Landon Hall Tatum: CDH + CHD Journey

It’s been awhile since we’ve given an update on Landon!

He’s still getting all of his therapies: speech, PT and OT. Over the last few months he’s started walking independently and has been keeping us all on our toes. We’ve seen a lot of growth in him recently and feel blessed by his team that is always pushing him to be his best.

During speech therapy, we’ve slowly introduced small bites of purées but he still remains fully gtube fed. Landon had a swallow study this morning for us to get an idea of where we are with oral feeding and how everything looks when he swallows. The study went good! We did apple sauce and even tried a little bit of liquid and he did great. His swallowing looks great! We got the go ahead to continue on and introduce small amounts of liquid.

As far as his heart, Landon still doesn’t have a pulmonary valve and recently it was thought that a heart surgery may be necessary to place one much earlier than originally thought. Good news is, his last echo was “normal” and looked good enough to push off the ideas of surgery for quite sometime. With increase weight and growing he should be able to have a valve placed at a later date through a catheterization!

He finished preschool this past May and had a phenomenal year and a half with the best team and staff imaginable. In a few weeks he’ll start KINDERGARTEN! We are over the moon about the chance for him to be at “big school” and cannot wait to see all that he learns and how he’ll progress during his time there.

Landon has been doing so well and growing and in ways we never dreamed of. We could only pray and hope for. We are so thankful for him and everyone who continues to love on and pour into our family to help Landon get to where he is today!

Being his parents is a joy and we are so thankful the Lord saw us fit to love on and take care of him everyday!

Landon’s cath procedure yesterday went great!

We have plans to meet with his cardiologist soon to go over all the findings and options moving forward. While Landon didn’t need any immediate intervention yesterday it seems there is a need for it sooner than later. What that will look like will be discussed by MUSC this week and relayed back to our team here.

Prayers that any intervention will be minimal and that it will be able to be prolonged as long as possible!

Taking a trip to Charleston for a couple days…

Landon has a heart cath planned for early tomorrow morning at MUSC.

His cardiologist felt it has been long enough since his last and that we need an updated look at what may or may not be going on inside his heart. Landon still functions without a pulmonary valve but it could be time to address it.

We are praying for a quick procedure and a trip back home to wait and hear the results. Hopefully no intervention will be needed at all!

Pray for a quick and safe trip for all!💙

Happy first day back to school!♥️

Merry Christmas Eve! ♥️

Support my mommy! 😊

Buy a shirt or sweatshirt today!

https://forms.gle/vNWkXkGDWdk1U2X57

Echocardiogram #45!

Landon got a great report from the cardiologist today. This echo was “better than his last one” and no concerns at this time!

We love any good news but especially after an echocardiogram!♥️

Yesterday Landon had his school screening with Greenville County Schools to help us get a plan for him to start school next year!

This is just the first step of many to find the best place for him. Please pray for that with us! 💙

Landon had to go to the doctor’s office today and we had all of his equipment with us. While waiting to check in, another mom and son walked in behind us. We smiled (through our masks🤪) and continued to wait. A few seconds later I heard the mom say “Don’t just stare, just say hi!” I glanced back and smiled again as the son acknowledged Landon.

Not long after, the mom leaned over and said “my son would like to say hi to yours!” And so I stepped back while this sweet boy spoke to Landon and asked a few questions.

As the boy walked away the mom said “thank you!” And all I could say back was “thank YOU!”

This was possibly the sweetest moment and encounter that Landon has ever had. I’ve heard it before and read stories like this. But it was a blessing to be able to witness it firsthand.

“Don’t just stare. Say hi!”

Thank you so much for the prayers for Landon today!

We are back home and everything went well.

From the time we hit the door until the time we pulled out of the parking lot, we were taken such great care of. Everyone loved on our boy and made today an amazing experience.

We are beyond thankful for the team here in Greenville and thankful for how the Lord has placed them in our lives to take care of Landon and our family.

Landon has his yearly ENT bronchoscopy tomorrow morning. This should be a quick and easy procedure.

Please pray with us that everything will go well and that the recovery will be a breeze for him!

Tomorrow morning we wrap up our beach trip for the summer. We had a great week of watching Landon do new and exciting things, like being in the big swimming pool for the first time!

And for the second year in a row we have had someone come up to speak to us on the beach because they recognized Landon. It’s not lost on us the impact that he has had but it’s so amazing to be reminded of that impact from time to time!

We are so blessed for this family beach trip and cannot wait for the next one.

Landon was honored at this year’s Upstate Heart Ball hosted by the American Heart Association - South Carolina last weekend here in Greenville.

We were able to attend on his behalf and had the greatest night celebrating him and taking part in the amazing things that the American Heart Association does all year long.

Back in February our family filmed this video that was played the night of the Heart Ball. It was such an amazing feeling being able to witness the impact that Landon has had on all who know about him!

We are so thankful for organizations like the American Heart Association and all their research and hard work that gives support and encouragement to families like ours! ♥️

https://vimeo.com/700637566/recommended

Landon - AHA Greenville 2022 This is "Landon - AHA Greenville 2022" by Coastal Creek Media Productions on Vimeo, the home for high quality videos and the people who love them.

Echocardiogram #44 did not go down without a struggle 🤪 but we got a good report from the cardiologist.

We’re thankful for a good appointment and will be back in six months with hopefully a more cooperative toddler!

Find your kid a dentist that will sit in the floor with him when he’s not cooperating for his teeth cleaning.

I’ll probably say it every time we go but Indigo Pediatric Dentistry has to be the best there is!

Happy Easter from our family to yours!

We have started our next steps in trying to wean Landon off the ventilator at night and eventually the trach all together!

We have a plan in place to start trial running him off the ventilator at night starting in the next few weeks.

During the day we have started using a Passy-Muir Valve (PMV). This valve is a “swallowing and speaking” valve that allows air to go in through the valve and the trach but not back out the trach. Landon has to exhale all on his own through his mouth/nose. Just like with his vent sprints, we are starting small and working our way up. Today he was able to tolerate 15 minutes with the PMV.

https://www.passy-muir.com

This is a whole new way of breathing for Landon. And it helps us get one step closer to hopefully not needing the trach at all!

Please pray with us that these new changes will be a breeze for Landon and that the progress will keep on coming!

Landon had the best time at the zoo this morning!

We spent part of the afternoon having conversations with our pulmonologist about Landon’s future that I wasn’t sure we would ever get to have.

It’s been such an overwhelming great day! ❤️

We met with the pediatric surgeon today to go over Landon’s upper GI and discuss his belly discomfort from a few weeks ago. Thankfully he does not see anything that needs surgical intervention.

We know Landon’s abdominal anatomy is kind of funky with his CDH diagnosis and original surgery. Needless to say it was encouraging to hear that everything looks good and that how we’ve been managing everything at home is working!

Once again we are blown away by the team of doctors that we’ve been given. The knowledge of not only Landon’s diaphragmatic hernia but also his medical background is a sense of relief to our family.

January was a great month for our family with Landon coming off the vent during the daytime. February was harder with lots of belly issues. We are so hopeful for the month of March!

Our boy! ❤️