I haven’t done a medical update for you in quite awhile so I figured we would kick off with a few updates on each of the boys.
He isn’t scheduled for another Cincinnati trip/surgery until June which is amazing! He will be put under anesthesia the day after Christmas for an MRI so we can see if the spots of brain damage have changed since his last MRI. This is being ordered by his neurologist and will give us a better picture of what impairments we might be looking at. Although he is catching up with his milestones there are several red flags that still indicate that Levi may get a cerebral palsy diagnosis due to some low tone in his legs and core. They typically don’t formally label a child with CP until after their 2nd birthday.
Levi will also have another dreaded sleep study a few days before Christmas to make sure he is still safe to sleep without oxygen. He will still have his routine specialist appointments with neurology, pulmonology, gastrentergology, and the eye doctor but at this point there are no major changes with his care in those departments. He is also getting weekly feeding therapy and physical therapy. He is down to only taking one dose of medicine a day to help control his reflux.
Levi has been fascinated with his g-tube lately which makes me a nervous wreck. He is so sneaky about it too, reaching down the front of his onesie when we aren’t looking. One of my personal goals is getting him to take enough calories by mouth to eliminate having to do any daytime feeds through his tube. We are very far from that goal, but he is making progress. He is even able to eat an entire french fry without choking which is wild!
He is trying to figure out how to run which has made life a little more interesting haha. He is one fast little rascal! And he is mastering this whole temper tantrum thing which to be honest is a bit hard to not laugh at sometimes. That boy could win an oscar award for his performances.
Jake and I were talking today about how much chaos he has added into our lives, but how wonderfully that chaos and normalcy feels. We can’t imagine life any other way.
Like a sour patch kid, he also has a sweet side and says “I wuv you” to me unprompted at least a dozen times a day. He also pretends that everything is a phone and calls his daddy on it. This morning he was acting up in church and when I turned to get onto him he quickly folded his hands and closed his eyes to pretend like he was praying, trying to get out of whatever lecture he was about to receive.
And just in case you hadn’t already figured out that Levi is a spitting image of his daddy, here is a side by side comparison for your enjoyment:
Malachi has been so healthy this year, which is something we are confident God has orchestrated. We haven’t had any surprise hospitalizations for him in over a year as his sicknesses have been able to be managed at home. His immune system is still a little wonky so we are still cautious around germs.
Malachi is taking 7 doses of medication per day, five of those being seizure meds. After his recent neuro appointment we increased his CBD medication a bit to try to control the seizures a bit more. He is down to having about two a day, and the CBD oil increase seems to be helping decrease their severity. We still carry a rescue medication for him in case his seizures last longer than 3-5 minutes but most of his are currently lasting under a minute.
We watch Malachi very closely for any changes since he can’t verbally communicate issues to us. We have to know every detail about him so we can spot a change quickly. When the seasons change sometimes he has a hard time adjusting, so this week he has been dropping his temperatures a little too low at night (just under 97 degrees). When I get him out of bed he is ice cold and it takes at least an hour to get his body temp back to a safe spot.
Since we increased Malachi’s CBD oil we are noticing him trying to visually see things more. I know I say this a lot, but just in case you are new to the blog: Malachi has something called corticol visual impairment which means his eyes are structurally fine but his brain prevents him from seeing. He has certain settings that you can tell he sees better in (like low and natural light) but he has been trying really hard to look at things this week, regardless of the setting.
I snapped this photo earlier this week at a soccer game and it gave me chills to see him looking at me. Beautiful boy.
Malachi broke his 4:04 wake up streak PRAISE THE LORD! He seems to be settling on 5:18 but time will tell. It really is fascinating how his little brain works.
Malachi’s school picture
Malachi’s classmates haven’t been healthy so I kept him home with me for most of the week. I work on Mondays, Wednesdays, and Fridays and obviously both boys came along. The older Levi gets the more difficult it is for me to keep him content sitting in the office. He loves sitting with Malachi and this week I caught him helping Malachi play the keyboard. He held his hand and used it to push down on the keys for Malachi. It was just so sweet.
Levi loves to open and empty every drawer he can gets his hands on…the copier, the desk, the bookshelf…. By the time Friday rolled around I was mentally exhausted from chasing him around the office and keeping him out of dangerous situations. In an effort to keep him entertained I tracked down a used play kitchen this weekend and filled its drawers with pretend food and dishes. I am crossing my fingers and hoping this is the answer but I am little afraid to get my hopes up. Tomorrow will be the big test!
This week we are hoping to knock out flu shots for all of us. On Malachi’s first birthday he contracted the flu and we almost lost him. We spent two weeks in the ICU battling pneumonia, so for us shots are a must.
There is also a chance that we will get to see our Chick-Fil-A buddies this week at the apple orchard!
Speaking of Malachi’s viral Chick-Fil-A post, a few months ago we were contacted to do a podcast interview about the incident. We conducted the interview via phone on the way home from Cincinnati and it aired this week. Here is the link if you are new to our story and have any desire to listen: https://speaking4him.sermon.net/main/main/21460542
I know I have mentioned this before, but we recently moved our Sunday night youth Bible study from the church to our home each week. We were hoping the atmosphere change would bring more of our youth group teens out on a consistent basis. We also bribe them with lots of food haha. Side note- while it is a ton of work, it really has brought me joy to start cooking for crowds again. And it is so important that the teens know that we love them, and as silly as it sounds food seems to be their love language.
God has been multiplying the numbers each week and we are getting 25-35 teenagers out to study the word of God. GOD IS SO GOOD!
We split the group up and the guys go downstairs with Jake and the girls stay upstairs with me. A few weeks ago I felt a prompting from God that we needed to teach them how to truly study the word of God. Our modern world tries to teach them the the Bible is outdated and full of contradictions; that it isn’t reliable. But I feel so strongly that the Word of God is living and active, sharper than any two-edged sword.
So we changed gears and I give them each a printed out chapter (the message version since it is the easiest for them to understand) and a highlighter. They each read the chapter and mark anything that sticks out to them, confuses them, or pricks their spirit and then we have an open dialogue about each paragraph.
I can’t explain the joy I feel when I get to discuss scriptures with these young women and hear their unique perspectives. There is just something about studying the Bible with other believers that is so special. There is no age distinction when talking about God with another sister in Christ, but how often do we limit our spiritual conversations to people our own age?
Tonight we got to a verse that led to a discussion about the common belief: “God won’t give you anything you can’t handle.” I told the girls that this was not true and by their reactions you would have thought that I slapped their mommas.
They were confident that there was a verse in the Bible that said this very phrase, but the closest verse is found in 1 Corinthians where it says that God will not allow us to be tempted beyond what we can bear without an escape already in place.
They told me that believing this phrase had always brought them comfort and when they are faced with something big and say this quote and it gives them the courage to embrace it head on.
I explained that while that mindset works for them in most situations now, there is going to be a moment in their lives where something comes along that they can’t handle on their own. Even the biggest dose of courage and wishful thinking won’t help them overcome it.
At some point in our lives we will all experience true helplessness. A moment where you feel like you are drowning and there is no foreseeable backup plan to turn to. There will be a moment in your life where your only option is to lift your hands to God and call upon His name.
When we believe that God won’t give us anything we can’t handle we accept this master/slave view of God rather than seeing the potential for a true RELATIONSHIP with the Father. God wants to DO life WITH us. Not just write out a chore chart and check the list for completion.
While God doesn’t rejoice over our brokenness, He loves to meet us there as we rest in His embrace.
So yes, we will be given things that we can’t handle. There will be things in your life that are too much for you to process, too much to physically take on, too much to bear.
“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31
But did you catch those early words: “But those who hope in the Lord…”
When we are faced with a hopeless situation beyond what we can “handle” we are called to put our hope in the Lord and expect Him to give us wings to fly and endurance to complete the journey.
We have seen this firsthand on our parenting journey. We have watched God sustain us physically, mentally, financially when we have been stretched beyond what we can bear. We have watched Him preserve our marriage and allow Jake and I to be one mind and one soul.
We have been broken, but God has always met us in our brokenness. He has been our rescuer, our redeemer.
So my challenge this week is for us all to stop letting our pride get in the way of our relationship with God. What in your life has become too much for you to handle? Instead of repeating the lie over and over again that you can handle it alone, why don’t you try taking the road block to God?
Instead of seeing your inability to fix something as a negative, start to see it as the beautiful thing that draws you closer to the Lord.
God bless you all this week and thank you for checking in on our family.