Cranio Warrior Addy - Craniosynostosis Awareness!

Craniosynostosis is the premature fusion of one or more sutures of the skull and affects approximately 1 in every 2500 children. The premature fusion causes a misshapen head, can inhibit your brains growth, as well as cause pressure resulting in vision, mental, eating, and sleeping impairments and developmental delays. It is imperative to catch craniosynostosis early as there are some cases that it can be corrected with a minimally invasive endoscopic surgery in the first few months of life. 

Addy's Story:
Adalynn was born with bi-coronal and lambdoid craniosynostosis.  Even though Addy's craniosynostosis was caught early, she was not a candidate for the endoscopic surgery since she had multiple sutures fused together.  So in January of 2014, when she was just over a year old, she underwent surgery to correct her craniosynostosis.  To correct it, her plastic and neuro surgeons had to make a zig zag cut from ear to ear across her head, break her skull, and insert a metal distraction device.  The distraction device then had to be turned twice daily for over a month in four different spots to slowly open her skull.  The device then stayed in for about 5 months so that the skull could grow back and solidify.  She then underwent another surgery to remove the device.  Along with craniosynostosis surgery, Addy has underwent several other surgeries due to her hydrocephalus and chiari malformation.  She has proven to be a strong little fighter - a true Warrior!  Words can not describe how proud we are of her with everything she has been through!  

Please help us raise awareness and say thank you to an amazing organization that helped us during this very difficult time!  Cranio Care Bears offered us a great amount of support and helped ease our minds about Addy's surgery.  They also sent us a hospital care package the week before surgery! To learn more about Cranio Care Bears, visit their website 
http://craniocarebears.org/ or their Facebook page at https://www.facebook.com/craniocarebearsinc.  If you do not want to purchase a shirt but still want to help, you can also make item or monetary donations.  If you visit their website, they have a list of items they send in their care packages.  At the end of the shirt sale, I will be sending them their check along with some items I have already compiled.  Let me know if there are an items you want me to send with it!

Thank you to everyone who has supported us throughout this journey so far! We could not have done it without all of you!

If you are not following Addy's journey and would like to, you can follow her Facebook page at https://www.facebook.com/craniowarrioraddy.