This is one of those weeks where I don’t even know where to begin…
Let’s start out with details about our trip to Vanderbilt. To recap, Malachi visited his orthopedic doctor about 6 weeks ago for his annual checkup. While we were there I brought up my fears with Malachi’s spine and the doctor ordered x-rays which showed a slight curve. In order to prevent big surgeries in the future we decided to fit Malachi with a scoliosis brace which would take 6 weeks to make.
Fast forward those six weeks and Wednesday was the big day to pick up the brace. We loaded up the car and left that morning to make the 3.5 hour drive to Vanderbilt, stopping at a clinic close to the hospital to pick up his brace. After we had our introduction class on how to care for the brace and properly put it on Malachi, we loaded up again and drove to the hospital to meet with orthopedics and take more x-rays.
The back brace has some pros and cons.
Pros: Malachi seems to like the support the brace provides and can work on his head control a little more while in the brace. And the brace most definitely does correct the curve we were seeing in his spine, as seen in these x-rays.
Cons: The brace is exceptionally warm and requires a tight tank top to be worn underneath. We also have to watch him closely for “hot spots” (areas where the brace may be wearing down his skin). In order to make sure the brace is continuing to be a good fit, the equipment provider said she needs to see us at least once every three months…something that will be increasingly more complicated to try to do with the addition of Baby C. Final con is that we are not able to burp Malachi in the brace very well, which leads to an increase in seizures.
At this point the doctor would like for us to keep him in it for a few hours a day. His vertebrae have not curved yet so the bracing is still preventative instead of remedial. The current muscles he has in his core will suffer if we were to keep it on him at all times, so alternating wear will give him a good head and core workout. We are still proceeding with caution, prioritizing seizure control over bracing.
By the time we left the hospital it was 5:00 and we were all wiped out! We had decided to continue our trip from Vanderbilt on up to Ohio to visit with Jake’s dad one final weekend before Jake goes back to school, so we rented a hotel room in Bowling Green, KY. In my head this would be a perfect idea, as Malachi would be able to swim and we could all get a full night’s rest making the rest of the drive the next morning.
Life had different ideas.
The swimming part was great! It was the best Malachi has ever swam and he kept trying to leave Jake to go swim with the big kids on the other side of the pool. Here is a sweet video of him hard at work.
He had been up since 4am before leaving for Vanderbilt and with our crazy jam packed day I simply assumed he would sleep like a rock. We were so wrong, as Malachi woke up every other hour the entire night. We took turns getting up with him- he slept 4 pieced together hours and Jake and I only got about 6 hours each. I was emotional from the lack of sleep (several nights in a row) and eager to get on the road quickly the next morning.
As Jake loaded up the van, Malachi and I sat in the lobby of the hotel and out of nowhere came a great big seizure. Before I could react he projectile vomited all over himself, my legs, and the floor of the lobby. As I looked at the dismayed face of the desk clerk I felt my face grow hot with embarrassment as we scrambled to get it cleaned up and get all of us vomit free.
We finally loaded up into the car and headed towards Ohio and Malachi continued to have one great big seizure after another in the back seat. When this happens on the road we feel so helpless and spent the drive pulling over to try to help him through them. We watched him closely, trying to determine if he was having a shunt malfunction or if something else was causing the seizures.
He continued to projectile vomit with the big seizures and made a great big mess in the car seat for us to try to manage on the road. This was the best way to depict how we felt at by the end of the day.
We made it to my dad’s house and tried to figure out what to do next. We were able to get him to keep his meds down that night and got him to sleep for a few hours, which also seemed to help. If we had been at home, we would cancel all appointments for the following day to allow his body to recuperate after all of trauma the seizures had put him through. But since our Ohio time was limited, we just tried to take his feeds slow and watch him like a hawk.
It took a few days but Malachi finally seems to be back to normal. We aren’t sure what the trigger was…we have our theories…it could have been the pressure from the brace the day before, the major change in routine as we traveled, car sickness, etc. There is no telling!
But just to rule out car sickness we did make the decision to turn Malachi’s car seat around. He absolutely loves facing forward and spent the first 5 minutes of the drive giggling uncontrollably and trying to look out the window (to our joy and amazement)!
His right hip causes his leg to stick out into the path of the car door, so we have to bungie his legs together with a giant hair tie but it works! Facing him this way is statistically SO MUCH more dangerous with his lack of head control, but it does allow us to monitor his seizures better from front seat. We are looking into a special needs car seat that may offer him some extra supports.
This week we also met with my regular OBGYN (non-high risk). We have hit the 20 week mark, which is absolutely amazing, but the closer we inch to 24 weeks, the more nervous my doctor seems to be. While everything seems to be going well, he is still very cautious. This is the mark where I am supposed to stop lifting Malachi, and exercise of any kind is very discouraged. He also thinks that I should not be traveling far from the area beyond this point in the pregnancy, so if a problem arises I will be seen by a doctor familiar with my case.
Baby C officially has a name! This little one will be named Levi Daniel Carroll. This name has lots of significance to it both biblically and personally. Jake’s dad’s middle name is Daniel and we wanted to honor his legacy. The biblical significance is a Bible lesson all of its own that I am going to save for another day.
We have been referring to the baby as “Baby Levi” to Malachi for several weeks now. At church last week someone referenced the Levites in the Bible and Malachi just couldn’t believe it. He whipped his head towards me with wide eyes as if to say “How do THEY know about my baby brother?”
Malachi has LOVED spending his week in Ohio with my two year old half brother, Kaliber! Seeing his reaction when he comes into the room would just melt your heart. Malachi squeals with joy every time Kaliber comes around, and Kaliber loves on Malachi freely giving him lots of hugs and kisses. It has been so fun to get a glimpse of what life may be like with Levi and Malachi. Best friends for life!
Funny side story- Kaliber has been running around the house yelling my name all week. Today in the car Malachi randomly yelled out “Leah” as clear as day! Jake and I couldn’t believe it!!
We had lots of adventures this week while in Ohio, but the one that takes the cake came from last night. I have an elderly grandmother who we love to visit when we are in town. She doesn’t get to the store often so when we do come we always make sure to take her. Jake wanted to spend the evening with his dad so I ventured to the store with Malachi and Grandma to let her do some shopping. The sun was setting as we came out of the store, which temporarily blinded my low vision grandmother in the middle of the crosswalk. I was pushing Malachi in his wheelchair while pulling a cart of my own and had to find a way to pull her cart as well out of the crosswalk with her holding onto the cart for safety. It truly was a comical scene watching a pregnant woman trying to handle a literal train of wheelchairs, carts, and people and someone quickly ran over to help (thank you stranger)! Never a dull moment!
Tomorrow we head back to Tennessee and into our very real world of appointments, therapies, and life. Jake will go back to work on Tuesday, and Malachi is scheduled to start school on Friday. We are most likely going to keep him home at least that first day and allow the classroom teachers to get settled with the other students in the classroom before we bring our little firecracker into their world. We have been talking to Malachi a lot about school, and he seems pumped and ready to go!
We are making some great progress on the house! I will post some pictures soon, but we are just a few weeks away from moving in. Little fun fact for you: one of the subcontractors hit a bear on our new road! When he got out to check on it, it jumped up and ran into the woods so we are assuming he survived. Pretty amazing how moving just five miles down the road can change the type of wildlife we see.
My energy level is down to 3%, so I won’t be able to elaborate as much as I would like to, but this week emotionally wore me down. There were 4 times this week that I found myself having to take a big, deep breath and swallow the large lump from my throat. Tears tried to spill all week as I felt so defeated by our life. We fight day after day to give Malachi a quality filled and amazing life, and to see his little body struggle through seizures, new medical equipment, medication changes is sometimes just plain ol’ difficult.
But through all of his trials he continues to keep that big smile on his face. His joy is truly contagious, and I thank God that He has developed Malachi’s emotions enough that he knows what it means to be filled with the joy of the Lord. His ability to communicate with us is growing by leaps and bounds, and his response times to our questions is getting faster and faster.
We truly feel blessed to have sweet Malachi in our lives! It is just some weeks it is very difficult to be a strong mommy for him.
“He gives strength to the weary and increases the power of the weak….”
So to end on an uplifting and strengthening note, here are some pictures from therapy successes this week!
Thank you all for your prayers this week. And a special thank you to Susan, who gave me a much needed reminder this evening to continue placing my faith over my fears.
Jake, Leah, Malachi and Levi Carroll