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.

My little warrior is communicating!!  I just cried so hard.

In 32 days Noah will return to island dolphin care to meet his friends for the fourth time. He is so very excited. Each time we go I see all sorts of improvements and I know with him being so vocal lately he will be pushed even harder. This boy is my hero. Every day he teaches me how special life is. How we should never take anything for granted and mostly how amazing the mind is.

I cannot even express the feeling that I have knowing Noah is trying so hard to speak to us. He is saying "I love you", "More" and Yay as well as hi often now. Makes my heart dance. Noah says " Yay"! noah says "I love you" working on his Ipad blowing Kisses saying "more" signing "N" for Noah

Nothing makes mama more proud than seeing my little boy defy the odds and reach for the stars Never would I imagine the joy he would get from playing baseball. He makes my heart melt.

So exciting to meet people that support buddy ball baseball. Noah was such a flirt

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.!