Schizencephaly Awareness WeAreRare.org

Certainly we love sharing stories, pictures and updates about our day to day and our children in therapy... all the things that we're supposed to do and share when you're on social media. Building connections. But the truth is is that some of us do have high levels of anxiety PTSD stress and social anxiety over the simplest things that can be triggered by just about anything. A conversation can take a drastic turn,  social media is a great place to keyboard scream then block,  walk away and feel a little better about yourself.  Most special needs drama I see occur are from people that don't necessarily like to be upset or angry... Rather just may seem a little more fragile than another parent.  Even a simple outing can be triggering depending on the day before or the morning.  Hell you may even just get a trigger first thing when you wake up in the morning that sets up the environment for the rest of everyone else's moods.  And our energy's do co...

This year in May we celebrated Schizencephaly awareness day and noahs sixteenth birthday with two other Schizencephaly families at noahs favorite place....Island dolphin care.   So many great memories were made this year we've decided to take him back this August making sure we continue his ongoing interest in the program.

http://wearerare.org/2015/11/11/noah-and-the-ny-jets/ watch David Harris send a special message to Noah

25.00 donation to We are RARE sizes unisex youth small $21.00 USD youth medium $21.00 USD youth large $21.00 USD Adult small $21.00 USD Adult medium $21.00 USD Adult large $21.00 USD Adult xl $25.00 USD Adult xxl $25.00 USD

http://wearerare.org/2015/02/17/ethan-februarys-schizencephaly-super-hero-month/     Ethan! February’s Schizencephaly super hero of the month Posted on  02.17.2015   by  Tricia Dennis Parents Terrie and Larry Randolph write Ethan Wayne Randolph born in Dayton, Ohio on Nov 3, 2008 with Schizencephaly. We initially were told of his condition during an ultrasound at 7.5 mos gestation. At that time we were told the best thing we could do not only for Ethan and ourselves but also for society would be to go out of state and have a late term abortion. The Dr stated it would be for the best as he would most likely be nothing more than a burden and would never have a quality of life as he would most likely not ever speak, play, walk or anything “normal” babies and children do. To this day I can still vividly hear those words being spoke to our family. We knew Ethan was a special gift that was being given to us and we were going to keep and love him for as...

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

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