So many medical, emotional, and surgical updates for you this week. It was definitely a week of ups and downs! But it is always nice to start with a super cute picture:

We started this busy week off with a very hot Monday. It has officially turned to summer here in Tennessee and boy, do we have some major sunshine. I even got the chance to sit on the back deck alone for a glorious 30 minutes and read a Reader’s Digest I had been saving in the plastic wrapper for when I got some free time. I plopped down and ripped the plastic open and started laughing hysterically as I noted the cover was dated May 2013. I guess it has been that long since I have had “free time”. The articles were outdated but it was a wonderful 30 minutes.

We spent the morning at the soccer field and then headed into town for Malachi’s horse therapy. The time in the heat got to Malachi and when we got him home he was acting a little more lethargic than normal. I took his temperature but it was normal so we just watched him very carefully. Twenty minutes later I took his temp again as he looked a bit worse and it was already at 101 and rising. His brain struggles to regulate his temps so when he overheats he continues to do so very quickly. We stripped him down to his diaper and started trying to bring it down and by bedtime we had him back at a decent temp. We struggle with this every summer, but it was a bit alarming at how quickly this one came on.

Tuesday was a busy day that started with a trip to the neurosurgeon (for Malachi) followed by the neurologist (for Levi). Not too many updates to share on those…Malachi will be having an MRI done in a few weeks to check his shunt to make sure it is working properly. And the doctor wants to do a repeat MRI on Levi when he turns two, so until then we will be followed on a bi-annual basis, assuming no seizure activity starts. He did label him as “Developmentally Delayed” since he isn’t reaching all the expected milestones, but we don’t put a whole lot of stock into labels in our family.

 

We were crammed in this tiny room with the boys and their gear for an hour an a half as we waited on the doctor. By the time we left we were all a little cranky.

We ran the boys back home where they stayed with Jake while I ran to get an ultrasound done on my leg. The good news is that they could not find a blood clot. The bad news is that I am still experiencing pain in that leg and it is almost identical (in spot and sensation) to my previous blood clot. They felt confident that I did not have one and said the scan would show it if one was there. Any of you medical professionals have any ideas?

Wednesday Malachi got fitted for his new bath chair, which is absolutely perfect for him! It is so much more supportive than his other bath chair which makes it much safer. He spent 25 minutes playing in the shower the day it came in!

And I thought you would be amused by this little monkey playing. He has been using only his feet to play with things lately, and this was no exception:

Then came Cincinnati. Dum Dum Dummmmmmm.

Anytime we go on a trip with either (or both) boys there has to be a whole lot of preparation. We have to pack and prepare for each worst case scenario. I loaded up the car late Wednesday evening with enough medical supplies and clothing for at least 4 days just in case we have to stay in Cincinnati longer than expected. We had a 12:45 appointment in Cincinnati so we woke up bright and early to make it there in time. We were on the road by 6am and pulled into the hospital parking lot at 12:30- a little too close for comfort! But Levi handled the drive very well.

We met with the pulmonologist who would be doing the bronchoscope (lung) portion of his procedure and talked through Levi’s medical history. This is always more difficult than it sounds and many of the doctors we speak to don’t understand why we so adamantly wanted to avoid the trach, and I always feel the need to defend our decision making. But here is the biggest point we bring up when that question is asked…

There is a 50% chance his vocal cords will never wake up and he will have to keep the trach for the rest of his life. We are making decisions based on him being in that category and trying to avoid a lifelong trach for Levi. Yes, trachs can be wonderful lifesaving devices but also bring a complicated and restricted life along with them. Like we have said before, we are simply trying our best to preserve his normal.

Many of the procedures we have tried have to be done before the age of 9 months when his airway becomes less pliable. Yes, this journey has been exceptionally rough on Levi but we still don’t regret trying to give him a shot at a trach free life and exhaust every other avenue possible.

After the appointment with the pulmonologist we had just enough time for a visit with my grandmother, dinner with my dad and younger siblings, then settled in for the evening.

I knew I needed to get a good night’s rest before our hospital stay but I just couldn’t seem to get my mind to shut off for the night. With Malachi’s medical journey I was always somehow able to keep the stress from physically affecting me. But with Levi’s journey I am a complete and total wreck. As I laid there I couldn’t stop thinking about what they were going to find or what they were about to tell me. It is the unpredictability of the situation that seems to be messing with my emotions. When I finally would fall asleep I would wake up 20 minutes later in a panic. Finally morning rolled around at we got up at 5am to get the day over with.

I did realize this week that I seem to be struggling with some PTSD more than I thought. There were so many triggers, many of which I did not see coming. Simple things like the floor tiles…as I wheeled Levi down the main hallway I was looking at the floor which was colorful with fun patterns and for some reason my mind remembered those stupid tiles and my knees buckled. I immediately felt like I was about to vomit and had to sit down. The room was spinning and I started to sweat. I felt ridiculous and petty but just couldn’t seem to get a grip. There were so many of these moments this trip and I felt a little out of control emotionally. My stomach is still a mess from the nerves.

Levi and I prayed, sang, played, read the Bible, and napped while we waited patiently for his turn in the operating room. After 3 hours cooped up in a pre-op room it was finally his turn and off we went. I know I always say this, but there is just something so nauseating about walking your child to an operating room and kissing him goodbye as you hand him off to strangers.

I left his beloved raccoon toy with him so he would have something familiar there when he woke up, then walked alone down the hall towards the waiting room pushing an empty stroller. I felt the tears coming, but once I open that gate it is difficult to shut so I stuffed those emotions deep down inside of me and kept walking.

I checked in at the surgery desk and before I said my name she knew it…I looked at her quizzically and she said “We remember you!” I wasn’t sure whether to take that as compliment haha. But the truth is, I know their names too. I hate that. I hate that we know so many hospital employees. I hate that we know routines. I hate that we know which elevator to take without stopping by the information desk. I hate that we know which bathroom is the cleanest. I hate that we know to eat from the salad bar at 11 when the food is the freshest and the line is the shortest. Sometimes being a frequent flyer isn’t a good thing.

When Levi is in surgery I wait in a large room with several other families. I am a people watcher, which always helps pass the time. Most of the time there is at least one “Team” there for a single patient- they always wear matching shirts and have all kinds of goodies for the child when they come out of surgery. Then you have the “pacers” who are so anxious they can’t sit down. The largest group you find are the people that sit closest to the outlets and fiddle with their phones trying to keep their mind off of things. You have the “sleepers” who look like they are actually sleeping, but we all know there is no way to close your eyes and actually sleep when your child is in surgery. And there are the anxious ones…like me…who can’t sit still and find different things to pass the time, like people watch. I always make sure to clip my fingernails before a surgery or I unknowingly do some damage.

When the surgeon has an update on your child they call your last name over the intercom and you go up to the little desk in the front of the room. From there you are either directed to a phone where the surgeon is waiting to speak to you or they send you into one of the six small rooms that each contain chairs and a whiteboard. You enter in doors from the waiting room side and the surgeon comes in through a door off the operating room hallway.

During Levi’s procedures I get called into these rooms frequently and often as I have to speak with each of the teams involved…anesthesia, pulomonology, ENT. After each meeting you go back out into the main waiting area until they call your name to go back to the recovery room with your kid. It always breaks my heart when parents come out of those little rooms and their faces clearly show they did not get the news they had hoped.

It really is a hard environment to be in. Surrounded by people just like me that hate to see their child having to go through something so painful. The recovery room is just as bad as it is a large area with walled off curtain slots for each patient and their parents. Hearing children wake up from anesthesia will make your stomach churn. Levi does not wake up from anesthesia well and with his stridor we tend to turn lots of heads.

So here is what we learned about Levi’s airway:

Good news: His airway is as wide as it was last time! That is wonderful to hear. The piece of his rib that they used to prop his vocal cords open looks like it has stayed in place and his airway was “wide enough to pull a truck through” as one doctor put it. They put a balloon in there to dilate it but it is already larger than the balloon so the dilation did nothing.

Bad news: his epiglottis and arytenoids were grown back up and needed to be trimmed, a procedure called a supraglottoplasty. If you remember, this was the exact same procedure we did in January. When he had it done the first time I asked them if this was something they would have to do again in the future and they said no. But it looks like the cartilage grew back (shocking all the doctors) and the procedure was repeated. Here is a visual of what they trimmed.

So we have now surgically done all we can to allow Levi to remain trach free. His airway is wide open, and the area around the airway is as unobstructed as we can get it. So have we done enough for him to breathe safely?

The team has come up with a list of three things that have to happen for him to be able to continue to avoid the trach.

1. Continue to grow. The fear is that his work of breathing is burning too many calories and will stunt his growth. So far this is not an issue and he is gaining weight like a champ. He is 7 months and 14 pounds (he started at 4 pounds 8 ounces).
2. Get sick safely. This one sounds silly but makes sense. The thought is that when Levi gets a cold or another respiratory sickness that the swelling will cut off his air supply. If this happens he will likely end up in the ICU and back on the ventilator. But we won’t know for sure how his airway will react until that first major sickness hits.
3. Pass a sleep study. Levi is maintaining his oxygen well during awake times but at night will dip down without the nasal cannula. When we have him on 1/8th of a liter of oxygen he is fine at night. They are afraid that he is not expelling enough of his carbon dioxide when he sleeps which can cause his brain to not develop properly. The only way to check this is to stay the night in the hospital hooked up to some major equipment. We have schedule his sleep study for July 31st and need some major prayers that he will pass it!

The doctor was a little concerned that he would need to spend the night in the ICU as he was one cranky boy, but with the amount of trimming they did it makes sense that he would be in pain. We Face Timed with dad and brother, hoping that would distract him from crying which worked for a bit.

 

We were taken to the complex airway floor where Levi screamed off and on throughout the afternoon and evening and finally settled out around 2am. I have been on high alert from the stupid bear (who hasn’t been back since we prepped the shot gun) so every time I heard a noise I woke up ready to run for the gun. We were right in front of the noisy nurse’s station so that happened more times than I would like to admit.

We got a few hours of rough sleep in and woke up at 6:30 and spoke with the doctors about discharge. By 7:30 we were on the road! I stopped for a quick breakfast with Jake’s parents (aka caffeine for a very tired momma) then raced back to Tennessee.

Levi has been in pain but is slowly getting better. His stridor is louder but we were told to expect that since the area would be very swollen.

He did enjoy a nice post-hospital stay bath this afternoon.

While Levi and I were in Ohio, Jake and Malachi enjoyed some big adventures- something I think Malachi really needed. They went to the bowling alley one day and the playground another. The one on one time was good for him. I snapped this picture last week and noticed it had some of that jealousy I have been telling you about.

There is a wonderful thing happening locally here starting in October! A special needs mom in the community has started an organization that hosts programs and events for children with disabilities. They will be kicking off with an indoor soccer league in the fall and Malachi will be participating! Oh how he will love the fun that league will bring, and it will be something that is “just his” which he needs right now. And the added bonus is that they will be using the gym facilities at out church so it will be five minutes down the road!

As far as devotional thoughts go, I have been mentally munching on some biggies. But I still haven’t sorted them out quite yet. God laid 1 Kings 7 on my heart the morning of surgery and I listened to it on my drive. There are so many confusing things about that chapter so I will continue to process and pray about it before I share that with you!

But he also reminded me of the story of Peter walking on water. It is a common story, and one that is pretty easy to decipher, but I think I needed to be reminded of it this week.

Matthew 14:29-31

“Come,” he said. Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”  Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Have you ever almost drowned? I remember jumping into my grandparent’s pool as a child and looking up from the bottom of the pool. I remember seeing the ladder but realizing that it didn’t go much further than two feet from the surface of the water and panic swept over me. Thankfully I was pulled out of the water quickly that day and didn’t drown.

But that feeling can be crippling. You freeze and panic, not sure what to do to get out of the situation safely. This week in Cincinnati I truly felt like I was drowning. I felt physical  pressure all over my body as I entered that building again. My body was telling me not to keep walking, but I don’t have the luxury of being able to tell it no as my son has to be there. I had to focus on taking big, deep breaths and fight dizziness that threatened to take me to the ground.

When I picture Peter in this story, I see him stepping out of that boat with a look of confidence and determination on his face. Jesus had told him to step out of the boat, and he obeyed. But a few confident and sure steps into that journey he thought about the reality of the situation and panicked. He saw the that the odds were stacked against him as the wind pushed against his body. And he started to sink.

Can you relate with that like I can? Stepping so confidently into something….so sure that God directed you to do so. Then questioning it like crazy?

Like Peter, sometimes God challenges us to attempt the impossible. Sometimes we are asked to walk on water. And if that task alone wasn’t daunting, we are often met with outside forces like the wind and the waves that threaten to take us down.

But one thing I have to remember is that Jesus said “Come”.

I needed to be reminded this week that my strength in those moments needs to come from focusing on the face of God- the one who has called me into this challenging life. And even though the water moves and the wind blows, I can be assured that every step will be firm if I focus on Him. We must obey his firm yet loving command to get out of our comfort zone and walk in faith.

Because it is in those moments of fear that our faith is strengthened.

And even when we fail, as I am sure I did this week in Cincinnati, there is so much comfort in knowing that like Peter, Jesus will immediately catch me and keep me from drowning…as long as I stay close to Him. God’s grace is such a powerful thing.

Will you all join me starting this week in praying specifically over Levi’s airway when he sleeps? Pray that his levels of carbon dioxide and apnea stay in a safe range and that we will be able to avoid the trach at least for a few more years until we see if his vocal cords will wake up? Or better yet, let’s pray that his vocal cords wake up TODAY and all the medical professionals see God’s power! “Ephphatha” BE OPENED! Let’s declare this together over his airway.

Thank you for caring for our family. Our support system humbles us so much and is felt on weeks like this one.

Much love,

Leah

 

Step by step. Day by day.

If you could see our calendar you would likely laugh out loud. Yes, it is full of appointments for the boys but it is also full with our other part time jobs (aka necessary income) as soccer coaches and youth pastors. There is a whole lot of color coding required for our whiteboard calendar haha. This week all of the roles we fill managed to collide in a messy and crazy way, but we came through mostly unscathed!

Honestly, Jake and I love both of these part time jobs even though it can be logistically challenging to do. We also feel so strongly in a solid work ethic and want to be able to give 100% to each and not allow child chaos to interfere with our ability to give each group our full attention. And so far the boys have always been up for the adventure!

Sundays we get up bright and early and head to church.Yes, even when we are running on 3 hours of sleep. Church for us is not an obligation or something we want to check off the list. It is a much needed soul refresher for us as we get the chance to be around our Christian brothers and sisters and worship God together. What a blessing Sunday mornings can be if you allow them to.

A few Sundays a month I sing with the praise team which means Jake and I drive separate to church since I have to be there an hour early to practice. Yes, this is a challenge for us but we feel strongly that we are called to plug ourselves into our church body and serve where needed. We each take a kid and take on all medication, clothing, and feeding responsibilities for that kid. Sunday evenings we are back at church to teach the youth lesson.

Monday and Thursday mornings this summer we get up and head to the high school soccer field where we have optional open fields for the girls. We take the boys with us so we have to make sure everyone is medicated, fed, and changed before we leave.

Mondays we load up from soccer and head into town for Malachi’s horse therapy. This week we also had a dentist appointment for Malachi that afternoon. Then at 7pm I headed back into town to be a guest speaker at another church’s youth camp.

Tuesday morning we drive back into town to take Malachi to swim therapy which is immediately followed by Levi’s physical therapy. That afternoon I took the youth group to a local Christian concert from 5:30-midnight. Yikes that one was a challenge for my very tired mind!

Wednesday I hit the road to take Malachi to Vanderbilt- a trip that lasted about 13 hours total. We usually teach the youth on Wednesday evenings but had to find someone to fill the spot this week. Jake and Levi stayed home and had some good bonding time!

The rest of the week was manageable with pharmacy runs, insurance calls, and trying to catch up on housework. We went to a birthday party on Saturday at a local park and Malachi had so much fun playing on the swings and slides!

Crazy, yes. And this coming week is just as intense. Which is why we always focus on taking life day by day.

Now to move on to medical updates…

Dentist: Little known fact- Malachi only has one real tooth. He has had some major dental surgery done and all the other teeth are capped. We go in periodically to have them checked and everything still looks good. We call his one final real tooth his “accountability tooth” as we assume they left it to see if we as parents could keep it cavity free haha. We passed the test and are good to go for another 6 months.

Brushing his teeth is like trying to brush the teeth of an alligator. But we do the best we can.

Vanderbilt: Malachi sees a wonderful orthopedic surgeon at Vanderbilt. We trust this man very much and, just like I suspected, he mentioned that it was time for surgery. Malachi’s feet are turning out and up again. This is a byproduct of his brain damage- his brain is telling his tendons to pull tighter and it is starting to change the anatomy of his bone structure in his foot. Those bones don’t “permanently solidify” for a few more years so now is the time to do some molding and reconstructing.

In December we will be doing heel cord releases in both of Malachi’s feet and possibly in one of his hips. His hips are both 100% out of socket, another mis-communication from his brain to his tendons. The left hip is much higher than the right so while he is under we are considering trying to loosen that up a bit. Each surgery site will have to be cut open and each tendon cut and sewn back together. He will be in casts for about 4 weeks.

We have gone soooo long without a surgery for Malachi and I am so disappointed to hear that word again for him. But I also want to make sure that Malachi is comfortable and not in long term pain so I see the need for this one to happen.

The truth is, as Malachi’s life goes on he will continue to develop more issues with his health. While we have had a wonderful break from medical interventions for him, this appointment was my reality check.

Malachi was fitted for a scoliosis brace last visit and when we put it on him the pressure put him into some major seizures and projectile vomiting that lasted for 4 days. We decided we were done with that brace as it was not worth the brain sparks for him. I explained that to the surgeon this week and he understood our decision and supported it. Unfortunately his hips being out of socket are causing him to sit crooked, worsening his spine. It is something we are definitely trying to keep an eye on and will likely drive some major decisions in the near future regarding more surgeries.

Until December’s surgery comes Malachi is getting a break from his AFOs (leg braces). At this point they are doing more harm than good. So I went to Old Navy and let Malachi pick out some “big boy socks” and he was enthralled in the process. We got socks with bugs, sharks, stripes, and so much more. I give him two options every morning and he tells me which pair he wants to wear. When I put the first pair on him right after we bought them he was giddy with excitement and couldn’t stop giggling.

His little feet are so distorted and we always strive to preserve his dignity. When people look at Malachi we want them to see his beautiful smile and sparkling eyes and not be distracted by his physical differences. So until we straighten out those beautifully imperfect feet we will let him wear cool socks.

We also ended the adventure with our annual trip to the Rainforest Cafe in Nashville. He has always enjoyed going there and listening to the jungle animals and noises. But this visit he was so engaged! He was making the noises back to the animals, roaring back at the tiger and screaming back to the elephants. I could see so much of a change in his imagination- it was really sweet to see. He also made some pretty amazing eye contact with me in the restaurant’s low light. That moment of recognition on his face always makes my heart flutter.

We have been working this week on spoon feeds and his communication device. I took this video to share with you:

We also played a whoooole lot this week. Malachi is re-discovering toys now that Levi wants to play with them. Yep- the jealous bug is still biting in our house. He also got to play with a special whistle rocket (a “big boy toy”) with daddy.

He is all about being a big boy these days and getting to do things that Levi isn’t allowed to do yet. And he is still helping mommy babysit each morning. Such sweet boys.

Levi is still doing well! His personality is continuing to come out and he makes us laugh every day. He has a flirty smile he can flash at a moment’s notice and has been talking a lot this week. He is allowing me to hold him for longer periods of time, even up to 15 minutes!

This week is a very big week for our boys. In addition to therapies, Malachi will see the neurosurgeon and Levi will see the neurologist. Malachi is also scheduled to get his new bath chair we have been so anxiously awaiting! Then on Thursday morning Levi and I will make the trip to Cincinnati and head straight to the hospital to meet with the pulmonologist who will be doing the bronchoscopy portion of Friday’s procedure. Our original plan was to take the whole family but we weren’t able to get a Ronald room for both nights and transporting gear multiple places in 48 hours sounds miserable, so Jake and Malachi will be staying in Tennessee. Levi and I will head to Children’s Friday morning to check in; it looks like his procedure will be around 11. We will stay that night in the hospital and our goal is to leave around breakfast time Saturday morning.

When we take him for these procedures we are never quite sure what they will find when they get in there. We are always asked to sign consent for several different medical procedures that they may decide to do after they see his airway. So he may need another supraglottoplasty (epiglottis trim), another balloon dilation, or maybe something new. We just won’t know until they get in to take a look.

This is operating room trip #20 for Levi. But it never gets easier.

As I mentioned earlier, this week I was given the opportunity to share a message with a group of teens from another church. Jake and I feel that God has given us a testimony that is meant to be shared, so when opportunities come our way we are so excited to get to share the things that God has done in our lives.

As I prepared what I wanted to share I thought back to my sophomore year of high school when the Lord used the book of Job to catch my attention. I had always thought the story of Job was very powerful but I remember reading the first few verses and my eyes were opened in new ways. I realized that Job was not only noticed by God, but God was pointing him out and bragging about him to the devil himself. As Job faced tragedy after tragedy he still praised the name of God. I remember reading that in high school and picturing the pride that must have beamed on God’s face as he watched Job praise him in spite of the devil’s attacks.

I remember being a young teenager and praying that I too would make God proud, regardless of any trials I went through. I prayed for a Job moment…a moment I would be tested….and I prayed that I would have the faith and strength needed to pass that test. I prayed that I would be able to be righteous just like Job.

And boy, oh boy, did I get my Job moment. Or should I say moments.

Whether or not I am passing that test, I won’t know until I see God face to face. But what a challenge it is to praise Him in the storm. I know many times I have failed. But I hope that my faith in some of those dark moments has given God something to smile about.

I have had a verse continually playing in my head over the last three days. I have no idea what sparked it into my brain, and honestly didn’t know the context until I took the time tonight to look it up.

It comes from Isaiah 30:

“How gracious he will be when you cry for help! As soon as he hears, he will answer you. Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. 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.” 

There are a lot of things that spoke to me in this verse. God’s readiness and eagerness to comfort us when we are in need. The reminder that sometimes we are given adversity and affliction from the Lord…not as punishments but as opportunities to strengthen our faith and character. Like bread and water, these moments of affliction are necessary to strengthen us. But the biggest reminder for me in this verse comes from the last line…

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.” 

Jake and I walk daily down an unknown path. Often times that path is dark and we cannot see past the step we have just taken. We are called to a complete life of faith in God.

But this verse has brought me so much comfort this week, particularly as we have had to talk with surgeons for both of our precious boys.

No matter how dark our path may get, no matter how unknown the road will continue to be, God is with me. We face so many decisions and are pulled to the left and right by so many voices and opinions. But what a comfort we have in knowing that God’s voice will ring out louder than all the rest as He guides us. My prayer is that He continues to speak in such a commanding yet loving way and say “This is the way; walk in it.”

The New Testament references Christ as the Shepherd and us as the sheep. He says in John that “My sheep listen to my voice; I know them, and they follow me.”

But how many times do we drown out the voice of the Shepherd with our worry, our pride, our desire to control the situation, our false illusion that we know better,

When all it takes is listening for that voice of God. A voice that is ready and willing to guide us down a beautiful path that He has designed for us.

So as we take some big steps down our dark path this week I pray that I am able to drown out my fear and replace it with faith in the guidance of God. Faith over fear.

And I hope next week’s entry is full of good surgery reports!

Much love,

Leah

 

Updates time! Every time I get ready to type a blog update I have to look back at the calendar to jog my memory about what we accomplished this week. We work on a day-to-day basis and once it gets checked off the list I tend to push it out of my brain to make room for more important things. But we managed to cram in a lot of activity over the last seven days.

Malachi absolutely loved going to Vacation Bible School this week. We made sure to call it “VBS” instead of it’s formal name- we forgot a few times and his face lit up thinking he was going to get to go to school.

Often when people look at Malachi they see him as a fragile little boy and don’t want to try too much with him. We always explain to people that he is very much a five year old boy who loves to talk about bodily functions (poop, farts, etc) and loves rough play. When water day at VBS rolled around I told them to soak him! They looked at me like I was joking, and I explained that we had prepped for the water and everything he was wearing and riding on could get wet. They sent me this video:

He made it 4 nights without having a single seizure at VBS and had just a short minute long one on the final day. At home he is only having about 2 a day which we are pleased with. He will go to the neurosurgeon next week and we will talk about these new seizure changes/types with him.

We started summer therapies with both boys this week which kept us on the road Monday and Tuesday. Malachi had his first swim therapy lesson and he wasn’t so sure what to think. The whole concept seemed to confuse him but we think he will do better next week now that he has a frame of reference. Then immediately after Malachi’s water session, Levi had his first physical therapy session.

So far it seems that he is progressing at a decent pace. He isn’t too far off the mark as far as milestones go for his corrected age. This week he will hit 7 months old!

We had a very frustrating appointment day this week that had me pretty riled up. A few weeks ago we met with Levi’s pulmonologist in Chattanooga for the first time since the NICU consult. That appointment went well- so well that he asked that I come back on one of his days off so we could talk about the different things the Cincinnati team had tried on Levi. He was so curious to learn about what worked and what didn’t for future patients. He said in exchange for me taking the time to walk him through the photos and videos he would type out a solid Complex Care Plan. A CCP would travel with us and anytime Levi unexpectedly ends up in the hospital it would be a step-by-step plan for his providers to follow as far as oxygen. It would prevent us from having to fight against intubation.

So Friday was the day of that appointment. Jake and I woke up bright and early at 6:45 and packed up the boys and headed to Chattanooga, a 1 hour drive from our home. As we drove I explained to Jake that this appointment shouldn’t take long and we could make a date of it! There were some “Escape” rooms close by that were willing to let Jake and I take the boys in as an anniversary date.

We got there early, as we usually try to do to make sure we are being respectful. We checked in and we waited. And waited. And waited. After an hour of sitting in the waiting room I stopped by the front desk to make sure we hadn’t been forgotten. She said that the doctor was running behind, which sounded odd since this was supposed to be his day off. When we scheduled it a few weeks ago they chose this day because he was off and “wanted to be able to devote a solid hour to talking with us. ”

After 30 more minutes of waiting the receptionist offered to have one of the other providers see us, since the one we were scheduled with was so far behind. I explained to her that the only reason we were here was at the request of that doctor and he had asked us to come in. This is when I started to get beyond frustrated. We were taken back to a room where the nurse explained that there were still two other patients ahead of us to see the doc.

I went back out to the front desk to ask if we did see the other provider if he would be able to give us the Complex Care Plan that the original doctor had typed out for Levi emergencies. While I was talking to the receptionist I noticed the doctor that we were so patiently waiting on was sitting in the back room behind the desk. Not seeing the two patients ahead of us. Just sitting.

I took a deep breath and tried to make up excuses for him in my head as the receptionist went back there to ask him about the Complex Care Plan. My imaginary excuses were WAY better than his real ones as he came to the front desk to apologize for running behind. He explained that he was a little mentally slow as he had just gotten back from his vacation in Europe and was jet lagged. He said that it would be fine for us to meet with his co-worker, to which I replied that the ONLY REASON WE WERE THERE was because he asked us to come in and meet with HIM on his day off when he would have time to talk to us?! He said that he decided since he was scheduled for us that he would go ahead and fill his schedule with other patients for the day.

Then the kicker comment came: “Well I have an appointment at noon anyway that I have to be at so I won’t be able to meet with you today.”

It was 11:45. We had been there since 9:30. I asked if we could at least get his complex care plan, to which he replied he had not done one.

I don’t quite know how to explain my emotions; Levi’s face in the above picture is a pretty good summary. It wasn’t so much anger, but just a feeling of being so disrespected and not being able to do anything about it. As a special needs family, we have to get up hours before a typical family for an appointment like this. We have to pack oxygen tanks, feeding pumps, food bags, emergency kits, wheelchairs, bottles, medicines, and so much more in preparation for a day like this. I literally have to make checklists of things to make sure to pack for every possible scenario and the prep for an appointment day takes hours.

I asked the receptionist if we could be seen by the other provider and he came in within a few minutes. We started allll over with this man, explaining Levi’s Cincinnati history with him and trying to come up with a plan for him. This doc said he was willing to type up a Complex Care Plan for Levi and would be happy to take over his care as we explained we are DONE with the other guy.

Side note- the original doc was also the one who said he would contact Cincinnati for us while we were in the Chattanooga NICU…and he never did. Doc #2 is the one who actually followed through for us and helped facilitate the transfer to Cincinnati. We have a lot of respect for him and are happy that he is willing to take Levi’s case from Doc #1.

Okay, so why the long ranting and raving story? Frankly I just wanted to vent. To tell you the truth, there is usually always a story like this in each blog entry- but I usually end up deleting them as I see they did not serve a purpose. But I also know there are several medical friends that follow the blog and I want you to see a perspective from a special needs family in a situation like this. Unfortunately, appointment days like this are far too common. We have been forgotten in waiting rooms before, spent 4+ hours waiting to see doctors, and just been treated with so much disrespect. Yes, emergencies happen, and we have been the cause of others missing their scheduled doctor times due to our boy’s emergencies. But please understand how much time and effort goes into being on time to these appointments and if you only knew the sacrifices we have to make just to get there. A little empathy goes a long way in SN land.

By the time we left neither Jake or I felt like heading to our “Escape” room adventure so we changed plans and went out for an anniversary lunch instead. We don’t buy each other gifts, and in place try to make a memory. We hadn’t been to a “Fancy Restaurant” in years and thought we might be able to pull it off at lunchtime with the boys.

We went to an old favorite, J. Alexanders and as soon as we walked in (picture a wrecking ball of medical gear walking into a china shop) I felt out of place and embarrassed. I look at my drool stained top from snuggling Malachi, trying to keep him happy as we waited. And I just felt so unworthy of being in such a nice setting. Our lives are practical. Our lives are comfortable, in a chicken casserole southern way. Our lives are survival and combat gear. Our lives are unpredictable seizures. And our lives are filled with poop. Lots and lots of poop.

They led us to a table, and as they always do, everyone stared as we walked. I could feel my face turning red and I had to take a deep breath and remind myself that YES…we did in fact belong here. Jake and I are celebrating 10 years of a beautiful marriage. Our lives may not be comfortable and neat like the people eating at the tables around us, but we deserve to celebrate!

And it was delicious.

Our anniversary was actually on Thursday, but since we had a packed schedule we chose to celebrate on Friday when we would be in Chattanooga anyway. But we also felt like we couldn’t just ignore the day completely on Thursday so we went to a local arcade and spent an hour and $20 competing, Jake and Leah style. If you know us you are probably smiling right now. We are a very competitive couple and always have been. But it is all in good fun and we really had a blast. I think we are going to make that a new tradition for anniversaries. Can you imagine us as 80 year olds ski-balling it up?! We also went to a local restaurant Thursday night after the arcade and ate desserts for dinner.

And for all you Rumpke the bear followers out there, he has not been back! He must have caught wind of our plan. We still assume he is coming every night and have the shotgun out and ready to go in case he returns. He hasn’t been by our house but has been over at the neighbors based on some prints he is leaving- some even on the side of their actual house next to the windows. YIKES!

One of the things that I love the most about summer time is the amount of time Jake and I get to spend together. We have yet to run out of things to talk about, but one of the things I cherish the most is our conversations about God. I am so blessed to be married to someone that loves the Lord as much as I do. We talk about really deep things, and then sometimes we talk about useless things like what country Guinea Pigs are originally from (let me save you the time on Google and tell you that they were originally a food source in Peru and Bolivia…nasty huh).

But one of the more common things we talk about is the charge we have been given in raising these two boys.

This week I was reminded of a simple verse in John 3 and I read it with new eyes:

“He must become greater; I must become less.”

In it’s original context, this was spoken by John the Baptist in reference to Jesus. But I want to rewind a bit and take you back to before John the Baptist was even born.

In Luke 1 we read about Zecheriah and Elizabeth, two people that earned the adjective “righteous”. It also mentions that Elizabeth was unable to have children. One day while Zecheriah was in the temple he was visited by an angel. The Bible says:

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

I remember reading these scriptures when I was pregnant with Levi and praying these over him. I prayed that he would be a joy and a delight to us and that people woudl rejoice because of his birth. I prayed that he would be great in the sight of the Lord. I prayed that God would choose to fill him with the Holy Spirit even before he was born. I prayed that he would bring people to God with the spirit and power of Elijah. And that he would prepare people’s hearts for the Lord.

So fast forward to that scripture this week: “He must become greater; I must become less.” I thought about the fact that, like John the Baptist, God has prepared each of us for specific tasks. Some of us find those tasks early in life. Some later. In John’s case, he knew that he had reached his task of preparing the way for the Lord, and stated “He must become greater; I must become less.”

I look back at our relationship and see all the ways that God prepared us for the task of raising Malachi and Levi. And as we dive into this new life as parents I find myself saying “He must become greater; WE must become less.” God’s presence in our family must grow greater, and our selfish tendencies must become less. As I thought more about these words from John I couldn’t help but see the beauty and contentment in them. He understood that he had been created for that moment…that task. And it brought him joy to do it.

I pray that God’s presence in our family only continues to grow greater, larger, and more enveloping. I pray that Jake and I are able to remove the selfish moments from our lives when we forget that this task we have been given is one that is so rich with beauty. What a gift we have been given to have two daily reminders that refocuses us and our priorities in life.

Please pray for safety this week as I take Malachi back to Vanderbilt to see the orthopedic surgeon. There have been so many negative changes in Malachi’s spine, feet, hips, and legs and I am afraid we are going to have some pretty intense conversations about the next steps. Next week we will be taking Levi back to Cincinnati so we will be covering lots of highway over the next two weeks. We also have a host of other appointments sprinkled in throughout the week to try to get through. Pray for health and strength for all four of us so we can be at our best.

Much love,

Leah

 

 

 

As I type this update I am sitting next to the window in our bedroom. Tonight it “THE” night. If you have been following the blog the last few weeks you will know that we have a bear living close to the house. While we love that we live in a remote area with bears living close by, this particular one has been visiting the house almost every night for a few weeks. We have stopped putting trash in the cans but each night he comes up to check them anyway. We have moved the cans, tied them to the trailer, you name it, but still he comes and finds them.

He is just a little too close for comfort and simply eliminating his snacks (aka trash) has not deterred him from our front porch. The spot that he hangs out is out of sight from our door and we are very uncomfortable when we have to carry the boys in and out of the cars.

Tonight we are transitioning to Plan B. We have put the shot gun and some bird shot by the back door and rigged the cans to make some noise when he messes with them. I put some old stinky egg salad into one of the cans to make sure to motivate him with the goal being to fire several shots into the air when he is messing with the cans. We are hoping he will attach fear with the trash cans and stop coming around. Let me make sure you all hear me say, we are not physically harming the bear! Just trying to spook it a bit.

We also put out some trail cameras so we could get some pictures of him tonight and then verify if he is coming back the rest of the week.

The thought of waking up from a dead sleep and having to grab, load, and fire a shotgun makes both Jake and I nervous (in a healthy fear kind of way) so we did some practice runs this afternoon while Malachi was at Vacation Bible School. We thought the loud noises might scare him too much.

We will let you know how Plan B goes! I have a suspicion we may have a funny story for you next week.

I was talking to some friends this afternoon who follow the blog and they were laughing at all the crazy scenarios we find ourselves in. I feel like our life is so outlandish that it sounds like we are making things up…but be assured…all this nonsense legitimately happens to our little family. You can’t make this stuff up!

Okay now on to more updates.

Summertime sure is something special. I feel like a whole new woman this week as Jake has been able to consistently help daytime and nighttime with the boys. Sleep can be a magical thing!

While I am feeling rejuvenated with my 6-7 hours of sleep a night, it is taking its toll on Jake who was used to getting 8+ during the school year. Sleep deprivation can make you do some pretty silly things, and Jake’s week has been full of them. We are taking turns napping during the day and I feel like I am getting spoiled rotten with all this sleep. And highly amused by Jake’s antics.

We had some pretty bad storms this week which proved to be a bit of a reality check with the boys. The power went out late one night and we realized that we aren’t really set up for long term power outages with the boys. Levi’s oxygen concentrator turned off, alarming loudly so we were able to switch him over to some of the large oxygen tanks we keep on hand. His pulse oximeter machine and feeding pump had enough of a charge to stay running through the night so he was good to go.

We keep Malachi on a video monitor at night so we can hear and see when he has seizures and get to him quickly. The one we use has been on since the night we brought him home and the battery is no longer charging, so Jake slept on the floor of his room that night. All that to say, we can function for short periods of time without power but it really made us nervous thinking about a multi-day outage. Looks like it may be time for us to consider looking into generators.

This was our last week before summer therapies and appointments begin so we crammed in as much fun as possible for Malachi. On Monday he went to a friend’s house for a play date which was a much needed mommy session for me. We met these particular friends at one of his neurosurgery appointments and one of the twin boys has a shunt like Malachi. It is always refreshing to be around people who live the same type of life as you and have some of the same worries and fears.

Malachi also went for his first swim of the summer! If you are new to the blog, swimming is one of his all time favorite things to do. He wears a therapy neck ring and can swim independently- he is actually a really good swimmer and loves that he can do something without support from mommy and daddy.

We have been working hard since we got home from Cincinnati to get some much needed things for Malachi through insurance. A little glimpse into the special needs world- for nearly all of his equipment (wheelchair, bath chair, activity chair, etc) he can only get a replacement every 3-4 years. So whatever you get requires lots of thought and research because you will be stuck with it for a long time!

Malachi has outgrown his bath chair so that was the first thing I attempted to get. His primary insurance said that it was a “comfort item” and refused to cover it since it is not medically necessary. Luckily his secondary insurance that he gets due to his disabilities picked up the bill. They usually cost $1,500-$2,000 so we are very thankful. It has been ordered and should be here next month.

The second thing we sought after was a special needs car seat. The one he uses now still works decently but his positioning in it is terrible. We always have to be on guard for things that will make his skeletal system, and mainly his spine, worse. Since we have to have the car seat for 3-4 years we did some major research and went for the fancy one. This one has a swivel base that allows it to turn to the door to load him in and out of it, saving some major twisting for him, and major back stress for me. It has speakers in the headrest (totally unnecessary but pretty awesome). Shockingly, his primary insurance approved it and the seat came in this week!

It does not have a 5 point harness so it functions more like a booster seat, requiring the seat belt in addition to the positioning straps. But my goodness what a difference it makes with how he sits. He is nearly at 90 degrees and his head is aligned at midline. It also has a tray that we can strap toys to for long rides. The swivel base did not come in yet but is on its way.

 

As you can see, Malachi also got a much needed haircut this week!

The other victories with insurance this week is that they are now covering diapers for him. Praise the Lord! In addition to the diapers, we have also been able to justify them covering a high calorie nutritional drink that we give him once a day. These two victories will save Jake and I over $300 per month!

It makes me a little sad and a lot angry how difficult it is to get special needs children the things that they truly need. The mark up on items is astronomical and there is no way that we could even remotely come close to taking care of his needs without insurance. But even then, it takes hours upon hours on the phone and that can be a real challenge. And after all that work, insurance still denies quickly requiring several appeals.

But looking at the bright side, there are other people in this world that have gone through the red tape before us and have come up with tangible ways to help. There are so many grants available for special needs families, and while the application process can be intense it is definitely worth it in the long run. Many of the things we have for Malachi were denied by both insurance carriers and deemed not medically necessary but we were able to find grants willing to help us get it for him.

Malachi is getting to go to Vacation Bible School this week at church and really enjoyed the kick off this evening! He was still wild eyed with excitement when I went to pick him up.

And an answer to prayer- Malachi’s seizures have lessened significantly this week, only having 1-2 a day. We are so thankful!

We are still battling jealousy a bit. He makes his “no face” when Jake talks to Levi, or gives Levi kisses. He is also finding ways to act out. When I got him out of his bath chair this week to carry over to the changing table I told him “Don’t pee on momma.” He immediately clenched down and sprayed pee at least 3 feet across the bathroom and then laughed hysterically. Very intentional, no doubt about it! He also bit Jake this week VERY hard leaving a nasty bruise.

Now on to Levi updates. He has changed in some big ways this week too. The biggest change is he has stopped vomiting. We have no idea why but we won’t complain. We also successfully made it out in public several times without him shooting fecal matter onto our clothing! Go Levi!

He continues to be quite the personality and he makes us smile with all his silly looks.

He loves to play with his toys. And he never stops moving. It is almost unbelievable how much this child moves.

He is also discovering his voice, which is such a beautiful sound. I can’t get enough of it! I took a video this week so you could hear him:

I explained it on Facebook this week like this:

For his condition (bilateral vocal cord paralysis) you have to think about his voice quality and breathing ability as a combined 100%. In order to breathe at 80%, your voice quality is only at 20%. If we could get his vocal cords open enough for him to breathe at 100% without oxygen, he would not have a voice. So we are always searching for the best middle ground for both to function “just enough”. But we are very pleased with the combination that we are working with now!

This coming week things will transition back to craziness. Malachi and Levi will start their summertime therapy sessions and appointments. Next week we will have to go to Vanderbilt, and Cincinnati the week after that, amidst LOTS of other appointments. We also start summertime practices with our soccer team. If we can make it through June unscathed, July is looking like a breeze in comparison.

A friend gave me a very special and encouraging gift this week that I wanted to share with you all. It is such a good reminder that even though our arrows are crooked and one of a kind, there is beauty in that. What a blessing my crooked arrows have turned out to be. And boy, do they pierce the hearts of everyone they come into contact with.

Jake and I are best friends. I am not being mushy and dramatic when I say that, but 100% sincere. When we met back in 2003 there was a fun connection between us and we both felt at ease being ourselves around each other.

We quickly became friends, and that friendship blossomed into a dating relationship. We dated for 5 long years before we married, waiting until I had graduated college and got a job/had a steady means of financial support.

The stories from those 5 years of dating would have you laughing for hours. Our youth group loves to hear about all the silly and crazy things we got ourselves into!

But even during those early years it was glaringly obvious and undeniable that God had brought us together. He intertwined our hearts in a very special way and God’s hand has been on us from day one.

This week we celebrate 10 years of marriage. As I look at the journey that God has brought us on with our children, I am increasingly thankful that He chose Jake for me to fight these battles alongside.

The Bible says in Proverbs: “Iron sharpeneth iron; so a man sharpeneth the countenance of his friend.”

Some days are tough. But it seems that in those particular days God makes certain that one of us stays strong to sharpen the other. I am so thankful that God prepared our hearts for one another.

This week Jake and I have been talking about the beautiful life we live with our boys. We are so incredibly blessed- and we aren’t just saying that because it sounds like a good Christian thing to say. There is so much beauty in our lives and we feel so honored that God chose us for this task.

Who knew that those baby faced high school kids would have such a intricate path laid out ahead of them. Well, God knew. And He has ordered our steps from that very first moment our hearts connected.

Well, I think the bear is pulling a “tooth fairy” scheme and waiting for me to fall asleep before coming by for a visit. I better head to bed and get some sleep before our adventures begin.

Thank you for continually praying for my arrows. We get so weary, particularly in my prayer time. Knowing we have an army of prayer warriors standing in the gap lightens my load.

God bless,

Leah