On March 10th, 2022 it was Madilyn's "one year cranioversary"...it seems like her surgery was ages ago! Her surgery really opened our eyes to how precious and important life is and how things can change in an instant.

Today Madilyn had her one year appointment with her cranio team - neurosurgery and plastics. Physically Madilyn's head is beautiful, her facial features are symmetrical and she's so dang smart, silly and sassy. However, we've had looming concerns about her physical mobility. At her 6 month appointment we brought up her "laziness", her lack of use of her right leg, and no ambition to roll/crawl and pull-up. We were told by her cranio team to just wait it out. We took matters into our own hands and got a referral to a physical therapist and began weekly PT. Their analysis showed she had hypermobile joints, low abdominal muscle tone and overall lack of ambition to move. Weekly PT, along with chiropractic adjustments helped her finally crawl at 15 months!!! It's been great for her to have her new found independence and chase around big sissy! Still, at almost 17 months, Madilyn isn't pulling up or standing - she's getting there - but taking her sweet time. Her cranio team isn't concerned that her craniosynostosis is the cause of her delay, but it definitely cannot be ruled out 100%.

At her appointment today her head measured beautifully. Her plates in her skull feel like they're in the right spot and milestones, other than mobility, are being met. The team did refer Madilyn to an eye doctor to ensure there is no pressure on her eyes as that is a key indicator of increased intracranial pressure (ICP). If ICP is indicated she will have additional scans to determine next steps. We are definitely optimistic that she's not leading down that path. All we can do is pray for her continued health and strength.