On Monday morning Levi and I made an early trip to Chattanooga to meet with the eye doctor.
Jake took the day off of work to stay with Malachi and get him to his therapy appointments locally. Malachi’s schedule is very far off from normal right now with him going to bed between 3-4am and then waking up by 9, which sounds awful but it is a better chunk than what he usually does so it feels like a treat. It takes a solid hour to get his belly even remotely ready for medications to go in, not to mention getting his feed in him. Anything before 11am is very difficult for us to get to as a family right now.
Levi’s check in was 7:45 and we live about an hour away. I was able to get Malachi to bed by 4, sleep for a brief 2.5 hours, then head out with Levi for a full day of appointments. I had explained the plans to Levi in advance but it still didn’t help his anxiety as we made the drive. We got checked in and taken back very quickly and much to my surprise Levi was able to communicate the pictures from the eye chart! They covered each eye and had him say the picture that he saw and I could immediately tell that his left eye was struggling more than his right eye.
We met with the doctor who confirmed that Levi’s optic nerve is deteriorating in the left eye and it seems that he is losing vision in that eye. He explained that there is a 1% chance that children can lose an eye in their lives due to a freak accident and wrote us a prescription for glasses. He does not need glasses for his vision, but rather for eye protection to keep him from losing his ”good eye“.
We will go back to seeing the eye doc on a regular basis to monitor his vision but for right now no more corrective surgery is needed.
Levi was more than happy to get out of that building and I promised him we would go shopping for “soccer shoes” as a way to distract him from the appointments of the day. He will be playing in our children’s soccer league and finding supportive shoes that his braces and feet can comfortably fit in is really difficult, especially when you live in a small town with a small variety in shoe stores. And it isn’t a shoe I can pick out online as I need to try the braces in each pair. We can rock some hand me downs but shoes are harder to make work.
Levi has a funny shoe obsession so going in to a shoe store was like a dream come true, and a moms worst nightmare as he tried on any pair he could get close to.
After a few stores we were able to find a pair that will work. But we still had a few hours to kill before his next appointment at the hospital, so we went to grab a sandwich. And then we went for an oil change. And then to the party store to buy some noisemakers for Jake’s birthday the following day. I called it our ”date day” and he really liked the one on one time. And I really enjoyed it too. I absolutely love and cherish Malachi with every ounce of my being, but the ability to run in and out of a store so easily without unpacking wheelchairs and multiple kids made me feel….well…normal? I am not sure that is the right word.
Next we met with the neurologist at the hospital to talk about Levi’s seizures. We have postponed the blood draw to check sodium levels for a few weeks when I can get him there pre-medication routine. Getting the bloodwork done pre-med will give us an accurate snapshot as to what it is doing to his sodium levels. The boys both have early day appointments in a few weeks so we plan to draw those labs then, which was a pleasant surprise.
Funny short story. We have been talking a lot about germs, and especially how hospitals are extra germy so we shouldn’t touch anything. The nurse took us to a room and we sat in the chairs across from her. Levi scrunched up his nose and pointed an incriminating finger at the nurse and stated emphatically: ”SHE has germs”. That led to a conversation on the way home about socially acceptable and unacceptable things to say haha!
We headed back home around dinnertime and Levi’s little voice spoke up from the back seat, ”Momma, that was a great date.” And my heart melted, overjoyed that he saw the day as a date day instead of a miserable appointment day. What a sweet boy.
Tuesday I packed up both boys and we headed back to the hospital again for Malachi’s appointment with Pulmonology. It was a productive appointment and we will be getting a special machine called a cough assist machine to help him clear his airway when he is junky or sick. Both boys now see the same pulmonologist so we just started them on appointment routines together for this one as well. Hidden blessings I guess?
Jake celebrated a birthday last week (#37) and Malachi celebrates his 9th birthday on Friday! It is truly min blowing to me to think that he is 9. What a wild and beautiful ride these last 9 years have been.
On a related note, we received a big, fun gift in the mail this week from someone but it didn’t have a gift receipt. If it was you please help us solve the mystery and give us a chance to say thank you!
On Monday morning as we drove down the highway to our dreaded appointment, Levi’s emotions were all over the place. He was angry and sad, and frankly so was I. It is always hard doing things you truly have no desire to do that cause discomfort. The boy’s lives are full of so many hard things.
Levi loves stories. We figured this out through the potty training process, and I would sit on the floor in the bathroom and make up stories for him as he attempted to go #2. After a few weeks of this he would tell me that he needed to poo just so he could listen to some stories.
As we drove down the highway I thought a story would be a good distraction for both of us, and the worship song we were listening to prompted my heart to tell him the gospel message about what Jesus did for him. I started with baby Jesus and went all the way through the ascension of Jesus, talking for at least 20 minutes and he clung onto every single word. I didn’t expect his attention span to last that long but as I watched his face in the rearview mirror I could see him just taking it all in with such excitement and joy.
When I got to the part about the tomb I said ”And Levi, do you know what they found when they rolled the stone away?” And he squealed with anticipation and said ”WHAT WAS IT?” Seeing the joy on his face when he heard that Jesus rose from the dead brought me to tears. It was such authentic and raw feedback from a four year old about the wonderful gift that Christ has given us in his death.
Today, nearly a week later, he told Jake the story from start to finish with such detail and clarity. In fact, this morning when he woke up he sat upright and said to me ”Are we going to church?” And after I said yes he calmly said ”He had to be punished.” I gave him a bewildered look and asked him who he was talking about and he told me that Jesus had to be punished and talked about the nail marks in his feet and the sword that pierced his side.
Watching the faith journey of a child is an exceptional thing. And it is so incredibly beautiful to witness.
I am not quite sure what calling Levi has on his life, but I can’t help but feel that God is equipping him for something unique. The devil tried to steal his voice at birth, but instead he has a beautiful testimony….not only of his medical journey but also the honor of being a testimony bearer for his brother, Malachi.
May we all have the wide eyes and big emotions of a four year old when we hear about the things that Christ did for each of us on that cross. I pray that our brains never dull the magnitude of that sacrifice and that incredibly display of the love of the Father.
Please pray for our family this week, that we are surrounded by a hedge of protection. Our soccer ministry starts next week and whenever God has something big He has called us to the devil has a knack of trying to slow us down. Please pray for heath for our family and God’s wisdom each and every minute of each and every day.