It’s been two long weeks since I posted the last entry! I was really hoping to be able to share that we were back into normalcy, but Malachi is requiring a little more time to get regulated again.

We have still been struggling to get smiles out of him and going to some pretty big efforts to see that grin! We even borrowed a friend’s monkey to see if that would cheer him up haha! Not even a side smile for that attempt. But Jake and I got some good laughs.

I took Malachi over to his school during pickup time last week and hearing all his buddies say hi as they walked by brought a smile to his face. He even chuckled for the first time since before his February surgery, silently shaking his shoulders while smiling from ear to ear.

Malachi’s pain is relatively well managed right now but he is still having some trouble with stamina off of oxygen. We will make it 1-2 days off oxygen and then he gets too tired to maintain his breathing quality and he goes back on oxygen for a few days.

I think his overall weakness is the biggest hurdle we have to overcome. We restarted his physical therapy last week and I am really hoping that will help him have more confidence in his new body. His color has improved tremendously and we are working hard to add some weight on. We have been spending time outside in the sunshine and fresh air, which has been good for us all.

Sleep is the other elusive factor, with Malachi staying up for 48 hours and then sleeping an entire day. He did this a few times in the hospital so I am not quite sure what to point to. Today he slept from 10a-10p. We tried our best to wake him up to help him regulate a bit and he just wasn’t having it. We are still set up in the living room until we can get him towards a more consistent and normal schedule.

We still celebrated with Levi, hiding some eggs and talking through the significance of Easter with him. We love using Resurrection Eggs with him still!

Last weekend I had the chance to attend a Ladies Conference in South Carolina! This is huge for our family, and the first time I can think of that Jake has stayed home with both boys and I have gone out of state. Malachi’s care is still very much hands on, and with him not sleeping it adds a level of complexity to his care. But Jake was up for the challenge, recognizing my need for a brain break! I am thankful for him “seeing” me.

It was difficult to shut off my brain for a few days, but the freedom I had mentally was such a needed gift.

The Lord and I are working through some things right now. The discomfort these last few months has brought has revealed a lot of sin and baggage in my life that I am needlessly carrying. I am so incredibly tired and weary right now physically and spiritually.

I am in an Ephesians 6:16 season: “Above all, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.”

I don’t have a lot of energy to fight, but I am relying heavily on the shield of faith to block the attacks of the enemy. Right now those attacks are all mental ones- remembering the wounding words of others, feeling disposable and unseen, being asked to do more than I can feasibly do.

Hebrews 12:11-12 “All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness. Therefore strengthen the hands that are weak and the knees that are feeble.”

I have to keep having faith that this challenging season is yielding peaceful fruit of righteousness. That God is taking all of my meager efforts and allowing my weak muscles to grow through this process of sanctification.

Still a work in progress and a continual conversation with the Lord. But isn’t that how our walk with the Lord should always be?

Thank you for the continued prayers and support for our family over the last few months. We are slowly finding our footing and hoping each day is better than the last. I am hoping our next entry will yield some more answered prayers for sleep and pain relief for Malachi!

Sincerely,

Leah

Whew what a week it has been. We have been soaking in the family time together and taking turns grabbing naps when we can! It feels so great to be in the same space together…to tuck Levi in, to eat dinner as a family, to play games, to watch movies. It feels good to walk barefoot around the house and step outside for a breath of fresh air. It feels good to sing at the top of my lungs and laugh at our silly dogs.

Malachi struggled tremendously with pain for the first few days, even with the prescribed scheduled meds. his heart rate stayed higher than it had been in the hospital and frankly, I was a little worried that we had brought him home too soon. We have been doing telemedicine appointments over the computer and were able to make some firm plans on how to help manage his pain better.

On Tuesday morning we met with neurosurgery to discuss his broken shunt tubing. We were running on 2.5 hours of sleep and Malachi was signing that he was in pain the entire ride to the hospital in Chattanooga. When we got there they wanted to get imaging done, particularly x-rays and a CT, but we had JUST had those done at Vanderbilt when the shunt was on the radar. But the hospital was unable to access those images so he had to do it all over again.

Poor Malachi was already in pain, and manipulating him on the tables to get more imaging made it worse. I ended up in tears with him as I watched him grimace with every movement. Getting more imaging defies the logic side of things for me. We are all in agreement the tubing is broken. I don’t know why we need more imaging to re-affirm what we already know. They said they wanted baseline imaging to compare future ones to; I just wish we could have done that at a time when he was a little more stable.

Levi was thrilled to ride along with us and be included. He even helped administer Motrin and Tylenol in Malachi’s g-tube while we were in a traffic jam and I couldn’t get to him. Levi administers his own seizure meds through his g-tube each day so he is a pro! I told him that maybe he will be a nurse or a doctor someday and he got pretty tickled at that thought.

Malachi is not strong enough the handle another surgery right now so we are planning to meet again with them in May and establish a surgery date. Levi’s surgery in Cincinnati is early June so we likely will wait until after that one.

We were able to finally get a smile out of Malachi and it was such a beautiful one! It just took me asking if he wanted to go to dad’s soccer game.

We went back to Vanderbilt on Friday and both JP drains were removed, making handling Malachi so much easier. Today we have been working hard to wean him from oxygen and are making progress. If he can handle being off oxygen overnight I will also remove his pulse oximeter, making him completely wire free!

With the drains out, we were cleared for a shower. It was his first legit one since February and oh boy was it needed. We took our time, even trimming his hair a bit until we can get it formally cut.

This is Malachi in an adult recliner. It is truly remarkable how tall he is. He has outgrown most of his equipment so we are in the process of trying to find replacements and keep him comfortable and varied.

He is incredibly weak and it will take him time to rebuild his muscles. But the small efforts are there. He has started slowly trying to sign with his arms again, but is mostly still relying on his eyes to communicate.

Plastic surgery was very happy with how his incision is healing. We will go back to see them for the final follow up on the same day we see orthopedics at the end of the month. After those appointments we are hoping to slow down the Nashville trips. With traffic lately it has been a 7-8 hour round trip to make it there and back!

Alright, now it is time to dump some medical momma thoughts. More for me than for you…it helps me process them to type them out.

I am in a season where I am having to try really really hard to be happy. I can list things I am thankful for. I can choose to look for joyful moments and find them. I can point to the ways God is working. But the natural instinct of happiness seems so foreign and far away.

We are re-entering our old world, but I don’t feel like the same person I was when I left. And that scares me a bit. The things that used to matter to me suddenly feel so insignificant and the things that used to encourage me fall on deaf ears. This hospitalization ignited a helplessness in me that I haven’t felt in quite awhile.

“Lord, if it’s you,”, Peter replied, “tell me to come to you on the water.”

“Come,” he said.

Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”

Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Sometimes we need the scary sensation of drowning to remind us of our need for a Savior.

I am not sure where I am at right now in the Matthew 13 story…if I am just noticing the wind, sinking in the water, or calling out to the Lord in desperation…

But regardless I am at a point where I recognize that my abilities are not enough when weighed against the power of God. The humility that helplessness brings can sting our egos but lead us into calling on the name of the Lord.

I think tonight I am a drowning Peter. But the beautiful thing is that I am never out of the reach of the steady hand of my Savior.

Please continue to keep our entire family in your prayers as we desperately search for a bit of normalcy in our week.

Sincerely,

Leah