We have done a fair amount of research in all matters relating to craniosynostosis. Having a child born with the condition quickly opened oureyes into the world of cranio. We have pulled from sources such as Seattle Children’s, Cincinnati Children’s, and our own experiences with our daughter. We did our best to compile some explanations of what the surgeries are, what they entail, and when to expect them. Click any of the links below to learn more (they are listed in order by age of the child). The ones with * are ones that Zoey has been through.
Zoey had an appointment with her plastic surgeon and neurologist on Tuesday. They determined that her head is starting to tower again (growing mostly upward). This means it is time for another CVR and the dreaded forehead remodeling. Her surgery date is July 30th. No pre op consult or procrit injections. Just show up for a long day of waiting. We do need the regular clearance from Zoey’s pediatrician, but that’s all as far as a medical countdown. I’ll probably include a longer post later that describes the procedure in more detail. It’s called an anterior cranial vault reconstruction with a frontal orbital advancement (CVR/FOA). Here we go again.
We are working on an update that should be out sometime tomorrow…. just taking time with our amazing, beautiful, strong little girl…. and trying to catch some rest. We thank all the visitors that have come, that will come, that tried to come… as well as all of you for your love and support that you have expressed for Zoey. We are not home yet… but we will get there by His grace. More as and when we can.