Alexander's Adventure

Alexander's Adventure This page is to take people on our Journey with us, as we get ready to bring a son into the world with Double Inlet Left Ventricle and Touch someones Life.

05/22/2026

5/22/26

This video is the Dr. explaining everything to us ❤️

5/22/26What a busy few days! Things did not go as planned, they went better! The liver biopsy was first and they were in...
05/22/2026

5/22/26
What a busy few days!

Things did not go as planned, they went better! The liver biopsy was first and they were in and out! They went into the LPA (left pulmonary artery) to balloon the stent. They have ballooned it to a 10mm, max is 12 and that will be when Alex is an adult and full grown! The next plan was to stent his Fontan conduit. However, the echo and MRI were wrong, and his conduit is working amazing! There is no gradient from top to bottom! The video below explains all the things.

You will hear Dr. Rockefeller tell us some interesting things about Alex. He mentioned that he was once again impressed with Alex. He told us that when considering heart function, if you put another 11 year old next to Alex, you would not know the difference between the two. Unless you went digging of course.

We are very blessed to continue to have these results! Alex had happy tears at one point stating “I have finally made it!” He is so excited to be on this side of things. We couldn’t do any of this without the love and support of our family and friends and thank you all very deeply for your support, love, thoughts, and prayers!

He continues to amaze me each and every day! He is my literal hero! He has no idea just how strong he is. Thank you all again!

Amber

5/22/26Heading home!!!
05/22/2026

5/22/26
Heading home!!!

5/21/26Alex is out and resting! Full of great news today! Will update soon
05/21/2026

5/21/26

Alex is out and resting!
Full of great news today!
Will update soon

5/20/26Our fun, adventurous, life chasing, red head is having a heart cath tomorrow. They will be ballooning the stent i...
05/21/2026

5/20/26

Our fun, adventurous, life chasing, red head is having a heart cath tomorrow. They will be ballooning the stent in his aortic arch, placing a stent in his fontan conduit, and taking a liver biopsy. Should take 2.5hrs, but we will be hanging out over night. Will get to come home Friday morning after an Echo and X-ray to confirm everything is working well!

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Wichita, KS

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+13163506846

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