Our Story

Avery has had tummy pains her whole life. In 2019, she was diagnosed with Celiac Disease and it all made sense, her pains were from that. No such luck. In Feb 2022, Avery was admitted for acute pancreatitis and subsequently diagnosed with Chronic Hereditary Pancreatitis due to a genetic mutation in her SPINK-1 and CTRC genes and Exocrine Pancreatic Insufficiency. The genetic mutations are the same mutations her little sister,...

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Updates

3 (Actually 4) Month Post Op

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Avery and I had a great week in Cincinnati last week for her 3 (actually 4) month follow up!! Some of the highlights from the week: - We... Continue Reading »

Post Op Day 86

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Medically, Avery is doing great. She has been on the hydroxyurea for some time now but this week her ANC got too low so we have it on... Continue Reading »

Post Op Day 50

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Being home feels so amazing. We all have fallen in love with our favorite things about home all over again! Avery enjoys having a couch again. Jarret enjoys... Continue Reading »

Post Op Day 47

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We are heading towards home today!! Today is day one of returning to normal life and I can’t wait! Plan is to stay the night in Memphis tonight... Continue Reading »

Post Op Day 45

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We are heading to bed tonight still anxiously awaiting the ok to head home but we are so very close! We can go home as soon as they... Continue Reading »

Post Op Day 42

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Happy 6 week mark! We had a great weekend of doing things we love. Going to a Baseball game, eating ballpark food and having family game nights. Today,... Continue Reading »

Post Op Day 35

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Exactly 5 weeks from the day of surgery - WE GOT DISCHARGED! Just like the past 35 days have gone - plans changed and we got to head... Continue Reading »

Post Op Day 34

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We had a wonderful day out on the town yesterday with Harper and her mom! Last night, Avery said it was the first day in awhile that she... Continue Reading »

Post Op Day 32

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2pm: Got news the peer to peer call happened with insurance this morning for the Omadacycline appeal. The outcome wasn’t a yes but wasn’t a no. They don’t... Continue Reading »