Schizencephaly Awareness WeAreRare.org

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 ...

I felt it was therapy to write this book and share with other how I have dealt with my mourning through the last 14 years in being a special needs mom  I hope others can understand that special needs diagnosis's can be like mourning a death but our stories remain open.  Please get a copy and share with others dealing with depression and guilt associated with any uniquely gifted child. https://www.createspace.com/4979806

We are RARE is excited about our new Super hero highlight on our website.  We welcome families to sign up their children and allow us to share stories and pictures for a month as our special family .  Your family member will also get a custom made super hero mask as they are joining an elite force of warriors Please sign up here.\ http://www.wearerare.org/rare-super-hero/

What a wonderful vacation swimming with the dolphins with Noah's schiz buddy Andrew

Noah is doing amazingly well on whole foods with no more formula. No more reflux and he's gone from 44 to 72 pounds

So it has been over two years since Noah began his blended diet journey. He started out at 44 lbs in 2012. The decision was scary and took a large bit of my pride knowing that this was the only solution that could possible keep him alive. Of course the surgery was easy enough. But I wanted to continue Noah's feed via mouth as well since it was important for me to keep Noah eating like he had and just adding healthier foods via the tube and liquids to keep him hydrated. The sent us home with his first formula called omni lite. That one was fine at first but Noah started with some vomiting after a few weeks so I asked the GI to find another one that would suit his sensitive tummy. Next was vital 1.5 oh boy did this one cause havok on his body... Within a few days this horrendous smell was coming from him. I smelled like straight up ammonia. That smell was so intense it was enough to gag me. The GI sent us to get tests to find out if his pancreas flwas failing when I kept insist...

Scoliosis surgery is looking like a MUST Me and Noah have been staying positive and talking all about it.