Schizencephaly Awareness WeAreRare.org

It has been a long three weeks of healing for Noah and his femur. His pain has gotten much easier to deal. Of course that right hip is quite a booger. Always giving him some pain His Dr was not much help and disagreed with my plan to keep him on a blended diet and vitamin d supplements but since I made this decision for the first time He is gaining weight and looks amazing. A mother always knows! although these roads are not easy all the time I will always take the path I know in my heart is right for him. Dr's are wrong with this disorder and always have been. For 13 years they have been playing the guessing game with his life and now. .. I take control.

There are no words that mean as much as a smile from a special needs angel

So last night before it got dark I took Noah to his favorite pathway when I realized how cold it was getting and looked at Noah's little pockets on his jacket , I thought how silly that was but it still made me sad for a minute. Something so simple like unused pockets. It dawned on me that Noah's pockets have never been used.   Never really thought about The fact that Noah's never seen or used a pocket. Seemed so silly to think about. Then I approached the corner and saw this sunset. At that moment pockets did not seem so important. And the cold didn't feel so bitter.

Found a wonderful site offering great nutritional information for blended diets and overall good health.  Free Book can be downloaded here http://bestfoodist.com/

If you would like your Schiz kiddo story of the day/ week shared please let me know. I share on FB, the website, Our blog and groups. Just inbox me your story along with pictures you want us to share, Our Kiddo of the week is Andrew Baatz. His momma says " Andrew Douglas Adams, born March 18 2012, he was diagnosed July 26 2012 and was diagnosed with Bilateral Closed Lip Parietal Schizencephaly. He has Strabismus Amblyopia/duanes syndrome, also was recently diagnosed with Central Sleep Apnea and Insomnia. He has reduced sensitivity, hypotonia of his right side, and weakness of his right side. He just learned how to sit up just after his birthday!!!!:)

Noah suffered a femur break last week and we were discouraged to find the Dr had no solution to helping his brittle bone. After asking repeatedly for test and vitamin d supplements we were denied. So we decided on a holistic Dr and a blended food diet for boron and more supplements

This day was filled with such defeat.  Noah finally fell asleep around 4am after excruciating pain from his right leg We are praying for no surgery but it's not looking hopeful. We do not have a cause to the collapsed femur

Noah has always been a strong little boy, so of course seeing him with a pained look today made me call his dr right away to question if this was due to his dislocated hip. His Dr insisted it should wait and I should give him Motrin  Around 9:30 pm I looked at his knee and noticed it was bulging out. I immediately called 911.  5 hours later we have found due to his brittle bones his femur has literally caved inward and in most cases like these they would require rodding but due to Noah's small bones and brittle bones we are unsure what is going to happen at this point.  He is in a lot of pain and is resting at home now with Morphine awaiting his dr appointment in the morning.  I have shed many tears throughout this year. This year has been filled with many ups and downs. His personality has become a driving force in the house and his communication has begun to amaze me. But these hardships have become such a hard thing to sleep through at night.  I worry ab...

Watch "VIDEO0715.mp4" on YouTube This video hopefully will help other families understand What these injections are like and Why we do them. They will help with Noah's right arm and upper scoliosis issues

Noah's new bed arrived and at first he was very reluctant. However after playing elevator on it a few times and attaching  his iPad he is Happy as can be. It is just enough room for my bed in my room and his since he has never slept in his own room since his seizures began in 2003  even though he hasn't had another seizure since 2009 I like to keep a close eye. As mother's do