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!