WHEW what a week we have had.
On Sunday afternoon I managed to contract some food poisoning from our takeout at a local restaurant. After one bite I knew the meat had gone bad but apparently one bite was all it took. The rest of the week my body was under attack, running fevers of 102 when I attempted to eat and losing all of my strength and mental clarity.
Wednesday rolled around and when I woke up I felt decent enough to attempt the Vanderbilt trip with the kids. I was able to keep some bread down so we hit the road and made the three hour trip there without issues.
Malachi got a fresh set of X-rays to check his spine positioning and then we met with both surgeons. I cannot emphasize how much we love and admire his orthopedic surgeon, Dr. Schoenecker. He sat down on his stool and wheeled right up to Malachi’s line of vision to talk directly to him. He is the only doctor that Malachi has ever had that has addressed him and spoken to him.
Ugh, typing that made tears fall down my cheeks. Tears of empathy for my sweet Malachi who simply wants to be “seen”. What an isolating world he has to experience each and every day.
Malachi’s heel cord is being told by his brain to pull tighter which is pulling his feet outwards and up. The solution would be surgery to release that cord but this issue is a symptom of the damage inside his brain and would eventually just pull tight again. So we are pushing off the surgery until it is absolutely necessary. Malachi doesn’t seem to be in pain from this issue and we can still get his foot into his braces so we will continue to annually evaluate where we are at with that issue.
Malachi’s hips are still very much out of socket, but they do not seem to be causing pain so we are continuing to leave them. This particular surgeon always has a shadow (resident, NP, etc) with him and they are always fascinated by how out of socket his hips are. It really is mesmerizing in a grotesque way on X-ray.
After meeting with that surgeon we met with Malachi’s new spine surgeon to talk about his scoliosis. Malachi is so floppy that getting accurate spine X-rays is difficult. The spine curve is still very much present but doesn’t seem to be causing many issues at this point. We will continue to watch this curvature closely, particularly around growth spurts as it starts to get more fixed.
The surgeon said that he expects that Malachi will require a pretty massive spine surgery in his future to attach telescoping metal rods to his spine. I am terrified of this surgery. The surgery itself is not what frightens me, but it is the recovery process. When I shared this fear with the doctor this week he affirmed it saying that there is a 3-5% death rate with this procedure from complications during recovery.
We hit the road to start the three hour drive home and I was still feeling energetic and ready to tackle the task. But as we continued my strength started to drain from me so I stopped to try to get some food in me. My body went into panic with the food and with 1.5 hours left in the drive I suddenly spiked another 102 fever as my body fought vomiting the food up. By the time we made it home I was too weak to lift Malachi. But by morning I was relatively back to normal again.
On the miserable drive home I was quickly reminded why I often make this a two day adventure! But truthfully, the kids do great. Levi doesn’t usually join us for Vanderbilt so he felt like it was a real adventure. And Malachi traveled so well, only having one small seizure in his car seat.
The boys got to enjoy a mid October swim with friends early this week.
On Saturday we met up with our Chick-Fil-A friends from Malachi’s famous Facebook post in 2017 (Here is the link if you haven’t seen this sweet video: https://youtu.be/_FqXgxnfzd4 ) We try to meet up with them periodically and they happened to have a soccer game within a 25 minute drive!
We are thick into soccer world right now, taking our team to the district tournament last week and regional tournament this week. Malachi and Levi absolutely love going to the games. They have grown up as coach’s kids and genuinely enjoy being sideline.
This week one particular game started to grow tense and the emotions were tangible. He said “I think we need to pray.” I love that his default to a tense situation is to stop and take it to God.
He has been saying some pretty funny things lately. A few days ago he flatly told me that I was old. Not as a derogatory thing, but simply a fact in his eyes. I asked him how old he thought I was and he replied “You’re like twenty and a pound”. Sounds pretty young to me!
Jake and I have been having some pretty serious conversations about Levi’s near future with education. We have been praying hard for some clarity on what is in his best interest on all fronts. On paper he is extremely medically complex and has one of the worst possible brain damage diagnoses a child can get, but 15 minutes with him and you would have a hard time spotting any deficits. God is so good.
And Levi is just a few weeks shy of being 1 year seizure free!
As you can probably tell, this week was a challenging one for me. Physically, emotionally, and especially psychologically. Our nighttime is always challenging but for the last week Malachi has consistently had a seizure within 15 minutes of me laying him down for the night. His brain locks into these routines and he sticks with them for awhile. When his seizure hits I have to pick him back up to try to help him burp to end it. He contorts so much that he smashes his face into the pillow cutting off his air supply.
I usually lay down next to him and pray that the night will be different, allowing myself to drift to sleep while holding his hand. My exhaustion level was so high this week that I was afraid I would miss this seizure if I let my head hit the pillow, so instead I just sat next to him and waited. And as I sat in the darkness, simply waiting for his body to start convulsing I felt so many emotions.
I have talked so many times before about the fiery furnace from the Bible and how our story of our moments in the furnace are a testament to God’s protection. But as I sat and waited for the seizure to hit I had a fleeting realization that I am not sure that we left the furnace. It feels like we are still amidst the flames, waiting on that door to open.
There are quieter moments but the flames are still an arms reach away, continually threatening the peaceful moments we try to stay focused on. We are one bad seizure away from heartache. We are one missed moment away from death. The heaviness of that is sometimes very hard to ignore. And living on edge doesn’t always feel like living.
But I can tell you this. That even though we are still actively in our furnace, God is still very present. And He continues to keep our clothes unsinged, our hair untouched, and the smoke from permeating our clothes.
God doesn’t always remove us from the furnace, but He will always join us in it and make the heat miraculously undamaging. I pray that I, myself, will always remember the beautiful protection the Father has given to our family.
Please pray for continued strength for us on the harder days, and wisdom for the every day. My faith is not wavering, but my human body is and it has made me process the future a little more realistically this week.