Schizencephaly Awareness WeAreRare.org

After a long recovery at Arnold Palmer Noah is being released. I am so glad Noah has been so strong throughout this entire deal. I was so very worried about this all for weeks and once again Noah had kicked Schizencephaly in the butt! Smiley boy is happy to be heading home after three days of pain and hospital. Mommy is very very happy.

Noah's right hip and right arm surgery took nearly 9 hours to  complete, but was a great  success After a year of be insisting on this surgery my fears were confirmed when the Dr got into the hip and found Noah's leg had twisted almost 90degrees. If they had not taken care of this all when we Did there was a great chance his pelvis and lower spine could have began crushing as well as the femur. Noah is definitely in pain but he Did amazingly and he teaches me more and more how strong willed we can be both mentally and physically. I am just so glad I get to hold him and kiss him more. I was so worried this surgery would be too much for his small body. Now get is healing up and having some bone broth to build his strength. We should be leaving the hospital tomorrow. We ccanot wait!

Good news, Dr B says since there are three surgeons working at the same time... Two on the hip and one on the wrist they think they can get it done within four hours. That is considering Noah does not have too much damage to the hip socket. Mommy is feeling much better

Since Noah's broken femur it seems we've just seen issue after issue arise. His neck is always tight and he has been prescribed diazapam for pain. His hip is completely out of socket bow making his pan levels high and sadly the only choice I see for him now is surgery. It is so scary since I have to compromise yet another time and subject him to go under,this time more than four hours. My biggest fear being of course his body is not strong enough to make it through surgery and more than that heal and get better quickly. No one can calm my next crazy as it seems I am in one endless panic attack until this happens. I lay awake and find myself pleading with the fear  to just give him more time in this world. I hate the fact he has been under so much and just when I think It's over a bigger surgery is around the corner. I absolutely hate this disorder. I hate every part of it. From day one worrying about what the future will hold and now today worrying about how much he has...

Shea Page says "  After my daughter Stellan was diagnosed with Schizencephaly, I wanted to help spread the word about the rare brain disorder. I began designing and making these heart shaped MRI image to help raise awareness. All proceeds will go directly to helping my daughter to get all the help and therapy she needs. Thank you for the support!" Selling customized Schizencephaly Awareness necklaces and key chains for $15! Send me a message with the MRI image you want me to use to custom make your order! All necklaces come in either black, green or purple ribbon, or a combination of! Looking forward to having you all wear these to help raise and spread awareness of such a rare disorder! https://www.facebook.com/GreyMattersSchizencephalyAwareness