This is a blog about my journey with Noah and a rare disorder called Schizencephaly.
I share stories of other children, Families, and of course resources for families.
We Are RARE Is a non profit for Children and young adults suffering from a very rare neurological disorders like schizencephaly. Noah is 13 and missing over 40% of his brain .
It has been two weeks on Wednesday since Noah's spinal fusion and I will admit fear was a huge issue with this one.
Never did I imagine seeing my little boy look so banged up. His eyes were bloodshot, black and blue with a very swollen face.
The night before I was prepped with the fact Noah very well may not make it through or quite possibly require a trach for the rest of his life.. Scary and sobering all at the same time.
After xrays the day before we learned Noah's scoliosis had reached 94-97 degrees which is 40 degrees more than just a year ago which convinces me that scoliosis is indeed a huge part of schizencephaly. We waited until Noah was old enough to avoid multiple surgeries through the rest of his life....one and done! But holy cow scoliosis is hell. The constant fighting it, struggling to make our own braces, 6 years or positioning and holding off to avoid going back under the knife. It would appear that all that hard work made a difference and Noah will never n…
Sadie's Story A journey with Schizencephaly
by Tricia SchizencephalyAwareness Dennis on Monday, November 26, 2012 at 2:19pm · PublicFriendsFriends except AcquaintancesOnly MeCustomClose FriendsValencia Community CollegeSee all lists...THS, Titusville Floridawhite gate realtyNoah's CartThe Other Place Cafe'FamilyOrlando, Florida Areainner circle of trustLive Oak, Florida AreaHadley School for the BlindNoahsCart, INCMinnasota Vikingshttp://www.cnn.com/2008/US/02/21/NoahCart/index.htmlNoahscartDisability Detectives OwnerSt. Andrew Catholic SchoolBishop Moore High SchoolDr. Phillips High SchoolAcquaintancesGo Back The last few years I have met some of the most amazing people through Noah. Some people have become permanantly fixed in my heart. Some parents I feel so close to and love their children just like they are my own. Miss Sadie is one of those children.Thanks so much for letting me share your journey Mistie. Every story helps us all feel that much more sane. So many of u…