Thank you for visiting. Braydon was diagnosed with Craniosynostosis at his 2 month check-up. I hope that reading his story, it will help out another family going through a similar situation. Also Ethan was diagnosed with Craniosynostosis at 1 week old.

Thursday, October 28, 2010

Our heads are spinning!

We finally met with the Neurosurgeon today and was able to get a course of treatment.  Dr. Puccioni provided us with 2 options.

1.  Do the surgery using an endoscopic method or
2.  Do the surgery using the Posterior Cranio Vault Remodel method

Some may advertise the endoscopic method as less invasive, but according to the doctor it's not really the case.  He typically only does the endoscopic method on children 6 weeks old and younger and recommended the CVR method.

So that's what we chose.  What will happen is that they will make an incision from ear to ear and pull back the scalp.  They will then remove the skull and piece it together so that Braydon's brain can actually grow and his head will have a more round shape instead of the long and narrow shape it currently is.

Dr. Puccioni will work with Dr. Miller.  We meet Dr. Miller on Monday, November 8th and from there we will schedule the surgery.  Forgoing the surgery is not an option as Dr. Puccioni believes that there is a high amount of pressure on his head due to the fusion of the skull.  While we finally have a course of treatment, it's still going to be a long journey.  It looks like his surgery will be this year but after Thanksgiving.

Thank you to all of you for your love, support and prayers.  They haven't gone unnoticed and are greatly appreciated.

And Braydon says keep on smiling.


  1. Hi Erin,

    I'm Dave - you don't know me, but I work with your mom at Palisade. I'm glad you have been able to get a diagnosis and start treatment so quickly. You are right that it will be a tough journey but the only way to win is to move forward, every day! My wife and I went through something like this a few years back - our son was diagnosed with leukemia - but we fought the good fight and now our boy is perfectly healthy.

    So, we wish you all the strength that you will need to take care of your lovely little boy. You will get through this.

    take care,
    dave, marta, rosemary lyn, and the 100% cured krystof.

  2. Hi Erin. I am also working with your mother, Terri but I am based in Sydney Australia. Your mum sent me some beautiful pictures of Braydon. He is just precious and my heart melts just by looking at his smile. My favourite ones are Braydon in buble bee suits! (I hope he had great Halloween.)It is just hearbreaking to see helpless innocent child going through something like this. And I just wanted to say I will be praying for Braydon, you and all your family.
    Take care,