Schizencephaly Awareness WeAreRare.org

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!!

Noah's femur is healing Well according to his Dr's however from looking at his X-ray myself and showing to a few friends all in the medical field there seems to be an agreement that to us it simply does no appear to be set right. I have to question at this point if it was set this way because the Dr's felt like this is as good as Noah's life will be or if his leg simply could not have tolerated any manipulation. At any rate I see a very long road ahead for my little man and I've decided (if He is able to travel considering How it was set) to. Get a second and third opinion. I am disappointed to say the least. I sometimes look at Noah and question why He was chosen to have to live this way. Not just that but How much can his body handle. In just this year we've been through five surgeries. It's got to be as wearing to his body as it is to my heart. I wonder How much longer I get to see him smile through all the pain and I worry what his future is going ...