Dot’s Rare Journey: A Milestone Moment

 

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 reaching the end of this chapter! 💖

Dot at her yearly Cranio-Facial doctor appointment having photos taken.