Before Lydia's surgery, the surgeon who performed the endoscopic procedure told us that 50% of the treatment is the surgery and 50% is the helmet therapy. Since the brain is normal in craniosynostosis, but the skull is not, the brain continues to grow, but if it isn't allowed to grow in one direction, then it will grow in another. The surgery reopened Lydia's fused sutures and the helmet helps mold the head allowing for places that overgrew previously, to be held and places that weren't able to grow, to grow extra. Since over two-thirds of physical brain growth occurs in the first year of life, wearing a molding helmet (or cranial orthosis) as much as possible early on is essential.
Being fitted for her first helmet
It's now been almost two months since Lydia started to wear her helmet. I have to say, it really doesn't bother me as much as I thought it would. I was first disappointed that so many of Lydia's baby pictures would be of her wearing a helmet, but it's become such a part of her now that we hardly notice it. I've actually kind of enjoyed being able to decorate it every few weeks with different stickers.
2nd decoration -- Hearts
3rd decoration -- Tulips
4th decoration -- Apple blossoms
Five weeks after surgery, I took Lydia in for her first helmet adjustment. They took a scan of her head and gave me a printout. The most change can be seen in her forehead which is what we were hoping for.
Profile change after 5 weeks.
Birdseye view after 5 weeks. (the hole is part of the the imaging and not her soft spot)
Before surgery her cephalic index was 91%. A normal index is between 78-80%. After 4 weeks in the helmet her new index is 88.5%. We're getting closer. Lydia is schedule to get a new helmet the end of April. I'm eager to see on paper how close she is getting! We'll keep you posted!
~Kelli



3 comments:
She is so adorable, and looks so happy now! We miss you guys, and are so thankful she is on her way!!
She is so cute! You did a great job decorating her helmet! What a great mom! Glad to hear she is doing so well!
Aw, she's so cute. I just wanna hold her! and you do a great job decorating her helmet.
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