A whole lot can change in just two weeks.

About a week and a half ago I got a call from Malachi’s back surgeon at Vanderbilt. When I answered the phone and heard the voice of the surgeon himself I felt a cold chill run down my spine. All medical mommas know that a direct call from the surgeon is often a bad thing.

H explained that he looked over the CT scans with the chief surgeon and they decided that it wasn’t safe for Malachi to have the back surgery done as planned. They are now planning to do two different spine surgeries. The first one will be in late February and they will come in through the front to put plates and screws into the lumbar portion of his spine. They will need to move his lungs for this one prompting chest tubes and a longer hospital stay. The second spine surgery will be in early April and will be done through his back to fix the thoracic (middle/upper) part of his spine. He kept reiterating that this was the safest way to handle his anatomy.

Then last weekend we got another call from Vanderbilt asking if Malachi could come for surgery on both feet on Tuesday. Thankfully we were able to rearrange our schedule and say yes. The foot surgery is the mildest on the list and one we had originally planned to pair with one hip. But now that the back surgery timeline is going to scale the course of 4ish months we figured we needed to jump at the chance to get his feet in a comfortable position.

In the meantime between the phone call and foot surgery we had planned to celebrate Levi’s 7th birthday!

This was the first year that he was extra excited about it being his birthday. He got a special Chick-Fil-a lunch at school, a few fun presents, and dinner at the hibachi grill.

Let me just take a minute and show you Malachi’s face when they brought out the drums and sang happy birthday to Levi. He was so happy.

He also got the chance to sneak over to the farm and meet the newest babies (a fox, an alpaca, and a llama).

Then over the weekend he had some school friends over for a birthday swim party, and some church friends over the next night for a November night swim party.

Saturday evening after his party ended we got the very unexpected news that my grandmother had passed away. She was 93 years old and was recovering from something viral when she very suddenly passed away.

My grandma and I were very close and she loved my boys very much. We spoke over the phone often and we made trips to Ohio to visit her as frequently as we could, surprising her just last month with a visit.

Grandma had such a spunky spirit about her and was content with a very simple life. She was always thinking of others over herself and never wanted to be a bother to anyone else. There are so many stories, so many memories that I could share with you…but they all end with the same sentiment that Grandma was a very special woman.

We made plans to travel to Ohio for her funeral at the end of the week and had to put our focus, emotions, and energy into getting Malachi through his foot surgery.

Levi was upset by the news about grandma and very anxious about Malachi and I leaving. I am so thankful for our community of support that helped keep his day as normal as it could be. He rode to school with classmates and was treated with understanding and love, which brought peace to my momma heart. Malachi’s school friends all wore red to support him on his surgery day and made dozens of cards for him to read while he recovered. We are so blessed to have found such a supportive and loving place.

Malachi and I headed to the hospital early Tuesday and checked in for surgery around lunchtime. Malachi was excited about the one on one time with mom and had such sweet smiles the night before surgery. He knew he had to do hard things, but loved the idea of us snuggling in the hospital bed and watching movies. Hospital stays have been such treasured moments for us to connect.

Malachi’s lack of oxygen at birth severely damaged several parts of his brain (Hypoxic Ischemic Encephalopathy). One of the overflow diagnoses of that is Cerebral Palsy. Some kids with CP are floppy (HYPOtonia) and some kids are tight (HYPERtonia). Malachi is a mix of both. He can’t sit unsupported or hold up his head well (hypo) but his brain has told his muscles and tendons to pull his hips out of socket and dislocate other bones (hyper). His feet are a perfect example of his hypertonia.

Malachi had a tendon on the outside of each foot that pulled so tight it dislocated his foot bones. The surgeon cut the tendons then fused the bones back in place with permanent staples. This will hopefully be a forever fix for him.

He has some pretty amazing Spider-Man casts that will stay on until December 23rd.

Malachi spent nearly four hours in the operating room and we spent the night at Vanderbilt for pain management and some oxygen support. I truly think it was a God thing for this surgery to happen the way it did as they were able to see the level of support he needed for a “minor” surgery and have now made plans to reserve a spot in the ICU for each of his spine surgeries. The surgeon also noted how much Malachi bled through this surgery and they are going to make sure to have several bags of blood on hand for transfusions for the next few.

Malachi and I made the most of our stay. I am always so proud of how he handles such big challenges. He is truly amazing.

We were discharged Wednesday afternoon and left Thursday for Ohio. Recovery has been hard for him. He managed the pain well until about the third day. We had already made the trip to Ohio and had thankfully packed several “worst case scenario” things including his oxygen concentrator which he did end up needing.

We returned from Ohio last night and he smiled for the first time since surgery. We are working to wean him back off of oxygen and get him strong enough to return to his baseline.

We got to visit with family while we were in Ohio, even getting to see my other sweet grandmother. I keep telling the boys how blessed they are to get to meet two great-grandmothers in their life! Not many kids get to do that.

Grandma’s funeral was hard for all of us. It’s always hard to put a period on the end of the sentence of someone’s life. But it led to some really precious conversations with the boys about heaven and the providence of God.

As you can imagine, I have been all over the place with my emotions. Surgery day was hard. Anytime I have to hand my child over to the surgeons it creates such a turmoil in my soul. Getting to lay eyes on them in the PACU after surgery is all I can think about and until that moment I have such unrest brewing inside of me.

I felt like this round was a dress rehearsal for all of us for the hard things we have coming up.

I didn’t give myself room to grieve or process the loss of grandma until after we left the hopsital, wanting to be able to give my focus and energy to Malachi. The closer we got to Ohio the more real the loss became.

By the end of the weekend I find myself so incredibly weak and tired. I can’t tell you how many times this week I closed my eyes and just spoke to the Lord saying “God, I am just so tired.”

As we navigated the timeline to try to get north for the funeral amidst surgery recovery unknowns I was overwhelmed with a feeling of inadequacy. I feel like an inadequate mother, caregiver, wife, friend, Christian, daughter, granddaughter. I had to miss my grandpa’s funeral due to Malachi’s brain surgery in 2013.

I don’t get to pick the hats and order them. My medical momma hat always has to be worn on top of all the others. And sometimes the relationships I am in aren’t able to withstand the “bleeding” that can take place when my current and past traumas edge into their worlds.

Sometimes I get jealous of “normal”. I got upset that I couldn’t even grieve the way everyone else does. I want to be able to drop everything and be with my extended family. But I knew this week that I had to try to put it aside until after Malachi made it through his surgery, not wanting my emotions to impact his headspace leading to the OR.

As I sat in the surgery waiting area and prayed this verse from Psalms kept coming to my mind and mouth.

“The Lord is near to the brokenhearted and saves those who are crushed in spirit.” Psalms 34:18

As I thought about those words I grew increasingly thankful for them as they perfectly summarized my state of mind. I was (and am) crushed in spirit. I just feel so beaten down right now and feel the aches with every movement.

But even as I sit in these ashes I can feel the presence of the Lord close to me. He has pointed out all of the Jesus that my grandmother showed me over the years, cultivating the Fruit of the Spirit in my life by witnessing hers.

He has been reminding me that we aren’t called to leave legacies of ourselves here on this earth. We are simply called to point others to look past us and see Him. And my grandmother did that very well.

I love you grandma and we miss you already!

Sincerely,

Leah

It has been a busy two weeks with lots of medical appointments and information. I am still processing a lot of it myself so I might not do an adequate job explaining things on here…especially the emotions we are cycling through.

The boys and I went to Vanderbilt last week for some pretty big conversations about Malachi’s spine, hips, feet, and legs. I knew we would have to have some hard conversations as we came physically see the skeletal changes the scoliosis is creating on his frame. His rib cage is no longer symmetrical, one set of ribs flaring out and sticking up dramatically higher than the other side. He is unable to lat flat on his back anymore and his body does some contorted things when we attempt to.

Last time we measure his spine curve he was at 45 degrees and we talked about surgically intervening when he was at 50 degrees. At last week’s appointment his curve measured 70 degrees which is obviously an urgent problem. Here is a side by side comparison with 2024 on the left and December 2023 on the right. He was positioned differently int he images but still…yikes!

They also took an x-ray of his hand to determine his “bone age” and he measured at 13 years old. This was a good thing as it shows he is a candidate for a spinal fusion instead of magnetic rods that grow with him. Malachi is scheduled for this surgery in February and is on the cancellation list in case they can get him in any sooner. It will be an all day surgery with three surgeons working to put screws and plates down his spine from his pelvis to T2. We will be in the hospital for several days after.

We talked to the foot/hip surgeon as well and he says Malachi is also in need of a foot surgery and surgery on both hips.

Malachi’s foot tendons are pulling so tightly that they are dislocating a joint in both feet, a cerebral palsy issue with the brain miscommunicating with the tendons and telling them to pull tighter. He needs to have both tendons released (cut) and the bone joint fused together. This will put him in double casts for 4-6 weeks.

He also needs hip surgery on both hips but due to the nature of the surgery and the inflammation he can’t do both at the same time. So he is considering doing both feet and one hip, then coming back at another time to do the opposite hip.

Malachi’s hips are both out of socket completely, which doesn’t always need surgical intervention. Unfortunately for him the head of the femur bones have migrated to the back of his bottom so he is essentially sitting on the bones, which will eventually lead to positioning problems and pressure sores.

Both surgeons met and decided the order of these surgeries based on urgency and quality of life and settled on back, feet, then hips.

All three are gnarly surgeries that are going to be so so so hard on our warrior. He will need time between each to get back to a baseline as he preps for the next one. It is going to be a very long year of back to back surgeries.

It ended up being a very long day for Malachi with lots of x-rays, CT scans, and hard conversations. I watched his face as we talked with doctors and could see the wheels turning in his head, soaking in every word. We finally got home just before midnight and Malachi and I had a chance to talk. I asked him if he was anxious and he immediately signed yes. I had to fight back my emotions as I explained that I was anxious too, but he was going to feel so much better after all this was done.

In all transparency, my heart hurts so much for Malachi. I can’t even imagine having to face one of those surgeries now, let alone as an 11 year old. He has had such a calm and beautiful few years without any major operations or emergencies so facing one again is a hard thing to accept.

My hope and prayer is that this surgery leads to a greater quality of life for Malachi and improves some of the new scary struggles he has been coping with over the last few months.

Malachi has been doing such a good job communicating lately. Yesterday he was angry and sultry most of the afternoon and it didn’t take long to figure out why.

A sweet friend invited me to do a walk with her to raise money for the American Heart Association. I presented the opportunity to both boys and let them each decide if they wanted to wake up early and do the walk with me or sleep in and hang out with Jake. Levi quickly voted to join me and Malachi quickly voted to sleep in and stay with Jake.

Walking a mile is hard on Levi’s airway so I brought his scooter. Being able to zoom on an actual road in downtown Chattanooga was a real treat.

When we got home Malachi was moody and his mood continued to sour as the night went on, clearly trying to get me to notice his annoyance with me.

Jake and Levi went to bed and I got the chance for a serious conversation with Malachi. I asked “Are you mad at me?” And he quickly signed yes. We talked for awhile and finally got to the bottom of it- he was upset that he didn’t go to the walk. I reminded him that he chose to stay home and tried to explain regret to him. After our heart to heart he gave me a big smile, seemingly grateful for “being heard”. It is conversations like these that warm my heart so much, watching him grow up right before my eyes.

Speaking of growing, the surgeon said Malachi is expected to be 4-6” taller immediately after surgery! Wild! I had to buy him some new winter clothes this week, which he was thrilled about. I may have to buy him a whole new wardrobe after surgery!

I also told him I would let him pick out a pair of shoes after his feet have healed post op. He has never been given the chance to pick out shoes as we haven’t found any compatible with his braces. The surgery will eliminate any need for foot braces! He gave mine a good smile when I told him that.

So for some fun updates.

Vanderbilt was giving away costumes the day we went for our visits so the boys each picked something out. We have had some good laughs at these.

Malachi has thoroughly enjoyed watching the NFL football games with dad, even sporting a hand me down jersey from his older cousin.

And Levi is becoming quite the animal enthusiast. Our farm friends just got some baby llamas this weekend and one other new baby (I won’t announce it until they do but it is a new animal species for the farm); we will be heading there this week for an introduction.

Levi turns 7 years old this week! Watching him transform from a medically fragile baby to a rambunctious seven year old has been such a joy. He enthusiasm each day is a wonder and his empathy for others is beautiful.

I am all emotioned out for the evening so I am going to save my Levi birthday post for the next blog entry. Momma can’t handle that one right now. What a journey these 7 years have been!

We started something new in our house this month called “My Virtuous Quest” and I am really loving the amount of conversations it has already created with the boys about virtues!! We are able to give names to behaviors if that makes sense. It’s helping me practice intentional parenting and look for things to affirm in my children.

Last week Levi’s g-tube popped in his sleep and he came in to tell me. He was very emotional about it, as he hates getting it changed out, but he stayed calm and collected enough to put a new one in so we gave him a “courage” badge. Side note- we have had to do 4 g-tube changes between both boys in 5 days…something fishy going on here with the quality of the tubes.

When they get 10 badges there are different family adventures hidden in the boxes. We also have different virtues that we can swap out and focus on based on the needs.

We are already hearing the “I was good today so I deserve a badge….” And it has been a good conversation starter about integrity and character is what we practice even when no one is looking and no reward is given. We are also working to find the conversation balance between the things that are virtues and the fruit of the Spirit.

If you need a fun gift idea for Christmas and have little ones this would be a great one!

https://www.myvirtuousquest.com/

Look at the smile on Malachi’s face with his school buddies! The friendships he is forming are so special! I am so thankful for the opportunity they are giving him to be involved this year.

It has been 11 days since our Vanderbilt trip and to be completely honest, I am still very numb. I haven’t has the chance to really accept all that I heard and think about the seriousness of what we have to face.

Spine surgery has always been an overwhelming fear of mine as we personally know children who underwent this surgery and passed away in the operating room. But I also recognize that we don’t have a choice. If we wait much longer Malachi’s lungs will start to be impacted by the spine pressure and breathing will be a struggle. I can’t imagine the fear that will stir in him, so really there is an eagerness to spare him from that and get this surgery over with.

This upcoming surgery has become a mental fixation, consuming my thoughts and energy. It is taking such conscious effort to take every through captive and make it obedient to Christ (2 Corinthians 10:5). And it is something I find myself failing at often.

When I have started to spiral into that dark place the Lord has been very gracious to me, putting the same verse in my heart as a much needed reminder.

“Come to me all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.” Matthew 11:28-30

We are facing many unknowns right now and igniting memories of times when I felt as helpless as I do now. Being a helpless mother is a hard calling to accept.

Please be in prayer for our family as we navigate some hard things over the next several months. Pray for God’s timing and will in each scenario and for Malachi to have a peace from the Lord.

Much love,

Leah