Schizencephaly Awareness WeAreRare.org

Crocheted Awareness Handmade Styles Style A Style B Style C Style D Style E

Please specify size and if you would like your child's ( loved ones name above the heart). Unilateral Bilateral sizes unisex small $21.00 USD medium $21.00 USD lg $21.00 USD xl $21.00 USD Small/name $21.00 USD medium w/name $21.00 USD large w/name $21.00 USD xl w/name $23.00 USD type unilateral bilateral please specify name in order

Since Noah's surgery things have been on highs and lows. His healing seemed to go quickly although after a few weeks I wanted to pull my hair out and regretted it I am very glad We went through with it now. However We are not out of the woods yet. As with all special needs mom's I always see a new obstacle in the horizon. Noah still is challenged by brittle bones. Recently rushed to the E.R for possible hairline fractures in the lower ribs from his scoliosis vest. We have yet to find any fractures but he remains fussy and cringing in pain. We can only pray This is going to pass and there is nothing too serious going on for him On a great note. His communication is doing amazing. Every day he teaches me new words he is working on. And continues to smile No matter What he goes through. He is the complete definition of a warrior.!

We made it through hip surgery and Noah wants to wish all his friends a very merry Christmas!!

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!