Had our 2 year post op appointment on Tuesday and the doctors were so happy with Evelyn’s results! Her head is growing perfectly and her eyes and face are symmetrical. Her neurosurgeon said she is their poster child for coronal #craniosynostosis and is their best success for this suture to date!! Way to go baby!! Early intervention was a huge part of her success, and I’m so glad we got help when we did!
FOUR YEARS ago Thatcher got discharged from the PICU following a surgery for craniosynostosis that his surgeon recently wrote up because of its uniqueness. Like we needed some medical paper to tell us Thatcher is one in a million. Anyway, Thatcher’s never looked back (he’s GREAT). But every once in a while I need to. ❤️ #craniosynostosis
4 months old (yesterday...at least we took the pic on time)! Boone is the sweetest baby! I can’t get enough of him and his squishiness (look at those buns). He had a bit of a rough start but he’s come a long way in such a short time. He’s rolling all over the place, sleeping through the night, drooling like a champ, he tries to talk to me all the time, he loves his reflection and especially his hands, he’s gotten really good at grabbing things he wants (and my hair). Time is really flying by and I’m trying to enjoy these sweet moments with my baby before he turns into a 2 year old like his big brother. We are all in love with you, Boone! #boonebenjamin#4monthsold#17weeks#babyboy#craniosynostosis#helmetbaby
She gets her ‘helmet’ off in two weeks and I’m stoked, but it means she’s that much closer to her second surgery ☹️ she’s almost three months post op from her first #craniosynostosis#CVR#surgery and less than three months away from her second #craniowarrior
This popped up on my #facebookmemories It was from last year. What perspective it brought! -
This first picture is of an 8 month old who couldn't sit, roll, crawl or stand. She couldn't sleep unless she was swaddled. I remember sitting and trying to write and thinking how long summer would be. I couldn't put her down to play. She couldn't sit and hated tummy time. Her #craniosynostosis shaped head even meant laying on her back was uncomfortable. I wasn't just worried about when she'd meet her milestones, I was worried if she'd meet them at all. -
I've been a bit anxious about juggling things with the kids home all summer. Tomorrow we have soccer camp drop off/pick up, #physicaltherapy and #occupationaltherapy in between, an #orthotics visit to adjust her helmet, and an evening event. But watching her in the #boomerang#dancing to If Your Happy And You Know It makes it all worth it 🙌 -