April In The Burbs

  Dot giving her Nana smiles after CVR surgery. Most of our followers are at this point well versed Dot’s life threatening condition of Adrenal Insufficiency - or AI as it is commonly known. However, Dot was also born with the rarest form of craniosynostosis—lambdoid craniosynostosis. These two rare conditions are in no way related as far as her doctors are concerned. She just happened to hit the rare patient lottery! 🎰 (😅) At just 11 months old, she underwent a major cranial vault reconstruction (CVR) surgery, leaving a large zigzag scar that stretches from ear to ear. It’s been a long journey, helping her heal from such an intense surgery and navigating regular MRIs, follow-up appointments, and more. Today, we’re celebrating incredible news: her craniofacial doctor wants to see her in two years, and after that, we’ll likely no longer need follow-ups for this condition. 🙌 It’s a huge milestone in Dot’s journey, and we couldn’t be more thankful. Grateful and blessed to be reachi...

  If you’ve ever had to coax a kid into the car knowing they’re headed for something unpleasant, you already know the unique mix of dread and determination that comes with it. For us, that’s every four months when it’s time for Dot’s lab work at Dell Children’s.   Dot, my 10-year-old firecracker, has adrenal insufficiency, which means her body doesn’t produce certain life-sustaining hormones. Routine lab work isn’t optional, and while she’s a trooper, let’s be real: no one *likes* getting poked with needles.   The Lab Day Ritual   Here’s how it goes:   First, there’s the pep talk. “You’ve got this, Dot! Starbucks after—venti caramel ribbon crunch, your pick!” (Bribery? Absolutely.) Then the drive, where I try to keep things light with bad jokes and her favorite songs on repeat.   The lab itself is hit or miss. Some days, we’re out like pros. Other days, veins play hide-and-seek, and it’s a circus act. Thankfully, the PICC team at De...