Our Story
Bodie was born with Hypoplastic Left Heart Syndrome (HLHS). This means he was missing all of the structures on the left side of his heart - he essentially was born with only half a heart! In addition to the structural defect of HLHS, Bodie also was born with Catecholaminergic polymorphic ventricular tachycardia (CPVT), an inherited cardiac condition that causes sudden arrhythmias in response to adrenaline. The combination of these two...
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https://youtu.be/4-tSpmNsCCc?si=BuRamAna0dA24ouS These are the posts that are hard for me to write, because we’ve never been good at accepting help. We much prefer to be on the giving... Continue Reading »
The Hard Launch
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I like to refer to Bodie's transplant summer as Sierra's "soft launch." Completely unexpectedly, I was forced to learn to live 500 miles away from my sweet girl... Continue Reading »
Summertime Blues
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I've been meaning to write this post all summer, but kept delaying it because I wanted to wait to write it until I had something to post about... Continue Reading »
Lessons in Patience
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Our life has been pretty chaotic as of late. In the past 3 weeks Bodie had an emergent unplanned hospital admission, got out in time to take his... Continue Reading »
43 never looked so good
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After last night's overnight IVIG infusion, Bodie's platelets jumped up to 43,000! He's still not at a normal range of 140,000 - 440,000 - but at least he... Continue Reading »
Learning a new language
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So the last couple of days have been a crash course in Biology, Immunology and platelet development and consumption. To be honest, I'm still not sure I completely... Continue Reading »
Ugh…platelets are SO last season…
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After getting settled into our room on the Hemoc floor late Wednesday night, they checked Bodie's platelets again (they had dropped to 7,000) and did a platelet infusion.... Continue Reading »
Well, this wasn’t on my 2025 Bingo card…
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After recovering from CMV and returning to school in March, Bodie has thankfully had a fairly uneventful period of growth and rest...until this past week, when his weekly... Continue Reading »
Life on the Struggle Bus
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The good news is, we're back home! We returned home Tues, the 11th, and have been settling back in since then. Physically, Bodie has recovered well, and his... Continue Reading »
The Lucky Ones
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Bodie was discharged Thursday night, to the local Ronald McDonald House! He had follow-up labs Friday morning, which looked pretty good. His CMV levels continue to trend down,... Continue Reading »