Malachi is officially out of liver failure! His enzyme count was 58 from his blood draw last Friday. Praise the Lord!
This week Malachi and I headed to Nashville for his re-scheduled appointments with his surgeons. Originally this trip was going to happen in late July and last 2 days, 3 nights. Malachi was ecstatic about this trip and when he ended up hospitalized instead he was very disappointed as we had already planned out the itinerary.
With Jake back in school we couldn’t really afford to take the full 3 day trip so I worked with the hospital to get his appointments on the same day on the two different ends of Nashville. Jake got a sub for one day so he could stay with Levi and Malachi and I left for Nashville late Tuesday afternoon.
Since we had less than 24 hours for our trip I tried to pack in all the adventure I could so Malachi would feel like we hit *most* of the things from his original itinerary. On the way to the hotel I stopped and picked up a Crumbl Cookie that just his style!
He absolutely loved it! And since I was on the recovery end of a cold he got the whole thing to himself! Too rich for my blood anyway.
We jumped on the hotel bed and then snuggled up to watch Frozen 2 together. There are a few movies we don’t watch often at home due to their intense content and having Levi around so this was a special treat for him.
We drifted off to sleep but the new environment and the anticipation of the adventures kept him up most of the night. Early the next morning we headed to our first appointment with the spine surgeon at his office. He used to work at the hospital one day a week and we would schedule our appointment to hit both surgeons at the same place on the same day. But he switched with a coworker and no longer did hospital appointments so we snagged one of the early morning ones so we could get in and out quickly.
My plan failed and we sat in the waiting area for 1.5 hours before finally getting called back for x-rays. You all would be shocked at how many different pronunciations we get for Malachi.
Mall-ack-ee (my personal favorite)
But this time around we heard a new one Mall-ee-she and it has a very foreign flair as it rolled off her tongue.
Malachi did great for X-rays as he always does and we headed to a room to meet with the doctor. Malachi’s spine is at a 45 degree curve which is still in the safe range. This is only 1-2 degrees worse than last year so we are happy. He said that often puberty is when they see this biggest change that warrants surgical correction. So until we see major change we will continue to monitor annually. He offered switching us to the hospital provider so we could avoid the two separate appointments and I very gladly agreed. I had planned three hours between appointments but at this point we were going to be cutting it close to make it across town to the next one 45 minutes away.
Malachi’s orthopedic surgeon is one of our favorite specialists and has incredible bedside manner. Unfortunately Malachi’s brain is telling a few foot tendons to tighten up and they do need surgical intervention. I explained about our recent medical issues, and particularly the liver failure, and we are going to try to postpone this surgery for a year from now if we can get away with it. If it gets much worse we will take him sooner. It will be an outpatient tendon release which he has had done before. “Routine” some may call it haha…we all know that routine doesn’t always happen with Malachi.
One of the oral medications Malachi was on pre-liver failure helped relax his muscles but we sadly had to stop that one since it metabolizes in the liver. So we really have no other options except for surgery. What is frustrating about CP is that these tendons were totally fine a year ago. His brain just recently activated those to pull tight. It is a battle he will fight for his lifetime.
With all the medical appointments done we had just 3 hours for some fun before heading back. I let him decide if he wanted to go to the zoo or the Rainforest Cafe and he voted to go to the Cafe. They seated us right next to the tigers, which he was giddy about. What we didn’t know is that the tigers were malfunctioning and instead of roaring noises they mechanically squeaked, like they needed some WD40. I told Malachi it was the baby tigers squeaking at him which seemed to be enough to keep him happy. His smiles in all of these pictures are such genuine smiles.
He truly enjoyed every minute there and we walked around to visit with all the animals and look at the fish. We stayed through 2 of the thunderstorms, covering his eyes for each one to keep the flashing lights from triggering a seizure.
We went from there to Build A Bear and Malachi got to choose the type of animal he wanted to make and an outfit. He chose a bear and a Batman suit and was so happy with the finished product. He was super sweet and this picture is one I treasure so much.
Then he went to the Disney store to pick out matching tshirts for him and Levi. He is very opinionated these days and having the power of choice is very important to him. Levi had picked out some things for Malachi on his Ohio trip so we had put that one in the original itinerary as silly as it sounds.
Finally we went into the middle of the mall and took a ride on the carousel. The only seat option for us to sit in together were the circular teacup seats. When the ride began it swirled us around so fast and hard I thought I might puke. My reaction set Malachi into giggles and it is safe to say only one of us enjoyed that ride!
We made it back home by 9:00 Wednesday evening and Malachi relayed all of his adventures to Jake and Levi, giggling as we talked about each one.
Thursday we recovered from our travel day and played on the playground with friends.
Unfortunately Friday evening Malachi started running a fever and has had one since. He and I also developed pink eye in both eyes so we are taking antibiotic drops and trying desperately to not give it to Jake or Levi. I am suspicious of an ear infection with Malachi, as driving through the mountains to Nashville has always messed with my ears. Levi has also frequently developed ear infections after Nashville trips. We will likely end up at the pediatrician tomorrow just in case since he can’t communicate the source of pain. I thought he was getting sick last weekend but aside from a sore throat it never progressed into anything.
Levi is still doing great. He is going a bit stir crazy in the house and finding lots of mischief to get into but he is also growing in so many ways. His vocabulary is so big right now and he asks so many questions. So. Many. Questions.
This past month has been a very difficult one for our family. We had gone through a season of calm, with very few unexpected medical issues and very few hospitalizations. I actually told a friend a few weeks ago that things had been eerily calm and I suspected a storm was brewing.
It was exactly one month ago that Malachi and I headed to the Emergency Room for his stomach blockage. Through all of that, as intense as it was, I felt secure in the hands of God.
As the weeks have progressed we continue to get hit with waves of sickness, new upcoming surgeries, and so many medical/medication changes. Right now I am administering 35 medication doses daily. I am keeping logs of all them to try to keep everything straight and life takes my full focus to make sure I don’t make a deadly mistake. Malachi has had diarrhea for over 30 days due to a vitamin for his liver. Each day asks a lot of each of us.
Jake and I had a raw and honest talk this week of how much we feel like we are under attack from the devil. Jake is still very weak recovering from whatever junk had ahold of him but the mental hold on us right now is pretty strong. We are each giving 100% but it doesn’t feel like quite enough.
We find ourselves craving normal. Even normal sickness. Just simply normal.
A normal weekend. A normal night of sleep. A normal hour. Our normal 13 daily medication doses. Normal poop.
We encounter storms often in our medically complex world but there are times we are called to set up camp and live in the storm for a bit. We call these the Job moments. The days when you can’t help but wonder what else is about to happen. We still fully believe that we are in the hands of God, but sometimes His hands pause in the storm for a bit and we begin to feel the elements.
When I am camping out in the storm I tend to have a looser grasp on my inner thoughts. This week Malachi slept one morning a bit longer than normal. I was up with Levi and watching Malachi sleep on the monitor and I couldn’t help but wonder if he had passed away in his sleep, as it was so odd for him to sleep that late. I started to go down the mental road of “what if” and it made me sick to my stomach.
Bracing for impact sometimes feels harder than the impact.
And there is so much danger in the bracing.
We aren’t called to focus on the what ifs, as they strip us of our faith in God and His plan for our lives.
But I admit that when I am camping in the storm I slip into those thoughts a tad bit easier than when I am simply just passing through the storm. I give footholds to the devil so easily that allow him to climb the walls I have put up against him in my life.
I am trying desperately to stay Jesus focused right now and just tonight I have had some sweet and tender moments with Levi that remind me of the importance of modeling a Christ centered life to my children. When I am in a dark place I try to be very intentional with talking about and to Jesus. I have a few Levi stories that might make you smile…
The first one is from a few minutes ago (yes, 12:45am) Levi stole my iPad and started pretending to type away. He looked at me and said “Me blogging mommy!” I asked him what he was blogging about and he said “Jesus!” What is special about this story is that he doesn’t know what I type on here, but that is what he wanted to write about.
Earlier today we went for a drive in the car and Levi said “Mommy, praise and worship music!” My car radio has been broken for months so we cranked up some worship on my phone and he sang his little heart out. I didn’t even know he had those words in his vocabulary, so that one touched my heart for him to be so specific. I even asked him: “Do you want Veggie Tales music?” And he said “No, praise and worship!”
The final moment I am hesitant to share with you because I am opening the door to some major parenting judgment, but it made me laugh a bit so I will end on it….I am not bragging about my methods on this one so don’t feel the need to correct me.
When Malachi is sick we set up a sickness station in the living room. Because of his brain damage when he gets fevers they trigger hot spots in weird placed on his body. So the only way to accurately get a temp for him is rectally. In the “sickness bin” I have a rectal thermometer that we clean with alcohol prep pads after each use. We keep these out of Levi’s reach but he has been extra fascinated with the bin this weekend. He has also learned how to scale things to reach whatever he wants.
Knowing this, I told him on Friday that if he ever touched that specific thermometer (Malachi’s butt thermometer we call it- super creative huh) that he would likely get very sick and have to go to the doctor. He has been popping everything into his mouth and the mental pictures I was seeing were not pretty. He has so much PTSD right now from doc visits and COVID tests that I assumed that would be enough to squash the temptation, and it did for two days!
But tonight as I typed the blog the little rascal climbed up on a bucket he snuck from the playroom and grabbed the thermometer. I turned around to see him examining it closely with his hands. I panicked and shrieked and he immediately started yelling NO DOCTOR NO DOCTOR!!!! I took him in to the bathroom and scrubbed his hands which he says is the only part of him that touched it. He was in hysterics by the end of the hand washing, convinced that he was going to have to go to the doctor. He was so upset that Jake came running out of the bedroom from a dead sleep to see what big catastrophe happened.
I tried to calm him down and reassure him that he would be okay but he wasn’t hearing any of it. I explained that he probably wouldn’t have to go to the doctor but he couldn’t get ahold of his emotions. I told him that we couldn’t take back touching the butt thermometer but we could pray and ask God to keep him from getting sick from it. He was all about that idea and clasped his little hands together and poured his soul out to God. His intensity made me smile (which I obviously hid from him) and we prayed that Jesus would protect Levi from the butt germs and help him stay well enough to not need the doctor. We also prayed that God would help Levi listen and obey much better.
I never imagined that I would verbalize a prayer to God for protection against “the butt germs” but here we are.
I snuck a photo because I knew I couldn’t describe the intensity of his little prayer any better than a visual.
Sweet precious little boy.
But as I look at this photo I can’t help but think of the smile on God’s face to see a 3 year old turning to Him in a moment when he is scared and feeling helpless.
And I am also challenged to continue laying things at the feet of Jesus and making sure I model that to my children. We weren’t made to carry heavy things. What a beautiful lesson to teach my children before they encounter the heavy things this world has to offer.
Please pray for our family. We are ready to pack up our campsite in this storm and move out of it’s reach. But we are waiting (impatiently) for God’s timing to match ours. Please pray for our endurance and strength, both mentally and physically. Pray for health in our family and that we all are back to 100%.
Thank you for taking time to check in on our family and listen to my ramblings.