Judah the Lion Takes On Cranio

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Judah the Lion Takes On Cranio I’m Candice, mom to Judah the Lion 🦁 Welcome to our journey ♥️ 🧬

Today is the two year annianniversary of Judah’s big surgery. And even if I hadn’t remembered the date, the behavior iss...
12/09/2024

Today is the two year annianniversary of Judah’s big surgery. And even if I hadn’t remembered the date, the behavior issues and lack of sleep from the kids would have been reminder enough. No one has slept well or felt well all week. We haven’t said a thing to any of them, but their little bodies have kept the score.

Just wanted to say a quick thank you to everyone who called, texted, donated, prayed, wore their t shirt, sent us food/hospital money. It was all truly felt! It’s a terrible thing to send your baby into a surgery like that but I can say we never had to do it alone. And just look at him… whew. 😥 God, do your mercies ever cease?

We’re feeling the grief. But we’re also feeling the gratitude. And there’s room for both. 🙏🏽 ♥️

So HAPPY HAPPY Surgery Anniversary to my Big Lion!!! Mommy is so proud of you, today and every day. We’re going to eat all the cupcakes and all the pizza and I’m going to hug and squeeze you endlessly just because I can. I love you so much. You’re the bravest guy I know. 🦁

Hello Hello from the side of the Louisville Slugger Museum & Factory building! Today Mom went Over The Edge for Critical...
06/09/2024

Hello Hello from the side of the Louisville Slugger Museum & Factory building! Today Mom went Over The Edge for Critically Loved to raise support and awareness for critically ill children and their rockstar families! The big event is tomorrow and they have just a few spots still open.. click the link to sign up or just to donate to these amazing friends. They’ve been a critical part of our journey and always in Judah’s corner. Our kids go through so much and they often don’t have a choice but to be brave and strong. I get a choice. I choose to be brave, just like Judah. 🦁 ♥️

11 out of 10 recommend!!!!


https://criticallyloved.org/overtheedge2024/

I told my husband for my Master’s graduation present I wanted a new tattoo… what I failed to mention was that it would b...
28/08/2024

I told my husband for my Master’s graduation present I wanted a new tattoo… what I failed to mention was that it would be a multiple-appointment, (few more $$ than anticipated), 12 hour extravaganza a couple towns over 😂 ( thank you to Josh from Modern Age Tattoo Company who listened to my insane vision & brought it to life in the most vibrant and meaningful way. It’s better than I imagined.)

My husband still loves me (God is good 🙌🏽), and tattoo is finished! It was inspired by Judah so I thought his page would be an appropriate place to share. 🦁

I’ve been in extensive therapy. And it has been so wonderful. What kept coming up was the grief and shame of sending Judah alone into the operating room. We couldn’t go back there with him. All he took with him was the blanket I made for him while he was in the womb. It was a dark time for me and it changed me. Irrevocably. It broke pieces of me that I knew would never go back the way they had been. I wanted my exterior to change to reflect the way I knew I had changed internally.

I wanted it to be bright, colorful. That time was dark, but I wanted the memory of it to reflect the light. I wanted to see inked into my flesh the reality I fought to believe in my heart- Judah the lion- not alone, but standing with, & protected by the Lamb of God.

The reality is that Judah was never alone. God was with him. God went with him. God was there in that long hallway to the OR. God was there in the operating room. With the surgeons. In recovery. In the ICU. God never left him.

The prophet Isaiah tells us that in those days (the last days) the lion will lay down with the lamb. We know this physical picture is meant to portray the peace he speaks of in the previous verses. How else can they turn their swords into ploughshares unless the Lord has already won the battle? And so my tattoo reflects both the already & the not yet- Christ has already come and conquered sin, but he has not yet eradicated the world of its brokenness.

You can see just barely on the lion’s head, he has a cranio scar- an exact replica of Judah’s. And across the Lamb’s crown the numbers 21 4. Because the Lamb is crowned with the promise of Revelation 21:4

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.”

And the words inked in black beneath it all, just as it is in the text, Ελπίδα Ζώσαν, living hope. From 1 Peter 1:3

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead

Our hope is alive because Jesus is alive. And our hope, ultimately, was not that Judah would survive his surgery, though we desperately wanted him to. Our hope was that because Jesus is alive, his sacrifice would be sufficient that even if Judah did not survive his surgery, that he would have gone into the arms of his Father. That one day, I will go into the arms of my Father. For as long as Jesus lives, so too does my hope.

ONE YEAR SEIZURE FREE!!!!!!!! Feeling all our feelings and giving God all the honor and glory!!! If you know anything ab...
30/04/2024

ONE YEAR SEIZURE FREE!!!!!!!!

Feeling all our feelings and giving God all the honor and glory!!! If you know anything about Judah’s story, you have reason to give God praise!!

So happy for you, little Lion!!!! 🦁

We had such a big weekend over here and it shows 😂 This will be a bigger medical week for Judah and we appreciate your p...
22/04/2024

We had such a big weekend over here and it shows 😂

This will be a bigger medical week for Judah and we appreciate your prayers. He’ll have his 2 1/2 year check up at the pediatrician on Tuesday and then Thursday we’ll be in Cincinnati to see ENT and Audiology.

And the following Tuesday April 30th will be one year seizure free 🥲

So many feelings… but gratitude and relief are at the top of the list. So proud of our little fighter!

Judah had an Easter Egg Hunt at his new school! 🐣 🪺 As you can see, he’s gotten taller when I wasn’t looking 🙈 Still the...
30/03/2024

Judah had an Easter Egg Hunt at his new school! 🐣 🪺 As you can see, he’s gotten taller when I wasn’t looking 🙈 Still the most handsome guy!! 🦁

Hi friends! We’ve been quiet over here, thankfully not due to an overwhelming amount of medical emergencies, but because...
27/02/2024

Hi friends! We’ve been quiet over here, thankfully not due to an overwhelming amount of medical emergencies, but because we are quietly and contentedly living our daily lives. This is the longest period of medical stability Judah has had in his entire life, and we are absolutely milking it for all it is worth! But I did want to pop up and say this Thursday, February 29 will be 🦓Rare Disease Day🦓. According to the Genetic and Rare Diseases Information Center (GARD https://rarediseases.info.nih.gov/diseases/7097/muenke-syndrome ) Judah is one of less than 50,000 in the United States with this genetic syndrome. His syndrome accounts for less than 8% of all documented Craniosynostosis cases. (Medical mom & academician.. I’m always going to cite my sources 😂)

All this to say, it is so much harder to care for him, and anticipate his health needs when we know so very little about his syndrome. And the truth is, there is more information available about his syndrome than others. Thursday is a great day to Advocate for all our little zebras, all our little ones with diagnoses just as complex as the feelings we have surrounding them. So wear your stripes or wear your purple for craniosynostosis or wear your Judah shirt, I think I will be in my Judah shirt. I’m usually not one for wear this or that days, but this one hits close to home. I’ll give another big medical update when I stop procrastinating on my schoolwork. Love you all, stay safe, kiss the ones you love. Enjoy whatever time with them you have been gifted.  but mostly… 🦁♥️🦓

Update*** he did great!!! He did so good! Von Allmen is very pleased with how the surgery went. They created some openin...
07/12/2023

Update*** he did great!!! He did so good! Von Allmen is very pleased with how the surgery went. They created some openings at the bottom of his sinuses to help them drain better, and washed out some very thick mucus from there. He did not see any pus or anything obviously infected, but Judah did just finish a course of antibiotics, so this tracks. he did say we will have to be very careful how we proceed in the future because Judah's sinuses are so very small and everything is so close together. His sinuses are very close to his eyes and his brain and they do not want to go in for another surgery and create more problems for Judah. The openings von Allmen made today could last for quite a while, but he could also outgrow them and need a revision later in life. All in all, very pleased. I will get to see him in PACU here in just a few minutes!

Surgery Day. Judah did not do well yesterday with all the transition and new surroundings. We are hopeful he will rest better tonight post procedure but a little pre-game nap never hurt! Due at the hospital for noon EST, surgery estimated for 1:30pm and to last for about an hour and a half.
♥️🦁🏥

Well, friends, we told the big kids about it this evening, so I feel more comfortable posting on social media. Judah wil...
29/11/2023

Well, friends, we told the big kids about it this evening, so I feel more comfortable posting on social media.

Judah will have another sinus surgery next week in Cincinnati. Most of you have seen frequent pictures of him with runny, snotty noses, this is not because we have not wiped his nose, we got to the point where we were wiping his nose so frequently the skin started to break. He just really does struggle that badly. One of the features of his genetic syndrome is under development of the midface. What this practically means is that Judah‘s maxillary sinus organ stopped developing. It is not fully formed. So what should be a 5 to 7 day cough or cold for him is months. Months of congestion and runny nose and blockage and we think sinus headaches. Judah will undergo a maxillary sinus washout to try to clean out some of the debris and help with the sinus infections. This will only be at temporary fix and to be honest, we don’t know how temporary it will be. But we are trusting that this will help bring a better quality of life for however long the Lord sees fit. We are praying that as Judah continues to grow, this organ will finish developing on its own. But if it does not, Judah will be a candidate in the next few years for a major sinus surgery.

We head to Cincinnati on Wednesday with all three of our children and Judah will have his procedure sometime in the afternoon on Thursday. We won’t know surgery time until 24 to 48 hours before hand. We will stay there the course of the day on Thursday, and assuming we have no complications, head back to Louisville Friday morning. Many of you have asked if we need anything, and we feel so very blessed to say we have been blessed and covered! A few of you have still persisted and asked about our cash app, which is $CandiceLofton . We have used these funds before for food or gas on travel days or comfort measures for Judah.

We feel grateful that world-class medical care is only a matter of hours away and Judah has an amazing team that loves him and is educated about him and the particular type of care he needs.

Specific prayer request would be that this trip would not feel like a tragedy, but like a triumph of a family that is still holding onto each other, and holding onto God, and being held together by God. We are praying that our children would feel secure, stable and well supported, that they would have fun with dad while I’m at the hospital with Judah. We ar spraying for a quick, uncomplicated surgery and recovery for Judah! And that he can kick his current sinus infection before the big day.

Thanks everyone for your support and love. 💗

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too. 2 Cor 1:3-5
.. but mostly

Today I went Over The Edge with Critically Loved and Down Syndrome of Louisville !So thankful for the amazing organizati...
29/10/2023

Today I went Over The Edge with Critically Loved and Down Syndrome of Louisville !

So thankful for the amazing organizations that continue to fight for special needs kids and families.

As wild as it is to look over the side of a building and lean back, there’s always the knowledge you have multiple safety locks and ropes. Having a special needs child with a syndrome so rare doctors have never heard of it.. handing him over for forever long brain surgeries, seeing him unresponsive in the PICU.. feels like leaning over a precipice with nothing to hold on to.

Critically Loved gave us something to hold on to. Friends and family gave us something to hold on to. And God himself was holding on to us.

I did it for Judah. They read his name aloud to the entire crowd! He’s the bravest guy I know ♥️ 🦁 🩺 🧬

Grocery store buddy!!! 🛒
09/10/2023

Grocery store buddy!!! 🛒

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