This week is always a particularly significant one for our family as we can’t help but flash back to three years ago. My due date was supposed to be May 21st and Malachi arrived very unexpectedly on February 4th. We spent a very long 112 days in the Neonatal Intensive Care Unit and it was May 27th, 2013 that we brought our son home.
I can’t even begin to describe the emotions of that day…there was a mix of excitement, sheer terror, and a feeling of being very incompetent- even though the wonderful NICU staff had prepared us very well for that day. For 112 days Malachi was hooked to monitors that told us exactly what his body was doing, and here we were with a wire free kid, having to rely simply on instincts, common sense, and God.
As you can imagine, we did not take our eyes off of him for a single second throughout the day. I remember the moment that he fell asleep for the first time at our home. I wanted so badly to stare at him until he awoke but exhaustion was wreaking havoc on my body and mind. I said one of my most sincere prayers to God, asking that he protect Malachi while he slept.
So here we are, three years later. Although Malachi is still very much medically complex, Jake and I have learned his every move. We can hear his silent seizures from a room away simply by listening for his breathing patterns to change. We can predict a vomit before it officially comes. I can tell you what kind of day Malachi will have simply based on the first five minutes of him waking up. He is one quirky kid, but we love each and every one of those quirks.
So three years later, I would like to tell you a little bit about our Malachi.Some of this you may already know, but it will give you a good summary of how he is doing!
SLEEP. If you have been following Malachi’s journey for awhile, it is no secret that Malachi is a terrible sleeper. It isn’t his fault, but instead we blame his brain. His brain wave patterns have been described as “chaotic” and never calmed down enough to allow him to get into a solid REM cycle. For the first two years of his life, he commonly would sleep only 3-4 hours per night with no daytime naps. Last month, we were thrilled that he was sleeping two hour chunks (two hours asleep, two hours awake). This would continue until we hit 5-6 hours of sleep added together and then we would be up for the day. The sleeping chunks had no rhyme or pattern so we were still very much in survival mode.
But I am pleased to report that Malachi is starting to establish a pattern! For the last three weeks he has been routinely going to bed around 10:30 and sleeping until 3:00. Like clockwork, he will stay up EXACTLY 2 hours and go to sleep around 5:00. It is truly amazing how accurate this new pattern is. He will wake back up again at 6:30, and on good days I can get him to sleep in the bed with me for another hour. I can’t even describe to you how refreshing these solid chunks of sleep have been for Malachi and me. Praise God!!
FEEDINGS. Malachi has a diagnosis of “Failure to Thrive” meaning he needs to be watched closely to make sure he is growing properly. He has been skin and bones for several years prompting several discussions with medical professionals about the necessity of a feeding tube. I don’t know if you have noticed lately, but Malachi is one fat dude. Once his tonsils came out, he nearly doubled his food (and calorie) intake and Jake and I are now worried that he is too big for his age and frame. Never did we imagine we would be saying that!
In an effort to feed him less bottles, we are trying to get through the day with lots of snacks. He is very eager to eat from a spoon but cannot take any large quantities yet. Texture is still an issue for him, but he is progressing quickly. Even if we are able to get him solely on spoon feeds we will still have to hydrate him with a bottle or sippy cup, so we are working on both facets of the transition.
MEDICALLY. Right now Malachi is in a really good place medically. Aside from his upcoming dental procedure, there are no issues on the horizon. He has a shunt in his brain that could malfunction, but we have been very blessed that his is still working wonderfully. He is still having seizure sparks every day (4 on average) and will have a large seizure (30 seconds or longer) once every week.
The best medical update is that Malachi is no longer vomiting on a daily basis! In fact, he went a whole two weeks without a single vomit until this afternoon’s mayhem! One year ago he was vomiting 6-8 times each day. His reflux is still an issue that requires daily medication but it is improving!
He is still legally blind, but we are seeing improvements in his peripheral vision, as well as his vision in low light settings. In fact, just last week I was able to snap a picture at the Rainforest Cafe which was VERY low light and he was looking directly at me. It is so rare to see this that it almost doesn’t even look like him in the picture!
Last week’s blog covered his orthopedic issues so we won’t rehash those again! Malachi’s cerebral palsy also affects his core and head control, but both of those are continuing to improve. His CP also affects his hands and causes him to tuck his thumb inside of a very tight fist. We do stretching with his fingers and hands to help relax the ligaments but he is often fisted, as you can see in the above picture.
SOCIALLY. Malachi has become a social butterfly and loves to be around other people. He particularly loves crowds and new voices. He also has an amazing memory for people and places that he especially loves. He anticipates things more than any child I know, so we tell him way in advance what we are about to do. His physical body changes, tight with excitement, and his eyes fill with wonder as he listens intently for clues that we are close to his adventure.
Malachi loves to play. He can make just about anything into a game and will engage anyone who will allow it! He will fling his head down to his chest in his wheelchair just because he knows I will tell him to lift his head back up, which he will do with a mischievous grin and fling it again 5 seconds later. Lately he has been pushing off of things to move his wheelchair and other rolling seats all by himself. He is finally playing with the (what feels like) hundreds of toys we have for him, and loves anything with cause and effect. And yes, he still makes it his mission to color on the table instead of his paper. Little goober.
He will also listen closely for someone to come near him and try his very best to hit them with his hand. He thinks that this is the silliest game invented, as most people react surprised to getting hit by him. He will play this game for HOURS if you allow him to.
Malachi desperately desires to interact with the outside world, and in turn, for the outside world to interact with him.
It is rare to not see a smile on Malachi’s face, and his laughter is truly contagious. This video is a prime example:
I wish I had the mental focus right now to reflect back on the many lessons we have learned in the last three years. There have been so many teaching moments from God! Jake and I were talking tonight about our life and agreed that one of the biggest lessons that has brought us the most peace has simply been this:
To live a life of contentment.
Contentment is not easy, nor is it natural. It is something you have to choose to do. It requires you letting go of your preconceived notions and simply learning to enjoy every facet of your life- including your trials and challenges.
And you know what- I don’t think that true contentment is even possible without the presence of God in your life. Because it is through the peace that He brings that we can learn to set up camp in a storm.
Do we want Malachi to be fully healed? ABSOLUTELY. But we look at the ways that God has used Malachi’s imperfections to bring others closer to Him. Although our son is not “whole” by the world’s standards, we are perfectly content with God’s plan for his healing- whether it happens here on earth or in heaven.
Contentment has carried us through these last three years.
If you are looking for a mini-Bible study, I encourage you to look up these verses on contentment: Philippians 4:11-12, 2 Corinthians 12:8-10, Isaiah 26:3-4
So now to end the blog on a humorous note, I have decided that like the “Truman Show”, I am a star of a reality TV series that I know nothing about. I have found myself looking for hidden cameras so frequently over the last few weeks, thinking surely someone is playing a prank on me.
While our appointments have been slowing down, we still have around 7 or so a week that require us to be out and about in public settings. Somehow we always tend to attract interesting people, and this week was no exception.
Let me set the scene…
Malachi had a routine appointment with the neurologist at our local children’s hospital. It is normally a 1 hour drive, but due to rain and a wreck it was a grueling 1.5 hours before we pulled into the parking garage. At this point, I was frazzled and literally racing to the basement, knowing that if you are more than 15 minutes late the appointment gets cancelled.
Malachi was having the ride of his life as we zoomed down the hallways and to the elevator. There was a nice big sign saying “Out of Order” (figures) so off we zoomed to find another way down. As we neared another set of elevators we passed a long train of a family that was walking slowly toward the same elevators. They saw Malachi and asked “How old is he?” and I politely replied that he was 3. Then one of the girls (about 16 years old) walked up to him with her hand out and asked “Oooh can I touch him?” This alone caught me off guard, as we are not fond of strangers touching Malachi. As I was hesitating trying to think of a kind response she jerked her hand back quickly and said “Wait, is he nice?”
At this point, I started looking for the hidden cameras. In the meantime, a nurse had also arrived at the elevators and overheard the comment. She snorted when she heard and we made eye contact for a brief second. Her eyes were wide with amazement and shock, as were mine. I slowly and kindly responded, “He’s not a dog- he won’t bite.” At that exact moment two elevators arrived, one going up which my new friends got on, and one going down which we jumped on very quickly. As I rode the elevator I started laughing uncontrollably like a weirdo as I replayed the interaction. People don’t think before they speak. Jake and I rarely get upset at ignorance, we just laugh it off, and this was one of those times.
I checked in for my appointment and they instructed me to have a seat in the waiting area. I got out my phone and texted Jake telling him about the crazy comment and after I hit the send button the door opened and in popped a child’s head. She looked at me and yelled: “She’s in here!” and the entire family of 6 from my upstairs encounter proceeded to pour through the door and all sat next to me…yup, both sides of me. No, they did not have an appointment with neurology but were supposed to be waiting in the room down the hall for x-rays. For the next five minutes they asked me many, many questions about Malachi. Some typical ones, and many too offensive to even repeat. They weren’t purposefully rude but simply ignorant. I answered each one of them as lovingly as possible, but the receptionist at the desk was wide eyed with shock at what she was hearing. She immediately called back to the nurses station and asked them to take me to a room quickly.
At this point, I was absolutely convinced that this was the show “What Would You Do?” but alas, it was simply just another crazy day in the life of the Carrolls. Moments and comments like these are a little too common in our days, but truthfully the humor in them usually works it’s way to the top relatively quickly. Jake and I have laughed about that one for days!
I want to thank you for taking the time to pray for my grandmother last week. She has been moved out of the ICU but is still recovering in the hospital from double pneumonia and secondary infections.
We still very much need your prayers for Malachi, that he remains healthy leading up to his procedure on the 6th. Pray also that God will continue to rewire his brain around the damage and that we will continue to see improvements with his little body.
Thank you for taking the time to check in on our little miracle! And for listening to me ramble haha!
Jake, Leah, and Malachi