This week little Levi and I ventured to the hospital to meet with his neurologist. He is always anxious beyond what words can describe when we go to any doctor appointment so I told him I needed to go to talk to the doctor about Malachi and asked if he would come along. I told him we would make it a date and have Chick-fil-a after and that sealed the deal.
The neurologist watched the video we had taken of Levi’s seizure and said with 100% confidence that it was one. He said two or more seizures in a lifetime warrants a diagnosis of epilepsy so two in one day was without a doubt an immediate diagnosis. Levi has complex partial epilepsy and started a medication on Wednesday to help control these. Oddly enough, with Malachi’s four seizure types this is a new form of epilepsy for us and a new medication.
A very well earned kids water. His favorite!
For the first week he is at a lower dose and will double it on Wednesday. It has made him very emotional and he swings from one end of the spectrum to the next very quickly. He is having a hard time regulating his emotions and his anger had been explosive. This medication can also potentially affect his sodium levels so he will start doing regular labs to check those levels. I am dreading this for him.
The neurologist didn’t seem to think that the stuttering that also started the same day as the seizures is related but I have such a hard time accepting this. The seizures are generating from the left side of his brain which is also the portion that controls language. The doc also suggested an updated EEG and sedated MRI for informational reasons but since we have done those recently I politely refused; the results would not change the treatment and we have already seen a snapshot of what is going on inside of his brain. We have been aware of Levi’s 5 damaged spots inside his brain for several years now and this is just a ”symptom” of that damage.
To be honest, I handled the diagnosis part decently. I had more of a breakdown when I witnessed the seizures since I felt us going down a path I had been before. There is this sinking feeling in your gut when you witness a first seizure…like butterflies that make you want to vomit. I remember the exact spot I was in when Malachi had his first seizure, like my brain took a snap shot of that moment, and that gut feeling comes back when I picture it. The same emotions came over me when I watched Levi’s first two seizures last weekend.
There is always comfort in having a plan. It is the ”let’s wait and see” situations that bring me the most turmoil, so while I am so incredibly disappointed that Levi’s brain is struggling I am thankful we have a plan in place. We have been watching him 24/7 to make sure we don’t miss another episode as he could very easily hurt himself during one by accident. We take turns with each boy, as Malachi’s seizures have been active at night lately too. I am so glad Jake has a break from school as this would have been a very hard thing for me to get through alone.
Levi has been doing a lot of imaginative play lately and started doing magic tricks with his magician costume. He is as cute as a button and I took a video to share with you:
We had been holding our breath all week as we inched closer to Christmas Day. Inevitably something always happens on the major holidays. We made it to the night of Christmas Eve and planned to head to a friend’s house for a Jesus birthday party. Before we left I asked Malachi if he was excited about going and he signed ”no”. This is so odd for him so I took his temperature and it was a perfect 98.6 so we loaded up and headed to the party, hoping he would perk up when we got there.
After a few minutes he had a pretty big seizure that lasted much longer than normal. His back heated up within minutes of the seizure and I took him back home where his temp registered at 101.5. The fever broke by the next morning which made me wonder if we were dealing with a brain malfunction rather than a sickness. But Christmas morning his oxygen saturations started dipping and we spent most of the day trying everything we could to avoid going to the hospital on Christmas.
Last night he declined pretty rapidly so I ended up putting him on two liters of oxygen and staying up most of the night watching his saturations. By morning he was slipping into hypothermic ranges (96 degree body temp) which means his brain was going haywire and definitely fighting something. Jake also started complaining of some symptoms so we are assuming it is viral.
We are at a point where we are evaluating each hour whether or not I need to take him in. I don’t think I am emotionally prepared for another ER trip quite yet, let alone another inpatient admission so join us in praying against more pneumonia. I just changed out his shirt, tape, and cannula and he gave me a smirk at the idea of putting on his new Thor shirt.
We aren’t huge ”Christmas” people…I know that sounds so bizarre. I think the premise of celebrating the birth of Christ is so pure, but our world pollutes it with an underlying edge toward selfishness and materialism. When I step back and try to look at the holiday through the eyes of God I have a hard time finding the God glory among all the self glorification. I am on a journey with this one….still not firm on any stance, but on a journey with it and what I want the holiday to look like for my family and trying to be guided by the Holy Spirit.
But we do the four gifts: something you want, something you need, something you wear, and something you read. Levi also had a new bike with pedals hidden in the bedroom.
We spend time each holiday season packing up our excess toys and getting them into the hands of those that need them. It is an easy avenue for me to have conversations with the boys about looking for ways to be Jesus to others, and the older they get the more fun this “secret project” is. This year Levi opened up the cutest little bike and when he couldn’t easily master it he told me ”Give it to a kid that needs it.” And walked off. I am proud he is starting to think of others- although I think his generosity in this case was fueled by frustration. He did thoroughly enjoy the water bottle that came with it and says it is his favorite gift. Malachi’s favorite gift was a switch adapted train that spits out dominoes in a line and some superhero muscle shirts.
On a sidenote, Malachi officially got his ”Spiderman theme” this week. Jake and I crafted some wheel covers and added some superhero hands and a cape. He is smitten.
We received the bill for this chair this week and it was nearly $17,000 pre-insurance! Unbelievable!!! Anything marked ”special needs” automatically gets marked up. When we looked up Spiderman wheel covers they were $140 per set. We were able to make these and strap them on for about $20. Such a broken system.
Let me throw an old photo your way that made me smile this week. This is chubby faced Malachi when he was the same age as Levi.
I have had a few people ask about our family service project. We did letters and gift cards for some PICU/NICU moms this year and the boys each helped me sign the cards. Levi asked a lot of questions and I brought up photos of him in the hospital his first Christmas. We prayed over the cards as a family, that God would get them into the hands of the moms that needed the hug from a family that has been there and done that. My heart truly hurts for all of the moms in the hospital on Christmas- it is such an isolating place to be.
So let’s talk honestly about Christmas. I was on the verge of tears most of the day but couldn’t seem to pinpoint why. I so desperately wanted a normal Christmas Day for the boys, but unfortunately it was a bit chaotic. Malachi was feeling too puny to really enjoy opening his gifts and Levi’s emotions were way out of sorts. Yes, we were home and not in a hospital but oh how hard it was to process the disappointment of a drama free day.
Late that night I was looking through the few photos I snapped throughout the day, disappointed that my Christmas didn’t look like everyone else’s. The comparison game goes into overtime big time, doesn’t it? I fight the comparison issue on a daily basis but on holidays our loss of normal seems to be rubbed in our face (coming from the perspective of a grieving momma).
As I flipped through the photos I found one that I didn’t take. And it stopped my pity party immediately as I studied it.
This was the day through the perspective of a four year old and his sweet little toddler foot. So much contentment in this photo. Watching a movie all lounged back with his big brother, waiting patiently to open those presents under the tree. But the biggest thing that caught my eye was the reminder on the wall ”Consider it all joy”. It was the words I needed to read to remind me that we have been given the unique blessing of trial after trial, and seeing the hand of God over and over and over again in the lives of our boys.
“Consider it all joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance . Let perseverance finish its work so that you may be mature and complete, not lacking anything.” James 1:2-4
What a gift this journey has been. It has shifted my perspective in ways that a normal life couldn’t. It has made me fall on my face in front of my God, relying completely on Him to sustain us. God has gifted us with perseverance through our many trials.
One of my Facebook memories popped up this week and it was a blog entry from Levi’s first Christmas in 2017. That entry can be found here:https://miraclesformalachi.com/2017/12/25/the-year-of-the-lords-favor/
We were just a month into his journey and we had just attempted an experimental surgery to fix his airway- one we would soon find out was a failure. But as I read the longings of my momma heart I can’t help but feel them today as well as we enter into a new year. And proclaim them over our family.
“To proclaim the year of the Lord’s favor…to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor. Their descendants will be known among the nations and their offspring among the peoples. All who see them will acknowledge that they are a people the Lord has blessed.”
I pray that when people look into our lives they can see that we live out ”consider it all joy“. That we can find true happiness, even in the ugly parts of life. I pray that people will be able to see Jesus in our family and in the testimony of our children. I pray that the many blessings we have, even the obscure and hard to find ones, will be seen by many and point them towards our God.
May God reveal Himself to each of us as we enter into a new year, and may we have hearts that are soft enough to be molded by Him- even in the trials.