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Alexander's Adventure, Wichita, KS (2026)

08/13/2025

8/12/25

Alex had a long appointment today! 8a-5p! He had 2 MRI’s, a pulmonary functions test and a stress test followed by meet the teacher for 5th grade!!

The results of the tests were amazing! He is scoring high across the board! His liver is scoring as a “normal” person’s liver! He was able to maintain his oxygen while on the bike, and his heart is stable! The only issues that we are facing is that his aorta needs a little bit of repair again, and where they connected the inferior vena cava to the pulmonary valves with a fontan conduet needs to be adjusted due to growth. The first one can be done absolutely by cardiac cath and will most likely be before the end of the year, the second one will be attempted my cardiac cath first. If unable to achieve results then they will have to open him up again. This will be about 5 years out. Giving him the chance to grow some more.

Some more good news we have is that he is able to do band, and they lifted all restrictions (except contact sports and amusement rides)… they said every day is leg day for Alex, if we can strengthen the bottom half we will see better results on the top half. They said treat him like a regular kid, he is at only a slighter risk than a normal kid!

Always great to hear good news! Maybe I cried a couple times, but we are so proud of him! He is my hero! Here are some pics from today! ❤️

01/29/2025

1/28/25

Alex had a check up yesterday, and it was filled with amazing news!!

Alex’s heart is in great shape! Absolutely no change! We were worried about a few things and got great answers!

1) originally we were given some rates on odds to make it to 18 years old, the possibility of making it past and having a family of his own was unknown. Now Dr is saying: he see’s no reason Alex can’t live a full “normal” life well into his 40’s or maybe even 60’s and will be able to have a family of his own and work a full time job!

2) we weren’t able to travel well, having to stop to let his body adjust to elevation changes. Those are now lifted, and Alex will only have to adjust if over a 10,000 foot elevation change.

3) We were told no theme parks, Alex still and will not be able to do roller coasters, due to the G forces and the movement of blood that occurs during them, but he says that other rides are ok as long as we are watching G forces.

4) We were told that organ failure will most likely show up between 10-12 years of age. Dr says that’s not true anymore. That we will only see it IF we have heart failure first. (They will biopsy his liver in the future to make sure it is still doing well)

5) As for growing, he is still small, but Dr. believes it is more genetic than cardiac related, however the two are working hand in hand.

Dr says that a lot of things they knew to be true 10 years ago are proving not to be true. A study done in 2019 shows that a lot of these kids are surpassing the expected outcomes. We will dive into that later this summer!

Next steps: Alex will have a stress test this summer, this is a normal process. They will be watching the functioning of his heart under stress. He will also have a cardiac MRI with the liver biopsy to get a full picture of the inside and flow of his heart. We are expecting a cath with a ballooning early next year, however if a bigger stent is needed they will replace it at that time.

All good news for our boy, and we can’t be happier! We are blessed that this has turned out so well. Enjoy some pics of my sweet Bug!

10/07/2023

4 years ago Alex had his 3rd open heart surgery!! He is still doing amazing and continues to surprise us daily! It’s been a hot moment so here are some updated pics of Alex!
He is 46lbs (2nd percentile 😬🤣)
Crushing 3rd grade!
And still lives an adventurous life full of love from many ❤️

01/09/2023

1/9/23-

Alex had a check up today! And it went well but also got real. The good news… Alex is 3ft 11in, he lost a little weight but rang in at 40lbs, and his oxygen was good at 96! His blood pressure was good but I can’t remember the numbers 😬🤣🤷🏼‍♀️.

I have always been completely transparent on this page and I will always continue to do so. First I will start off by saying that Alex’s heart is in great shape! The dr said he has one of the best out of the single ventricle kids that he see’s. But let’s back up a bit…. We were told when he was a baby that we would possibly start seeing organ failure starting between the ages 10-12. That always felt like forever away, but Alex is 8 now, so it’s not so far away. Today during the appt we started the “real” talk of what comes next. Now, none of these things that I am writing about are guaranteed things to happen, how ever Alex’s chances are higher due to his defect. It comes with the territory.

Next year they will run some tests to make sure that his heart is still doing well, they don’t think there will be any issues, it will just be time to check up. When he is 10, the standard will be to start taking a deeper look at his organs. That being said Alex’s liver is already enlarged. It is enlarged a “normal” amount following the fontan surgery that he had. This means that he will have a higher chance of fibrosis, which could lead to cirrhosis, and there is a SMALL chance that it could lead to hematocellular carcinoma, aka liver cancer. There is already a plan in place, and tests that are standard to run. We will meet with many doctors for an all day event of MRI’s, CT’s, a liver sonogram, a cath, and some blood work to see how all his organs are functioning at that time. This is normal stuff for single ventricle kids as they hit this age. They mentioned that IF for any reason any of the doctors suspect anything wrong, then he will start following the transplant team more closely. This does not mean he will need a transplant, this will be just staying on top of things as a precaution.

While all these things are things we knew were coming, it is scary. I don’t know if I just didn’t believe that we would never see age 10, or if I have just done a good job on focusing on the now. But to me 2 years is going to go by so fast, and before you know it he will be going through all this testing. I am already nervous, I know it’ll pass, and then become more prevalent when the time is closer. But for now I will focus on the now! And I will replay the words “his heart is in great shape” in my head on repeat. I knew this road would be bumpy, but I also know that he will still grow to do amazing things, and I am blessed to get to be his mommy, and I will love every darn minute of it.

I promised to share his journey and I will always continue to do so, the good the bad and the ugly. I know my heart mommas out there can relate. Thank you for reading my long post! I hope you all are doing wonderful!! The picture of him signing a paper, is him agreeing for them to use his journey and some blood they took in the past to help other kids like him and help doctors learn more about chd! ❤️🥰 (yes we signed it too).

Love you bug 😘

09/29/2022

9/27/22

Quick appt with great results! Alex’s jewels are great. Apparently he has an over reactive cremaster muscle and that has caused his testicles to hide up very high. 🤣🤷🏼‍♀️ I learned something today! As he grows this won’t be a problem anymore, and we won’t have to hunt for his jewels anymore. 🤣🤣🤷🏼‍♀️.

It’s been a while since I have posted, but Alex is 41lbs and 3ft 11! He is doing great from a cardiac stand point. His next cardio appt is in January, and then they might schedule for a ballooning of the stent in the aorta. But he has been doing fabulous and growing like a w**d!

This summer Alex started being more brave! He lit off some big fireworks, learned to swim, and jump in pool by himself! Alex is in a new school and is loving it! He continues to grow and impress me every day! He is a quick witted, pretty funny little guy!

Alex says “don’t forget to say “he is cute!””

09/29/2022

9/29/22

A little check up today. Nothing heart related, however we seem to have some hiding jewels 🤔. So we are checking with urology to make sure everything is going well, or if further steps are needed. This boy sure does know how to keep me on my toes!

04/02/2022

4/1/2022

Fellow Followers, I have come up with a new plan for Alex's birthday this year. Ok so Y'all have until December, however I am asking if you could please save all your Pennies, and Nickels this year!! While Pop Tabs are amazing, and easy to save, and yes I can take those as well. I have learned that it takes more than 15 pop tabs to equal a penny! So, That being said I have come up with the idea. I think that if everyone saves up their pennies and nickels, we can make a bigger impact for RMH and deliver it near Alex's birthday! Let me know if you have any questions, and thank you for your continued support for Alex and all the other families that use RMH on the daily!

12/18/2021

12/18/21!!!
Let’s be real about today! For months I was given the choice abort or fight? I was faced with tough questions, plan a funeral or fight? Never once was my choice to do anything less than to FIGHT! When we were told that making it to 1 was going to be a battle, we chose to FIGHT and let you chose how far you wanted to go! YOU survived 2 open heart surgeries, heart caths, and multiple other surgeries in your first year of life and you were still fighting! Then came 2! With doctor visits being a monthly thing, and facing your fears with every poke, scan, echo, and cath, YOU chose to FIGHT! Then came 3, still you were a fighter! Then 4! You faced what we hope is your last open heart surgery and you chose to FIGHT! After staying home with you the first 4 years here came 5 in the blink of an eye and mommy sent you off to Kindergarten. 6 you went to first grade, we hear about how Kind and helpful you are, how you are an example for your class, and how you are a master at reading! And now son, YOU are 7!!! Every year is a miracle! My promise to you is to always stand by your side, I will always advocate for you, I will always fight for you, I will always encourage you to try new things with in your limits, and my hope for you is that you see yourself through my eyes! You are brave, you are strong, you are silly, you are smart, you are emotional, you are serious, a lover of animals and dinosaurs, a movie fanatic, you are a hero to many, you son are loved by more people that you will ever meet, and you encourage other families going through their own CHD journey, even those in other countries! YOU are my personal hero! It hasnt been easy, but you son are crushing it! Happy birthday bug! I love you so so so much! Here’s to 7! Let’s make it the best one yet!
Love,
Mom

11/11/2021

11/2021 Updated photos!

11/11/2021

Hey all!! Haven’t posted in a while… but that’s a good thing 😉! Alex is doing great! I’ll post some pictures to catch you all up!

However this post is about a random thought I had. I don’t know why it took me this long to think about it, but can you all gather your pop tabs up!? I would like to start making a large donation to the RMDH here in KC on his birthday each year! December 18th! If you guys have a small amount and would like to mail them to me, you can DM me. If you guys have a lot you would like to donate we can set up a way to get them. Wichita friends, I can come down if there is a lot to come get and have a meeting spot. KC friends get with me! I will be doing this next year as well if it’s easier to hold on to them for another year. Thank you all!!! I will post some pics of the Alex!

07/06/2021

7/6/21

Alex had a check up today and it was filled with good news then followed by some annoying news…

Alex is going great! His heart function is great, his pressures were good, and he grew and GAINED WEIGHT! Not much, but we will take it!! He is 36lbs now and 3ft 9in! He is officially on the charts in the 1 percentile 🙌🏼! We talked about how summer could effect him if he doesn’t stay plenty hydrated, and that his naps are normal just because his heart is working so much harder than a “normal” heart. So some of his activity will be limited but not by much. They did up his blood pressure medicine, and he can take a full 81mg chewable aspirin! No more splitting tablets!! 🙌🏼. I asked about theme parks and his dr did say that Alex will never be allowed to ride “adult” roller coasters or rides that spin very quickly. He should not need a balloon procedure for hopefully 2 years unless he has a growth spurt. He is not supposed to go back for 6 months… however… for the annoying news…. His cardiologist is moving 😭😭😭… so Monday morning we meet a new potential cardiologist that was hand picked for us. That may not sound like a big deal, but let me tell you it brought this momma to tears. This will be #4 in his short 6 years. I know life happens and people make choices to move and I understand that fully! I just want someone who KNOWS Alex. And someone that Alex can grow with. So now my heart momma fears are back. I will be very clear what my expectations are and how Alex’s care is handled. This new potential cardiologist specializes in single ventricle kids from birth on and is also an adult cardiologist. He also is a cath doc. So when Alex needs his next cath this dr can do it. He ALSO (lol) runs the Fontan clinic which our “current” cardiologist does beside him. I was told he is firmly planted here in KC, so 🤞🏼🤞🏼I keep reminding myself that change is good, and I am hoping for the best, and wishing Dr Singh the absolute best in every single dream she chases! I am thankful that she reached out to Alex’s (and I’s) counselor and had her there during this conversation. Jamie surely knows how to pick up my pieces and help both Alex and I during life’s changes. And for that I am thankful! Enjoy the pics of my growing boy!! ❤️❤️

Alexander's Adventure

08/13/2025

01/29/2025

10/07/2023

01/09/2023

09/29/2022

09/29/2022

04/02/2022

12/18/2021

11/11/2021

11/11/2021

07/06/2021

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