Blake and I are learning early that we can’t protect Julia from everything that life throws at her. We finally have met with the Neurosurgeon and he confirmed Julia’s diagnosis of Craniosynostosis. Craniosynostosis is when a suture in the skull close prematurely, and it can affect either one or multiple sutures in the skull. In our case, Julia’s left coronal suture closed prior to birth and it’s something that we’ve been monitoring since she was two weeks old.
The treatment is surgery. When she is 11 months old, she will require major surgery, a cranial vault reconstruction and a fronto-orbital advancement in order for her brain to grow. Although some have it earlier, our Neurosurgeon believes that the risks are decreased at 11 months of age due to the amount of bone and the fact she would need less blood transfusions.
I’ve started a blog that will follow through until Julia is 5, which is when we hope that she will be fully cleared by the Neurosurgeon. I’ve been lucky to have read through a few blogs with the same type of suture closure and surgery, and I want to continue that trend for other families. I’m going to go further in depth about Julia’s journey and what we expect in the upcoming months and years.
It’s been a few days since we posted. I was a little down about Milo’s regression with feeding, but of course, he’s shown in so many other ways how well he’s doing! He’s becoming a stronger crawler, he can pull himself to standing, and he’s walking along furniture now! PT and OT told us not to be surprised if he doesn’t walk until he’s 18 months old...(which could still be true!) but his progress is proving otherwise and it’s so wonderful to see him become stronger everyday!
For the first time in 9years my baby got made fun of for her “dent” in her forehead.. this was the absolute hardest thing i’ve ever gone thru and never really thought I’d have to explain it like this ❤️📚👼🏼 Craniosynostosis — is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses by turning into bone, thereby changing the growth pattern of the skull. #craniosynostosis#mybaby#eva#infant#stopbullying#bullies