Malachi’s week was full of adventures! As our summer winds down and the school year inches closer, we are trying our best to cram in as much as we can before Jake heads back to work.
On Monday Malachi got to meet his new teacher for school! This was something we have all been looking forward to as the transition to school is something we are nervous about. Within seconds of wheeling him into his classroom he went into a medium seizure, giving us a perfect teaching moment on what his seizures look like! He continued to “show out” during the 45 minute meeting, having another small seizure, a few staring spells, and getting mischievous and silly with his head control.
I am still working on Malachi’s handbook that will get distributed to his teacher, aide, and nurse. We will also try to meet again before class officially begins to make sure they are comfortable with his needs and care.
Malachi is turning into quite the little comedian and loves to make people laugh. He is talking a lot more around the house and loves to call for us if we set him down to briefly step into another room. I filmed him calling for his dad this week…he also says “I love” at the end (his version of “I love you”).
Wednesday we headed down to Chattanooga to meet with a dietician, something I had requested at our latest GI appointment. I needed some concrete daily goals as to what I should be aiming for in regards to Malachi’s nutritional needs. After talking with her I feel so much more confident that we have him on the right track in regards to calories and his weight gain. She didn’t seem concerned at all with his weight.
I had recently ordered a new meal replacement shake to try with Malachi as he has not been responding well intestinally to his soy nutritional drink. This new drink is called Kate Farms Komplete and is dairy, gluten, and soy free and is made with all natural ingredients. Trying new drinks is always a challenge as they are so incredibly pricey and we quickly find out he won’t tolerate them. After getting the thumbs up from the dietician we decided to give it a try and Malachi gobbled it down. That night he slept 7 hours straight and didn’t wake up with a tummy ache like he was doing on the soy drink. I think we have found a winner but we will give it a few weeks before we commit fully.
On Thursday we had a special lunch date with a family we connected with on Facebook. They just happen to live in the same county as us and tracked us down as a result of the Chick-Fil-A video and sent me a message about their son. He is 14 months old and was diagnosed with the same terrible and rare seizure type that Malachi had at 8 months old. After lots of messages back and forth we were able to officially meet up and introduce the boys! There is just something so refreshing about spending time with other families with unique needs like ours. And the momma is full of faith, which is something I need in my friendship circle right now.
Friday we went on an adventure with the youth and took a bus load of middle schoolers to lunch and to a Chattanooga trampoline park. Malachi loves spending time with the big kids. We spent the spare time in our week running soccer practices, meeting with contractors, and trying to sneak in some much needed pregnancy naps! Malachi’s new favorite way to sleep is with our foreheads and noses touching…not very conducive for my ever growing body.
Today we took Malachi for a swim with his cousins, which he absolutely loved.
This coming week is a wild one that will include a trip to Vanderbilt to get a scoliosis brace and meet with the orthopedic surgeon followed by a trip to Ohio to see Jake’s dad in between his chemo treatments. Jake will return to school the following Tuesday and Malachi is scheduled to start school Friday, August 4th! Insane!! We made some major progress on the house this week- it looks like we will be moving in within a month or so. I can’t wait to give you all a virtual tour of the finished product.
Side note- the new house is tucked into a very country area and we have been amazed at all of the wildlife we see right outside our house! The neighbors have seen black bears, but we have yet to see those. But just yesterday we came across a bobcat as we pulled out of our driveway! He stared at us and we just stared back, trying to figure out what this muscular looking cat creature was. He was the size of a dog and it wasn’t until we saw that bobbed tail that we recognized it as a bobcat! What a beautiful creature!
In 2 Corinthians, Paul talks about the concept of taking every thought captive. This verse has been on my heart and mind this past week as I continue to struggle with combating devil’s attacks.
Interestingly enough, with lots of prayer and lots of “faith over fear” reminders I was able to relax a bit this week and found myself stressing less and less about Baby C. But the devil prowls around like a roaring lion, and when he realized he wasn’t succeeding in that area of my mind he formed an attack against another region…
This week my thoughts have been continually flashing to Malachi’s future. A prime example happened this morning during church. The worship team was singing “10,000 Reasons” which is one of Malachi’s all time favorite songs. As I held him on my lap and listened to him sing out the words, grinning from ear to ear, I smiled to myself. But immediately my thoughts went to “We definitely need to make sure to play this song at his funeral.” WHAT?!? Where did THAT come from? Even as the thought entered my mind I was sickened by it.
But my radar flared as I immediately recognized this thought as the work of the devil. I had to transition my thoughts quickly to the power of God and focus on the plan God has for Malachi’s life. While I can’t guarantee that God’s plan for Malachi is for him to outlive me, I can guarantee that Malachi will not leave this temporary home on earth before God is finished using him in a mighty way.
Every. Thought. Captive.
Continue to pray for our family as we are getting ready for some major life changes…a new home, starting school, a new baby, and so many more exciting things. Pray that our walk with God continues to remain a priority during these busy days and that He would continue to use Malachi’s story in ways we can’t imagine.
Jake, Leah, and Malachi