Things I am increasingly thankful for in my life:

• our diaper chute; I thought it was a pretty clever idea but who knew it would be such a game changer. My world is full of poo.
• Amazon prime; I literally ordered mayonnaise on Amazon this week. Weird? Absolutely. But so incredibly helpful (Amazon, not the mayo).
• Little House On The Prairie. It is boring enough that Malachi will go to sleep during our 3am parties, yet fascinating enough to keep me awake until that happens.
• a dry sink; see bullet point #1
• Jake.

Levi is growing and changing so much these days. He is now 9 months old and 16 pounds. We have been working hard on sitting independently and while we are nowhere near being able to do it yet, he still looks so proper in his attempts. Sometimes I catch myself worrying about the milestones that we have yet to reach, and then I remind myself that if I spent the first 4.5 months strapped in a hospital bed my muscles might be a little weaker than normal too. I still believe fully that God will heal Levi’s brain and vocal cords. And along with that healing, we will see these milestones!

Gah I love him. I love them both so much. Malachi and Levi are starting to interact more with each other and seeing them pester one another fills us with joy. Levi grabs Malachi’s feet and chews on them while Malachi takes his fist and bonks Levi on the head.

Tuesday was our wildest appointment day as we headed to Chattanooga for an early morning appointment. The night before big days like these I do the math- take the appointment time minus 10 minutes to check in, minus 15 minutes to find parking and wait on elevators, minus 10 minutes to unload all of my gear and children, minus rush hour traffic allotment, minus the one hour drive to get there, minus 15 minutes to load up the boys into the car, then from there I decide if it is reasonable to actually plan on a shower before we hit the road. 9 out of 10 times that is a big fat nope. So I guess I need to add “ball-caps” to the thankful list above.

We made it to the hospital, turning heads as we went. I am still trying to come up with a good response to the one liners that are zinged our way. Tuesday’s was from a man in his 60s “Think you can handle one more?” To which I stopped and replied “Sure, hop on!” Another one of my Leah awkward moments I am so talented at creating. He laughed awkwardly and kept walking.

We made it up to the surgeons office to sign in and I heard a thump. Confused, I looked at the ground to find that a very important piece of Malachi’s wheelchair had broken off leaving a jagged spike next to his rib cage. Wonderful.

We met with Malachi’s surgeon and talked about the possibility of placing a g-tube. There are three ways they can do these- endoscopically, laparoscopically, or open incision. Malachi has had several abdomen surgeries making this whole process much more complicated- hernia repairs with bowel loops, stomach perforations, penrose drains, shunt tubing placement, and more. Each time they went in more scar tissue formed and the probability of an easy g-tube placement lessened.

At this point endoscopically is out of the question, and it will be a stretch to place it laparoscopically (sending in a camera through a small incision first followed by tools) but we would like to try before they go to the open incision. There are risks that they could puncture the bowels trying to get the tools and camera over to the g-tube site but all we can do is cover him in prayer and hold our breath….something we have practice in.

This same surgeon has done all of Malachi’s other abdominal surgeries and we trust him immensely to be conservative when he needs to be. It helps knowing and trusting the man in charge of the decision making. We are waiting on a call back with a surgery date but our goal is to do it before his November foot/hip surgery.

As we left the surgeon’s office I made a quick phone call to the wheelchair repair shop to see if they could take a look at Malachi’s chair and off we went. Thankfully they were able to fix it within the hour!

I had promised Malachi early that morning that he could go to school after we finished our appointments, not anticipating his wheelchair breaking and other random surprises. When we got back into the car I asked him “Malachi do you want to stay home with mommy today?” to which he replied NO. I then asked him “Malachi, do you want to go to school?” and he did his YES sign. Alright buddy- school it is.

I always want him to know that he is heard, even when he cannot speak.

But now we were past lunchtime and he still hadn’t had a solid meal. I found a Cracker Barrel on the route home and in we went to refuel Malachi and mom. We like Cracker Barrel because we are a rowdy bunch and it is nice and loud. To feed Malachi takes about 45 minutes and he is just too large now to do it in the car. I quietly asked the hostess to stick us in a corner somewhere and she said she had one corner table left and it was JUST the table for us. Then she took two steps into the dining room and led us to the table right behind the hostess station. Not ideal but we will make it work.

We settled in but being right next to the entrance/exit of the dining room we got loooooots of comments, pity looks, and unwanted attention. One employee as we left loudly said “Oh my God, is she by herself with both of them!” These moments are so hard for me. I want to be invisible. I crave normal. But our life is “fish tank” with lots of outsiders looking in when we go into public settings.

But then I remember that maybe me having to care so intensely for my children is the “Jesus” that someone needs to see that day. Maybe someone needs to be reminded of the purity of love that exists in a Malachi smile. Or maybe me pushing my comfort zone will encourage others to do the same. To hide my boys and our life from the world would be a huge mistake. Even without speaking a word, their lives and unbreakable spirits are incredible.

In the end Malachi got his food and off to school he went- for an hour and a half, but still momma made good on her promise!

Mixed into our 7 appointments this week we also had youth pastor duties and soccer games/practices. In case you weren’t aware, Tennessee is HOT in August! Mid 90s hot. So for soccer games we have rigged up a nice tent for the boys and bring a generator and a high powered fan. They both really enjoy being outside in their bungalow and watching the game (and Mom and Dad in coaching action) with grandma.

I am slowly trying to reclaim some of my out of control life. This is the absolute heaviest I have ever been. I am confident that the stress, lack of sleep, and inability to eat normal mealtimes has something to do with it, but nevertheless it is my job to take care of my body and make good choices. I have been trying to make time to run on the treadmill in our basement and have set up a nice little play station for the boys down there. We also have a local gym that is tiny but perfect for a 30 minute workout while Malachi is in school.  Baby steps.

Malachi had another exciting Saturday in his new soccer league! He was all smiles when we told him it was soccer day. And the smile on his face as he wheels around the court is heartwarming.

Mondays are turning out to be pretty pleasant days for us. Malachi has started going to school for about 3 hours a day and I am able to take Levi to his therapies alone. It feels so odd to just have to one child to worry about…almost like I am forgetting something…such a weird feeling.

This Monday after Levi’s physical therapy I decided to run into the grocery for a handful of things we desperately needed. As I pushed Levi in his stroller we passed a nice elderly man who pointed at Levi and said “Wow, you really have your hands full!” I just laughed and smiled and said “I sure do!”. It seems self-seeking to one up his thought with a “This is nothing! I also have a special needs 5 year old in a wheelchair!”

Perspective is everything. And this world isn’t a competition of who has the hardest life. But sometimes our human minds play that silly game.

Every one of you has your own struggles, your own fears, your own unique and winding paths. Like the parable of the talents found in Matthew 25, each of us is entrusted by God with things “each according to his ability.”

But what happens when God sees more in your ability than you see within yourself?

1 Corinthians 10:13b says ” And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”

I keep clinging to the word “endure” in that verse. What exactly does endure mean? I did what every American does and went to Google and here is what it gave me:

Endure= suffer something painful and difficult patiently

Ugh that doesn’t sound pleasant.

There are so many times in my life that I have been flabbergasted by God as I think to myself  “God thinks I can handle this, but I truly, sincerely don’t think that I can.” But I can attest to the fact that He has always given me strength and power to ENDURE it. To suffer something painful patiently while I trust in His timing and plan.

He hasn’t given me a painless life. My heart is bruised beyond recognition. I don’t recognize myself in the mirror. I am a product of enduring. It breaks you down and shows your ugliness. It shatters your pride. It takes you to your weary and skinned knees.

But to live a life of enduring has brought me closer to God than any comfort this world has to offer.

But that “way out” that is referenced in 1 Corinthians IS GOD! He gives His strength to the weary, He increases the power of the weak. He renews our strength.

With God to run to we can not only endure, but we can soar on wings like eagles. We can run and not grow weary.

So my challenge to you this week is to change your perspective. It is easy to play the game the world likes to play…”listen to how rough I have it.” I could have given that old man in the grocery store an earful. But instead let’s be proud of our bruises, of our scars, of our journey. Because it is those very things that show that we have ENDURED. And we have reached the other side of something so dark and painful with the help of Christ.

God bless,

Leah

 

We are fully recovered from our exciting week last week with our out of town family. I thought I would share a few sweet pictures from their visit.

Malachi in particular loved sharing his house, toys, and brother with my family. Each morning he woke up so excited to see them again! As they left on Tuesday and we said our goodbyes I made sure to explain to him that they were going back to their home in Ohio. We waved goodbye from the driveway and came back into the house. After about 5 minutes, Malachi realized that they were truly gone and he started to cry.

I snatched him up and I let him cry on my shoulder as we talked about how much fun the week had been. He is such a sweet little boy. And he understands SO MUCH.

Flashing back to our last Cincinnati visit, the ENT and pulmonologist came up with a list of three things that needed to happen for Levi to continue avoiding the trach.

1. Grow well
2. Pass a sleep study
3. Get sick safely

It was predicted that when Levi got his first respiratory infection that he would be in the ICU and back on the ventilator. His vocal cords are already close together, making it hard to breathe so if they swell larger you can imagine the impact that could have.

As I mentioned last week, Jake came down with strep and a viral infection and was sent to a hotel and a family members house from Friday to Tuesday night. I cleaned the house like a crazy lady, sanitizing and laundering everything I could but when Tuesday night rolled around I could tell that Levi was coming down with something. He cried and fussed all night long, clearly in pain. Tylenol helped but as the day went on I could tell that he had come down with a cold and a sore throat.

I was so anxious and kept him hooked to his pulse oximeter to measure his oxygen saturation. He did pretty well but had enough dips to warrant me turning up his oxygen to 1/2 liter (from 1/8). He is still having a few coughing fits here and there but sailed through his first sickness without an ICU stay! PRAISE THE LORD!

While I dealt with sick Levi I just assumed that Malachi would come down with the same thing. Malachi’s immune system is so compromised and he is very susceptible to sickness. When he gets sick we have to take him to the hospital sometimes daily (an hour there and an hour back) for chest x-rays as he develops pneumonia easily.

But as the days went on, Malachi was his happy and silly self. He figured out that if he screamed loudly that brother would wake up crying so that became his game of choice, giggling after each successful attempt. Since he was doing great I still took Malachi to his horse therapy Wednesday and even sent him to school for two hours on Thursday.

Friday morning he woke up with a runny nose so I assumed he was officially catching the viral bug but with some allergy meds that went away. Just to play it safe I kept him home from school.

Here is a photo from his first big day in Kindergarten; he wasn’t in a picture taking mood so this is the best I could do:

So let’s talk about the big meeting with Levi’s pulmonologist on Tuesday morning.

We met to talk about the results of the sleep study, and in my Leah way I tried desperately to read his body language as he entered the room. Unfortunately for me, this doc is hard to read so I started to get anxious.

He explained that he was hoping for some black and white answers but instead we got even more gray area. He said he had been talking at length via email with the Cincinnati ENT and pulmonoligst and they had come up with a plan. This part makes me a little anxious as I have always been the middle man between the two offices. I like the concept of each of them forming an opinion apart from the other and allowing me to hear all sides. It was kind of my way of getting a second opinion.

Good news: one of the biggest concerns from all doctors involved was Levi’s carbon dioxide retention. The sleep study showed that he is exchanging gases well when he sleeps and his CO2 is definitely in the safe range. Levi also was not having any severe apnea (stop breathing) spells.

Bad-ish news: Levi’s hypopnea (short and shallow breathing) is causing brain arousal moments at night which will keep him from getting quality sleep. This can affect his brain development and growth so it is concerning.

Take away: all docs want to do another sleep study and this time they will INCREASE his oxygen while he sleeps (up to 2 liters), hoping to find a happy number that will allow his brain to relax more.

Ugh. Another sleep study. The thought of it makes me nauseous. Just Ugh.

We are waiting on the scheduling department to call us with a time and date. Cincinnati mentioned us coming up there to do the study followed by another procedure to see how things look, but if we can avoid a trip there we will try. It would take them several days to read the results of the study, then several more to get us into the operating room and that is a complicated life for us Carrolls.

When the pulmonologist got ready to leave he did something he has never done….

He superstitiously knocked on the wall behind him and said very quietly through clenched teeth: “I think we still may be able to avoid the trach.” He still seems a little unsure but him verbally telling me that it was still a possibility to avoid it gave me some wind beneath my wings.

This week we will meet with Malachi’s surgeon to talk about his g-tube. It is another appointment that makes me sick to my stomach. I hate the idea but know it is time, especially with his big upcoming hip and foot surgery.

Back to some happy thoughts…

Malachi played in his first soccer game on Saturday and had a blast!

He is always cautious and quirky his first time trying something new, and this was no exception. But at halftime when I asked him if he wanted to keep playing he exuberantly signed yes. Ten minutes later he told us with his signs that he was done and sat out for a bit. It is an overwhelming environment with all the noise and chaos, but he will adjust over the next few weeks. When I talked to him tonight about playing next week he giggled and signed YES.

Here is a fun video for you:

I have been a little emotionally fragile all week as I have been dealing with lots of sleepless nights, not a lot of help from Jake as he is still recovering, and a rapidly moving life with lots of places to be with lots of people counting on me. When I get into this fragile mode I know I am due for a pity party with lots of tears. It’s coming soon.

Tonight I attended a women’s event with the ladies from my church. It was a casual gathering at someone’s house but as I sat alone without any children in sight I started to get tight chested and struggled to breathe. I knew that I was physically okay but mentally I was absolutely freaking out. I was able to talk myself through it before causing a scene but that is the closest I have ever been to a panic attack, if that is even what it was. I am just not used to being without the boys and having that burden of responsibility lingering in my thoughts.

My control freak side has been in overdrive today adding to the buildup. For example, my sweet husband got Malachi ready for church this morning but I just couldn’t handle the mint green shirt, neon orange bib with sharks, and bright red socks. Nope, nope, and nope.

But more time at home this week has given me more time to create thoughts and dwell on them. This week’s thought focus has been on nature.

Recently I put up a hummingbird feeder right outside my living room window. Yes, random, I know. But prior to hanging the feeder I would be sitting on the couch with a kid and a hummingbird would appear in the window, staring directly at us. It was so odd to me and became so frequent that I figured a feeder would get some attention.

And it most definitely drew a crowd within an hour of me hanging it up. I have been utterly fascinated by them as I watch their behavior. I watched as their wings moved so fast you couldn’t see them and I wondered how they never tire. I watched them fly up to the feeder for a quick sip, anxiously glancing around them each time, then seconds later darting off back into the sky. What an exhausting life that must be.

Then one day it hit me…I AM A HUMMINGBIRD! I live in a world where it is never safe to stop flapping my wings. I can never relax, never shut off, never rejuvenate. If there are moments to take that sip of water I pounce on them, but all while looking around anxiously waiting for something bad to happen because I let down my guard.

It is exhausting! Each morning Malachi wakes me up around 3am by having a seizure. I hear him over the baby monitor and rush in to get him upright before he vomits and aspirates it into his lungs. I take him into the living room to try to help him burp instead of vomit (the trigger for the seizure) all while listening closely to Levi’s alarms to make sure he doesn’t have a breathing episode that requires my attention. After an hour or two up with Malachi he ends up in the bed with me- I have to carefully roll him onto his side in such a way that his already dislocated hips won’t hurt and he can’t smother himself on the pillow. I use my face to prop his face in a safe place and I use my knee in between his knees to keep his legs and hips comfortable. He will usually sleep like this for another hour and a half, but that is never guaranteed- some nights last week I got a total of 3 hours sleep, others around 5-6.

When we wake up for the day I have to administer 6 doses of medications to the boys, prime and setup a new feeding pump bag for Levi, change medical tape and gauze, change diapers, change outfits, and take an hour to feed Malachi. It is a constant flurry of action. If I want to try to shower I have to take 5 trips into the bathroom, 3 with equipment and 2 with each boy. Then repeat the process to take them back out.

Then getting them into the car requires packed coolers, feeding pump bags with ice packs, emergency bags, oxygen tanks, gear, and at least three trips to get everyone and everything into the car.

I am a hummingbird y’all.

And as I went down this rabbit trail of the hummingbird being my spirit animal of sorts, I started thinking about the purpose of the hummingbird. Why did God create them? What unique and individual job do they do that another species of bird could not fulfill?

Then that led me to other things in nature, like butterflies and sloths. What in the world do those things do?

I started thinking about all of the odd things in nature that God saw fit to create…things that don’t seem to serve a single purpose aside from the fact they are pretty cool to look at. Things that you and I look at and think WHY?

And then it hit me…

My Malachi is one of those “things”. He is one of those children that will never become a “contributing member of society” in earthly terms. He will in fact deplete lots of money and resources during his time here on earth. But OH MY what a purpose he serves.

Hummingbirds, butterflies, sloths, bees, spiders…they all serve a unique and special purpose. We have learned over the years through scientific studies that without these things our ecosystem changes. Even if their purpose is a tiny and minute one, it still plays a huge part in the big picture of nature. God knew exactly what he was doing when he designed and created each one.

When we look at kids like Malachi we find ourselves digging to come up with their “purpose”. But like the little things in nature, each of these beautifully unique individuals brings something to this world that you couldn’t get any other way.

In what other ways do you get to see firsthand a love that is unconditional and limitless? In what other ways are we given an opportunity to see such a pure and innocent spirit? Malachi reminds us of so many things we often forget…things we take for granted.

Malachi’s life also gives you and I the rare chance to practice selflessness. To take care of another person’s needs, and to gain a new perspective of the things we have to be thankful for. He reminds us of God’s goodness, God’s mercy. His blessings and how he can make beauty from ashes.

While Malachi may not be able to physically do much in this life, his purpose is monumental.

Malachi’s life is a reflection of Christ. In him we see those characteristics we are all called by God to show to others…love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control.

Malachi is here to teach us. And that is a pretty special purpose.

Sometimes when we hummingbird our way through life we forget to rest every now and then to note the beauty of our creation. The detail that God took in creating every unique aspect of each of us. And we forget that God has a calling on each of our lives.

There is something that each of us is MEANT to do in this world. There is something that cannot and will not function to its fullest potential without our presence. What are you here for? What special job did God design for you to do in your time here on earth?

You need to know that these blogs are written in the middle of the night, most of the time when I am utterly exhausted. I still feel called by God to write them each week, but I always laugh when I read them back. I can already see myself laughing tomorrow as I realize that I wrote about sloths. Why in the world that one came to mind is a mystery.

The verse I want to share is completely unrelated to my nature ramblings, but is one that I enjoyed reading again this week. I have a little green Bible that belonged to my grandpa who passed away in 2013. I love looking through the margins and seeing where he meticulously made marks with his pencil, noting things that stuck out to him. The Bible is the Message translation, so I don’t use it too often for studying but I do like how it worded this scripture.

Colossians 3:1-2 “So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ- that is where the action is. See things from His perspective.”

Please pray for the boys this week as we tackle a list of appointments. Pray that Levi continues to heal and that his vocal cords suddenly awaken. Pray that Malachi’s ligaments and tendons stop receiving wrong messages from his brain and start to loosen back to normal. Pray that his seizures stop and that he can be comfortable and at peace throughout his day. Pray that both of the boys receive supernatural healings and that Jake and I are each given an extra dose of supernatural wisdom in knowing how to care for such precious boys.

And pray that they can sleep. That God can allow each of our hummingbird wings to stop moving long enough for healing and brain growth.

Thank you for choosing to be a part of our journey.

God bless,

Leah

The first sickness of the school year swooped in quickly this year; Jake was diagnosed with strep on Friday afternoon. YIKES! He called to tell me his throat felt funny and I immediately got out our rubber gloves and hospital grade sanitizer and started playing the “What would Jake do” game. In this game I re-enact a typical day for Jake and sanitize every possible thing he may have touched, coughed on, or infected. There are things most of you typical people wouldn’t even think of…car door handles, seat belt buttons, hangers in the closet, phone chargers…the whole process takes several hours.

And then we made our sickness plan. Strep throat can knock Malachi down pretty quickly and Levi has yet to be sick but we are told to expect an ICU stay and to likely be put on the ventilator. So I did the only thing that made sense…I packed him a bag and sent him to a hotel for the weekend. He has been on antibiotics for 3 days but we just want to be extra careful.

We just so happened to be having family from Ohio come and stay with us for the weekend too. We called and explained the situation and they weren’t deterred by the possibility of being in a strep exposed house. We have been having a wonderful weekend together and hopefully Jake will feel well enough to join us again tomorrow. So far the boys and I have remained healthy!

Leading up to our strep attack, we had a jam packed week of appointments. We started off with physical therapy for Levi, hippotherapy for Malachi, oxygen tank deliveries, pediatrician wellness checks, 4 trips to the pharmacy, insurance calls, and GI appointments for each boy…I also successfully navigated a Target shopping trip and a grocery store run with the wheelchair stroller and pulling a cart! Like a boss. There were so many days this week I felt like high-fiving myself…we are figuring this whole thing out.

Levi is 15 pounds 6 ounces and getting way fewer calories than recommended so we have increased his volume. He is fed using a pump that continuously (for 18 hours a day) flows formula through his g-tube so increasing his food is as simple as pushing a few buttons on his pump. BUT we do have to make sure his belly can tolerate the change and stretch accordingly. We are easing into the increase and he has not handled it well so far with lots of spitting up.

Malachi is still at 25 pounds, but looks healthier. We initiated the dreaded g-tube talk and will be going to speak with the surgeon and set a date in a few weeks. We would like to get the tube placed so it can be used to administer medications for his big upcoming hip/feet surgery in November. We are also hoping that it will help with seizure management as most of his seizures are caused by pressure in his belly. If we have a way to vent that air out it may help in the long run.

I scheduled an appointment this week with Levi’s pediatrician after we noticed that one of his eyes has been getting a little wonky. It looks like we are dealing with some form of strabismus so we will now be adding pediatric ophthalmologist to the list of specialists for Levi. That’s good because we have been a little bored lately with not much else going on in our lives…haha. Hope you can sense the sarcasm through the keyboard.

He has been hilarious this week. I woke up yesterday morning to this little goofball:

I got a call this week from the pulmonologist’s office that went like this: “Hello sweetie, I am looking for the parent of Levi Carroll. Dr. _________ has received his sleep study results and asked if you could come in on Tuesday at 8:45 to discuss the results?”

I have played that conversation over and over again in my head (especially the “sweetie” comment) trying to decide if that is a good thing, a bad thing, or a protocol thing. And then I “Leah”ed it and got panicky. I won’t divulge my sources but by the end of the day I got a copy of the sleep study and did my best to interpret the results using friends, google, and optimism. To my untrained eye it didn’t look horrendous. But we will find out how he thinks we need to proceed on Tuesday. I will give you more details about the results next week.

Here is a sweet video of Levi’s new syllables:

Malachi sat next to Levi at lunch this week and kept reaching his hand out to find Levi’s. Watching their special bond melts my heart so much. If I tell Malachi that Levi is watching him he will puff his chest out and do whatever his is doing ten times more exuberantly. We always talk to him about how he is setting such a good example for his baby brother and teaching him things (like how to drink a bottle like a big boy, etc).

I have had some emotional moments this week and they have really made me think. Friday night I was sitting on the couch holding my beautiful son Malachi and felt so drawn to pray over him. I told Malachi that we were going to say a prayer to God and his eyes widened with excitement. He LOVES when we pray. I spoke the words out loud and as I declared “Lord, heal him and make him whole” I looked at his face, staring in anticipation back at me, and I was struck with a pang of guilt.

As I have told you before, Malachi’s receptive language is pretty phenomenal. He understands so much more than we realize. And as I looked at his sweet face I started to wonder what he thought of my words to God. I thought about how confused he must be to hear mommy ask God to make him whole. I could hear him saying “Mommy, am I broken? Mommy, am I sick?” and I just got so emotional.

My petitions and pleas turned into prayers of praise as I thanked God for all of the beautiful things about Malachi. He listened and clung to each word.

This is the only life and body that Malachi has ever known. To him this is his normal. I would never want him to feel “less than” or imperfect.

So it started making me question my prayers over him and Levi. Should I be praying to God that they be made whole? And I feel in my heart that I absolutely should be.

But I also feel in my heart that God desires us to find beauty in all that we have been given…even the things that we never expected. Even the things that don’t come in beautiful and predictable packages.

While I desire for Malachi and Levi to be made whole, I am overwhelmingly thankful for the favor God has given us through them. We have the privilege to see the joy of the Lord reflected on our 5 year old sons face each and every day. We have witnessed firsthand the provisional hands of God meeting our needs before they become burdens. God has gifted us supernatural measures of faith that has carried us through some tough news and dark times.

God has given my non-verbal (for now) sons a voice, an audience, and a mission. So while I desire SO GREATLY that God hears and answers my prayers that they be made whole, I also recognize and trust that they are perfectly imperfect for this exact moment in time for a reason. God works through our imperfections, so we will call our family blessed that we have an abundance of those for Him to perfect!

Much love,

Leah

 

A few feel good notes before we jump into the sleep study summary! First of all, I have been really trying to focus on teaching Malachi things lately to figure out what he is capable of retaining. Time and time again he reminds me that he is not only ready and willing, but very capable of learning! This week we focused on being able to determine someone’s gender. I would give him the name of someone he knew and he would tell me if that person was a boy or a girl using his switch. It only took about 5 minutes for him to get it and he is a about 99% accurate! I took a video for you all:

Levi is a wild man. He has mastered the art of rolling which is such great news. But the wires make life a bit more challenging. Within seconds of me putting him on the ground to play he usually has one or both of his tubes wrapped around his neck. He also managed to pull the IV tower down on himself this week, so that is a new challenge added to the list. A very kind friend donated a feeding pump backpack to us so we may have to give it a try to see if we can eliminate one of those wires being accessible.

Levi is also learning some new syllables which is such a joy to hear. The “D” and the “G” have been his favorites this week.

Levi loves to put things in his mouth, which is great for getting rid of any oral aversions he has. This week while the boys were playing Malachi got his hand close to Levi’s mouth and he decided to borrow his thumb for a bit. Malachi thought it was funny and kept sticking his thumb in Levi’s mouth. What a great fine motor therapy exercise for Malachi haha.

Jake and I had the rare opportunity to go on a date this week! Malachi and Levi’s physical therapist offered to watch the boys so we could go out to dinner, and who is more qualified than someone that spends 1.5 hours with them each week? It was the oddest feeling for us to be away from them, but it definitely was refreshing to have some time for us.

And one more silly video for you:

On to the sleep study…

The closer we got to the scheduled appointment the more I started to realize the misery that was about to take place and that feeling of doom started looming over me. SOOOOO much of our lives is a mental game. My mind is always a battlefield; I have to continually remind myself to stay positive and just get it over with. So off to the hospital Levi and I went.

Our scheduled time was right around a shift change so the walk in was like a mini family reunion as we stopped and had conversations with doctors, nurse practitioners, and nurses who have taken care of one or both of the boys in the past. Another mental game for me….part of me loves that we know all these wonderful, life saving people and the other part of me is so sad that my boys have to know this “world”. That our paths have to cross with so many people in the medical field. It is hard to explain.

The mental game continued as I checked us in for the appointment. Here’s a helpful little tid bit for you…if you go to the hospital anytime after 5, everyone is required to check in through the same desk inside the emergency room. Children with the flu, bubonic plague, sleep studies…all sharing the same pens and counter space. We learned this lesson a few years back and it made me so upset that I called the hospital board and pleaded our case. I was shocked when I checked in two weeks later and they had actually listened to my worries and made a change. But unfortunately we were back inside sick land with a healthy child. These moments make me so anxious. And of course there was a computer error while we were checking in so the process took 20 loooong minutes, still sandwiched between some pretty sick looking children.

We were escorted up to the floor and headed towards our room. The mental game here went into overtime as we passed rooms I have stayed with Malachi in the past. I passed the ICU double doors that Malachi spent significant time in when he got the flu and pneumonia around his first birthday. I remember having to take a big deep breath each time before I walked through them. I passed the room we stayed in for 7 long days when Malachi developed infantile spasms, the room after heart surgery, the room for his overnight EEG….

My mind and emotions were at war. Then I remembered when Malachi was in some of these rooms he was one sick little boy, and here I was pushing my healthy yet fragile child through the hallways surrounded by very sick kids. I could feel my stability slipping away.

We finally got to our room at the end of the hallway and started the process for the sleep study. There were some miscommunications about what this study was to focus on…let me try to explain that a bit:

Neurology in Chattanooga: there is only one doctor in the hospital certified to administer and analyze sleep studies, and he is a neurologist. We are not a patient of this doctor nor have we ever met him.

Pulmonology in Chattanooga: this doctor is the one who actually ordered the sleep study. He is our local connection in case anything goes wrong with Levi and knows him well. We really trust this guy.

ENT in Cincinnati: they are VERY curious about the results of this study and will be using the information to determine the need for a trach. One of the big things they are wanting to analyze is his carbon dioxide retention. The results will be forwarded to them.

That information may help you understand our dilemma a bit better.

So the tech came in and explained that the neurologist (the one who has never met Levi) decided that this sleep study was to be done with Levi completely off of oxygen. This bothered me, as the goal right now is NOT to get Levi off of oxygen. We are wanting to see if the interventions we are doing now are enough for Levi to breathe safely.

In my mind, we were setting him up for failure/trach if we are removing all interventions and expecting him to pass. We KNOW his vocal cords are paralyzed and therefore are an obstruction to his airway. We KNOW when he is not on oxygen that his saturation dips down. We don’t need to hook him to an insane amount of wires and spend the night in the hospital to prove that. My biggest fear is that this test would be administered incorrectly (through the eyes of ENT and Pulmonology) and we would have to repeat this darn thing all over again. So I did the annoying thing and told them we would not proceed until they spoke directly with our pulmonologist.

The tech made some phone calls and after speaking with pulmonology they decided to do a split study, three hours off oxygen (or as long as he could manage it safely) and three hours on. That seemed more reasonable and it came from someone we know so I agreed.

It took almost an hour to get all the wires and leads on Levi who was a crying mess. She made me take his oxygen off during this time and I was SO WORRIED that he was using all of his reserve and would be starting the study with an already exhausted respiratory system. Once I was cleared to get my hands on him I strapped his oxygen back on and told the tech that he needed to recover before we would start the test.

Levi made it a whopping 45 minutes off oxygen and during that time he had 27 spells of hypopnea (slow and shallow breathing with a dip of more than 3% points in a short period of time…like 94% to 91%). Summary: that is not good. While he didn’t have any apnea (stop breathing) spells, this is still not good for his heart and his brain development. His oxygen saturation OFF oxygen hung around 93.

The oxygen went back on for the rest of the study and with that tiny 1/8 liter intervention he stayed at 98-99% for his oxygen saturation. We won’t get the results back for a few weeks but I studied that computer screen/numbers pretty intensely and he wasn’t having more than a handful of hypopnea spells each hour. The average was reading 10/hour by the time we left but that included the insane 27 recorded when he was off oxygen so I really don’t know what to think. I did not see any true apnea spells, but that doesn’t mean they didn’t happen.

And the BEST part is that his carbon dioxide retention was normal!! He stayed in the 35-45 range consistently. Anything above 50 is a little dangerous.

Levi was miserable. It was the most miserable I have seen him since the NICU and it broke my heart a bit. I couldn’t really hold him with all the leads and wires, and he was just so uncomfortable. He woke up after an hour of sleep and the crying started all over again. At 2am he projectile vomited all over himself and when I called the tech to see what we could do about changing him she said that there was nothing we could do unless we wanted to start the study all over again. He was wire/glue covered, puke covered, and extremely uncomfortable.

I guess we will find out in a few weeks what the next steps will be. I am not really confident either direction, and still a little anxious. I am not quite sure who will give us the results and what this will mean for Levi. We were both very happy at 5am when we got to leave.

We got home just in time for Jake to help with a bath and glue removal before he headed off to work for his first day back.

The rest of our week was a busy one with a youth group back to school party, an all day soccer tournament, and just plain ol’ life. I attempted a Walmart trip with the boys to get some food for Malachi and that didn’t last long. Malachi had a large meltdown in the middle of the pretzel aisle that he just couldn’t seem to recover from so we headed toward the checkout. He got a balloon out of it so he was happy haha.

So let’s talk about expectations. They really are getting me in trouble these days. I EXPECT Jake to get something done and it doesn’t happen the way I envisioned. I EXPECT Malachi to be able to eat his bottle in a specified amount of time. I EXPECT doctor appointments to be a certain number of hours. And when those expectations aren’t met I get so incredibly mad.

Maybe it is a control issue. Maybe it is just my personality. But my goodness do I have a load of expectations.

One of the things I have always been big on is the Golden Rule: Do unto others as you would have them do unto you. I remember learning the lesson when I was younger that this rule isn’t something that everyone follows and being so disappointed.

So are expectations good, bad, neither, both? I honestly still don’t know. But I do know that the Christian life is about surrendering. It is about releasing things- BIG things and small things- to God. And for me personally, that means my expectations for how I think God should intervene and act in my life need to stop.

Because with expectations comes disappointments, and that is where sin can easily slide in. I don’t know about you, but disappointment brews inside of me. I stew on it until it morphs into something ugly, like anger or bitterness towards someone or something.

Are expectations bad? No. Is disappointment a sin? No. But our reactions to those outcomes are what gets our mind into trouble. The Bible tells us if you hand causes you to sin then cut it off! Obviously that is not meant literally. But the concept certainly applies here. Expectations cause me to sin with my angry, bitter heart so I need to cut them off!

So for this week I am focusing my prayers and attention on simply trusting that God has my family’s future already drawn out, and undoubtedly it will bring him glory. It may lead to some earthly suffering- physically, mentally, and emotionally- but in the end His name will be glorified.

My only expectations this week will be ones promised to me in scripture. I have been talking to Malachi this week about the new body that God will have for him when he gets to heaven. I have talked to him about all of the fun things he and I will do, and how we will sing praises to God together. He smiles from ear to ear when we talk about God. What a beautiful and glorious pain free life that will be for both of my sons.

2 Corinthians 5: 2-5, 9

² We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. ³ For we will put on heavenly bodies; we will not be spirits without bodies. ⁴ While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. ⁵ God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit.

⁹ So whether we are here in this body or away from this body, our goal is to please him.

So this week, I will choose to focus less on expectations and more on pleasing the Lord. Isn’t that the way it should be?

God bless,

Leah