinating to me! About two weeks ago it appeared on a new website and has been viewed over 4.5 million times in two weeks. I had another reporter contact me Friday to share that it will be posted on another website this week.

The more I process that whole encounter the more I see God’s hand in it all. It amazes me the way He works!

There is a sweet little girl at church that is close to the same age as Malachi. They are best buds and she sees him as just another little boy; their friendship warms my heart.

Her mother pulled me aside this morning to tell me that they had gone out to dinner over the weekend and saw another little boy around the same age as Malachi in a wheelchair. When this little girl saw him, she assumed it was Malachi and ran over to talk to him. As soon as she realized it wasn’t him, she talked to him anyway just like he was her buddy Malachi. The family was so receptive to her coming over and talking with their son and the families had a great conversation.

It is those moments that warm my heart- knowing that through Malachi this little girl has learned to love others, regardless of their differences. I think about how the encounter must have also warmed the hearts of this other family and if they are anything like me, caused tears to flow later that evening as the mom reflected on the moment.

I love that God is using Malachi to teach others how to love like He does.

And one more side note- if anyone knows a local family with a four year old boy named Lincoln, I would LOVE to be connected with them! This is the second time someone has told me about this boy and it sounds like our families would have a lot to talk about!

Thank you for taking the time to read my rants tonight. And thank you for continuing to pray for Malachi and our growing family. Life is about to get bonkers for us, and your prayers for strength and wisdom are very much appreciated.

God bless,

Jake, Leah, Malachi, and Levi

School Changes A Boy

Malachi has had a great week and had a new “first”…for the first time ever he was able to avoid getting a nasty cold that I had come down with! This is so huge in Malachi land as we literally sleep face to face at some point throughout the evening/morning hours. I think his little immune system is getting stronger.

We had some pretty big appointments this week that kept us busy. Malachi had a checkup with the Gastroenterologist (GI) and he seemed pleased at his weight gain. Malachi’s goal based on his size and age is to take in about 720 calories a day, but children with CP can burn more calories than normal with their muscles contractures. These days he is taking between 740-760 calories each day and gained 2.5 pounds over the last three months bringing him to 29 pounds. He is still small for his age, but his BMI (body mass index) is at 70% which satisfies the doc.

IMG_7299

Personally speaking, Jake and I don’t focus on numbers with Malachi. Instead we focus on how he looks and acts, and we are confident that he is getting appropriate nutrition right now. Honestly, I am not eager to fatten him up much at this stage anyway as I am reaching a point in my pregnancy in which it is harder to lift and care for him.

Malachi also got his new AFO boots this week! That also means we went by the New Balance shoe store and bought him a new pair of shoes to go over the boots. They are the only local company that makes extra wide shoes that can fit over his braces, and he has to have hard soled shoes for his weight bearing in his stander.

Malachi had Monday off from school for Labor Day but was so excited to go back on Tuesday. Wednesday and Thursday there was some sickness floating around the classroom so we made the decision to keep him home both days. We purposefully set his school time to be 10-1 so they can identify any sickness issues in the morning and let us know before we bring him.

But let me tell you…this boy LOVES going to school! We are seeing some major behavior changes in him over the last few weeks. For example, he loves the attention he gets at school. People are there to talk to him and give him undivided attention, which he absolutely craves. So now when he is at home he will find ways to “get into trouble” to keep our attention focused on him at all times. He used to simply be mischievous, but now he is full fledged ornery. We now have to keep him occupied with a steady stream of different toys to keep his mind engaged!

As much as we love seeing him do normal 4-year old attention seeking things, he is becoming a little dangerous to himself so we have to correct him way more than we used to. This usually leads to hurt feelings and lots of hugs haha. Jake has been trying to be stern with Malachi but can’t handle it for more than about 5 seconds…he is such a softy. Here is an example of one of his new favorite attention seeking schemes:

But one of the major positive changes we are seeing is in Malachi’s desire to sit up tall in his equipment! He is starting to realize that he can see things straight ahead when he sits up and doesn’t need to crane his neck to the side. We are able to incline his chair more and more each day, which is such great progress. I took a picture at lunch today because he was sitting up like such a big boy, and you can also see the improvement in eye contact at mid-line. He is not smiling, but it is because we had a long night and he was ready for a nap:

IMG_7372

School is also turning Malachi into a social butterfly. Everywhere we go now, he is looking for people to interact with him and is using his words more. Overall, we are very happy with the changes we are seeing in him.

This week Malachi stayed for just over 2.5 hours each day! Every morning that he goes to school he and I talk about how “mommy is going to go bye bye but she will come back!” He is slowly but surely getting the concept figured out.

Baby Levi is doing great! I have some slight nerve damage issues in my hand from where they placed the IV from the crazy hornet situation but it is slowly improving. Caring for Malachi is continuing to get more difficult the larger I get, and I need everything else in my body to cooperate! The loss of function in one hand has been hard to adjust to. But praise God for 26 weeks…only 10 more to go.

The more time I spend in prayer over Levi the more excited I get about his future. We can never predict what path God will take our children on- Jake and I know that more than most. But there is something so exciting and wonderful about the unknown ways that God is going to work through him.

This week I have been thinking and praying specifically about Levi’s future faith. I have found myself wondering how much having a brother like Malachi will draw him closer to God. I also think about the character that he will develop having to learn selfless love at such a young age. He is going to have to learn that his world must revolve around someone else’s needs, and this is a tough lesson for a little boy. But the character that it will produce is going to be something special.

I also think about the future conversations Levi and I will have about his brother. About why God hasn’t healed him, or why he was born this way. I think about the prayers little Levi will lift up to God asking him to make his brother walk. And I think about the hard lessons Levi will have to learn about the mysterious ways of God.

Isaiah 55:8-9 “For My thoughts are not your thoughts, nor are your ways My ways,” declares the Lord“For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts.

What a parental challenge we have headed our way, but one we are glad to take on. In my prayers I find myself asking for wisdom to know how to answer the tough questions that will come my way.

But oh, how Malachi is going to love his baby brother.

Please continue to pray over our family this week. Pray that Levi continues to grow, problem free and as full term as possible. Pray over our family unit as we struggle through the limitations pregnancy puts on our routines. Also pray that I am able to protect my mind from the attacks of the devil. Lately I have found myself focusing on something called SUDEP (Sudden Unexpected Death of Epileptic Patients). Sadly there have been several cases this month in our support groups involving children close to Malachi’s age and the fear has been crippling. I love him so much- imagining life without my Malachi is something I can’t (and shouldn’t) do.

And for anyone who may be concerned, please be assured that we are on the outskirts of the incoming hurricane weather and it looks as if we will only be getting some major rain over the next few days. It will delay move in day for us a bit, but that is pretty low on the concern list right now in the grand scheme of things.

Thank you for checking in with our little family!

Love,

Jake, Leah, Malachi, and Levi

 

 

 

Oh The Irony…

I am so proud to announce that we have made it to the 25 week mark with Baby Levi!! This is officially the longest that I have ever been pregnant and we couldn’t be more thrilled. Here are some half-hearted attempts at a cute pregnancy photo. I have a keen ability of being awkward regardless of the situation so enjoy the “Where do my hands go?” face.

 

But what would week 24 be without a little bit of irony thrown in the mix…Before I go any further let me reassure you that Baby Levi is doing great and our appointment with the high risk doctors went well. No new concerns on the radar and the things we are watching are unchanged, which is a good thing. He is 1 pound 7 ounces and loving life in mamma’s tummy.

IMG_7141

This was the first ultrasound in which Levi cooperated and stayed still long enough to get a few good profile shots. He spent most of the 30 minute ultrasound playing with his fingers and resting his hands on his head.

Now time for the irony. Yet again, at 24 weeks pregnant, Jake had to drive me to the emergency room. The last time we visited this ER was the night Malachi was born, so the emotions were roaring within me.

Long story short, I was walking at soccer practice and was attacked by hornets. They stung me once in the face, four times in the arm, and twice in the pregnant belly. Yup, you read that right. NEVER been stung by a hornet in my life, but just so happens that I got stung twice IN the pregnant belly, AT 24 weeks. Lovely.

After the initial shock wore off I went and sat in the car to see how my body would react to the stings. I didn’t want to drive anywhere in case my breathing or consciousness was affected, so I immediately called by OBGYN to see what I should be doing in a case like this; I was sent to voicemail by both the regular OB and the high risk. Within five minutes I started having an allergic reaction and hives popped up from scalp to toes. I was trying very hard to keep calm, but my chest started to get tight and I knew we needed to go immediately.

Jake jumped in the car and off we went…that same awful drive to that same ER with so many memories. I had the OB call in ahead of time to let them know I was coming. We walked in to a full waiting room and when I checked in they told me to have a seat and they would be with me soon. I very firmly replied, “I am 24 weeks pregnant and my chest is getting tight. I need to be seen immediately.” Within a few minutes they had checked vitals and run an EKG to make sure that my heart was cooperating. Levi was squirming around like a wild man, which was so incredibly reassuring to me, but I wasn’t sure how the foreign substance the hornets injected would affect him.

They were able to administer benedryl and prevacid via an IV and we watched and waited as the hives started to disappear and my chest tightness went ahead. They monitored me for a few hours and sent me home when things had settled a bit. Here is a picture of my belly a few hours after treatment…Jake and I have had some good laughs over the chins I developed this week.

IMG_7131

I stayed swollen and itchy for several days so I kept a steady stream of benedryl in my system. This was my face (from the one face sting) the next morning haha…

IMG_7134

So enough from that adventure! Let’s talk about Malachi!

IMG_7072

Malachi has had a wonderful week. He is starting to learn the school routine and truly enjoys going each day. We have worked up to over 2 hours of him being at school without momma and the confidence of the classroom teachers is growing more and more each day. This week they successfully fed him several times without assistance, which is a huge feat.

They are also “learning” Malachi well, including his quirks. For example, his breathing is still a little junky and labored from his sickness last week. If you don’t know Malachi well, you would probably panic thinking he was struggling to breath. If he develops a burp it is amplified and sounds even worse, which is what happened on Thursday. They immediately texted and asked about it and after explaining it was probably burp related, they were able to successfully get a burp out and his breathing steadied again.

It is reassuring to me that when in doubt they will call and get more information. Overly confident people and Malachi are a bad mix, so I really appreciate them taking the time to learn him and ask when they are unsure r nervous.

IMG_7084 Malachi has been so vocal lately about his emotions, and using his eyebrows to express so much. One of the highlights of his mornings is when I run the hair dryer. A few weeks ago I “shot” him with a burst of air and he made the angriest face and then asked for more. Since then it has been our game that the hair dryer “gets” him (which he will furrow his eyebrows at), and then he giggles when it goes away. It is a true love-hate relationship, and unfortunately I didn’t capture the love side in the video haha. But I assure you that he loves it. He particularly likes when the air hits his belly so he will lift his shirt to show me where to shoot the air.

Malachi has also been spending a lot of time in his canoe. He loves the independence of sitting up without assistance, and he can throw his body around wherever he wishes. He is also learning how to get himself out of precarious positions when he lurches certain ways, and we try to be as hands off as possible to help him learn. I took a short video for you so you can see how well he is sitting unassisted in it!

Aside from our panic moments with the hornets, this week has been a great one. My patience level is improving with the two hour breaks I am now getting, and my level of productivity has been remarkable during that time!! It is simply amazing how much more I can get done when I don’t have to focus on Malachi! Even the smallest things like eating lunch alone have been such an odd experience to have to get used to.

I even did a solo grocery trip on Friday to the local IGA when Malachi was in school and got supplies needed to make a good homemade dinner for Jake. Having time and energy to think through more than the next hour is such an odd sensation.

And the best part is, that there is no guilt in it for this momma! Malachi loves being at school, so it truly is a win-win situation.

This week I have been focusing so much on the compassion Christ had. Throughout the gospels we read story after story of Jesus coming into contact with complete strangers, and the phrase “And Jesus had compassion on them” shows up time and time again.

The love that Jesus Christ has for each of us is such a rare and exciting gift. It is completely undeserved and unwarranted. Even us in our dirtiest rags are loved immeasurably by Him. WOW! I love reading the stories about Jesus coming into contact with people despised by society yet “He had compassion on them.” What a lesson that has been to my heart this week on how I interact with others.

Do I show others the love that Christ has shown unworthy people like me? Honestly, no. But what a challenge that is- to love the undeserving in that way. If you get time this week I highly encourage you to read through the book of John, and when you do simply make a list of the characteristics you see in Christ as you read through those stories. What a challenging and humbling experience reading through those can be.

Please remember us in your prayers as we continue to inch closer to move in day. I am trying to make certain my stress level is staying low and my energy is reserved for my littlest one. He has been situating himself on some of my nerves leading to some pretty severe back pain by the end of the day. Sleeping is always a challenge with Malachi, but with added pregnancy pains I am not able to rest comfortably when Malachi gives me time to sleep.

Thank you for taking the time to check in on our growing family!

God bless,

Jake, Leah, Malachi, and Levi

The Photo Flop

This week started with the excitement of the eclipse! Our town was very close to the “path of totality” and it was astounding how many people had traveled in for the big event. Schools closed as the eclipse was scheduled to take place around the time of dismissal and although they did provide each student with a pair of glasses, they did not want to risk any of the kids unknowingly damaging their eyes by looking at the sun.

Jake and I took turns “sleeping in” and stayed in our pajamas past noon. We ventured out to the property for the main event and sat on the back porch; although we didn’t look up at all we did get to see the beautiful skies all around us. These photos were taken around 2:33pm.

While Malachi did get past his head cold, it seems that he is hanging on to some junky breathing. There is still a lot of congestion which leads to an increase in seizures and vomiting. We kept him home from school until Wednesday to make sure that he was as close to his 100% as possible.

Malachi is truly loving school. He gets so excited when we talk about going, and is starting to bond with some of the teachers and students. The first two weeks he would get very sleepy at school, as it almost overwhelmed his little brain. But this past week he seemed to be more tolerant of the 3 hours there.

We also have started the trials of leaving him there without momma! Wednesday he stayed for an hour by himself, Thursday 1.5 hours, and Friday 1 hour and 45 minutes. This week we will try to transition him to the full three hours and see how he does. The adults in the classroom seem to be getting much more comfortable managing him and his quirks, and as their confidence level rises so does mine.

Picture day was Wednesday and it was a big ol’ flop. After the first camera flash went off, he shut down completely and kept his eyes shut tight. I tried everything in my arsenal to get him to smile, and after several minutes of failed attempts the photographer (who was incredibly nice and tolerant) said, “This is the best one I’ve got, so we will just go with this one. If you don’t like it we would be happy to try again during re-takes.” He flipped the camera around to show me a picture of Malachi, head flopped forward with his chin resting on his chest, mouth wide open but not smiling, and eyes shut. I told him I understood and did the walk of shame out of the gym, completely disappointed by our first school picture attempt.

As I got in the car to leave for Malachi’s trial that day I started thinking about what the man said and I caught myself getting emotional. I pushed the thoughts out of my mind, but sure enough they came back that next morning as I laid in bed next to a sleeping Malachi. I looked at my little warrior and just lost it, crying uncontrollably. I couldn’t stop focusing on the man’s words and the horrible picture of Malachi. From this strangers perspective, THAT picture was a winner. That was the best that he expected for my son. THAT horrible, slumped picture was the expectation for my son. And it absolutely broke my heart.

As Malachi’s mom, I want everyone else to see the bright and wonderful child that he is. I want others to recognize how much he understands. I want others to see him as a typical boy…not a mentally retarded child in a wheelchair.

Jake and I make every effort possible to help the world focus on Malachi’s abilities as opposed to his disabilities. We cringe when people draw attention to his differences, as we think every child deserves to be treated with dignity. We will always dress him in appropriate clothing, assuming that if he could talk he would tell us “Mom, get me that neon orange shirt like all the other kids!” We always try our best to treat him as if he completely understands what is going on around him.

We fight for him, and we always will. But picture day I lost that fight. I couldn’t get that photographer to see the 4 year old boy who can take a good picture if you give him the right setup. And it broke my heart. I started thinking about that picture being in the yearbook and the things people would think based on it. My heart ached more than it has in a long time knowing that I am not always going to be able to convince others to see and focus on his potential.

It has been a long while since I allowed myself to break down, so after just a few minutes of raw emotion I tried to gather myself back together. With Malachi’s junky breathing he is up and down most of the night and sleep is rare. These are the weeks when he will only stay asleep if our foreheads and noses are touching, which doesn’t mesh well with sobbing Leah (or pregnant Leah haha).

In the midst of our school days we had several other appointments. Malachi got fitted for new ankle-foot orthotics (AFOs). We broke away from the camo print and went to dinosaurs! We will get them back in a few weeks and I will post a picture. Malachi also had horse therapy and got to ride a HUGE horse named Sully. He had one of his best sessions yet and giggled most of the 30 minutes.

IMG_7030

I had an appointment with my regular obstetrician and everything is continuing to check out well. This is such a big week for us as I am officially 24 weeks pregnant. Malachi came at 24 weeks 6 days so we are looking forward to the 25 week mark! We will see the high risk doctors again on Wednesday and get another look at baby Levi.

The house project is still moving right along and we are told to expect to be in in the next two and a half weeks! Here are a few updated pictures for you:

IMG_7039IMG_7041IMG_7055

During the eclipse our pastor sent out a group text to a small group of us saying “If this is the day Christ comes back, I will see you all in heaven!” And joked about who his neighbor would be on the streets of gold. As I pictured the scene I couldn’t help but smile from ear to ear as I thought to myself “Don’t come looking for us! We will be running through the streets and climbing trees with Malachi!”

There is so much joy and hope in knowing Christ. What a blessing it is to know that one day Malachi and I will WALK hand in hand down heavenly streets and be able to talk to one another about the greatness of our God. I will hear him sing those words from the songs he loves so much.

Oh, what a glorious day that will be.

IMG_7015

IMG_7010

Sunsets at the new house just take my breath away! The beauty and the brush strokes remind me of our Creator.

Thank you for praying for our family fervently, and please continue to pray for miracles for Malachi. Pray for Levi’s health and safety. Pray that my body will not do anything to sabotage his well being and that God will continue to protect him. Pray that God gives me supernatural patience to deal with the trials of being special needs mommy while simultaneously learning how to cope with pregnancy hormones.

May God bless you this week!

Jake, Leah, Malachi and Levi Carroll

 

 

Sitting By the Brook

The school germs won their battle this week as we worked through our first sickness. I am thrilled to report that this round seems to be mild and Malachi is feeling much better. He started running a low grade fever on Wednesday paired with sneezing and a snotty nose. That same morning I noticed a major increase in seizures and had a suspicion something was brewing, but it took us until dinnertime that day to confirm it.

IMG_6902

Last night was the first night that we took him off medication (Claritin) and he was up literally every hour with junky breathing and coughing. We re-started the medication this morning so we will just have to see how tonight goes.

Pre-sickness, Malachi has had a great week. He was so excited to go back to school on Monday and liked that we were back into a routine he understood and knew. Monday morning he and I went to a local organization to speak on behalf of the United Way. They distribute donated money to several organizations that Malachi is involved in (horse therapy, Boehm birth defects center, etc) so they sometimes call us when they need a guest speaker.

I absolutely love sharing Malachi’s testimony with people. His story is just so unique and powerful and I feel that when I look at him I am truly looking at a miracle. It is always a challenge when I have the opportunity to share his story with a non-Christ centered setting as I have to rely strictly on medical facts and statistics, leaving God out of the equation. My prayer is that those who need to see God through Malachi’s story will find it, even in those setting where I can’t directly point it out to them.

The soccer season has officially begun! For anyone new reading this, Jake and I are the high school girl’s soccer coaches in our county. While I would love to say that our sole motivation is our love for soccer (which does play a huge factor) we also have a practical side to holding this job as it is a paid position. Jake draws the head coach “salary” and I am able to draw as the assistant coach.

IMG_6780

Tuesday was our first big match day and the game was over an hour and a half away from home. We obviously take Malachi to every single one of the games and my mother usually accompanies us to sit with him while we coach. I hesitated going to this one, as we are on travel restrictions and are not to travel too far from the hospital, but this game happened to be in the direction of our emergency hospital if something goes wrong with baby Levi.

Malachi loves going to the games and hearing daddy and mommy yell on the sidelines. This week we learned that baby Levi loves it just as much as big brother! He spent most of the game jumping around like a wild man and kicking at my belly. His kicks have grown so strong that they startle me!

It is so much fun seeing a bond already between the two boys. When we are at home, I often play praise and worship music for Malachi. This week as I played the music Malachi would do his happy dance, but Levi would come to life inside me, seeming to almost dance to the music. Every time it made me smile as I thought about the other things these two boys would share over their lifetime.

While little Levi was dancing, I took Malachi’s hand and put it on my belly and talked to him about his baby brother. I explained to him that baby Levi “was in mommy’s tummy” and he just looked at me with wide eyes. We firmly believe that Malachi understands more than we credit him for, but I knew this was a foreign concept for him (as it would be with most 4 year olds). But for the next hour, every chance I verbally addressed Malachi he would take his little fist and pull up his shirt to show me his tummy. I don’t necessarily think that he made the connection  by any means, but it was so fun seeing him try to relate to me about the tummies.

Malachi remained in good spirits even through his sickness but we kept him at the house for the remainder of the week. Yesterday evening we decided to venture out to give his brain some stimulation and went to a local restaurant to grab some dinner. After we finished eating I asked Malachi if he was ready to go home to which he swiftly made his “NO” face. Thinking it was a fluke, I asked him again and again he told me “No”. The third time I asked I got the same reply and I started to understand that he just wasn’t in the mood to sit at the house any longer! I asked him if he would rather go to the playground with his daddy and he abandoned his no face for a happy dance! Off to the playground we went!

I’m not going to lie- the tiny break that this sickness brought into our schedule was pretty refreshing. Having no appointments and no school to go to was nice, but I can definitely see that Malachi missed his busyness. He will get the chaos back this week as he will go back to school (Tuesday due to the eclipse), go to get fitted for his AFOs, attend horse therapy, and join momma on a Levi appointment. We will also have two away soccer games to go to in our evenings and will get back to all of our church activities with the youth.

Mommy is still attending school with Malachi for now. We may try this week to ease him into a routine where I leave him there for one hour, then two, then three, depending on the comfort level of the staff. I did leave him for one hour on Wednesday as a trial and they all seemed to do well during that time- even with Malachi having a medium seizure.

He even has his first school picture day on Wednesday! I am very curious how this will go with possibly impatient photographers. We prepped for the day with a haircut this weekend! And a side note- Malachi’s new nutritional drink seems to be helping him thicken up a bit.

IMG_6974

I have been working hard lately at getting back into God’s word, and let me tell you all…it has been so incredibly refreshing. I am reading passages I have read hundreds of times, and God is finding things in these passages that He wants to bring to my attention.

I have been going back and forth all week about which one to share with you all, and then a new one hit me this morning. We were talking about the story of Elijah in 1 Kings 17 and how God called him to go live by a brook in the desert. The Bible doesn’t tell us how long he stayed there but it does tell us that he drank from the brook and God commanded the ravens to bring him bread and meat every morning and every night.

I found myself dwelling on the provision of God we see in this story. I think about how loved Elijah must have felt each and every time God sent a creature of the earth to bring him nourishment. And then I think about the next part…”It happened after a while that the brook dried up…”

God didn’t warn Elijah that he was about to take away the life-sustaining source he had given him. He didn’t miraculously cause the brook to keep producing water, even though there was a drought in the land. Instead he commanded Elijah to go somewhere else, where he had other amazing plans in place for providing for him.

I think about what must have gone through Elijah’s mind in between the brook drying up and the command from God to go elsewhere.

As I read this story, I was reminded that in life there are seasons. There are times where we will be challenged greatly, and there are times of refreshing where we simply need to sit by the brook and lean on God to rejuvenate and take care of us. But it is in those moments by the brook that we often overlook the possibility of hardships in our lives. When they come back, they almost take us by surprise as life had been so comfortable and good for all that time. Then the brook dries up and we find ourselves needing to lean on God to direct the next path in our lives.

I feel that right now, the Carroll family is sitting by the brook. God is providing for us in ways that we can’t even see. He has met needs before they have become painful, and the momentum that we have right now is so refreshing. Malachi is making amazing progress and his health is improving immensely.

But I also have to remember that at some point, our brook may dry up and God will move us towards more challenges that test our faith. And I need to remind myself that that isn’t such a bad thing after all. Maybe God is leading us towards an even better brook that we can’t yet see. We may be required to cross a few deserts to get there, but that is all part of the journey he has mapped for our lives.

So for now, we will sit by the brook and marvel at his provision in our lives. Thank you God for the undeserved blessings on our family.

And a final note to end on…I am having way too much fun envisioning what little Levi is going to look like…I wouldn’t mind if he looked like his cute daddy…

IMG_0476

May God bless you this week,

Jake, Leah, and Malachi