Schizencephaly Awareness WeAreRare.org

We made it through hip surgery and Noah wants to wish all his friends a very merry Christmas!!

After a long recovery at Arnold Palmer Noah is being released. I am so glad Noah has been so strong throughout this entire deal. I was so very worried about this all for weeks and once again Noah had kicked Schizencephaly in the butt! Smiley boy is happy to be heading home after three days of pain and hospital. Mommy is very very happy.

Noah's right hip and right arm surgery took nearly 9 hours to  complete, but was a great  success After a year of be insisting on this surgery my fears were confirmed when the Dr got into the hip and found Noah's leg had twisted almost 90degrees. If they had not taken care of this all when we Did there was a great chance his pelvis and lower spine could have began crushing as well as the femur. Noah is definitely in pain but he Did amazingly and he teaches me more and more how strong willed we can be both mentally and physically. I am just so glad I get to hold him and kiss him more. I was so worried this surgery would be too much for his small body. Now get is healing up and having some bone broth to build his strength. We should be leaving the hospital tomorrow. We ccanot wait!

Good news, Dr B says since there are three surgeons working at the same time... Two on the hip and one on the wrist they think they can get it done within four hours. That is considering Noah does not have too much damage to the hip socket. Mommy is feeling much better

Since Noah's broken femur it seems we've just seen issue after issue arise. His neck is always tight and he has been prescribed diazapam for pain. His hip is completely out of socket bow making his pan levels high and sadly the only choice I see for him now is surgery. It is so scary since I have to compromise yet another time and subject him to go under,this time more than four hours. My biggest fear being of course his body is not strong enough to make it through surgery and more than that heal and get better quickly. No one can calm my next crazy as it seems I am in one endless panic attack until this happens. I lay awake and find myself pleading with the fear  to just give him more time in this world. I hate the fact he has been under so much and just when I think It's over a bigger surgery is around the corner. I absolutely hate this disorder. I hate every part of it. From day one worrying about what the future will hold and now today worrying about how much he has...

Shea Page says "  After my daughter Stellan was diagnosed with Schizencephaly, I wanted to help spread the word about the rare brain disorder. I began designing and making these heart shaped MRI image to help raise awareness. All proceeds will go directly to helping my daughter to get all the help and therapy she needs. Thank you for the support!" Selling customized Schizencephaly Awareness necklaces and key chains for $15! Send me a message with the MRI image you want me to use to custom make your order! All necklaces come in either black, green or purple ribbon, or a combination of! Looking forward to having you all wear these to help raise and spread awareness of such a rare disorder! https://www.facebook.com/GreyMattersSchizencephalyAwareness

We got to meet another Schizencephaly family last week at Disney downtown.  These two kids were full of giggles and super shy

Words cannot describe this . I am just one proud mama

first time Noah ever said a word!

https://www.createspace.com/4217860?ref=1147694&utm_id=6026&cp=70170000000bqKn&ls=Social_Media&sls=FB_Like Get your copy today. Already planning book two.

Noah's insurance would not cover vibration therapy so we found an awesome alternative .this mat is not for massage but specifically for whole body vibration and He loves it. It is proven by NASA to help increase bone mass for people that cannot weight bear. Super excited He loves it. https://www.youtube.com/watch?v=Qu7Wxvv6Z60&feature=youtube_gdata_player

https://www.youtube.com/watch?v=IrdmgSY-SbU&feature=youtube_gdata_player

Families if you are interested in taking part of this worldwide campaign please add me and I will get you into the group and help you get involved. This will require a lot of work but we know it will be a huge success. Schizencephaly Families we're going to attempt a monumental feat. And we need every family in every state to help with this coming years awareness day. We want to include every fam ily possible this year without them having to travel out of state. For next years Schiz awareness day we're going to going worldwide!!! We want to include any family that wants to participate... yes even those NOT in the USA!! Here is the 'general' idea. Every family that wants to participate should be on the schiz awareness map. Email Lori Barrett   schizawarenessmap@gmail.com or send her a message on FB to get added. If you're already on the map make sure you let us know you want to participate. The 'plan' ... two flags, one goal, raise awareness!! Two flags will...

to all families struggling with this disorder. I want you to know there is a huge network waiting for you. and with us all together, you will never walk alone.

This story won 2nd place in a short story contest for the Orlando sentinel and wesh 2 news out of over 5000 entries in 2002. I just found it tucked in my grandma's things and thought I would share.   I wake up to the crisp summer sunlight peeking through the window and the birds singing good morning. Noah is snuggled up next to me and as I look down a big smile spreads across his face as he twists my hair in his two fingers. "what do you want to do today little man?" Noah smiles and leaps out of bed he runs to the kitchen and pulls open the doors pointing to fresh fruit on the top shelf. I pick him up and help him reach it as he takes a sweet plum and puts it up to his mouth and says "delicious."  After breakfast he places his hand on my shoulder and yells "you're it!', as he bolts out the door. I stand there watching as he finds a yellow butterfly shooting by and he begins chasing all around the garden. Finally I run up to him whisk him int...

yes he does!

 In the past 5 years there has been one thing that has changed in my life more than any other. Finding other families on Facebook has been such a blessing in many ways and it has also brought me closer to the idea that none of us are safe in this world from the hurts that come along with disorders. I had never thought much about Noah ever leaving this world. I suppose initially when he was born and the Dr's reminded me daily he was on "borrowed time" It was a reality but at that stage he was doing so much better than I ever imagined I guess It was never a thought that stuck in my head to the degree it does now.  Even when Noah was seizing daily and we could not control them did I ever once think about death the way I do now. A silent fear that is my last thought each night. It is gripping.  As the last 5 years have passed and I have met families and mothers that have lost children facing the same disorder as Noah I cannot help but feel the thought is much more real tha...

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 ...

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

 I remember the day I found out I was going to have a child with special needs. I sat there after getting the news staring at the book "what to expect when you are expecting", I remember thinking that I hated that book now.  Parenting is hard enough but hearing the news you are going to be faced with even more challenges and issues makes it even more stressful. There is no timeline of events. When they will smile, laugh, crawl and talk. Those things become a reminder in the second book what to expect the first 12 months and you learn to hate that book as well.  The first few months I would go back and read in them and get discouraged knowing my child was not on track. He was not even smiling by 4 months. The dreams and aspirations I had became nothing but stress and worries compiled into a book that never existed for families like mine.  Suddenly friends and family begin to change. They do not quite understand what you deal with and you get annoyed over stupid...

As you know the Famous Liana's Ransom is taking our banner in hopes to share awareness around the world. Today he docked in NYC where our Banner is flying high.  What a great way to kick off Schizencephaly Awareness day tomorrow May 19th.  Don't forget to wear Purple and green and tell people why.  and share the word WWW.noahscart.org!