Joy got her helmet on Friday and I think we are both finally adjusted to it! I realize there has been some confusion about what exactly the helmet is for. The helmet is for a process called cranio orthosis, which uses a custom-fitted helmet to reshape a baby’s skull. 

Joy was born with a fused coronal suture in her skull (a condition called craniosynostosis which was corrected in her surgery earlier this month). With her skull and brain unable to grow in the direction of the fused suture, they compensated by growing in an abnormal way in the opposite direction. The result? A badly mis-shapened head. The helmet, worn 23 hours a day for about a year, applies gentle, consistent pressure to the skull to promote healthy growth and proper alignment. 

Joy struggled to sleep in it at all at first so we had a lot of contact naps this weekend. She is still struggling at night and will wake at least a couple times (compared to her normal of sleeping 10+ hours through the night… I know, I know, we’ve been spoiled), but that could also just be true fact that she’s teething… or going through 4 month sleep regression… *le sigh* it’s always something 😅 

The regular trips into Dallas have unfortunately not ended. We’ll be trading in our weekly visits to Children’s Medical Center for bi-weekly visits to UT Southwestern (across the street from Children’s) for helmet adjustments by her orthotics doctor. She still has a handful of follow up appointments with her specialists at Children’s, but none we will be seeing on a regular/consistent basis like before. 

I’m still learning the ropes of how to ensure it’s on properly and isn’t too tight or too loose. And Joy is still learning how to hold her head up with the added weight of the helmet. It’s a new season of hard, but with how long Joy will be wearing it, I know we will both eventually get to the point where the helmet is second nature. Plus it’s fun to decorate so that’s a bonus too 😉 

We are heading to College Station this week for the Thanksgiving holiday— Joy’s first road trip / overnight stay to someplace besides the hospital! I’m a little nervous about how this will go and hope I packed enough of all the supplies she’ll need. But I’m really excited to introduce her to the rest of our family! And I think it’ll be somewhat healing to my soul to be back home. ❤️

Thank you all for the continued prayers! Happy Thanksgiving!