It's been a few days since I've blogged. I have been struggling with where I want this blog to go. I feel it needs a change, for my readers and for me. Where though, is the big question. Do I want to keep it as a "trail mix" type of blog? Or should I keep it as a "medical" type, or just strictly "family"/chiari malformation/craniosynostosis ~ and that's what I have decided to do. So, I guess it's not much of a change after all.
Over the last few weeks there has been a lot of change within the the cranio world out there. My good friend Amy Galm is the president of Capps kids. She has done a lot of work restructuring the site - http://www.craniocuties.com/, getting more families stories, finding out which neurosurgeons and plastic surgeons are the best, and spreading awareness. It is true amazing with what she had done for this community.
Over the last few weeks there has been a lot of change within the the cranio world out there. My good friend Amy Galm is the president of Capps kids. She has done a lot of work restructuring the site - http://www.craniocuties.com/, getting more families stories, finding out which neurosurgeons and plastic surgeons are the best, and spreading awareness. It is true amazing with what she had done for this community.
As many of you know, she is also trying to get an awareness walk set up for next fall in either New York City, or on Long Island. I am so excited about it all. If you feel the need to donate to the walk cause, there is a link on the upper left had side on my blog. Every single penny counts!!
We've been passing out awareness cards to the pediatricians offices to help spread the awareness. If the peds aren't up to speed, who else is going to help these poor children?
I know for us, it was our county health nurse who diagnosed both children. She would come to the house to weight and measure Carson and Cooper so I didn't have to take the to the office during peek RSV season.
Amy has also been busy designing window decals, bracelets
and calendars to get the word out.
It is truly amazing!
So while all of this NEW and up and coming exciting stuff is going on, I feel the need to keep blogging about the kids conditions to help spread awareness.
Please go and check out the look of the new site ~ http://www.craniocuties.com/
And if you "think" that a child you know has either craniosynostosis or plagiocephaly, please speak up and direct them to this link.
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